tag:blogger.com,1999:blog-80970169249822983872024-03-17T20:00:00.588-07:00blog Wormwooda patient blogAlisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.comBlogger58125tag:blogger.com,1999:blog-8097016924982298387.post-72851315790162481772015-02-10T13:06:00.000-08:002015-02-10T14:51:03.512-08:00The IOM Report proposes new name: Systemic Exertion Intolerance Disease<span style="font-family: Arial, Helvetica, sans-serif;">I know I haven't blogged in over a year, but I had to write something when I saw this headline on a New York Times article:</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
<span style="font-size: x-large;"><a href="http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/" target="_blank">Chronic Fatigue Syndrome Gets A New Name</a></span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
And the proposed new name is...</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
<span style="font-size: large;">Systemic Exertion Intolerance Disease (or SEID)</span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-size: large;"><br /></span>
I was actually so happy I cried. I know it's not the best name ever, but anything is better than CFS.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
For those who don't like the new name because it doesn't describe the symptoms or experience completely, or doesn't do justice to our suffering, I don't know what to tell you. No one name could ever do that. Cancer doesn't. AIDS doesn't. It's not the name's job to tell the whole story. That's up to the culture around the name. And this is a good start to changing our story.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
Of course this is just a <i>proposed</i> new name by the Institute of Medicine (IOM). As I read in The <a href="http://www.occupycfs.com/2015/02/10/iom-report-card/" target="_blank">Occupy CFS</a> blog's IOM report card, the US Department of Health and Human Services still has to accept this definition.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
I had three main hopes for the IOM <a href="http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_Powerpoint.pdf" target="_blank">report</a>:</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
1) That they would recommend a new name (one that was not worse than CFS)</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
2) That post-exertional malaise (PEM) would be emphasized.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
3) That the two-day exercise test would be used somehow as a biomarker.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
All three hopes have been met.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
If you're unfamiliar with the two-day exercise test, also known as VO2 Max test, please read Cort Johnson's <a href="http://www.cortjohnson.org/blog/2013/07/30/busted-exercise-study-finds-energy-production-system-is-broken-in-chronic-fatigue-syndrome/" target="_blank">excellent blog post</a>, which explains why this is such an important test when it comes to distinguishing CFS from depression and deconditioning.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
I was afraid two-day exercise tests would be completely ignored. But they are actually recommended on page 46, "Objective Tests." <i>Objective tests (!)</i></span><br />
<!--[if gte mso 9]><xml>
<o:OfficeDocumentSettings>
<o:AllowPNG/>
</o:OfficeDocumentSettings>
</xml><![endif]-->
<!--[if gte mso 9]><xml>
<w:WordDocument>
<w:View>Normal</w:View>
<w:Zoom>0</w:Zoom>
<w:TrackMoves/>
<w:TrackFormatting/>
<w:PunctuationKerning/>
<w:ValidateAgainstSchemas/>
<w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid>
<w:IgnoreMixedContent>false</w:IgnoreMixedContent>
<w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText>
<w:DoNotPromoteQF/>
<w:LidThemeOther>EN-US</w:LidThemeOther>
<w:LidThemeAsian>JA</w:LidThemeAsian>
<w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript>
<w:Compatibility>
<w:BreakWrappedTables/>
<w:SnapToGridInCell/>
<w:WrapTextWithPunct/>
<w:UseAsianBreakRules/>
<w:DontGrowAutofit/>
<w:SplitPgBreakAndParaMark/>
<w:EnableOpenTypeKerning/>
<w:DontFlipMirrorIndents/>
<w:OverrideTableStyleHps/>
<w:UseFELayout/>
</w:Compatibility>
<m:mathPr>
<m:mathFont m:val="Cambria Math"/>
<m:brkBin m:val="before"/>
<m:brkBinSub m:val="--"/>
<m:smallFrac m:val="off"/>
<m:dispDef/>
<m:lMargin m:val="0"/>
<m:rMargin m:val="0"/>
<m:defJc m:val="centerGroup"/>
<m:wrapIndent m:val="1440"/>
<m:intLim m:val="subSup"/>
<m:naryLim m:val="undOvr"/>
</m:mathPr></w:WordDocument>
</xml><![endif]--><!--[if gte mso 9]><xml>
<w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
DefSemiHidden="true" DefQFormat="false" DefPriority="99"
LatentStyleCount="276">
<w:LsdException Locked="false" Priority="0" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Normal"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="heading 1"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 2"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 3"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 4"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 5"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 6"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 7"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 8"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 9"/>
<w:LsdException Locked="false" Priority="39" Name="toc 1"/>
<w:LsdException Locked="false" Priority="39" Name="toc 2"/>
<w:LsdException Locked="false" Priority="39" Name="toc 3"/>
<w:LsdException Locked="false" Priority="39" Name="toc 4"/>
<w:LsdException Locked="false" Priority="39" Name="toc 5"/>
<w:LsdException Locked="false" Priority="39" Name="toc 6"/>
<w:LsdException Locked="false" Priority="39" Name="toc 7"/>
<w:LsdException Locked="false" Priority="39" Name="toc 8"/>
<w:LsdException Locked="false" Priority="39" Name="toc 9"/>
<w:LsdException Locked="false" Priority="35" QFormat="true" Name="caption"/>
<w:LsdException Locked="false" Priority="10" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Title"/>
<w:LsdException Locked="false" Priority="1" Name="Default Paragraph Font"/>
<w:LsdException Locked="false" Priority="11" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" Priority="22" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" Priority="59" SemiHidden="false"
UnhideWhenUsed="false" Name="Table Grid"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="1" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="List Paragraph"/>
<w:LsdException Locked="false" Priority="29" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Quote"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 1"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 1"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 4"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 4"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" QFormat="true" Name="TOC Heading"/>
</w:LatentStyles>
</xml><![endif]-->
<!--[if gte mso 10]>
<style>
/* Style Definitions */
table.MsoNormalTable
{mso-style-name:"Table Normal";
mso-tstyle-rowband-size:0;
mso-tstyle-colband-size:0;
mso-style-noshow:yes;
mso-style-priority:99;
mso-style-parent:"";
mso-padding-alt:0in 5.4pt 0in 5.4pt;
mso-para-margin:0in;
mso-para-margin-bottom:.0001pt;
mso-pagination:widow-orphan;
font-size:10.0pt;
font-family:"Times New Roman";
mso-fareast-language:JA;}
</style>
<![endif]-->
<!--StartFragment-->
<!--EndFragment--><br />
<blockquote class="tr_bq">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: 14.0pt; mso-fareast-font-family: "Times New Roman";">PEM - Two cardiopulmonary exercise tests (CPETs) separated by 24 hours Demonstrate
marked inability to reproduce maximal or anaerobic threshold measures on the
second day (note that this test may induce severe exacerbation of symptoms in
these patients)</span></b></blockquote>
<span style="font-family: Arial, Helvetica, sans-serif;">From Recommendation 4 on page 25 of the <a href="http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_Powerpoint.pdf" target="_blank">report</a>:</span><br />
<!--[if gte mso 9]><xml>
<o:OfficeDocumentSettings>
<o:AllowPNG/>
</o:OfficeDocumentSettings>
</xml><![endif]-->
<!--[if gte mso 9]><xml>
<w:WordDocument>
<w:View>Normal</w:View>
<w:Zoom>0</w:Zoom>
<w:TrackMoves/>
<w:TrackFormatting/>
<w:PunctuationKerning/>
<w:ValidateAgainstSchemas/>
<w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid>
<w:IgnoreMixedContent>false</w:IgnoreMixedContent>
<w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText>
<w:DoNotPromoteQF/>
<w:LidThemeOther>EN-US</w:LidThemeOther>
<w:LidThemeAsian>JA</w:LidThemeAsian>
<w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript>
<w:Compatibility>
<w:BreakWrappedTables/>
<w:SnapToGridInCell/>
<w:WrapTextWithPunct/>
<w:UseAsianBreakRules/>
<w:DontGrowAutofit/>
<w:SplitPgBreakAndParaMark/>
<w:EnableOpenTypeKerning/>
<w:DontFlipMirrorIndents/>
<w:OverrideTableStyleHps/>
<w:UseFELayout/>
</w:Compatibility>
<m:mathPr>
<m:mathFont m:val="Cambria Math"/>
<m:brkBin m:val="before"/>
<m:brkBinSub m:val="--"/>
<m:smallFrac m:val="off"/>
<m:dispDef/>
<m:lMargin m:val="0"/>
<m:rMargin m:val="0"/>
<m:defJc m:val="centerGroup"/>
<m:wrapIndent m:val="1440"/>
<m:intLim m:val="subSup"/>
<m:naryLim m:val="undOvr"/>
</m:mathPr></w:WordDocument>
</xml><![endif]--><!--[if gte mso 9]><xml>
<w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
DefSemiHidden="true" DefQFormat="false" DefPriority="99"
LatentStyleCount="276">
<w:LsdException Locked="false" Priority="0" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Normal"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="heading 1"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 2"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 3"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 4"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 5"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 6"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 7"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 8"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 9"/>
<w:LsdException Locked="false" Priority="39" Name="toc 1"/>
<w:LsdException Locked="false" Priority="39" Name="toc 2"/>
<w:LsdException Locked="false" Priority="39" Name="toc 3"/>
<w:LsdException Locked="false" Priority="39" Name="toc 4"/>
<w:LsdException Locked="false" Priority="39" Name="toc 5"/>
<w:LsdException Locked="false" Priority="39" Name="toc 6"/>
<w:LsdException Locked="false" Priority="39" Name="toc 7"/>
<w:LsdException Locked="false" Priority="39" Name="toc 8"/>
<w:LsdException Locked="false" Priority="39" Name="toc 9"/>
<w:LsdException Locked="false" Priority="35" QFormat="true" Name="caption"/>
<w:LsdException Locked="false" Priority="10" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Title"/>
<w:LsdException Locked="false" Priority="1" Name="Default Paragraph Font"/>
<w:LsdException Locked="false" Priority="11" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" Priority="22" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" Priority="59" SemiHidden="false"
UnhideWhenUsed="false" Name="Table Grid"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="1" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="List Paragraph"/>
<w:LsdException Locked="false" Priority="29" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Quote"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 1"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 1"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 4"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 4"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" QFormat="true" Name="TOC Heading"/>
</w:LatentStyles>
</xml><![endif]-->
<!--[if gte mso 10]>
<style>
/* Style Definitions */
table.MsoNormalTable
{mso-style-name:"Table Normal";
mso-tstyle-rowband-size:0;
mso-tstyle-colband-size:0;
mso-style-noshow:yes;
mso-style-priority:99;
mso-style-parent:"";
mso-padding-alt:0in 5.4pt 0in 5.4pt;
mso-para-margin:0in;
mso-para-margin-bottom:.0001pt;
mso-pagination:widow-orphan;
font-size:10.0pt;
font-family:"Times New Roman";
mso-fareast-language:JA;}
</style>
<![endif]-->
<!--StartFragment-->
<!--EndFragment--><br />
<blockquote class="tr_bq">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: 14.0pt; mso-fareast-font-family: "Times New Roman";">The committee recommends that this disorder be renamed
“systemic exertion intolerance disease” (SEID). SEID should replace myalgic
encephalomyelitis/ chronic fatigue syndrome for patients who meet the criteria
set forth in this report.</span></blockquote>
<blockquote class="tr_bq">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: 14pt;">The term “chronic fatigue syndrome” can result in stigmatization and trivialization and should no longer be used as the name of this illness. </span></blockquote>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
I hope the new name will lessen the stigma of this disease both with doctors and the general public. But it's really with doctors and researchers that it's needed. It's commonly known most doctors don't take CFS seriously. And no wonder.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
<!--[if gte mso 9]><xml>
<o:OfficeDocumentSettings>
<o:AllowPNG/>
</o:OfficeDocumentSettings>
</xml><![endif]-->
<!--[if gte mso 9]><xml>
<w:WordDocument>
<w:View>Normal</w:View>
<w:Zoom>0</w:Zoom>
<w:TrackMoves/>
<w:TrackFormatting/>
<w:PunctuationKerning/>
<w:ValidateAgainstSchemas/>
<w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid>
<w:IgnoreMixedContent>false</w:IgnoreMixedContent>
<w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText>
<w:DoNotPromoteQF/>
<w:LidThemeOther>EN-US</w:LidThemeOther>
<w:LidThemeAsian>JA</w:LidThemeAsian>
<w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript>
<w:Compatibility>
<w:BreakWrappedTables/>
<w:SnapToGridInCell/>
<w:WrapTextWithPunct/>
<w:UseAsianBreakRules/>
<w:DontGrowAutofit/>
<w:SplitPgBreakAndParaMark/>
<w:EnableOpenTypeKerning/>
<w:DontFlipMirrorIndents/>
<w:OverrideTableStyleHps/>
<w:UseFELayout/>
</w:Compatibility>
<m:mathPr>
<m:mathFont m:val="Cambria Math"/>
<m:brkBin m:val="before"/>
<m:brkBinSub m:val="--"/>
<m:smallFrac m:val="off"/>
<m:dispDef/>
<m:lMargin m:val="0"/>
<m:rMargin m:val="0"/>
<m:defJc m:val="centerGroup"/>
<m:wrapIndent m:val="1440"/>
<m:intLim m:val="subSup"/>
<m:naryLim m:val="undOvr"/>
</m:mathPr></w:WordDocument>
</xml><![endif]--><!--[if gte mso 9]><xml>
<w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
DefSemiHidden="true" DefQFormat="false" DefPriority="99"
LatentStyleCount="276">
<w:LsdException Locked="false" Priority="0" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Normal"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="heading 1"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 2"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 3"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 4"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 5"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 6"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 7"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 8"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 9"/>
<w:LsdException Locked="false" Priority="39" Name="toc 1"/>
<w:LsdException Locked="false" Priority="39" Name="toc 2"/>
<w:LsdException Locked="false" Priority="39" Name="toc 3"/>
<w:LsdException Locked="false" Priority="39" Name="toc 4"/>
<w:LsdException Locked="false" Priority="39" Name="toc 5"/>
<w:LsdException Locked="false" Priority="39" Name="toc 6"/>
<w:LsdException Locked="false" Priority="39" Name="toc 7"/>
<w:LsdException Locked="false" Priority="39" Name="toc 8"/>
<w:LsdException Locked="false" Priority="39" Name="toc 9"/>
<w:LsdException Locked="false" Priority="35" QFormat="true" Name="caption"/>
<w:LsdException Locked="false" Priority="10" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Title"/>
<w:LsdException Locked="false" Priority="1" Name="Default Paragraph Font"/>
<w:LsdException Locked="false" Priority="11" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" Priority="22" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" Priority="59" SemiHidden="false"
UnhideWhenUsed="false" Name="Table Grid"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="1" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="List Paragraph"/>
<w:LsdException Locked="false" Priority="29" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Quote"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 1"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 1"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 4"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 4"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" QFormat="true" Name="TOC Heading"/>
</w:LatentStyles>
</xml><![endif]-->
<!--[if gte mso 10]>
<style>
/* Style Definitions */
table.MsoNormalTable
{mso-style-name:"Table Normal";
mso-tstyle-rowband-size:0;
mso-tstyle-colband-size:0;
mso-style-noshow:yes;
mso-style-priority:99;
mso-style-parent:"";
mso-padding-alt:0in 5.4pt 0in 5.4pt;
mso-para-margin:0in;
mso-para-margin-bottom:.0001pt;
mso-pagination:widow-orphan;
font-size:10.0pt;
font-family:"Times New Roman";
mso-fareast-language:JA;}
</style>
<![endif]-->
<!--StartFragment-->
<!--EndFragment--></span><br />
<div class="MsoNormal">
<span style="color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 13.5pt; mso-fareast-font-family: "Times New Roman";">“Less than a third of
medical schools include (CFS) in their curricula and only 40 percent of
medical textbooks contain information on it, the experts said.” - From <a href="http://www.washingtonpost.com/news/to-your-health/wp/2015/02/10/chronic-fatigue-syndrome-is-a-real-condition-not-a-psychological-illness-expert-panel-says/" target="_blank">The Washington Post</a>, today.</span></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
I just moved to a new city and needed a regular, local doctor. I didn't expect her to be knowledgable about CFS. I even expected her to be hostile towards me.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
That's right. I expected my doctor to not know anything about my disease and I expected her to be hostile to me about it. This is <i>horrible</i>. This is so messed up. And yet I've just come to accept it.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
Still, I had taken the two-day cardiopulmonary exercise test last year at the <a href="http://www.workwellfoundation.org/" target="_blank">Workwell Foundation. </a>When I got my results I thought that this would be like my golden ticket with new doctors. "See? Something is really physically wrong with me! Look!"</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
Yeah, I was wrong.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
I printed out my report and brought it with me to my first appointment with my new doctor. When she said my fatigue and post-exertional malaise were due to depression and deconditioning, I whipped out my results and said, "<i>Actually</i>..." Ha! Gotcha! I pointed to the part of the study that distinguished CFS patients from sedentary people and people with depression.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
She didn't seem impressed.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
At the end of the appointment, after I had told her about my symptoms and history and what I did all day, she said, <span style="font-size: large;">"I'm going to be honest with you, I think it's just depression."</span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-size: large;"><br /></span>
Well, at least she was honest. Completely wrong, but honest.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
I went back to her last week for a prescription refill. She asked if there was any improvement with my "fatigue problem" and I said no. Then she got mad at me. This has happened with another doctor before. This one said, <span style="font-size: large;">"You need to push yourself. You are making yourself a cripple!"</span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-size: large;"><br /></span>
No, I'm really, really not. And doctors should not be allowed to say that anymore.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i>
</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com14tag:blogger.com,1999:blog-8097016924982298387.post-63844036429515087642013-10-01T10:50:00.000-07:002013-10-01T10:50:05.317-07:00Twitter and Facebook<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGBo4Nd9MYZMZA3uNeEoWEmtYtFrnpzG_WMTfYUuA6MMst6ALiOjjrg3_DWBHQr3Cm6qoLb6JPB0UxspNHXjYe0D8UWPd1Q5xa9mKRzx775-vLjSyhW1x5_1EfkhGzwVSygqqoMLz-5d0/s1600/twitter+follow.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGBo4Nd9MYZMZA3uNeEoWEmtYtFrnpzG_WMTfYUuA6MMst6ALiOjjrg3_DWBHQr3Cm6qoLb6JPB0UxspNHXjYe0D8UWPd1Q5xa9mKRzx775-vLjSyhW1x5_1EfkhGzwVSygqqoMLz-5d0/s1600/twitter+follow.png" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">I finally created a Twitter account for the little things I want to say in between blog posts. Please follow me <a href="https://twitter.com/blogwormwood">@blogwormwood</a></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT4zXDxw9zx5AG28bFsJKx7OUSoEIxevYbQObbWCeo8ky4s1MGs8DqJF89lRtqy7XrbsnekAo5sgPrIokiw6czVtyTuGKjSHK9M7NjWNCJwV5vpjUi95oaBaQfzJKie4jj0d9hboJTDtQ/s1600/facebook+logo.gif" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT4zXDxw9zx5AG28bFsJKx7OUSoEIxevYbQObbWCeo8ky4s1MGs8DqJF89lRtqy7XrbsnekAo5sgPrIokiw6czVtyTuGKjSHK9M7NjWNCJwV5vpjUi95oaBaQfzJKie4jj0d9hboJTDtQ/s1600/facebook+logo.gif" /></a><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">I've also created a <a href="https://www.facebook.com/blogwormwood">Facebook page</a> where I'll link to new blog posts here and share posts from other blogs and news. There are already a lot of other good pages that do that, so it's mostly for new blog alerts. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Thanks! I'm working on a blog about my wedding and honeymoon that will hopefully be up in the next week. In the mean time I'll be catching up on all your blogs and trying to figure out what exactly the IOM contract is. </span>Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com3tag:blogger.com,1999:blog-8097016924982298387.post-36552675955472237302013-08-20T17:00:00.001-07:002013-08-20T18:36:38.220-07:00Am I not your donkey?<div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;">I have found the character who I identify </span><span style="font-family: Arial, Helvetica, sans-serif;">with </span><span style="font-family: Arial, Helvetica, sans-serif;">most in the Bible: Balaam’s Donkey. </span><span style="font-family: Arial, Helvetica, sans-serif;">I know this must seem confusing, but let me explain. The story of Balaam and the Donkey is an excellent metaphor for the trouble with invisible illness.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKkgLf_5wYh-lJwJCxLwJklgP4kh3-8pknYQrmGKk0lxKOaJRC2YTDbYv92C2na-U9WSJNxm5pSLEfE5_Ye8ng-smoaF_C2W7eEiMDTKnhqq8YP8_SxSgtUPQAl1y83VJLcqvLfVZoAQ8/s1600/donkey.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKkgLf_5wYh-lJwJCxLwJklgP4kh3-8pknYQrmGKk0lxKOaJRC2YTDbYv92C2na-U9WSJNxm5pSLEfE5_Ye8ng-smoaF_C2W7eEiMDTKnhqq8YP8_SxSgtUPQAl1y83VJLcqvLfVZoAQ8/s320/donkey.png" width="213" /></a></div>
<br /></div>
</div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Two years ago, when I was just starting to get into audiobooks, I got this idea that I'd listen to <a href="http://www.audible.com/pd/ref=sr_1_6?asin=B002UZZCJW&qid=1377035137&sr=1-6">the entire Bible</a>. Not for any religious reasons. Actually I think my main motivation was just to get better at Biblical trivia questions on Jeopardy. I'd also read a lot of "100 Books to Read before you Die" type lists and the Bible was usually on top. </span><br />
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">Of course, I didn't finish. I couldn't tell you how far I got. God help you if you lose your place in any audiobook, but especially The Old Testament. I gave up somewhere around First or Second Kings. Not because it wasn't a good listen -- it really was -- I think I just got tired of losing my place.</span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">I didn't have an extensive Biblical education, but I did recognize most of the stories. Many were new though, like <a href="http://christianity.about.com/od/Old-Testament/a/JZ-Balaam-Donkey.htm">Balaam and the Donkey</a>. One night, home alone, I'm sitting on my usual spot on the couch, listening to far away stories about King Balak and the Moabites </span><span style="font-family: Arial, Helvetica, sans-serif;">and the land of Canaan,</span><span style="font-family: Arial, Helvetica, sans-serif;"> when I suddenly start crying and experiencing this completely unexpected catharsis. Because there it was so neat and compact and allegorical: the story of my diagnosis with CFS. </span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;">Context: Basically, Balaam is traveling on an important errand, and he is riding a donkey. The trouble arises when God keeps putting an angel in their path, and only the donkey can see it. </span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<blockquote class="tr_bq">
<span style="font-family: Georgia, Times New Roman, serif;"> And the donkey saw the angel of the Lord standing in the road, with a drawn sword in his hand. And the donkey turned aside out of the road and went into the field. And Balaam struck the donkey, to turn her into the road. Then the angel of the Lord stood in a narrow path between the vineyards, with a wall on either side. And when the donkey saw the angel of the Lord, she pushed against the wall and pressed Balaam's foot against the wall. So he struck her again. Then the angel of the Lord went ahead and stood in a narrow place, where there was no way to turn either to the right or to the left. When the donkey saw the angel of the Lord, she lay down under Balaam. And Balaam's anger was kindled, and he struck the donkey with his staff.<span class="s1"><b> </b></span>Then the Lord opened the mouth of the donkey, and she said to Balaam, “What have I done to you, that you have struck me these three times?”And Balaam said to the donkey, “Because you have made a fool of me. I wish I had a sword in my hand, for then I would kill you.”<b> </b>And the donkey said to Balaam, “Am I not your donkey, on which you have ridden all your life long to this day? Is it my habit to treat you this way?” And he said, “No.”</span></blockquote>
<blockquote class="tr_bq">
<span style="font-family: Georgia, Times New Roman, serif;">Then the Lord opened the eyes of Balaam, and he saw the angel of the Lord standing in the way, with his drawn sword in his hand. And he bowed down and fell on his face. And the angel of the Lord said to him, “Why have you struck your donkey these three times? Behold, I have come out to oppose you because your way is perverse before me.<span class="s1"><b> </b></span>The donkey saw me and turned aside before me these three times. If she had not turned aside from me, surely just now I would have killed you and let her live.”<span class="s1"><b> </b></span>Then Balaam said to the angel of the Lord, “I have sinned, for I did not know that you stood in the road against me. Now therefore, if it is evil in your sight, I will turn back.” </span></blockquote>
<div class="p1">
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div class="p1">
</div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;">The moral is, listen to your donkey. Trust in your donkey when it has aberrant behavior. And if you're a doctor, give your patient the benefit of the doubt.</span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;">I don't know if that's the takeaway the writers intended, or what a minister or Biblical scholar would say, but to me it's clear enough. </span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;">Before I got sick, I was a straight A student. </span><span style="font-family: Arial, Helvetica, sans-serif;">I wasn't perfect, but, as my dad always used to say, I was "practically perfect."</span><span style="font-family: Arial, Helvetica, sans-serif;"> I was a good kid and a good teenager. Teachers loved me and I took it for granted they always would. I didn't drink or do drugs or get in trouble with the police. My parents didn't have to worry about me getting into college. </span><span style="font-family: Arial, Helvetica, sans-serif;">I had a pleasant attitude and </span><span style="font-family: Arial, Helvetica, sans-serif;">I did what I was supposed to. I had a good relationship with my parents, I didn't even mind being seen with them at the movies.</span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;">And then I got sick, but no one knew it. At first I thought I had mono. But after I was tested three times and the results were still negative, everything changed.</span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;">When I started missing school, sleeping through class, and getting bad grades, I lost my favored status with my parents and teachers. It was confusing at first, but I was so tired I didn't have time to think about it much. Looking back though, it's a little bit of a shock to think how quickly I lost their support, and seemed to have instantly switched from good kid to bad kid in their eyes. </span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;">None of my teachers ever took me aside and said, "Hey, is anything wrong?" or "I noticed a change in your grades and behavior, is everything OK?" There might have been a "This isn't like you" but if there was, it wasn't a kind and concerned comment, more of a reprimand.</span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;">There's no need to retell everything, I'm sure I've written about most of it in this blog by now. Just a few moments keep coming back to me: a morning when I was lying in bed, too tired to move or talk, and my mom, worried I was missing another day of school, yelling at me, "Why are you doing this to us?" </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">My dad, blowing me away by offering to take me to a concert in Chicago to see my favorite band, because he thought I was such a good kid that I deserved it. And then two months later when everything fell apart, laughing in my face when I naively asked if we were still going.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<i style="font-family: Arial, Helvetica, sans-serif;">"Why is Alison missing school and failing classes? I guess all teenagers go through a rebellious phase. It was bound to happen."</i><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">My chemistry teacher, in a bad mood, calling me out in front of the class: "And Alison! Sitting there with a glazed look in her eyes like she doesn't give a damn." I was surprised and hurt, I honestly thought I'd been paying attention.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<i style="font-family: Arial, Helvetica, sans-serif;">"Why is my donkey veering off the road? I guess she's finally lost her mind. It was bound to happen."</i><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">I wanted them to do what I couldn't, and what Balaam couldn't. I wanted them to think, "Hey, I know the doctor says there's nothing physically wrong with Alison, but maybe there's something there they can't see, because we know Alison, and she is not like this."</span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>"Hey, why does my donkey keep veering off of the road? She's never done this before. Well, she's a good donkey. Maybe she has a good reason." </i></span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;">Maybe it's asking too much of them. I know they think it is. I used to cry about these memories to them, and ask for an apology, thinking maybe I needed it to move on. But they still refuse to apologize, because they don't think they did anything wrong. "How could we know what the doctors didn't?" They did what they thought was best for me. They always have. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">I know it isn't good to dwell on the past, and I try not to. I do. But this experience, of finding out just how...<i>conditional </i>it all was -- it's hard to put behind you.</span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;">I wish that my parents, a teacher, or someone, had had so much faith in me that they would have said, "I don't care if the doctors say there's nothing wrong; there has to be, I'll keep going to doctors until I find the answer, because I know Alison and she is not like this."</span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;">And ultimately, I wish I had had that much faith in myself. But maybe that is too much to ask too. </span></div>
</div>
Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com4tag:blogger.com,1999:blog-8097016924982298387.post-91163248985929716902013-05-15T16:27:00.003-07:002013-05-15T16:28:15.569-07:00Health Update / Nasal VIPIt's been a while since I've posted. Ten months actually. I hope this blog isn't totally deserted. I want to try and write more again. I really do. But it's hard.<br />
<br />
Why have I not been blogging? Because I'm doing worse? Because I'm doing better? A little of both actually.<br />
<br />
The good news is, I feel pretty sure I can say that 2012 is the first year since I've been ill that was not worse off than the year before. It's a huge relief that I am not worse off now than I was a year ago.<br />
<br />
I think this is because of the MAF-314 yogurt I ate every day for 4-5 months. My digestion has been improved since then and I think that helps a lot with other symptoms. My KPS is still 40-50. I still can't cook or shop or work or anything. I still spend most of my time sitting around my apartment. But I'm in slightly less pain. I just feel a little more alive and a little less like I'm moving through water all the time. When it's hot, I can get up to open the window without really thinking about it. Last summer and the summer before, opening and closing windows was too much for me.<br />
<br />
I've been getting out more. It used to be if I went to a party, I'd have to spend the whole time sitting down in the comfiest place I could find. Now I can stand at parties for a long enough time to socialize. Not like I go to parties all the time, but it happens. It's not as rare as it was last year.<br />
<br />
But in some ways I am worse, and all those ways are mental. The last year I listened to more audiobooks than I read. I abandoned my blog. I tried to blog but I couldn't focus at all. Basically what I'm trying to say is I'm having trouble reading and writing. And organizing and decision making, which you need for writing.<br />
<br />
I don't know how you guys do it. I mean I don't know how people with CFS can write at all. I've read what they say they do. Writing in bed, writing with eyes closed, writing one or two sentences a day. But I'm still trying to write the way I used to when I was healthy. The results aren't as good but I can't imagine writing something coherent one or two sentences at a time. I know people do it. Maybe I will someday. But for now it's stream of consciousness.<br />
<br />
I'm grateful I even have a stream of consciousness right now. Most days my mind is totally empty. I guess if I were a taoist monk, this would be awesome, but since I want to write blog posts and have interesting conversations with people, this is not good.<br />
<br />
I've given my mind a jump start with some coffee. I'm jittery, but at least I'm writing. And I haven't eaten. I set a timer, giving myself thirty minutes to write this, and when it goes off, I have to eat. I always have to force myself to eat because digestion uses up all my energy and totally wastes me for the next five hours, when it's time to eat again anyway.<br />
<br />
I have ten minutes left before I have to stop writing, post this, and eat something. What else do I want to say? I guess I should say I'm getting married this summer to my boyfriend of four and a half years. I'm very happy. We both are. (Yay!) But I could also do a whole blog post about marriage/wedding related CFIDS issues. Another time. I also want to do a post about not having a job. There is so much I want to say, but I guess this is good for now.<br />
<br />
I had my annual visit with Dr. Cheney in March. Dr. Shoemaker's Nasal VIP study had just come out and Dr. Cheney was excited about it. He looked for and found CHVI in me which means I probably have CCSVI. Which basically means that for some reason, my blood isn't pumping normally through the veins or arteries in my liver and brain. The VI stands for venous insufficiency. Like the blood doesn't have enough momentum to go the direction it's supposed to be going so it slips backwards a bit. That's my understanding of it. I watched my echocardiogram, I saw a vein turn blue when it was always supposed to be red, or maybe it was the other way around. Turned red when it is always supposed to be blue? Either way, it's a good explanation as to why digestion is such a disaster and concentration is so difficult. Don't underestimate the importance of proper circulation.<br />
<br />
Dr. Cheney is starting a nasal VIP study of his own. It's just a nasal spray that widens the pulmonary artery. I think. Something like that. Sorry this is not more exact. Maybe I can go back and edit it later. The theory is if the artery is widened, the venous insufficiency could be fixed and cardiac output and energy could be improved. I was excited to partake in the study at first, but now that the time has actually rolled around I've decided to wait first and see how other people do. Maybe my body needs my veins and arteries to stay how they are. I'm in a good place right now, relatively speaking, and I don't want to take a chance on messing it up. A few years ago I would have tried any drug, risked what little health I had if I thought there was a chance of getting even a little better, but I think differently now.<br />
<br />
Times up. Time to nourish/poison myself. You know what I'm talking about.<br />
<br />Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com13tag:blogger.com,1999:blog-8097016924982298387.post-9886861846887884652012-07-10T14:54:00.001-07:002012-07-10T15:00:44.923-07:00Dream HouseToday is my first day back in LA after a week at my parent's house in Ohio during an intense heatwave. So far this year it's been cool in LA, I haven't had to turn on the A/C once. (I have a window unit in the living room and one in the bedroom.) Right now though I am really wishing I had central air. I am missing that about my parents house. Also their new front load washer and dryer. I don't normally do my own laundry (thanks Jim) but I did a very small load this morning out of necessity. I haven't put the clothes away yet, (because there is nowhere to put them!!) but I did fold them and hang them on the back of a kitchen chair right across from the dryer. The best thing about my parents new dryer is that the clothes come out cool to the touch. I know everyone else loves warm clothes right out of the dryer but I think it's gross. I hate touching hot clothes.<br />
<br />
So I am planning my dream house. There would be no stairs. Right now my apartment is on a hill so there's a big flight of stairs just to get to the street. Also, I live on the top half of a duplex, so as soon as you walk in the front door, more stairs. A house with no stairs would be perfect.<br />
<br />
My dream house is also right here in this neighborhood, which is lovely, but part of it's charm is it's in the hills, so a lot of houses have this stair problem. Another problem is this neighborhood is an hour's commute away from Jim's new job. So if we moved we'd want to move west, where it's flatter and more crowded and more expensive. Still, for a commute of a half hour, or 20 minutes, I think I might be willing to give up living in this wonderful neighborhood to live in a crummy one. As long as it's relatively safe and quiet. I do spend most days inside anyway, never leaving the apartment. If it meant having him home at 6:15 or 6:30 instead of 7:15 or 7:30, it'd be worth it to me, since I'm pretty much home alone all day while the rest of the world is at work.<br />
<br />
So my dream house would obviously have central air, so I wouldn't find myself in the situation I'm in now, sitting in front of a window with a warm breeze, rubbing ice cubes on myself to stay cool. Yes there's the window unit in the other room, which works fine as long as you combine it with the fan, but it's blocked by tons of boxes right now and I can't move them myself. It's been in the back of my mind for weeks, <i>"Make sure you ask Jim to move these boxes into the bedroom, because even though it's been fine so far with just the cross breeze from the windows, one day you'll wake up, it'll be as hot as an oven, and you'll need the A/C" </i><br />
<br />
Even though the window unit keeps me from dying of heat stroke on hot LA days, central air is still really the best, particularly for a sick person like myself who can't even regulate their own body temperature properly, I might as well be cold blooded. It was so nice never having to worry about the weather at my parent's house. And I think having the indoor temperature in the 70s instead of the 80s is just easier on the body, less draining.<br />
<br />
I know I am rambling a lot about temperature. But I have to add, even though this is California and it rarely gets below 40 or 30, the dream house has to have central heat. During the day it's not cold, but it does get cold at night and in the mornings. At night it's not such a big deal, there's blankets and sweaters, but the main problem is not having any heat in the morning in the bathroom. It's so cold I have to make the water scalding hot before I can even take a shower, which dries out my skin, and the vicious cycle continues...<br />
<br />
Musn't' forget, ideal house would have massive closets. Our closets right now are so tiny. I'd like to get rid of my dresser and just hang everything up except socks, bras, and underwear.<br />
<br />
Ideal house would also have no downstairs neighbors or shared walls. And it would have to have a yard. Front or back, I'm not picky, though back would be ideal. Somewhere to sit outside in the mornings and afternoons and watch the birds and the squirrels and feel the sun. I'm usually not well enough to drive to a park, ok, I'm rarely well enough to drive to a park, so a yard is my only real shot from not being cut off from nature completely. Five years ago I wouldn't have thought this was so important, but since I've been home all day, alone all day, day after day, I've really come to appreciate the change of scenery I can get in the back yard.<br />
<br />
The dream house would also be an old style Spanish Craftsman house built in the 20s or 30s, but renovated with new plumbing and insulation. I'd like the kitchen cabinets and the bathroom tile not to be ugly but I'll take what I can get. Beautiful tile would be nice though. And of course I'd get one of those new washer dryer sets my parents have. And I also need a more comfortable couch! And a more comfortable desk and desk chair for writing blogs. Right now I'm sitting at a desk chair I found in the garage of my last apartment. Someone was throwing it away, but I thought it was perfectly fine. And it was then, but now I need something a lot better. My back gets so sore so easily. My desk is from IKEA, it's ok I guess. A little wobbly, though I put it together the best I could, back when I could still do stuff like that.<br />
<br />
I love the built in shelves a lot of the houses around here have. We have a built in book shelf here which is nice, but it's not pretty or anything, my landlord built it in the 90s as part of the stairs that go to the skylight which opens to the roof I never go on because there's no parapet. And it's hard to climb up there. Also, my landlord thinks he locked me out. Actually he just closed a padlock around a chain that doesn't connect to anything.<br />
<br />
Last night I felt like going to a bookstore. We went to Barnes and Noble. Jim was going to buy a book, but they didn't have it in stock, so we left with no books. I saw a book I was interested in (Zoobiquity: What Animals Can Teach Us About Health and the Science of Healing!) But I didn't buy it because I knew I'd be happier reading it on my Kindle. As I put it back on the table I had this eerie vision of my future self, showing some guests into my future home. We enter a room with beautiful wooden bookshelves, but instead of books they're decorated with vases and framed photos and such things. "Where are all your books?" the man asks, clearly assuming we have none. He is an academic type, books are important to him, but he probably doesn't own a kindle, or a television. "On my iPad!" I reply, smugly. Funny, because I don't even have an iPad. But I guess "On my Kindle!" just didn't have the same ring of arrogance.<br />
<br />
Though come to think of it, I would want to get an iPad if I switched to DirecTV, like my parents just did. Now they can use their iPad as a remote control, which is just awesome. Remote controls are terrible, so old fashioned. Half time time you push the buttons and the buttons don't work. We need touch screen remote controls. (You can control everything from your iPad but the volume, but I'm sure there's away around this, like having your TV speakers as part of your AirTunes connection...)<br />
<br />
While I'm at it, since this is my dream house, it should have a saltwater pool (chlorine free!) and hot tub. Fruit trees: figs, oranges, lemons, pears, grapes, grapefruits, persimmons. And a gardener. A guest room with a bed for guests. Also, a grand piano, and a car elevator.<br />
<br />
Next post(s): other things that have been on my mind: "careers" "children" and how much better I slept and woke up when I was on the MAF yogurtAlisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com9tag:blogger.com,1999:blog-8097016924982298387.post-73197847337990843962012-06-28T17:59:00.000-07:002012-06-28T18:03:46.564-07:00afternoon naps/Cortef/nagalase<br />
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;">things conducive to sleeping in the afternoon:</span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 12.0px;">
<span class="Apple-style-span" style="font-size: small;"><br /></span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;">slow blues music</span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;">slow hot weather</span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;">sleeping cats</span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;">chronic fatigue syndrome</span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 12.0px;">
<span class="Apple-style-span" style="font-size: small;"><br /></span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;">it was just by crazy random happenstance they all call came together today.</span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;"><br /></span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;">I want to get back to blogging more. I was posting less because I was getting worse and I didn't have the energy to spare. Then I started feeling a little better and I didn't want to be reminded that I had a blog specifically for my bad health. </span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;"><br /></span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;">I think my feeling better was a combination of the MAF 314 (GcMAF yogurt) and starting Cortef. Dr. Cheney prescribed it to me at my visit at the end of February. He said he usually doesn't prescribe it because it usually doesn't work...but it's helping me. Dosage varies but it's been between 15-30 mg a day. </span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;"><br /></span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;">So I am better, but not enough to bump my KPS up or anything. I still couldn't live on my own. I still can't go shop for food and cook myself a meal. But, while anytime last year I would have called myself housebound, it doesn't seem right anymore. I've been leaving the house at least once a week, sometimes two or three times. Sometimes I drive myself. But if I try and drive out of my neighborhood, I crash from the stress of driving, especially if the traffic is bad. </span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;"><br /></span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;">People have been asking about my nagalase, if it went down on GcMAF. It has. It started out at 2.2 and even though I didn't feel any different on the sublingual GcMAF, nagalase went down to 1.3. Then I started the MAF 314 and on January 25 it was at .98. .32-.95 is normal. So Dr. Cheney took me off the MAF 314 because he said people experienced crashes when their nagalse got too low. </span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;"><br /></span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;">I took a nagalase test after I went off the MAF to see where it was and if it would go back up, but the test I took was the wrong one. So they sent me a new test but I won't be able to get the blood drawn for another few weeks, so it will probably be two months before I know the results. </span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;"><br /></span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;">I think I have made a pretty good life for myself, confined to the apartment. A pretty good housebound life. Housebound, even though I get to leave sometimes now. To hang out at friends houses, eat at restaurants, even saw War Horse (the play). Almost didn't make it to War Horse though, I was so tired. </span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;"><br /></span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;">All day in my head I've been saying to myself "I'm so tired" Well it's more like "Oh, Alison, I'm soo tired" I'd say it to someone else but there is no one here to say it to. And I'm not gonna text my mom or my friend just to tell them I'm tired. I wanted to say it on Twitter or Facebook, but instead I just said I was so excited for the premiere of Louie tonight on TV. </span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;"><br /></span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;">I signed up for an online class in music theory. This was the first week and I got all my assignments done. It was the first week so they were pretty easy. Eleven weeks to go. I've always wanted to take music theory. I've also always wanted to go back to school, brick and mortar school. College. But these past few years I've felt I couldn't even take an online class. But with the improvements from the MAF (which I think are wearing off actually now that I'm not taking it anymore) and the Cortef, I thought I could handle it. So far so good.</span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;"><br /></span></div>
<div style="font: 10.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span class="Apple-style-span" style="font-size: small;">I am really excited for this slight improvement. But it took me a few weeks to realize how slight it was. But it's something.</span></div>Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com9tag:blogger.com,1999:blog-8097016924982298387.post-66211384034589397242012-04-06T15:56:00.001-07:002012-04-06T15:56:35.797-07:00It seems they only lie in pairs and sleepHurray for backyards and sunny days!<br />
<br />
My first post from my phone using the Blogger app<br />
<div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVUpO6YoPZcyu4v3qYaqBwjEDSs9ewnEyp6E8fcdYAuJNmfoWT46Iq0SzhgR1t4Xj_pYTZAwYj_FddSkwpp2mXXZov-Fvu2LxtX9VnTgU27wJL7HUsRCNv4YlUrojMFORtxlXWVoRKPwE/s640/blogger-image-2064623144.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVUpO6YoPZcyu4v3qYaqBwjEDSs9ewnEyp6E8fcdYAuJNmfoWT46Iq0SzhgR1t4Xj_pYTZAwYj_FddSkwpp2mXXZov-Fvu2LxtX9VnTgU27wJL7HUsRCNv4YlUrojMFORtxlXWVoRKPwE/s640/blogger-image-2064623144.jpg" /></a></div>Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com5tag:blogger.com,1999:blog-8097016924982298387.post-64390460725963589632012-04-02T14:12:00.002-07:002012-04-02T14:17:39.794-07:00The Best Revenge<span style="color: rgb(34, 34, 34); font-family: Arial, sans-serif; font-size: 13px; line-height: 18px; text-align: -webkit-auto; ">One thing about being stricken with a terrible disease at a young age: on those sleepless nights, when you find yourself suddenly plagued with guilt while thinking about those kids you were unconsciously cruel to in childhood, you can at least rest safe in knowing that no matter where they are or what they are doing now, it is almost certain that their lives turned out better than yours. </span>Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com1tag:blogger.com,1999:blog-8097016924982298387.post-34952856507051227082012-02-15T17:44:00.000-08:002012-02-16T14:13:05.701-08:00What I really do<div><span >I made this. Click on it for a larger version.</span></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyQBQkguzZfh9Xb9UtyJMmfKvCR_phz86dTVAtf9obGdvohYtBBIb6LUgEyln4ZNC6lWRDTt7IfKjxHtBLNPnTTI5sq4i9zadwkUApZVmeuAYjetfI3cdbdrcVFUGi9Crg2B3blCoWDME/s1600/CFS+Meme.jpg"><span ><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 309px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyQBQkguzZfh9Xb9UtyJMmfKvCR_phz86dTVAtf9obGdvohYtBBIb6LUgEyln4ZNC6lWRDTt7IfKjxHtBLNPnTTI5sq4i9zadwkUApZVmeuAYjetfI3cdbdrcVFUGi9Crg2B3blCoWDME/s400/CFS+Meme.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5709604649108278578" /></span></a><div style="text-align: center;"><div style="text-align: left;"><span >Maybe, like me you've seen <a href="http://knowyourmeme.com/memes/what-people-think-i-do-what-i-really-do">a lot</a> of these memes on your Facebook page. First it was directors, then photographers, then wedding photographers, then geologists. Most of them are for professions, but they are branching out. Yesterday I saw one for Mormons. The idea is to show all these different stereotypes held by others, and then in the last frame show how mundane the job really is with a picture of someone doing paperwork or sitting in front of a bunch of monitors. </span></div><div style="text-align: left;"><span ><br /></span></div><div style="text-align: left;"><span >I don't have a job or a profession. Unfortunately, the closest thing I have is CFS. And CFS was really perfect for this template because everyone has misconceptions of it and it's a major problem.</span></div><div style="text-align: left;"><span ><br /></span></div><div style="text-align: left;"><span >The final frame is supposed to be the punchline, the funny, mundane reality of the seemingly glamorous profession. I couldn't do that. Maybe there's someone who can, but I couldn't. I couldn't think of anything to put in the "What I actually do" square that would be funny. And I can't try to seriously sum up the reality of CFS with one image. So I left it blank. And then it looked too white and cheery to I made it gray. I'm hoping it at least in conveys some sort of sense what everyone with CFS knows, that what it really does is steal your life away. </span></div><div style="text-align: left;"><span ><br /></span></div><div style="text-align: left;"><span >I would like to explain my thought process behind some of the other images before I offend my friends, parents, doctors, and society.</span></div><div style="text-align: left;"><span ><br /></span></div><div style="text-align: left;"><span >Society</span></div><div style="text-align: left;"><span >The idea that CFS is not a serious disease. That it's the yuppie flu. That it's something only upper class white women get and they make it up so they don't have to work and can spend all day in yoga classes instead. I am thinking specifically of something erv said. Erv is a science blog that I read during the whole XMRV thing to ge a different perspective. The comments section was always a circus and a battleground. Offended PWC's vs. erv and her readers. Someone left a comment trying to make the point that CFS was a serious disease. <a href="http://scienceblogs.com/erv/2010/06/xmrv_and_antiretrovirals_1.php">Here</a> is how erv, a grad student researching HIV, replied, "Those poor, poor CFSers with their yoga classes and homeopathic 'physicians' and computers and internet" (Comment 144)</span></div><div style="text-align: left;"><span ><br /></span></div><div style="text-align: left;"><span >Doctors</span></div><div style="text-align: left;"><span >Sadly, I think this one is pretty accurate. Certain CFS specialists excluded, there are still too many doctors who do not think CFS is a real disease, and that the people who think they have it actually have depression. The fact is, as I wrote in my last post, doctors don't treat me like I have CFS, they treat me like I have depression, which is no help at all. They think it is something I will snap out of in a few years and are surprised year after year when I get worse. </span></div><div style="text-align: left;"><span ><br /></span></div><div style="text-align: left;"><span >Friends</span></div><div style="text-align: left;"><span >Obviously, the closer someone is as a friend, the better idea they will have of the reality of your disability. But how many of us, when first getting our diagnosis, have told a friend we have Chronic Fatigue Syndrome, and heard them answer "I think I have that too" or "We all get tired"or "You just need some coffee!" etc. Because of the name, people think it just means we have normal fatigue like everyone else.</span></div><div style="text-align: left;"><span ><br /></span></div><div style="text-align: left;"><span >Parents</span></div><div style="text-align: left;"><span >By now my own parents know that my problem goes beyond not being a morning person. But still, when I was looking for an image to use for parents, this one just resonated with me. It describes my experience in high school when day after day I could not get up for school and my parents, who like me, didn't know what was wrong, tried everything to get me out of bed. That was more than ten years ago. But still, when I go home to visit, this is how I feel I look to them. They want me to do everything on their time schedule. I have felt guilty over and over again because I could not get up early enough at the time they set to go have lunch with grandma. "Come on, get up, don't disappoint grandma!" We are working on talking about it though and we are getting better.</span></div><div style="text-align: left;"><span ><br /></span></div><div style="text-align: left;"><span >I</span></div><div style="text-align: left;"><span >This is actually pretty accurate for me. I am mostly housebound, but not bedbound, so I pretty much spend all my time sitting or lying on the couch. And I am highly dependent on my laptop. For some more severe people it would be a person lying in bed. I said in my last post that I told my doctor, "I do nothing." That's what it feels like. She asked if I went to school or worked or volunteered and I can't do any of these things. And what else is there to do that seems like a real thing besides raising children? So in my dark moments I feel my life is being wasted and there's nothing I can do about it. Which is true, but on the other hand not entirely true. I have my boyfriend and my friends and my family who all make me so happy. And even though I can't write as much as I used to, I can still write a bit, and I can still read most of the time. Little things like that. I have to remember they are meaningful too. </span></div><div style="text-align: left;"><span ><br /></span></div><div style="text-align: left;"><span >So anyway, there is is. Please feel free to share if you think it's entertaining or useful. </span></div><div style="text-align: left;"><span ><br /></span></div><div style="text-align: left;"><span >When I was making it I noticed that there is no need for a square called "what my boyfriend thinks" because he lives with me and sees me every day, so he knows better than anyone. I know I could do a better job trying to help the rest of the people in my life understand. But it's something I'm not very good at. Sometimes I want to give everyone the impression that I'm better than I am, mostly people my age, so they'll be more likely to stay friendly if they think I'm young and energetic like them and able to do the things they do, even if I'm not. Sometimes with my friends and family I say I think I can do things I know I can't do because I don't want to disappoint them. And sometimes I am just being self-delusional and really think I can do things I can't do. </span></div><div style="text-align: left;"><span ><br /></span></div><div style="text-align: left;"><span >It's a complicated situation. But one thing I know is that a lot would change if only this disease had a different name. </span></div><div style="text-align: left;"><br /></div></div>Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com11tag:blogger.com,1999:blog-8097016924982298387.post-12433881819240407072012-01-12T00:46:00.000-08:002012-01-12T02:15:31.596-08:00Update/Antidepressant rantIt's been three months since my last post. <div><br /></div><div>Since then I went off the sublingual GcMAF and started MAF 314, which is the GcMAF yogurt. </div><div><br /></div><div>I took my first dose on Halloween, I don't think I've missed a day. Since then I've felt better, I've felt worse, I've felt better, I've felt worse.</div><div><br /></div><div>I thought for awhile my skin looked better but now I'm not so sure. I think my tongue looks healthier.</div><div><br /></div><div>I think my digestion is better. Lately I've even tried eating chicken and fish again. I stopped eating meat regularly then totally a couple years ago because I didn't have enough energy to digest it. Every time I ate meat I'd end up feeling woozy, then quickly falling into a thick, dreamy sleep with my stomach churning, and I'd wake up suddenly two hours later.</div><div><br /></div><div>I'm hoping if I can eat meat more often I might have a little more energy. I've been eating eggs for protein but I think this will be better.</div><div><br /></div><div>*</div><div><br /></div><div>While I was in Ohio for Christmas, I got called for jury duty in California. This happend a few years ago. I went to my old internist, Dr. M, who's office is just a 5 minute drive. He was happy to write my medical excuse even though I hadn't been to his office in a few years. Unfortunately when I asked him this time he said he didn't feel comfortable writing it since he hasn't seen me since. Which is understandable. But also so backward. I haven't been in to see him because it's not worth the effort. There hasn't been a cure for CFS in the last two years. He can't think I'm all better now?</div><div><br /></div><div>So I called my "new internist", Dr. G. I switched to her because I felt Dr. M didn't really get CFS. On my first visit Dr. G made me feel like she really got it and I remember thinking she didn't say any of the typical wrong things. But on subsequent visits she did. And now going to her is worse than going to Dr. M, just a slightly longer drive. </div><div><br /></div><div>Dr. M couldn't see me until next month, but Dr. G's office said it was a $25 charge for jury duty forms and I could come in anytime the next day. I considered driving myself but decided pretty quickly I shouldn't try. I thought about asking someone but before I could think too much Jim offered to drive me during his lunch break. </div><div><br /></div><div>Jim never made it back to work. It took a long time to see the doctor. </div><div><br /></div><div>She comes in with my chart. "So how are you doing? Are you back at USC?"</div><div><br /></div><div>"No, I haven't been for years"</div><div><br /></div><div>"So what are you doing are you working?"</div><div><br /></div><div>"No"</div><div><br /></div><div>"So...what are you doing?"</div><div><br /></div><div>"Nothing" </div><div><br /></div><div>It's not an easy thing to say, that you are doing nothing, but it's the truth. And I am angry, because even though I haven't seen her in a year, she has my chart, she recognized me in the waiting room, she knows I have CFS, but she still doesn't get how bad it is. </div><div><br /></div><div>It reminds me of a scene Dorothy Wall wrote about. She went to see her doctor for something, a doctor she'd been to before. She was very sick with CFS. It was a huge effort for her to get to the appointment, to make it through the appointment. She tells the doctor about her symptoms and it seems like she is listening. And then when the appointment is over the doctor recommends some play she saw. "You should see it." And she says "Doctor, I have chronic fatigue syndrome, I don't go to plays."</div><div><br /></div><div>I loved that line when I first read it. You tell her Dorothy! I like to imagine it made this big impact on the doctor. But I think if it had been me to say it the doctor would just roll her eyes behind my back and think "what a dramatic bitch."</div><div><br /></div><div>Dr. G says "...and you were seeing some 'famous specialist?'"</div><div><br /></div><div>I almost didn't know what she meant. But I told her yes, I was still seing Dr. Cheney and that lately I had tried GcMAF, and now was trying GcMAF in yogurt form. She didn't ask what GcMAF was, which was a relief.</div><div><br /></div><div>She asked if I was on any antidepressants and I said no. I remembered she asked this last time. I told her I didn't have any interest in going on antidepressants.</div><div><br /></div><div>"But you are so young, it's such a shame you...you should be out doing things..."</div><div><br /></div><div>This is true, I think. It is a shame. It is a major shame. But please, please don't say it like that. It sounds like you are saying it is my fault. Like this is my choice. And I have tried so much. I've tried almost everything. I hate that she says this. </div><div><br /></div><div>A neurologist specializing in sleep disorders said something similar to me once. First, she said she couldn't do a test on me because I was sleeping too much during the day and not enough at night and they didn't run the sleep clinic during the day. Then she said "Chronic fatigue is a <i>syndrome</i>, it's not a disease." She said something about how it can be corrected by things like changing your sleeping pattern and when she saw I was geting upset she said "You are a young girl. Pretty girl! Smart! Good Height. There is no need for this." Then I cried some more because I came all this way, she had been recommended so highly, and how could she help me if she thought that this fatigue was just some behavior pattern I'd adopted because I had low self esteem? Also I cried because I was sleep deprived and for me it was like the middle of the night. </div><div><br /></div><div>Today I tried to sum up again for Dr. G how I have already tried six or seven antidepressants over five years and all that time I just got worse. Some of them made me sleep more. Some of them didn't make me sleep more. Some of them made me a little happier when I was awake. But none of them helped with my real problems, that I was tired all the time and needed to sleep 12-17 hours a day. And that I couldn't concentrate anymore. That I couldn't do math or write papers anymore. No antidepressant ever helped with that. </div><div><br /></div><div>But she still said I should try the new SNRI's like Cymbalta. I said I just didn't see the point of going through that again. I'd never heard anything about Cymbalta helping with post-exertional malaise or anything. </div><div><br /></div><div>Oddly enough, I looked up Cymbalta in Wikipedia tonight just before I wrote this and it said </div><div><br /></div><div>"<span style="font-family: sans-serif; font-size: 13px; line-height: 19px; text-align: -webkit-auto; background-color: rgb(255, 255, 255); ">As of January 11, 2007, Eli Lilly is currently enrolling patients for </span><a href="http://en.wikipedia.org/wiki/Double-blind" title="Double-blind" class="mw-redirect" style="text-decoration: none; color: rgb(11, 0, 128); background-image: none; background-attachment: initial; background-origin: initial; background-clip: initial; background-color: rgb(255, 255, 255); font-family: sans-serif; font-size: 13px; line-height: 19px; text-align: -webkit-auto; ">double blind</a><span style="font-family: sans-serif; font-size: 13px; line-height: 19px; text-align: -webkit-auto; background-color: rgb(255, 255, 255); "> Phase II and Phase III trials of Cymbalta for the use of </span><a href="http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome" title="Chronic fatigue syndrome" style="text-decoration: none; color: rgb(11, 0, 128); background-image: none; background-attachment: initial; background-origin: initial; background-clip: initial; background-color: rgb(255, 255, 255); font-family: sans-serif; font-size: 13px; line-height: 19px; text-align: -webkit-auto; ">chronic fatigue syndrome</a><span style="font-family: sans-serif; font-size: 13px; line-height: 19px; text-align: -webkit-auto; background-color: rgb(255, 255, 255); "> (CFS) in conjunction with the </span><a href="http://en.wikipedia.org/wiki/University_of_Cincinnati" title="University of Cincinnati" style="text-decoration: none; color: rgb(11, 0, 128); background-image: none; background-attachment: initial; background-origin: initial; background-clip: initial; background-color: rgb(255, 255, 255); font-family: sans-serif; font-size: 13px; line-height: 19px; text-align: -webkit-auto; ">University of Cincinnati</a><span style="font-family: sans-serif; font-size: 13px; line-height: 19px; text-align: -webkit-auto; background-color: rgb(255, 255, 255); ">.</span><sup id="cite_ref-27" class="reference" style="line-height: 1em; font-family: sans-serif; text-align: -webkit-auto; background-color: rgb(255, 255, 255); "><a href="http://en.wikipedia.org/wiki/Duloxetine#cite_note-27" style="text-decoration: none; color: rgb(11, 0, 128); background-image: none; background-attachment: initial; background-origin: initial; background-clip: initial; background-color: initial; white-space: nowrap; background-position: initial initial; background-repeat: initial initial; ">[28]</a></sup><span style="font-family: sans-serif; font-size: 13px; line-height: 19px; text-align: -webkit-auto; background-color: rgb(255, 255, 255); "> "</span></div><div><span style="font-family: sans-serif; font-size: 13px; line-height: 19px; text-align: -webkit-auto; background-color: rgb(255, 255, 255); "><br /></span></div><div style="text-align: -webkit-auto;"><span style="text-align: left; ">Funny coincidence. Maybe if I were living in Ohio I could be a part of that trial. Make myself useful. But then I'd probably have to go off the MAF 314 or something. </span></div><div style="text-align: -webkit-auto;"><span style="text-align: left; "><br /></span></div><div style="text-align: -webkit-auto;"><span style="text-align: left; ">I also found out that Effexor, which I started my first year of college, is an SNRI. It got me through my first semester but one week into the second semester and I couldn't get out of bed. Definitely post-exertional malaise, in hindsight. That's when they took me off Effexor and put me on Adderall. "Just to keep me awake"</span></div><div style="text-align: -webkit-auto;"><span style="text-align: left; "><br /></span></div><div style="text-align: -webkit-auto;"><span style="text-align: left; ">But my doctors kept telling me I should keep trying antidepressants until I found the right one. So I did. Before I started my first semester at USC I started Lexapro. (I think it was Lexapro) On Lexapro I was sleeping 17 hours a day. I was missing so much school it looked like I was going to have to drop out (and I did) but I was determined to listen to my doctor and stay on this medicine. My best friend, who was also my roommate then, was mad at me. When I told her I was on Lexapro she said she'd been on it too, it did the same thing to her, and I shouldn't waste time on it, I should just get off it. I should have listened to her, but then what would I tell my doctor? He was telling me to stay on it. He said sometimes it has side effects like this at first but they go away.</span></div><div style="text-align: -webkit-auto;"><span style="text-align: left; "><br /></span></div><div style="text-align: -webkit-auto;"><span style="text-align: left; ">I think I stayed on it two or three months before I gave up. As soon as I got off it my sleeping went back to normal. (12 hours a day) But it was too late.</span></div><div style="text-align: -webkit-auto;"><span style="text-align: left; "><br /></span></div><div style="text-align: -webkit-auto;"><span style="text-align: left; ">I took a few months off and then I went back on Prozac. I'd taken it for for six months when I was eighteen and I thought it was the one that had worked best. In retrospect, the fact that I felt better at this time probably had nothing to do with which drug I was on. I was already out of school and I stopped taking it before I started working. So I had a lot less stress and I could sleep as long as I needed, and I did. Also, I was younger and healthier and hadn't been sick as long.</span></div><div style="text-align: -webkit-auto;"><span style="text-align: left; "><br /></span></div><div style="text-align: -webkit-auto;"><span style="text-align: left; ">When I tried Prozac again four years later it didn't do anything. Same when I combined it with Wellbutrin and Adderall and whatever they threw at me. </span></div><div style="text-align: -webkit-auto;"><span style="text-align: left; "><br /></span></div><div style="text-align: left;">I haven't tried anymore since then. And I just don't have any interest. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">Other things Dr. G said that annoyed me. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">"When you go to the specialist, do you see that all the patients are women?"</div><div style="text-align: left;"><br /></div><div style="text-align: left;">"Well he only sees one patient a day so I've never seen..."</div><div style="text-align: left;"><br /></div><div style="text-align: left;">"Because most of the people with Chronic Fatigue Syndrome are young women your age."</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I wish I had said "Why are you telling me this?" But instead I just said that a lot of the patients I see on the message board were men. I wish I hadn't said "message board" because as soon as I said that she cut me off. I didn't even mean message board like, normal internet message boards, I was actually referring to the Yahoo Group just for Cheney patients but I didn't make that clear. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">So I never found out where she was going with that. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">When trying to talk me into SNRI's she said "You have to run and jump and dance and..." and I cut her off and said "No, actually, exercise makes me worse" and Jim, who was setting next to me all this time, chimed in to agree.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">"Well I just said jump and dance to mean you have to try everything."</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I wanted to say "But I have tried everything"</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Poor doctors, up late at night, pacing around their offices, thinking "What can you prescribe to the patient who's tried everything?"</div><div style="text-align: left;"><br /></div><div style="text-align: left;">And for the record I did try jumping, and dancing. They didn't help and probably made me worse.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">In the end though she signed the form and I am excused from jury duty for one year. I asked if she could make it longer since there was no reason to expect I'd be better in a year. But she said that was as long as she could make it for unless the patient is over 80. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">I wondered if I could find another local doctor before the next year so I wouldn't have to come back. One who understands and won't put me through this. But I think the chances are really, really small.</div><div style="text-align: -webkit-auto;"><span style="text-align: left; "><br /></span></div><div style="text-align: -webkit-auto;"><span style="text-align: left; "><br /></span></div><div><span style="font-family: sans-serif; font-size: 13px; line-height: 19px; text-align: -webkit-auto; background-color: rgb(255, 255, 255); "><br /></span></div><div style="text-align: -webkit-auto;"><span ><span style="line-height: 19px;"><br /></span></span></div><div><br /></div><div><br /></div>Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com13tag:blogger.com,1999:blog-8097016924982298387.post-39194240553652645562011-10-12T16:15:00.000-07:002011-10-12T17:50:56.203-07:00GcMAF update/VDR/Voices from the Shadows/New Name<span class="Apple-style-span">I have been on GcMAF for 5 months now, and I'm sorry to report I've had no improvement. </span><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">I am pretty much the same as I was in May: mostly housebound. I can't shop. I can't cook. I can't clean out my closet.</span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">I can't seem to go out more than once a week, if that. When I tried last week I had a major crash, which I am still experiencing, or maybe just starting to coming out of. Two days ago I was too tired to get out of bed or to talk the entire day. Jim came over and sat on the bed and I just tapped his hand with my finger to let him know I could hear him. </span><span class="Apple-style-span" style="font-family: arial; font-size: small; ">Most of the time it is not that bad, but it happens. Yesterday I could talk a little more. Today I'm sitting up on the couch. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">I took my last dose of GcMAF this morning. I've been taking it sublingually every 5-7 days. I ordered it from BGLI in The Netherlands. When they were no longer shipping to the US my parents flew to Amsterdam and got some for me because I wanted to stick with it at least 5 months. I got an email from them today saying they have resumed shipping to the US. But I don't think I'll be ordering any more.</span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">On the other hand, here is a video I saw today posted by Dr. Enlander. His GcMAF trial, as I understand it, involves weekly injections of GcMAF not from BGLI but from a different source. This is just one patient, not sure of what is overall results are, if anyone does please let me know, but this one patient seems to have made a remarkable, and enviable, recovery. </span></div><div><span class="Apple-style-span"><br /></span></div><span class="Apple-style-span"><br /><iframe width="420" height="315" src="http://www.youtube.com/embed/mAUHbSG7HEY" frameborder="0" allowfullscreen=""></iframe></span><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">This video makes me want to take the next flight to New York and see if Dr. Enlander is taking more patients for GcMAF. But I already have travel plans. Next week I'll be back in Asheville for Dr. Cheney's and Dr. Ruggerio's MAF 14 yogurt making clinic. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">I'm not exactly looking forward to it. It's a long flight by myself, followed by a long drive. My dad is meeting me at the airport and taking the clinic with me. It's three days long. I don't know how I'm going to manage. My dad can go in my place but I'm the one who is going to have to come back home and teach it to Amy so she can make it for me. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">I'd love to go to Florida while I'm back east and visit my best friend. She might be able to make the ten hour drive to Asheville to pick me up. Then I can visit for a few days or a week and fly back to LA. I'd like to check out St. Pete's white sand beaches, go to some restaurants, maybe the Dali museum, but chances are I will not be up for anything but sitting around the apartment. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">I'm not expecting much from the yogurt. There's so many blood tests I have to take before I start it. The kits just arrived today, one of the kits. There's more to come. I have a good feeling they won't all be here before I leave. Cheney's office seems to be going through a lot of staff changes and in the meantime I haven't gotten a test result in months. I still don't know whether or not my nagalase has gone down, or the results of my last two calcitriol checks. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">And...as I was writing this I just got an email about my VDR type: Bb Ff. It means I should be a good responder. Oh well. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">I keep stressing myself out over these longshots. And I guess I haven't had enough yet. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">There's a new documentary out called Voices from the Shadows. It's available for streaming on the Mill Valley Film Festival website until October 30th <a href="http://mubi.com/films/voices-from-the-shadows">here</a>. I highly recommend it. At first because of the music and the style, I was a worried it was going to be like a super long, maudlin YouTube video. But it's not. It's message is substantial and the stories are so important. It tackles what I think is the most important issue with this disease, the psychiatrists trying to hijack it.</span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">All of the patients interviewed live in the UK. Six years ago, the first time I dropped all my classes midsemester, I had still never heard of CFS or ME. I was sleeping excessively and when I did get up and go to classes I was so tired I couldn't believe it. My only diagnosis was still depression. In an IM conversation, a friend in Europe said, "You've got to go to London, find out what's really wrong with you." I just laughed it off. It's not like I lived in a third world country. I'd been to the Cleveland Clinic, for gods sake. If they couldn't find what was wrong with me I don't know why anyone in London could. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">If I actually had gone to London, I might have gotten an ME diagnosis. But who knows what kind of doctor I would have seen. One who believed it was biological, or one who believed it was psychosomatic? </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">The last part of the film is particularly disturbing. A woman with very severe ME is being committed to a mental hospital. (There they call it being "sectioned.") She is bedbound. Has day night reversal. She's sensitive to light. She'd only recently regained the ability to speak. I can barely imagine the constant pain she must have been in, just lying there, struggling to talk to defend herself, probably with her eyes closed. She pleads with the doctors and the policemen who have come to forcibly remove her, telling them she has ME, and she's afraid the treatment they want to give her will make her worse. But they don't listen. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">Finally, I've been meaning to comment on the comments from the Wall Street Journal article by Amy Dockser Marcus last month. It's called "Wave of New Disabilities Swamps School Budgets" and the main disability she focuses on is CFS. It was featured on the front page I think. You need to have a subscription to read it and view the comments. My dad let me log in as him so I could read them, I heard they were pretty vicious. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">The article focuses on one high schooler with CFS. Her story might have been mine, if I had been correctly diagnosed in high school. She keeps trying to stay in school, the school keeps trying to accommodate her, but she keeps getting worse, acquiring more accommodations. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">Not surprisingly, for a lot of people this article was the first time they'd heard of Chronic Fatigue Syndrome. And, also not surprisingly, they all thought it was bullshit. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span" style="line-height: 15px; background-color: rgb(255, 255, 255); "><span class="Apple-style-span"><i>"I used to suffer from "chronic fatigue" while in high school! Fortunately it usually went away as soon as the final bell rang."</i></span></span></div><div><span class="Apple-style-span" style="line-height: 15px; background-color: rgb(255, 255, 255); "><span class="Apple-style-span"><i><br /></i></span></span></div><div><span class="Apple-style-span" style="font-family: arial; line-height: 16px; background-color: rgb(255, 255, 255); font-size: small; "><i>"So being lazy is now a medical condition? This is absurd and a huge waste of money."</i></span></div><div><span class="Apple-style-span"><span class="Apple-style-span" style="line-height: 15px;"><br /></span></span></div><div><span class="Apple-style-span"><span class="Apple-style-span" style="line-height: 15px;">I can't help but think that a lot of these commenters wouldn't have been so bold if the disease had a different name.</span></span></div><div><span class="Apple-style-span"><span class="Apple-style-span" style="line-height: 15px;"><br /></span></span></div><div><span class="Apple-style-span"><span class="Apple-style-span" style="line-height: 15px;">I've never liked the name Chronic Fatigue Syndrome because of the reactions I've gotten when I say I have it. "Oh I think I have that too" "Oh my mom has that but I think it's just depression" But I didn't know a better name for it, so I kind of got used to it. After all, it did describe at least part of what I was going through. </span></span></div><div><span class="Apple-style-span"><span class="Apple-style-span" style="line-height: 15px;"><br /></span></span></div><div><span class="Apple-style-span"><span class="Apple-style-span" style="line-height: 15px;">All these comments really opened my eyes. I'm not saying I have CFS anymore. Everyone who's been saying this name is absurd and needs to be changed, I am now completely on your side. Just tell me whose house to pitch a tent in front of.</span></span></div><div><span class="Apple-style-span"><span class="Apple-style-span" style="line-height: 15px;"><br /></span></span></div><div><span class="Apple-style-span"><span class="Apple-style-span" style="line-height: 15px;">Here is my own personal selection of comments which I call <b>"I, who never went to medical school"</b></span></span></div><div><span class="Apple-style-span"><span class="Apple-style-span" style="line-height: 15px;"><br /></span></span></div><div><i><span class="Apple-style-span"><span class="Apple-style-span" style="line-height: 15px;">"</span></span><span class="Apple-style-span" style="font-family: arial; line-height: 15px; background-color: rgb(255, 255, 255); font-size: small; ">I think I just got Taxpayer Fatigue Syndrome."</span></i></div><div><i><span class="Apple-style-span" style="font-family: arial; line-height: 15px; background-color: rgb(255, 255, 255); font-size: small; "><br /></span></i></div><div><div><span class="Apple-style-span" style="font-family: arial; line-height: 15px; background-color: rgb(255, 255, 255); font-size: small; "><i>"Adolescents and teens? We can never discount "don't want to do it" syndrome."</i></span></div></div><div><span class="Apple-style-span" style="font-family: arial; line-height: 15px; background-color: rgb(255, 255, 255); font-size: small; "><i><br /></i></span></div><div><div><i><span class="Apple-style-span" style="font-family: arial; line-height: 15px; background-color: rgb(255, 255, 255); font-size: small; ">"</span><span class="Apple-style-span" style="font-family: arial; line-height: 15px; background-color: rgb(255, 255, 255); font-size: small; ">I have Sympathy Deficit Disorder."</span></i></div></div><div><i><span class="Apple-style-span" style="font-family: arial; line-height: 15px; background-color: rgb(255, 255, 255); font-size: small; "><br /></span></i></div><div><i><span class="Apple-style-span" style="font-family: arial; line-height: 15px; background-color: rgb(255, 255, 255); font-size: small; ">"</span><span class="Apple-style-span" style="font-family: arial; line-height: 15px; background-color: rgb(255, 255, 255); font-size: small; ">I remember a lot of kids that suffered from CFS when I was in high school back in the 1990s, but back then they were called "potheads" and "burnouts." I wonder what time this girl gets to bed at night."</span></i></div><div><span class="Apple-style-span"><span class="Apple-style-span" style="line-height: 15px;"><i><br /></i></span></span></div><div><i><span class="Apple-style-span" style="font-family: arial; line-height: 15px; background-color: rgb(255, 255, 255); font-size: small; ">"</span><span class="Apple-style-span" style="font-family: arial; line-height: 15px; background-color: rgb(255, 255, 255); font-size: small; ">Made-up diseases: Chronic fatigue syndrome, learning disability, and marginal personality disorder.</span></i></div><span class="Apple-style-span" style="font-family: arial; line-height: 15px; background-color: rgb(255, 255, 255); font-size: small; "><i>Whatever happened to words like lazy, stupid, and jerk?"</i></span><div><span class="Apple-style-span"><span class="Apple-style-span" style="line-height: 15px;"><i><br /></i></span></span></div><div><i><span class="Apple-style-span"><span class="Apple-style-span" style="line-height: 15px;">"</span></span><span class="Apple-style-span" style="font-family: arial; line-height: 15px; background-color: rgb(255, 255, 255); font-size: small; ">Call me heartless, but I'm not buying that "chronic fatigue syndrome" is a real disease, much less a disability. The people I know with "CFS" have been people I've known to be drama queens their entire lives, always taking the max. sick leave or simply not working and living off their spouse and making themselves the center of sympathetic attention whenever and wherever they could in order to never have to do any work nor think about anyone else."<br /></span></i><div><span class="Apple-style-span" style="line-height: 15px; background-color: rgb(255, 255, 255); "><span class="Apple-style-span"><br /></span></span></div><div><span class="Apple-style-span" style="font-family: arial; line-height: 15px; background-color: rgb(255, 255, 255); font-size: small; "><i>"Chronic Fatigue Syndrome (CFS) & Attention Deficit Disorder (ADD) - Two made up diseases that I never heard of during my childhood! Then they were known by the more simpler terms "Always Lazy" and "Poor in Academics"..."</i></span></div><div><span class="Apple-style-span" style="font-family: arial; line-height: 15px; background-color: rgb(255, 255, 255); font-size: small; "><i><br /></i></span></div><div><span class="Apple-style-span" style="font-family: arial; line-height: 15px; background-color: rgb(255, 255, 255); font-size: small; "><i>"I, who never went to a medical school will tell you, that fatigue syndrome is linked to improper diet and toxicity in the human body. How one can solve it, very simple; change diet, fast, exercise, especially jogging. There are good self help books, but one has to find them. More important it is free, and sets you on the path of self reliance."</i></span></div><div><span class="Apple-style-span"><span class="Apple-style-span" style="line-height: 15px;"><br /></span></span></div><div><span class="Apple-style-span"><span class="Apple-style-span" style="line-height: 15px; background-color: rgb(255, 255, 255); "><span class="Apple-style-span" style="line-height: 10px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0.5em; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; line-height: 1.3em; "><i>"After reading the article,I had to go back and do a double-take to make sure I wasn't reading The Onion.<br /><br />"There is no diagnostic or blood test, no known cause or cure. Patients are diagnosed based on a pattern of self-reported symptoms—which tend to flare and then subside."<br /><br />What nonsense."</i></p><div><br /></div></span></span></span></div><div><span class="Apple-style-span" style="font-family: arial; line-height: 15px; background-color: rgb(255, 255, 255); font-size: small; "><i>"Here's the bottom line from a physician of 21 years; </i></span></div><div><span class="Apple-style-span" style="line-height: 15px; background-color: rgb(255, 255, 255); "><span class="Apple-style-span"><i>Chronic Fatigue syndrome is a bunch of cr@p. The people who "have it" will defend it till the end, to be validated as "sick human beings" and of course to get disability.<br /><br />Fibromyalgia is a bunch of cr@p. But it is good for us doctors because it is codeword for "this is a crazy patient".<br /><br /></i><br /></span></span></div><div><span class="Apple-style-span"><span class="Apple-style-span" style="line-height: 15px;"><br /></span></span></div></div>Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com9tag:blogger.com,1999:blog-8097016924982298387.post-54225996509278413462011-09-08T15:08:00.001-07:002011-09-08T15:30:53.696-07:00NPR FTW!<span class="Apple-style-span" >So much going on, I completely missed <a href="http://www.npr.org/2011/09/05/140191111/medical-mystery-of-chronic-fatigue-syndrome-returns">NPR's Morning Edition segment on Chronic Fatigue Syndrome </a>Monday.<br /><br />I heard about it over the weekend, and was a little worried it was going to be about what was going on in the UK with and ridiculous "Death Threats for Scientists" thing.<br /><br />But actually it was pretty much all I could have hoped for; the news item I've been waiting for.<br /><br />It's almost five minutes long, not just a blurb.<br /><br />It talks about the day to day reality of being bedfast and housebound. The frustration with uninformed doctors. A soundbite from Anthony Komaroff.<br /><br /><span style="font-style:italic;">Over the years, researchers have identified various brain, immune system and energy metabolism irregularities. Komaroff points to a study done a couple of years ago by the Centers for Disease Control and Prevention. It showed that the majority of doctors now recognize chronic fatigue syndrome as an illness. Today, an estimated 1 million Americans are thought to have it.<br /><br />But lots of regular folks are still doubters, at least in the experience of Cynthia Johnson of Lake Oswego, Oregon. She says the disbelief makes the disease worse. Johnson is a breast cancer survivor but in October 2009, she was hit with a bad flu that hasn't gone away.<br /><br />Ms. CYNTHIA JOHNSON: People really admire you for fighting cancer, and they're very excited that you survived. They congratulate you for surviving. Nobody does that, day to day, for CFS. They are just like, oh.</span><br /><br />And it ends:<br /><br /><span style="font-style:italic;">The results of those two studies on whether there's an XMRV connection may be released at a meeting in Canada at the end of the month. Meanwhile, advocates for people with chronic fatigue syndrome are pushing for a name change, to make the syndrome sound like more than a description of someone who just needs a nap.</span><br /><br />It's a rare thing with CFS stories, but I feel like these journalists actually really did their homework and were telling the real story. As best they could in five minutes.<br /></span>Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com2tag:blogger.com,1999:blog-8097016924982298387.post-63933720848296930222011-08-24T13:47:00.000-07:002011-08-24T17:04:55.024-07:00Vendetta<span style="font-family:arial;font-size:100%;">I feel like I've been hearing a lot about Simon Wessely lately. But I've kept my distance, emotionally. ME in the UK, I don't think I've ever quite grasped what it's like there. </span><span style="font-size:100%;">
<br />
<br /></span><span style="font-family:arial;font-size:100%;">But I read a quote in Nassim Marie Jafrey's </span><span style="font-size:100%;"><a style="font-family: arial;" href="http://velo-gubbed-legs.blogspot.com/2011/08/storytelling-6.html">blog</a></span><span style="font-family:arial;font-size:100%;"> from Simon Wessely today, </span><span style="font-size:100%;"><span style="font-family:arial;">and it's gotten me pretty worked up.</span>
<br />
<br /></span><span style="font-family:arial;font-size:100%;">“Like it or not, CFS is not simply an illness, but a cultural phenomenon and metaphor for our times.”</span><span style="font-size:100%;">
<br />
<br /></span><span style="font-family:arial;font-size:100%;">Seriously? And this man is ostensibly baffled that people would find this offensive. I followed a link to its </span><span style="font-size:100%;"><a style="font-family: arial;" href="http://www.meassociation.org.uk/?p=7552">source</a></span><span style="font-family:arial;font-size:100%;"> at the ME association website. </span><span style="font-size:100%;">
<br />
<br /></span><span style="font-family:arial;font-size:100%;">Here is his main argument:</span><span style="font-size:100%;">
<br />
<br /></span><span style="font-family:arial;font-size:100%;">“I think finally, fundamentally, it is that they [PWC's] cannot stomach the thought that this might be a, quote, ‘psychiatric disorder’. By which they mean — not what I mean — ‘it’s imaginary’, ‘it doesn’t exist’, they are ‘malingerers’.”</span><span style="font-size:100%;">
<br />
<br /></span><span style="font-family:arial;font-size:100%;">So what does </span><span style="font-style: italic; font-family:arial;font-size:100%;" >he</span><span style="font-family:arial;font-size:100%;"> mean by "psychiatric disorder? </span><span style="font-size:100%;">
<br />
<br /></span><span style="font-family:arial;font-size:100%;">“Psychiatric disorders are disorders of the brain but expressed in a way that you can’t see them. I think that schizophrenia is a psychiatric disorder, Alzheimer’s is a psychiatric disorder, OCD [obsessive compulsive disorder] and autism are psychiatric disorders. Why is Alzheimer’s listed as a psychiatric disorder? Well, largely because it is treated by a psychiatrist.”</span><span style="font-size:100%;">
<br />
<br /></span><span style="font-family:arial;font-size:100%;">And this is where he loses me. What does he mean by, can't see them? They don't show up in MRI's? There's no blood test for them? </span><span style="font-size:100%;">
<br />
<br /></span><span style="font-family:arial;font-size:100%;">Yet?</span><span style="font-size:100%;">
<br />
<br /></span><span style="font-family:arial;font-size:100%;">Does he honestly believe that the causes of these diseases </span><span style="font-style: italic; font-family:arial;font-size:100%;" >cannot</span><span style="font-family:arial;font-size:100%;"> and never will be seen? Never mind there is already significant evidence for a viral cause of </span><span style="font-size:100%;"><a style="font-family: arial;" href="http://discovermagazine.com/2010/jun/03-the-insanity-virus">schizophrenia</a></span><span style="font-family:arial;font-size:100%;">. </span><span style="font-size:100%;">
<br />
<br /><span style="font-family:arial;">What does he think CFS is? <a href="http://en.wikipedia.org/wiki/Simon_Wessely#cite_note-21">"Somatisation par excellence"?</a> </span></span><span style="font-size:100%;"><span style="font-family:arial;">The delusion of fatigue? When there is<span style="font-style: italic;"> so much</span> scientific evidence against that?</span>
<br />
<br /><span style="font-family:arial;">Wessely thinks all his problems stem from the stigmatization of psychiatry. <span style="font-style: italic;">A stigmatization that shouldn't exist but sadly does. People with CFS turn their noses up at psychiatry. They naively demand the search for "biological" causes. </span></span></span><span style="font-style: italic;font-size:100%;" ><span style="font-family:arial;">People with CFS aren't crazy, but they are in far greater need of therapy than medicine. </span></span><span style="font-size:100%;"><span style=" font-style: italic;font-family:arial;" >If they would just understand that mind/body - it's all the same thing! Thus follows, therapy/medicine - same thing!
<br />
<br /></span><span style="font-family:arial;">So why even make a distinction between psychiatry and medicine, other than so psychiatrists can keep their jobs?
<br />
<br />Actually he does see it that way: </span><span style=" font-style: italic;font-family:arial;" >
<br /></span></span><span style="font-family:arial;font-size:100%;">
<br />“Obviously I’m of the view that we should treat these disorders equally, which is, I think, getting rid of the distinction between neurology and psychiatry.”</span><span style="font-size:100%;">
<br />
<br /></span><span style="font-family:arial;font-size:100%;">What? OK, all you psychiatrists, congratulations! You're all neurologists now! All you in your private offices, seeing patients on couches, prescribing anti-depressants one after another in no particular order until you find "the one that works", call yourselves neurologists now! Publish a completely biased and unscientific study about how GET and CBT cure ME, and send it into the American Academy of </span><span style="font-size:100%;"><a style="font-family: arial;" href="http://www.neurology.org/">Neurology</a></span><span style="font-family:arial;font-size:100%;"> for publication. </span><span style="font-size:100%;"><span style="font-family:arial;">Go try that!</span>
<br />
<br /></span><span style="font-family:arial;font-size:100%;">I'm getting out of my depth now, but I have to say, the only way CFS/ME is a "metaphor for our times" is if you use it someway as a metaphor for our times in a novel or a movie. Here in the real world, it's just an illness. Maybe caused by a virus, maybe by something else, but whatever the cause, it can, and will be seen. </span><span style="font-size:100%;">
<br />
<br /></span><span style="font-family:arial;font-size:100%;">I think my feelings right now about psychiatry are best summed up by this great scene from Frasier:</span><span style="font-size:100%;">
<br />
<br /></span><span style="font-family:arial;font-size:100%;">It starts at 12:30 and is only a minute or so:</span><span style="font-size:100%;">
<br />
<br /><iframe style="font-family: arial;" src="http://www.youtube.com/embed/WEouuVs-SoM?rel=0" allowfullscreen="" frameborder="0" height="390" width="480"></iframe></span>
<br />
<br />*Update - A good summary of Wessely's behavior in <a href="http://www.meactionuk.org.uk/Wesselys-Words-Revisited.htm">this</a> letter from Malcolm HooperAlisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com0tag:blogger.com,1999:blog-8097016924982298387.post-51517493008982195122011-08-04T19:13:00.000-07:002011-08-04T19:34:05.938-07:00You know it's a good day when...<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuq-j72sSCgaWAUDAfOqXcSWDvokyGBZBBIPuTp1-e61oWmbrFFrNFlAMVa-j4BB1RODtRUI2btfDFAbFzHP07X2T9k0rz__mjLA8qCisN0TjPvyLne2VZmPTMLKHJsybggjiR9dwPA_4/s1600/skylight"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 225px; height: 220px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuq-j72sSCgaWAUDAfOqXcSWDvokyGBZBBIPuTp1-e61oWmbrFFrNFlAMVa-j4BB1RODtRUI2btfDFAbFzHP07X2T9k0rz__mjLA8qCisN0TjPvyLne2VZmPTMLKHJsybggjiR9dwPA_4/s400/skylight" alt="" id="BLOGGER_PHOTO_ID_5637193755569391522" border="0" /></a><br />I am very lucky today because:<br /><br />1) I drove myself to get my haircut. Made possibly because I finally decided to stop driving all the way across town and go to a salon down the street.<br /><br />2) I was reading online about ways to cool your apartment without air conditioning. One of my problems is I can open my windows but I never get a breeze. Then I read that you can create a breeze through the "chimney effect" by opening the highest and lowest windows in the building.<br /><br />My apartment is the second floor of a duplex. I open the front door, walk up some stairs, and my whole apartment is on the second floor. So my lowest window was actually the front door. I got up and went down the stairs, opened it, and came back up. My highest window is a skylight that was put in for roof access. Below it is a bookshelf/staircase with very narrow steps. I had to climb them, and push very hard to lift the window up, and climb back down.<br /><br />What's great is not just that I was able to do it, but that I <span style="font-style: italic;">knew</span> as I was sitting there reading that I would be able to do it. Most days I am so tired and my body feels so heavy; I would read it and think, "That's nice, I'll ask Jim to do it when he comes over." Most days I sit on the sofa and decide if I want to stand up and walk across the room to turn the fan on.<br /><br />I'm tired now. If you asked me to get up and do it again, I would be <span style="font-style: italic;">able</span> to do it, but I'd have to think about it. And I'd probably decide I'd have enough for the day and should just rest.<br /><br />Which is what I'll do now. Hello Satie Pandora station...<br /><br />3) I was able to write this.Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com3tag:blogger.com,1999:blog-8097016924982298387.post-64638382979016503752011-07-28T17:20:00.000-07:002011-07-29T05:07:45.825-07:0010 weeksI've just finished my 10th week on GcMAF. I'm afraid I don't have much to report. As of June 22 my Calitrol was at 47.7, up from 33 where it hovered before I started. It's a significant rise, and it means my body isn't just ignoring the GcMAF, so that's good. I had it retested a week ago. I guess I want it to stay elevated, but not get too high. That could be bad.<br /><br />As of June 24th there's been virtually no drop in my Nagalase: it went from 2.2 to 2.0. I haven't had another test since. Maybe I should ask for one.<br /><br />I started MTF last week. Some other patients reported feeling immediate changes when they put it on, (it's like a cream you rub into your arm) either jitteriness or more energy, but I don't feel anything.<br /><br />It seems like this summer is progressing and my health is declining at the same rate as it would if I'd never started GcMAF or MTF.<br /><br />My VDR phenotype results which are supposed to predict GcMAF response were finally sent to the lab, but it will be another month before I find out what they are. At this point I don't really care.<br /><br />BGLI, my GcMAF source, has, for the time being, stopped shipping to the US and Canada. Even though I haven't felt any changes yet, and it's not too early, it's also not too late, and I didn't want to stop my treatment halfway. So as I write this my parents are in Amsterdam, a trip they took with the specific purpose of bringing back a three months supply of GcMAF for me from BGLI. I'm determined to do the whole six months.<br /><br />Then there's the other GcMAF, the bovine kind made with yogurt. It's supposed to be helpful for digestion, which God knows I need help with. 20 or so Cheney patients are starting a trial of it sometime in the next two weeks. One of them read this blog and contacted me, so I'll be able to find out how he's doing. And supposedly after the trial this will be available for all patients to buy, I think.<br /><br />It's not easy, but I am still determined to believe that any treatment could be the one that makes a difference.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6oqMPzOeEtK_0GKopVvPkRGfbZWNjsS3LzFOzsN0sPzgQyzKIxc3UdftFgR5535qCD8BmE3TQyCdVcOjAhUkv8pwgbEtBGGTpzpJDItIqnh37a7OWzK1L2abdQT97MDewxPBcLry4ock/s1600/red+bull+ad.png" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 116px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6oqMPzOeEtK_0GKopVvPkRGfbZWNjsS3LzFOzsN0sPzgQyzKIxc3UdftFgR5535qCD8BmE3TQyCdVcOjAhUkv8pwgbEtBGGTpzpJDItIqnh37a7OWzK1L2abdQT97MDewxPBcLry4ock/s400/red+bull+ad.png" alt="" id="BLOGGER_PHOTO_ID_5634568447802517170" border="0" /></a><br /><br />Meanwhile I have not done much this summer. It would have been awesome if I could have gone with my parents to Amsterdam myself, but even though technically I'm sure I could <span style="font-style: italic;">survive</span> the flight, the stress would do a big number on me, on my body, and it would just be a miserable experience. Anyway, I've already been to Amsterdam. It was kind of a side trip when my friend and I were traveling around Germany. I think it was supposed to be just two days, but we decided to stay another because I spent the entire second day asleep. It was the second time on a vacation where a friend, who normally was tolerant of my long sleeps, suddenly got angry at me for it. Because now we're in <span style="font-style: italic;">Amsterdam.</span> "I understand if you want to sleep all day in Ohio, or sleep through college, but not when there's fun stuff to do." Both times it was a disturbing surprise to find out these friends thought I slept all the time because I had nothing better to do. Like I was making some kind of statement. Hadn't I made it clear this sleep thing was beyond my power and my understanding? Apparently not. Probably my pride got in the way.<br /><br />Been watching a lot of movies. Almost seen all the AFI 100. Latch-hooked my way more than halfway through a welcome mat. Been making Spotify playlists. Most days now I am not able to read. So, I'll be keeping up my Audible and Netflix accounts. Wish I could do something more.Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com3tag:blogger.com,1999:blog-8097016924982298387.post-25024250132353342972011-06-11T12:26:00.000-07:002011-06-11T13:13:06.898-07:00GcMAF/Nagalase/Calcitriol<span class="Apple-style-span" style="font-family:arial;">I've been on GcMAF 30 days now and I'm starting to worry I might be a non-responder. I should probably wait at least another three weeks before I let myself get too concerned, but I can't really help it.</span><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;">I have to say that it's been a good 30 days, relatively speaking. I still have good days and bad days, but the bad days haven't been as bad, and the good days have been a little better. It's been a little easier to fall asleep at night, and easier to get up in the morning. I really felt better. I didn't know my test results yet, if my Calcitriol levels were rising, indicating the GcMAF was active, or if I had the right VDR polymorphism.</span></div><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;">Someone in Europe, I don't know if it was Kenny De Meirleir or BGLI or what,</span><span class="Apple-style-span" style="font-family: arial; "> had said that only 5% of the population had the bad VDR type that didn't respond to GcMAF. Recently Dr. Cheney said that among his patients it was more like 50%. I won't know my VDR test results for at least another three weeks. </span></div><div><span class="Apple-style-span" style="font-family: arial; "><br /></span></div><div><span class="Apple-style-span" style="font-family: arial; ">I haven't gotten the results in the mail yet, but I found out over the phone that my Calcitriol has not gone up, in fact it's gone down a little. But, when I took the test, I had only been on GcMAF for two weeks and had only had 3 doses of 20ng each. It won't be for another two weeks that I get up to the full 100ng dose. So I'm hoping that that has something to do with it. </span></div><div><span class="Apple-style-span" style="font-family: arial; "><br /></span></div><div><span class="Apple-style-span" style="font-family: arial; "><b>Nagalase</b></span></div><div><span class="Apple-style-span" style="font-family: arial; "><b><br /></b></span></div><div><span class="Apple-style-span" style="font-family:arial;">Dr. Cheney suggested I do another nagalase test to see if that has at least gone down. The results from my first test came, and I've got it. My level was 2.2. The normal/healthy range is 0.32-0.95. So I am not normal or healthy. There isn't a lot on the internet about nagalase, but as far as I understand, it's only seen in cancer, HIV, and certain autoimmune diseases. I looked at a chart in one of <a href="http://onlinelibrary.wiley.com/doi/10.1002/jmv.21376/pdf">Dr. Yamamoto's papers</a>, and found that his HIV patients nagalase levels ranged from 3.06 to 5.58. The healthy control was .23. The goal of the GcMAF therapy is to get the nagalase down to zero.</span></div><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;">As for XMRV, as far as I can tell, everyone in the retrovirology world seems to agree with John Coffin that XMRV is a recombinant virus, and a lab contaminant that does not infect humans. On the other hand, I got an email recently from a patient who saw Dr. Cheney in May and he still wanted her to get an XMRV test from VIP. I guess that's all I'm going to say about that, because retrovirology is pretty much impossible for me to understand. All I know is that something in me is making nagalase. </span></div><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;">My next calcitriol test is in a little less than two weeks, but even by then I still won't have been up to full dose. Still, I'm hoping it shoots up. </span></div><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;">I still have not experienced any GcMAF side effects, like the IRIS effects, flu-like symptoms that last anywhere from 2 days to two weeks. </span></div><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;">If I'm not responding to GcMAF, and the good days I've had this month are just a coincidence, or a product of hope, there are two possibilities. One of course is I have the bad VDR mutation. If I don't though, I'm worried that my bad digestion could be the cause. And since gut health is so important to the immune system, maybe I'm screwed. </span></div><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;">There might be a study conducted with Dr. Cheney's patients and a Dr. Ruggiero from Italy. He makes a product that combines GcMAF with a raw milk colostrum. It's supposed to be good for gut issues. Maybe if I am not responding to GcMAF this way I will be able to get in on that study, but I don't know, it's a pretty small one. </span></div><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;">If GcMAF works for me, and it has for many with CFS, it could make such a difference in my life. Maybe I could go back to college. Maybe I could work. Maybe I could go grocery shopping and cook for myself again. I would love to take dance lessons with my boyfriend. But if things stay as they are, I have to spend most days sitting on the couch. Or if I am up to it, I can sit on someone else's couch, or on a couch at a party. Or even in the passenger seat of a car for a weekend roadtrip. </span></div><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;">What I really need is to do some real clothes shopping. I'm sure that's the most energetically demanding chore of a person's life. Walking around to different stores, trying a bunch of different things on. That's the only way I know to maintain a decent wardrobe. I've been shopping a little, in spurts, one, maybe two stores at a time, with my mom or boyfriend to carry things for me. But I have to be done in a half hour, 45 minutes. There's more pressure. I don't always buy the right things. And then my weight is always going up and down so much, so something I bought two weeks ago won't fit today. </span></div><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;">There's got to be some workaround for the shopping thing. Maybe my own private tailor who makes house calls? </span></div><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;">I don't even go out that much, but I do go out sometimes. And when I do...I get very self conscious about wearing four year old clothes that don't fit. And also, it matters very much what I wear just sitting around the house. It has to be comfy, but I can't stay in my pajamas all day or I'll have nothing to change into when it's time for bed. </span></div>Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com12tag:blogger.com,1999:blog-8097016924982298387.post-77042830821877857842011-06-02T14:20:00.000-07:002011-06-02T14:26:22.132-07:00Word Fog<div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><span class="Apple-style-span" style="line-height: 19px; "><div><span class="Apple-style-span" style="line-height: 20px; "><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Pasting my url into </span></span><a href="http://www.wordle.net/"><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Wordle</span></span></a><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"> is a lot easier than writing an actual blog:</span></span></span></div><div><span class="Apple-style-span" style="line-height: 20px; "><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></span></div></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1maCr3OUpcL5rqqiHdScuamVSVjNFYnyrdUWXTbFe51kBXa6rXkQXictsN-qvg_lp_1A6lKtIEZz3YHNACejPZhytD7nDef30zwd2L7M-aeE5Ek9AjRXmHzwoXKy9d1Xq4jlOdycwyao/s1600/wormwood+wordcloud.png" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 255px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1maCr3OUpcL5rqqiHdScuamVSVjNFYnyrdUWXTbFe51kBXa6rXkQXictsN-qvg_lp_1A6lKtIEZz3YHNACejPZhytD7nDef30zwd2L7M-aeE5Ek9AjRXmHzwoXKy9d1Xq4jlOdycwyao/s400/wormwood+wordcloud.png" border="0" alt="" id="BLOGGER_PHOTO_ID_5613736283061965410" /></a><span class="Apple-style-span" style=" line-height: 20px; "><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="line-height: normal;"><br /></span></span></span></div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">"Wordle is a toy for generating 'word clouds' from text that you provide. The clouds give greater prominence to words that appear more frequently in the source text."</span></span></span>Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com0tag:blogger.com,1999:blog-8097016924982298387.post-35880702407272571852011-05-02T14:10:00.000-07:002011-05-02T15:37:33.715-07:00GcMAF<span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:x-small;">(This post will be an exercise on and a lesson in limitations. I've been putting off writing it, waiting until I had enough energy to "make it a really good one" with links and quotes and everything. But I get it now that that's just not going to happen.)</span></span><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">I had my third appointment with Dr. Cheney in March. He is putting some patients on GcMAF now and I said I wanted to start. It was a long process of preliminary blood testing, most of the results I am still waiting for, but I finally got my order through and I think it is shipping today from The Netherlands. If there's no problem at customs it could be here this time next week. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">I don't know if I'll be able to start taking it right away, or if I have to wait for more test results. Vitamin D levels are important. I know mine are usually very low. Two years ago my endocrinologist told me mine were the lowest in her practice. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Low vitamin D levels are associated with failure to respond to GcMAF. So I might need to supplement before I start.</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">With GcMAF there is an Immune Resuscitation Inflammatory Syndrome response, (IRIS) that could last a few days or two weeks. The lower your vitamin D levels, the worse it is, usually. That scares me a little. IRIS means flulike symptoms. The last time I had the flu was, well, scary and unbearable.</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Dr. Cheney read me an excessively cheerful email from a patient who was having a positive reaction to GcMAF. I remember he said he was sleeping better and waking up refreshed and able to do much more during the day. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">There are also two patients who didn't respond at all. And this makes sense, because they both have the "VDR haplotype polymorphism" which predicts failure to respond in patients with HIV. I've been tested for this but I don't know the results yet. If I have it, it will be crushing. But Dr. Cheney is not yet convinced it is a impossible to work around. He is giving them higher doses of GcMAF and thinks they might respond. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">If you are wondering what GcMAF is, don't bother looking on Wikipedia. Until recently there was no entry. Now I think there is one sentence.</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">I'm just going to paraphrase/quote from Dr. Cheney's GcMAF Protocol and Consent Form, and we'll figure it out together:</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">GcMAF was discovered by Dr. Nobuto Yamamoto at Temple University in 1990. (The GcMAF wikipedia page sites Dr. Yamamoto's papers.) "He patented a method to semi-synthetially reproduce GcMAF in 1993, (now expired) and by 2002 began to conduct studies using this semi-synthetic derivative in both HIV and cancer patients."</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">What is GcMAF?</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">"GcMAF is a partially deglycosylated (?) vitamin D binding protein (DBP) also known as the Gc protein."</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">(?) So it's a "glycoprotein" with the sugar (glyco) taken off. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">What the protein normally does, is bind and carry vitamin D, but in an immune response will be acted on by a specific enzyme that "deglycosylates" it, which changes it's function. So now, as GcMAF, it will "activate, regulate, and expand macrophages" Macrophages are a kind of white blood cell, "the central processing unit of the immune system and capable of modulating and controlling both the innate and cognate immune systems."</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">So basically, GcMAF is an important part of the immune response. Theoretically, some of my macrophages are not being activated, and they need to be.</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><b><span class="Apple-style-span" style="font-size:medium;">NAGALASE</span></b></span></div><div><span class="Apple-style-span" style="font-family:arial;"><b><span class="Apple-style-span" style="font-size:medium;"><br /></span></b></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Nagalase, an enzyme also discovered by Yamamoto, destroys GcMAF, "with subsequent loss of effective imunologic function and potential dysregulation of the immune system ensues." Nagalase is found in "most patients with HIV and cancer as well as some autoimmune diseases" </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">When I was talking with Dr. Cheney, I got the impression that nagalase was actually produced by HIV and other retroviruses, but I can't find that written down. It does say that "Nagalase activity was found to be a better biomarker for clinical status of HIV infected patients than more traditional biomarkers such as the CD4 count."</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">I am being tested for nagalase activity, but I won't know the results for weeks. I do know that he's had a number of patients tested and they all came back positive. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">The impression I got was, that even if XMRV turns out to be a lab contaminant (and I got the distinct impression he doesn't think it will) that nagalase activity in CFS patients points to a retroviral cause anyway. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">If you've googled GcMAF, as I have, you'll probably end up looking at a copy of Dr. Yamamoto's 2009 paper <a href="http://www.bgli.nl/documents/research/Immunotherapy_of_HIV-Infected_Patients_ith_Gc_Protein-Derived_Macrophage_Activating_Factor_(GcMAF).pdf">Immunotherapy of HIV-infected patients with Gc protien-derived macrophage activating Factor (GcMAF) </a>in the Journal of Medical Virology. Which "demonstrate(s) the utility of GcMAF in eradicating HIV in non-AIDS patients and even maintaining such eradication for years after GcMAF therapy was discontinued. In other words, his GcMAF therapy appears to be able to cure HIV in certain classes of patients and render the patient immune from HIV infection."</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">So why doesn't everyone know about this?</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Apparently, Dr. Yamamoto is "reclusive and unapproachable." And ostensibly not a promising source of revenue. (Though the GcMAF I am ordering from <a href="http://www.gcmaf.nl/">BGLI</a> is not cheap, but maybe it is by prescription drug standards. I don't know.)</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">More quotes from the protocol:</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">"His methods of patent in 1993 was inherently weak as GcMAF, as a natural substance, cannot itself be patented and no large commercial interest ever bought a license from Yamamoto to improve the rate and quality of GcMAF clinical studies and make high quality GcMAF widely available"</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">This is supposedly why we all have not heard of it.</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">"To make matters worse, there have emerged many GcMAF products, available on the internet from around the world, of questionable quality and efficacy...There are also some fairly severe though transient side effects in a few patients that need physician assistance and guidance to negotiate safely."</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">So, you know, don't try this at home, without help from your doctor. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">And finally:</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">"...treatment with GcMAF does appear to be <b>very promising</b> and <b>relatively safe</b> for patients with disabling CFS and more than 100 CFS cases have been treated successfully in Europe by two separate groups in Belgium and The Netherlands. The non-response rate appears low and currently sits at about 5% and perhaps related to rare Vitamin D receptor polymorphisms..."</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">which I am being tested for, still awaiting the results.</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">(emphasis mine)</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">So based on GcMAF being a naturally occurring substance in the human body, and the fact that it's been studied since 2002, I am convinced it's safe enough to try. And I do have high hopes. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">As for the whole stem cell thing, it looks like that's out. Dr. Neil Riordan, who runs the clinic in Panama I would have gone to, is now making something from stem cells, some kind of cream you can apply topically. It's called MTF. I ha</span><span class="Apple-style-span" style="font-size:small;">d Dr. Cheney write down what that stands for but I can't really read it, but it looks like "</span><span class="Apple-style-span" style=" line-height: 38px; font-family:sans-serif;"><span class="Apple-style-span" style="font-size:small;">Mesenchymal</span></span><span class="Apple-style-span" style="font-size:small;"> Trophic Factor".</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"> It's something I'll be starting 18 weeks after I start GcMAF. He said he gave some to a relative with Parkinson's and that it really helped his tremors, and that he was able to cut the lawn on the riding mower for the first time in years or something. When we talked though it had only been a day or two and he didn't expect it to last, at least not without another application. I don't know how that turned out. I guess I can ask at my follow up visit in six months. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">It's been a rough few months. And at the lowest times it's been the thought of the GcMAF that's kept me going. Did I mention my hopes are up?</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div>Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com12tag:blogger.com,1999:blog-8097016924982298387.post-22621794223528275362011-02-21T04:15:00.001-08:002011-02-21T05:28:35.806-08:00Our Schizophrenic Cousins<span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Pity the poor CFS sufferers and their doctors, alone in the world, toiling in obscurity, trying in vain to prove to the world that their disease is not mental but viral in origin. Or so I thought. </span></span><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Three years ago, when I was still just learning about CFS as a biological illness, I read an article in a science magazine about a possible viral or bacterial cause for schizophrenia. </span></span><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">“Of course!” I thought. So obvious! So elegant! This must be how people felt when The Origin of the Species was first published!</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">So I was surprised a few months ago when I saw an article in Discover Magazine about the "Schizophrenia virus controversy", What? Those stubborn psychiatrists just can't let go of their precious mental disease? Come on!</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">I read the first few paragraphs, but I was tired, and hadn't been able to do much reading lately. So I opened a tab for it in my browser and it sat there unread, for months. I finally just read it tonight </span></span><i><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">and I am KICKING myself </span></span></i><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">for it because it is the most mind blowing and informative story I've read all year. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Please read </span></span><a href="http://discovermagazine.com/2010/jun/03-the-insanity-virus"><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">The Insanity Virus</span></span></a><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">.</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">It turns out it's not just a virus or bacteria they're talking about. It's a retrovirus. An </span></span><i><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">endogenous</span></span></i><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"> retrovirus. I don't know as much as I'd like to about virology, but I do know that endogenous retroviruses, ervs, are supposed to be harmless. The virus, HERV-W, is also implicated in MS and bipolar disorder. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Reading about this virus was eerily like reading about CFS, though, disappointingly, CFS and XMRV are never mentioned. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">It is a very easy, very enlightening read. If you are not yet convinced of it's relevancy to your life, I have some quotes prepared that may change your mind. Basically I'm going to quote heavily from the article and comment on it.</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">1) The Birth Month effect leads to the suspicion of an infectious cause for Schizophrenia</span></span></div><blockquote><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Even more puzzling is the so-called </span></span><a href="http://www3.interscience.wiley.com/journal/119622993/abstract?CRETRY=1&SRETRY=0"><span style="text-decoration:none;text-underline:nonecolor:#160072;"><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">birth-month effect</span></span></span></a><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">: People born in winter or early spring are more likely than others to become schizophrenic later in life. It is a small increase, just 5 to 8 percent, but it is remarkably consistent, showing up in 250 studies. That same pattern is seen in people with bipolar disorder or multiple sclerosis.</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">"The birth-month effect is one of the most clearly established facts about schizophrenia," says Fuller Torrey, director of the Stanley Medical Research Institute in Chevy Chase, Maryland. "It's difficult to explain by genes, and it's certainly difficult to explain by bad mothers."</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div> <span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">The facts of schizophrenia are so peculiar, in fact, that they have led Torrey and a growing number of other scientists</span></span><i><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"> to abandon the traditional explanations of the disease and embrace a startling alternative. Schizophrenia, they say, does not begin as a psychological disease. Schizophrenia begins with an infection.</span></span></i><!--EndFragment--><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"> </span></span></div><div></div></blockquote><div><i><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></i></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">(Italics mine. And by the way, I was born in February, my healthy siblings were born in August and late April.)</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">2) The virus</span></span></div><div><blockquote><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">If Torrey is right, the culprit that triggers a lifetime of hallucinations—that tore apart the lives of writer Jack Kerouac, mathematician John Nash, and millions of others—</span></span><b><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">is a virus that all of us carry in our bodies.</span></span></b></blockquote><b><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"></span></span></b><!--EndFragment--><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"> </span></span></div><div><b><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></b></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Emphasis mine, because if this is true, then it wouldn't matter if XMRV or whatever it's called is an erv. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><blockquote>We imagine viruses as mariners, sailing from person to person across oceans of saliva, snot, or semen—but Perron’s bug was a homebody. It lives permanently in the human body at the very deepest level: inside our DNA. After years slaving away in a biohazard lab, Perron realized that everyone already carried the virus that causes multiple sclerosis. </blockquote></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">3) The following passages are about schizophrenia but you could easily start reading them and think they were about CFS:</span></span></div><blockquote><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Schizophrenics also showed signs of inflammation in their infection-fighting white blood cells. “If you look at the blood of people with schizophrenia,” Torrey says, “there are too many odd-looking lymphocytes, the kind that you find in mononucleosis.” And when he performed CAT scans on pairs of identical twins with and without the disease—including Steven and David Elmore—he saw that schizophrenics’ brains had less tissue and larger fluid-filled ventricles.</span></span></div><div><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;"> <p class="MsoNormal"><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"> By the 1980s he began working with </span></span><a href="http://www.hopkinschildrens.org/Robert-Yolken-MD.aspx"><span style="text-decoration:none;text-underline:nonecolor:#160072;"><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Robert Yolken</span></span></span></a><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">, an infectious-diseases specialist at Johns Hopkins University in Baltimore, to search for a pathogen that could account for these symptoms. The two researchers found that schizophrenics often carried antibodies for toxoplasma, a parasite spread by house cats; </span></span><b><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Epstein-Barr virus</span></span></b><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">, which causes mononucleosis; and</span></span><b><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"> cytomegalovirus</span></span></b><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">. These people had clearly been exposed to those infectious agents at some point, but Torrey and Yolken never found the pathogens themselves in the patients’ bodies. The infection always seemed to have happened years before.</span></span></p></span></span></div></blockquote><div><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;"><p class="MsoNormal"><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"></span></span></p><p class="MsoNormal"><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Again, emphasis mine.</span></span></p><p class="MsoNormal"><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Here just read XMRV for HERV-W, PWCs for schizophrenics, and fatigue for psychosis:</span></span></p><p class="MsoNormal"> <!--StartFragment--><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"></span></span></p><blockquote><p class="MsoNormal"><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">The initial infection could then set off a lifelong pattern in which later infections reawaken HERV-W, causing more inflammation and eventually symptoms. This process explains why schizophrenics gradually lose brain tissue. It explains why the disease waxes and wanes like a chronic infection. And it could explain why some schizophrenics suffer their first psychosis</span></span><b><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"> after a mysterious, monolike illness.</span></span></b><!--EndFragment--><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"> </span></span></p><p class="MsoNormal"></p></blockquote><p class="MsoNormal"><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Sound familiar?</span></span></p><p class="MsoNormal"><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">And here is the last paragraph, which brings hope:</span></span></p><p class="MsoNormal"> <!--StartFragment--> </p><p class="MsoNormal"><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"></span></span></p><blockquote><p class="MsoNormal"><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">She is running a </span></span><a href="http://www.sheppardpratt.org/sp_htmlcode/sp_clinres/sp_clintrials.aspx?ProgType=2"><span style="text-decoration:none;text-underline:nonecolor:#160072;"><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">clinical trial</span></span></span></a><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"> to examine whether adding an anti-infective agent called </span></span><b><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">artemisinin</span></span></b><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"> to the drugs that patients are already taking can lessen the symptoms of schizophrenia. </span></span></p> <span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Even after all that, many medical experts still question how much human disease can be traced to viral invasions that took place millions of years ago. If the upcoming human trials work as well as the animal experiments, the questions may be silenced—and so may the voices of schizophrenia.</span></span></blockquote><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"> </span></span><!--EndFragment--><p></p><p class="MsoNormal"><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">(Artesunate, a derivitive of artemisinin, is what I am taking along with wormwood per Dr. Cheney's instructions.)</span></span></p><p class="MsoNormal"><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">So besides the eerieness, the main thing I took away from this article is that CFS does not have to shift this paradigm alone. Schizophrenia is "one of the most common mental diseases on earth, affecting about 1 percent of humanity" A lot is at stake. People are doing research on this. </span></span></p><p class="MsoNormal"><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">*After I posted this I did a quick google for "HERV-W cfs" and the first thing to come up was this </span><a href="http://forums.aboutmecfs.org/showthread.php?8912-The-Insanity-Virus-HERV-W-in-MS-and-schizophrenia"><span class="Apple-style-span" style="font-size:small;">thread</span></a><span class="Apple-style-span" style="font-size:small;"> on Phoenix Rising.</span></span></p><!--EndFragment--></span></span></div><!--StartFragment--><!--EndFragment-->Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com3tag:blogger.com,1999:blog-8097016924982298387.post-59413189775579630902011-02-07T14:23:00.001-08:002011-02-21T05:33:59.741-08:00Is this a life?<span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">I know a few posts ago I wrote that I was feeling better. Well, forget about that. I am worse than ever.</span></span><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">I play Snood and Geosense. Any little online game that I can play without having to think. No chess puzzles. No crosswords. Just shooting little colored circles at other colored circles or clicking on cities on a map. For hours. Compulsively. I want to stop, but I don't, or can't. This happens sometimes and it's been going on for years. I tried deleting Snood from my hard drive for a few years but there are always other games free online that I will find my way to. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">I suspect I do it because I can't do anything else. My biggest complaint right now, what bothers me more than my terrible digestion and back pain, is the inability to focus. But it's easy to focus on Snood. And if I tear myself away, what will I do if I can't focus on anything?</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">A few years ago I had been playing Snood for hours, compulsively. It must have been around this time of year because I remember my friend was over watching the Oscars. And for some reason I took an Adderrall. And after 15 minutes I didn't want to play Snood anymore. It was amazing. I was free. It was that easy. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">But I don't think I have any now. And even if I did, they have some bad side effects sometimes. They're not something you can take regularly for too long. I know, I tried. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">So that is one of my more obvious addictions/vices. But I think I have another: school. And yesterday I fell off the wagon.</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">School is a good thing, generally, but not for me. Not right now. I am too sick and school makes me sicker. I knew it was bad for me but I kept going and dropping out when I had exhausted myself, and going and dropping out...</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">And yesterday, even though I am worse than ever, and maybe because I am worse than ever, I let myself entertain the idea of online classes. I gave my contact info to a website and a minute later my phone was ringing. A representative wanted to talk to me about my educational opportunity. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><i><span class="Apple-style-span" style="font-size:small;">We're just like a real university! We're for people with a </span><b><span class="Apple-style-span" style="font-size:small;">burning desire</span></b><span class="Apple-style-span" style="font-size:small;"> to work in the career of their choice. You have to commit 20-35 hours a week to your classes...</span></i></span></div><div><span class="Apple-style-span" style="font-family:arial;"><i><span class="Apple-style-span" style="font-size:small;"><br /></span></i></span></div><div><span class="Apple-style-span" style="font-family:arial;"><i><span class="Apple-style-span" style="font-style: normal;"><span class="Apple-style-span" style="font-size:small;">Then I knew this wasn't for me and I tried to say so, I may have a burning desire but I was all burnt out so it didn't matter. But I was talking to a salesman so the conversation didn't end quite that quickly. But even after we hung up I kept thinking about it. It was like a little devil on my shoulder. </span><i><span class="Apple-style-span" style="font-size:small;">Maybe you could do 20 hours a week if you didn't have to get dressed or drive anywhere for the classes or walk around a campus...you won't know unless you try...won't it feel good just to try?</span></i><span class="Apple-style-span" style="font-size:small;"><br /></span></span></i></span><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">And then I wanted to talk to someone about it, so I called my mom, who is always saying I should look into online courses. So she was happy to hear that I did, which had the unexpected effect of making me sad. We talked awhile and it actually ended up sounding like I was going to do it...even though I knew I wasn't. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><i><span class="Apple-style-span" style="font-size:small;">20-35 hours a week</span></i></span></div><div><span class="Apple-style-span" style="font-family:arial;"><i><span class="Apple-style-span" style="font-size:small;"><br /></span></i></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">I think about my typical day. Waking up is hard, and nowadays, usually a little after noon. But once I've been up for 15 minutes and brushed my teeth and done my medicine routine, that's when I feel my best. But it lasts for half an hour at most. Then I'm weak, maybe from reading too much, maybe from not eating. Maybe for no reason. And then it's time to eat something or I will get even dizzier and fainter. I go to the kitchen (most days, there's been times I am too tired and just wait all day for my boyfriend to come home from work and get me food.) But usually I go to the kitchen and open the refrigerator. Sometimes I might stop there if there's nothing I can just grab and eat. Sometimes if anything requires mixing or heating up I give up and go back and lie down. But I'd say more than half the time I can heat something up or there is something I can just grab. So I eat. And then I start to feel the coma coming on. I feel poisoned, dizzy. I might lay down and just close my eyes. I might go to sleep. I might stay awake but be useless. And this is how I feel for the rest of the day, maybe I will feel better again around midnight. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">At the beginning of the month I could read real books. But not now. I'm listening to The Immortal Life of Henrietta Lacks. It's really good. But I can't listen to it today. Today is one of those days I am feeling sorry for myself and don't want to listen to stories about people being doctors and journalists and driving and eating and living lives they apparently take for granted. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">I'm afraid I haven't made my point but I have to stop writing and just post this soon or it will never get finished and posted. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">I read Toni Bernhard's How To Be Sick last month. I really liked it. There is some great advice in there. Good attitudes I've tried to adopt. But it doesn't happen overnight. She says that when you feel sad about something you can no longer do, instead, focus on feeling happy for the people who can do it. Easy at first, but keeping it up as an attitude...will take time. She also says that when you are feeling sorry for yourself have compassion for yourself and compassion for everyone else who is suffering. It's a beautiful idea. But easier said than continually done. It's a Buddhism inspired book, but she says you don't have to be a buddhist to benefit from it or believe in God or anything like that. But there is one thing you do have to do she doesn't mention that is just a big a leap. You have to change your idea about what a full life is supposed to be. You have to be OK with being sick. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">She was a law professor when she got sick and now she seems to be mostly housebound, like me. She says she discovered opera and tennis after getting sick. So on a night when her husband is going out with her family and friends and she is sad that she can't go, she tries to make the best of it and listen to an opera CD. </span></span></div><div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Today I got up and felt pretty good, considering. I was able to unload the dishwasher, which usually means it's a good day. Which is good, because last night was terrible. Jim was over. I don't remember what we did. Watched two episodes of Monk on TV and then he just hung around while I addictively played Geosense and ate the gluten free cookies I made him get me. I wanted to tell him about my day, about the online classes, but I was too tired to talk. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">It's been 3 hours now since I had breakfast and I'm starting to come out of my coma...but I didn't eat much and I'll have to eat again soon. After I ate I sat on the couch and I asked myself, what can I do now? Can I do the Monday crossword? No. Can I read? No. Can I listen to an audiobook? No, no. Can I listen to music? Maybe... I thought of Toni Bernhard and her opera. I put on a classical radio station. At first it's energy and complexity annoys me, but after a few minutes I'm enjoying it and I close my eyes and lie down. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">Lying on my stomach. Listening to classical music on the radio. I know this might be all I do today. "Is this a life?" I ask. And I know I have to answer yes, it is, because the other answer will be overwhelmingly depressing. </span></span></div></div></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:x-small;">*My days are not totally books and music. Before I ate and right after I also talked to or left messages for 3 different doctors and wrote an e-mail. I think about doctors and medicines all the times. It just didn't just fit into this post. </span></span></div>Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com3tag:blogger.com,1999:blog-8097016924982298387.post-22675409550667903772011-01-17T15:47:00.001-08:002011-01-17T16:06:32.480-08:00Let’s all give each other a pass, shall we?<span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">I read David Rakoff's new book of essays "Half Empty" last month. The first essay is about an interview he did with a psychologist who wrote a book called "The Positive Power of Negative Thinking". She doesn't say pessimism is better than optimism, but that they both have their attributes as well as their blind spots, and whichever one you are, half empty, or half full, things will probably turn out the same regardless. I liked that. </span></span><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;">The last essay was about his second cancer diagnosis. He had Hodgkin's disease when he was 22, and now in his 40's, he was diagnosed again with cancer and faced with the possibility of of losing his left arm because of a tumor. Fortunately for him he beat the cancer and kept his arm. But there was a long time where he didn't know how things were going to turn out. His account of his friends reactions to his illness is hilarious:</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 10.0px Helvetica"></p><blockquote><span class="Apple-style-span" style="font-size:small;">A friend asks if I’ve “picked out” my prosthetic yet, as though I’d have my choice of titanium-plated cyborgiana at my disposal, like some amputee Second Life World of Warcraft character. Another friend, upon hearing my news, utters an unedited, “Oh my God, that’s so depressing!” Over supper, I am asked by another, “So if it goes to the lungs, is it all over?” Regrettably, very possibly, I reply, and when I go on to mention as how they no longer give much radiation for Hodgkin’s he says, “Well, you got twenty-five years out of it,” as if the radiation was a defenseless washing machine I was maligning, and what did I expect, really?</span></blockquote><p></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 10.0px Helvetica"><span class="Apple-style-span" style="font-size:small;"><br /></span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 10.0px Helvetica"><span class="Apple-style-span" style="font-size:small;">But here is the part I wish I could tattoo on the inside of my eyelids as a reminder for myself:</span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 10.0px Helvetica"><span class="Apple-style-span" style="font-size:small;"><br /></span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 10.0px Helvetica"><span class="Apple-style-span" style="font-size:medium;"></span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 10.0px Helvetica"></p><blockquote><span class="Apple-style-span" style="font-size:small;">...But here’s the point I want to make about the stuff people say. Unless someone looks you in the eye and hisses, “You fucking asshole, I can’t </span><i><span class="Apple-style-span" style="font-size:small;">wait</span></i><span class="Apple-style-span" style="font-size:small;"> until you die of this,” people are really trying their best. Just like being happy and sad, you will find yourself on both sides of the equation many times over your lifetime, either saying or hearing the wrong thing. Let’s all give each other a pass, shall we?</span></blockquote><p></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 10.0px Helvetica"><span class="Apple-style-span" style="font-size:small;"><br /></span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 10.0px Helvetica"><span class="Apple-style-span" style="font-size:small;">Yes let's! Because as much as I get upset when I think someone has said the wrong thing to me, I worry much more about when I think I've said the wrong them to someone else who's suffering. It's all awful and awkward. We're all trying our best. I hope I can always remember that. </span></p><p></p></span></div>Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com4tag:blogger.com,1999:blog-8097016924982298387.post-80534902440292786522010-12-25T10:20:00.000-08:002010-12-25T10:31:59.737-08:00Snowman on a Ledge<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJIFvDC6naBF3NAx7dnt2urOo0XH6d2AM6HCAviojOmh1JnZ_0pclquc6z5tELplgyaOkactS9J7xYkLeBesQ9rWRLbmkjymLAXTjFMA2xE32XC5mtZe6pNe04hSmXMysN1Pi74wEJTO8/s1600/photo.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 239px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJIFvDC6naBF3NAx7dnt2urOo0XH6d2AM6HCAviojOmh1JnZ_0pclquc6z5tELplgyaOkactS9J7xYkLeBesQ9rWRLbmkjymLAXTjFMA2xE32XC5mtZe6pNe04hSmXMysN1Pi74wEJTO8/s320/photo.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5554688885626309842" /></a><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size: small;"><br /><br /></span></span><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size: small;">So glad it's a white Christmas here in Ohio. I made this snowman from the snow on my window ledge last week. Peppercorn eyes, carrot nose, two arms made out of pretzels...</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="font-size: small;">He's melted away now but I like looking at the picture. Merry Christmas and Happy Holidays everyone, and take it easy!</span></span></div>Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com5tag:blogger.com,1999:blog-8097016924982298387.post-9202085103194670042010-12-21T15:12:00.000-08:002010-12-21T22:35:05.588-08:00Tarantella<span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">"Warning: Music Theory Ahead - Circle of Fifths" <span class="Apple-style-span" style=" ;font-family:Georgia, serif;"><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">I'd been reading the first two chapters of </span></span><i><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">The Only Basic Piano Instruction Book You'll Ever Need</span></span></i><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">. I put it down.</span></span></span> It was hard enough reading the basic stuff I already knew. Has my brain always wanted to shut down like this at the slightest onset of stress or difficulty? It's hard to imagine it was ever different, but it was, it definitely was.</span></span><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"><br /></span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">My sister comes home and talks excitedly about what classes she'll be taking for her final semester of grad school. My brother, in his last year as an undergrad, laments the rigorous grad school application process. My dad spends most the day programming the final touches on his iPhone calculator app. I miss learning things. </span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"><br /></span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">I've been staying with my parents for a month now. I was feeling better when I set out, so instead of the usual herbal teas for colds and sore throats I packed yummy chocolate teas and </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">caffeinated</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> green teas. I had a separate suitcase just for books. (Getting a kindle this Christmas I think...) But as soon as I got home I got sick and had to have my dad run out to the health food store and buy me more throat comfort tea. A month later and I still haven't really recovered. My mom and sister are on their way home from taking Grandma out for a Christmas lunch. I'm sorry I missed it but I was afraid to go out in the cold feeling like this. And really, it would just be imprudent. </span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"><br /></span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">Haven't made as much progress in my books as I'd hoped. Haven't even started </span></span><i><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">The Broom of the System</span></span></i><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">, which I chose just because it takes place in Cleveland. Or so I heard somewhere, but when I mentioned it to my boyfriend who read it he wasn't sure. He's currently reading </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">DFW's</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> </span></span><i><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">Everything and More: A Compact History of Infinity</span></span></i><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">, the rare literary book that requires you to remember your college math. A computer science major, he's getting through it but slowly and with difficulty. I know I will never try. My math education ended my junior year when I failed trig. Or was it the year before when I slept through every Algebra II class? (I felt terribly guilty about it, but it was after lunch, and still now most days I don't have the energy to digest food and stay awake at the same time.) It's a little sad because one of my most vivid childhood memories is my dad telling his little girl, who back then was a good math student, to make sure to take calculus because it was what "separated the high paying jobs from the low paying jobs" </span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"><br /></span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">My regrets about never learning calculus are small. I did love physics. I think I can mark the strike of my </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">CFS</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> by my grades in physics, sophomore year, A's first two semesters, and C's and D's the last two. I remember everything going foggy and blaming it on the student teacher not being very good. I remember my professor asking me in front of the whole class, mostly seniors, if I had "</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">sophomoreitis</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">". And I also remember the day he pointed a video camera at us connected to a TV and everyone laughed because my face was the only one you couldn't make out. I was all a white blur in the low resolution with my pale skin and </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">blonde</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> hair. </span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"><br /></span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">Physics was fun but I was never going to be a physicist, </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">CFS</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> or not. I would have taken calculus though, it would've looked good on my college applications, and I would actually know what my dad is talking about when he tries to explain to me all the advantages of his iPhone calculator app. That would be nice. </span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"><br /></span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">So when I got to the Circle of Fifths Warning, I put the book down. Learning the Circle of Fifths and all that theory was exactly why I bought the book, but today's not the day. There will only be one or two windows of opportunity in the next month or two where my brain and body are ready and willing and normal enough and I can sit at a piano and try and learn. But not today.</span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"><br /></span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">Instead I pick up</span></span><i><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> Unbroken</span></span></i><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">. It was not in my suitcase of books. Our town has an independent bookstore and when I first got home I asked my mom to take me there so I could get a birthday card to send to my boyfriend. I didn't want to buy anymore books. My recent pilgrimages to Elliott Bay Book's and Powell's left me with more than enough. Plus I had asked for that Kindle for Christmas. But then I saw the store owners had put it on the main display. It was the only featured book, my heart melted a little. Not that they knew about her </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">CFS</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> and did it out of the goodness of their hearts, they did it because they knew it would sell, be a good Christmas gift etc. But still. I picked it up and mumbled something about having to buy it. My mom asked why, and I told her about how the author had </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">CFS</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> and I felt some kind of duty, affinity. "I'll buy it for you" she said, before I was finished trying to explain. </span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"><br /></span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">My bookmark is only on page 11. I flip to the back cover. All the reviews are for </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">Seabiscuit</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">, except the one on top, from </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">Rebecca</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">Skloot</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">, "author of The Immortal Life of Henrietta Lacks" which I was excited to see featured at both Powell's and Elliott Bay and on pretty much every top 10 list this year. I remember turning on NPR and hearing an interview with the author back in February when it came out, but I didn't catch her name. If I did though I would have immediately assumed she was related to Floyd </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">Skloot</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">. (How many </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">Skloots</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> can there be?) I don't remember exactly which of his contributions to </span></span><i><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome</span></span></i><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> made such an impression on me that I googled him, but, I had. (I can't look now, the books' at my Los Angeles apartment.) </span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"><br /></span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">I read the author bio for Laura </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">Hillenbrand</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> which mostly lists all the accolades for </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">Seabiscuit</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> and reminds you that it was made into a Academy Award nominated movie. It mentions her charity work. And it mentions her New Yorker article "A Sudden Illness" won the 2004 National Magazine Award. It doesn't mention </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">CFS</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">. It's on a need to know basis, really, isn't it? Her fatigued fan base knows what the "sudden illness" is. And we know why the advanced review is from </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">Rebecca</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">Skloot</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">, what same circle they are in.</span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"><br /></span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">So far Unbroken is a joy to read but at the pace I'm going I know I won't be done by Christmas, which is good. I'll have it to read on the plane ride home. If only Kindle gave discounts for books if you could prove you already owned a hard copy. Oh well. I will carry this heavy book onto a plane with me.</span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"><br /></span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">I'm drinking delicious Throat Comfort tea now, hoping it will help my broken sore throat. It's hard because I've been singing so much lately, before the sore throats, that is. I'm used to singing every chance I am alone. Every shower, every car ride. Sometimes, elevators. The last year and a half though I have been too tired to sing at all. </span></span><i><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">Too tired to sing! </span></span></i><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">It isn't easy, alone in my apartment, to listen to my favorite songs and keep quiet. But it's not like I have a choice. My lungs are heavy. My voice is small. And if I dare to try, I have to give up after a few lines.</span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"><br /></span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">As I've noted previously though, November was a good month. One day maybe during the third week, I sat down at my desk in my swivel chair and drank two cups of heavily </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">caffeinated</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> chocolate tea with every intention to write 3,000 words to catch up for </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">NaNoWriMo</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">. I didn't get a word written though. I played a song that was in my head, and realized I had more than enough energy to sing along, and loud. And that was what I did for the next hour. I sat in my swivel chair and swiveled around and sang along for a whole delirious hour. </span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"><br /></span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">Less than a week later, sore throat, coughing, congestion, fever. And I think, it always seems like whenever I sing too much I get sick. And it makes me sad because I don't want to stop singing. I've been noticing this possible pattern for years now. And only this time did it occur to me, maybe it wasn't the singing that caused me to get sick, maybe I was singing</span></span><i><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> because I was sick</span></span></i><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">. </span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"><br /></span></span></div><div><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">In almost every beginning children's piano book there will be an arrangement of a Tarantella. There was in two of mine. And they will say that it was a dance the Italian villagers did when they were bit by tarantulas to try and sweat the poison out of their system. Later I heard somewhere that it was actually the poison that made them go crazy and compelled them to dance. I thought I should get my facts straight before I blogged about it, but my W</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">ikipedia</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> research was inconclusive. The main article on Tarantella said it was both, the bite caused a hysterical condition called "</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">Tarantnism</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">" "</span></span><span class="Apple-style-span" style=" line-height: 19px; "><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">the symptoms of which were an irresistible need for a wild and rapid whirling motion bringing the victim to the point of exhaustion. </span></span></span><span class="Apple-style-span" style=" line-height: 19px; "><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">For a long time, the local population believed that the only way to suppress the symptoms and to cure the bite was by using a very rhythmic and fast music."</span></span></span></div><div><span class="Apple-style-span" style=" line-height: 19px; "><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"><br /></span></span></span></div><div><span class="Apple-style-span" style=" line-height: 19px; "><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">But when I click on "</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">Tarantintism"</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">, the wiki-authors caution that there are strong suggestions that</span></span></span><span class="Apple-style-span" style=" line-height: 19px; "><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> "there is no organic cause for the heightened excitability and restlessness and that gripped the victims." And that "</span></span></span><span class="Apple-style-span" style=" line-height: 19px; "><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">The phenomenon of </span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">tarantism</span></span><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"> is consistent with mass psychogenic illness."</span></span></span></div><div><span class="Apple-style-span" style=" line-height: 19px; "><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;"><br /></span></span></span></div><div><span class="Apple-style-span" style=" line-height: 19px; "><span class="Apple-style-span" style="font-size:small;"><span class="Apple-style-span" style="font-family:arial;">I get annoyed and stop reading.</span></span></span></div>Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com3tag:blogger.com,1999:blog-8097016924982298387.post-75943875100040011762010-12-09T12:34:00.000-08:002010-12-10T11:08:20.786-08:00a poor go-to-sleeper<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhvVmzjnYZ6-NaWWQ2W_FTDkNunNrk-gvhWu1NuAm6Accj4haGWYRdf5cd31x8NhaT9Oy4gt2k8YEnFvqWTKs9wq0BLnTxNuhVzLFhYYtHpCIjgzA65PAdJDaYpwm_yPIFOtzkTb5ZVs4/s1600/Nabokov_Speak_Memory.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 170px; height: 244px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhvVmzjnYZ6-NaWWQ2W_FTDkNunNrk-gvhWu1NuAm6Accj4haGWYRdf5cd31x8NhaT9Oy4gt2k8YEnFvqWTKs9wq0BLnTxNuhVzLFhYYtHpCIjgzA65PAdJDaYpwm_yPIFOtzkTb5ZVs4/s400/Nabokov_Speak_Memory.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5548784584825939330" /></a><br /><span class="Apple-style-span" style=" ;font-family:veranda, sans-serif;font-size:13px;"><div><span class="Apple-style-span" style=" ;font-family:veranda, sans-serif;font-size:13px;">Going through my old journals last night around 3am. Found this quote I copied from about two years ago when I was reading Vladimir Nabokov's memoir. I liked it so much I typed it all out:</span></div><div><span class="Apple-style-span" style=" ;font-family:veranda, sans-serif;font-size:13px;"><br /></span></div><span class="Apple-style-span" style="font-family:'times new roman';">All my life I have been a poor go-to-sleeper. People in trains, who lay their newspaper aside, fold their silly arms, and immediately, with an offensive familiarity of demeanor, start snoring, amaze me as much as the uninhibited chap who cozily defecates in the presence of a chatty tubber, or participates in huge demonstration, or joins some union in order to dissolve in it. Sleep is the most moronic fraternity in the world, with the heavies dues and the crudest rituals. It is a mental torture I find debasing. The strain and drain of composition often force me, alas, to swallow a strong pill that gives me an hour or two of frightful nightmares or even to accept the comic relief of a midday snooze, the way a senile rake might totter, to the nearest euthanasium; but I simply cannot get used to the nightly betrayal of reason, humanity, genius. No matter how great my weariness, the wrench of parting with consciousness is unspeakably repulsive to me. I loathe Somnus, that black-masked herdsman binding me to the block; and if in the course of years, with the approach of a far more thorough and still more risible disintegration, which nowanights, I confess, detracts much from the routine terrors of sleep, I have grown so accustomed to my bedtime ordeal as almost to swagger while the familiar ax is coming out of its great velvet-lined double-base case, initially I had no such comfort or defense; I had nothing-except one token light in the potentially refulgent chandelier of Mademoiselle's bedroom, whose door, by our family doctor's decree (I salute you, Dr. Sokolov!) remained slightly ajar. Its vertical line of lambency (Which a child's tears could transform into dazzling rays of compassion) was something I could cling to, since in absolute darkness my head would swim and my mind melt in a travesty of the death struggle.</span></span>Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com5tag:blogger.com,1999:blog-8097016924982298387.post-65271597769658678502010-12-05T15:43:00.000-08:002010-12-05T16:15:35.153-08:00Joint Hypermobility<div>I was excited to see <a href="http://www.suite101.com/content/joint-hypermobility-in-cfsme-and-fibromyalgia-a314422">this article</a> by Maija Haavisto about Joint Hypermobility and CFS/ME. It's the first time I've seen them mentioned together, and I've been wondering about it for awhile.</div><div><br /></div><div>About five years ago my left shoulder started making loud snapping and clicking noises whenever I moved it. Like my shoulder blade was smacking against my ribs. It was weird. My doctor also said it was weird and referred me to an orthopedic doctor. It was a long drive but I was worried my arm was going to fall off soon, so I went.</div><div><br /></div><div>I read baseball magazines in the exam room while I waited for the doctor. That's all there was and they were everywhere. I picked one that had an article about the Cleveland Indians on the cover, it made me feel at home.</div><div><br /></div><div>He came in and I lay down on the table and he put one hand on my shoulder and one on my wrist and moved my arm around to test the range of motion. Apparently he was impressed.</div><div><br /></div><div>"Look at that! Do you play softball?"</div><div><br /></div><div>"I did when I was a kid."</div><div><br /></div><div>"Were you a pitcher? I bet you could throw really hard. See how far your arm comes back?"</div><div><br /></div><div>"That's far?"</div><div><br /></div><div>"Yes!"</div><div><br /></div><div>"Well, I guess I threw pretty hard..."</div><div><br /></div><div>"I wish mine went back that far! Were you always flexible as a kid? Double jointed?"</div><div><br /></div><div>"No not at all! I was always the least flexible person in my dance class. I tried so hard to stretch every day but..."</div><div><br /></div><div>"Usually this kind of injury happens to people who are hyperflexible."</div><div><br /></div><div>"Well that's not me. Is there anything I can do about it?"</div><div><br /></div><div>He said he'd write me a prescription for physical therapy which helped a high percentage of the time. There was also a surgery option but I didn't want to think about it yet. At the time it wasn't very painful. </div><div><br /></div><div>He gave me a printout briefly explaining my diagnosis of "hypermobility" It said it usually happened to athletes and the elderly.</div><div><br /></div><div>"So how did it happen to me?"</div><div><br /></div><div>"I don't know. Why do you have blonde hair and I have brown?"</div><div><br /></div><div>I asked if it could have anything to do with my CFS, maybe poor circulation, but he waved me off. "No! How could this have anything to do with CFS?" </div><div><br /></div><div>I thought about asking, "Do you know what CFS is?" but didn't bother.</div><div><br /></div><div>I never used my prescription for physical therapy. I told him I was at USC, and he told me to go to one of the sports physical therapists there. This made no sense to me. Whatever treatment I got would really for people who had "injuries" as in, you could remember a specific time when you injured it. This had happened gradually and with no outside cause, so I wasn't sure if physical therapy could help any. I was convinced it was some kind of insidious symptom of the CFS. </div><div><br /></div><div>Now I'm fortunate enough to be working with a physical therapist in my neighborhood who's been through CFS. The click is still there but it's gotten a little better, along with the pain and soreness. </div><div><br /></div><div>When I got really bad, when I couldn't eat and stayed in bed all the time, all of my joints clicked, my other shoulders, my elbows, my knees, my hips, my neck, and finally I could feel individual vertebrae clicking in my spine when I stood up. It freaked me out. Thank god it's gotten a lot better and now it's mostly just my shoulders and elbows. And sometimes the neck, which freaks me out the most. I make a point never to let my head hang backwards, in case it snaps when I pull it up again. It doesn't really hurt, but it's...weird.</div><div><br /></div>Alisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.com0