The IOM Report proposes new name: Systemic Exertion Intolerance Disease

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:

Chronic Fatigue Syndrome Gets A New Name

And the proposed new name is...

Systemic Exertion Intolerance Disease (or SEID)

I was actually so happy I cried. I know it's not the best name ever, but anything is better than CFS.

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.

Of course this is just a proposed new name by the Institute of Medicine (IOM). As I read in The Occupy CFS blog's IOM report card, the US Department of Health and Human Services still has to accept this definition.

I had three main hopes for the IOM report:

1) That they would recommend a new name (one that was not worse than CFS)

 2) That post-exertional malaise (PEM) would be emphasized.

 3) That the two-day exercise test would be used somehow as a biomarker.

All three hopes have been met.

If you're unfamiliar with the two-day exercise test, also known as VO2 Max test, please read Cort Johnson's excellent blog post, which explains why this is such an important test when it comes to distinguishing CFS from depression and deconditioning.

I was afraid two-day exercise tests would be completely ignored. But they are actually recommended on page 46, "Objective Tests." Objective tests (!)

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)

From Recommendation 4 on page 25 of the report:

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.

The term “chronic fatigue syndrome” can result in stigmatization and trivialization and should no longer be used as the name of this illness. 

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.

“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 The Washington Post, today.

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.

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 horrible. This is so messed up. And yet I've just come to accept it.

Still, I had taken the two-day cardiopulmonary exercise test last year at the Workwell Foundation. 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!"

Yeah, I was wrong.

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, "Actually..." Ha! Gotcha! I pointed to the part of the study that distinguished CFS patients from sedentary people and people with depression.

She didn't seem impressed.

At the end of the appointment, after I had told her about my symptoms and history and what I did all day, she said, "I'm going to be honest with you, I think it's just depression."

Well, at least she was honest. Completely wrong, but honest.

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, "You need to push yourself. You are making  yourself a cripple!"

No, I'm really, really not. And doctors should not be allowed to say that anymore.

Twitter and Facebook

I finally created a Twitter account for the little things I want to say in between blog posts. Please follow me @blogwormwood


I've also created a Facebook page 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. 

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. 

Am I not your donkey?

I have found the character who I identify with most in the Bible: Balaam’s Donkey. 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.

Two years ago, when I was just starting to get into audiobooks, I got this idea that I'd listen to the entire Bible. 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. 

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.

I didn't have an extensive Biblical education, but I did recognize most of the stories. Many were new though, like Balaam and the Donkey. 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 and the land of Canaan, 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. 

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. 

 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. 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.” 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.”

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. 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.” 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.” 

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.

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. 

Before I got sick, I was a straight A student. I wasn't perfect, but, as my dad always used to say, I was "practically perfect." 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. I had a pleasant attitude and 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.

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.

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. 

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.

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?" 

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.

"Why is Alison missing school and failing classes? I guess all teenagers go through a rebellious phase. It was bound to happen."

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.

"Why is my donkey veering off the road? I guess she's finally lost her mind. It was bound to happen."

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."

"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." 

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. 

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...conditional it all was -- it's hard to put behind you.

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."

And ultimately, I wish I had had that much faith in myself. But maybe that is too much to ask too. 

Health Update / Nasal VIP

It'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.

Why have I not been blogging? Because I'm doing worse? Because I'm doing better? A little of both actually.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Times up. Time to nourish/poison myself. You know what I'm talking about.

Dream House

Today 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.

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.

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.

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, "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" 

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.

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...

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.

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.

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.

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.

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.

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...)

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.

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 yogurt

afternoon naps/Cortef/nagalase

things conducive to sleeping in the afternoon:

slow blues music

slow hot weather

sleeping cats

chronic fatigue syndrome

it was just by crazy random happenstance they all call came together today.

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. 

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. 

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. 

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. 

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. 

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. 

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. 

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.

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.

It seems they only lie in pairs and sleep

Hurray for backyards and sunny days!

My first post from my phone using the Blogger app