tag:blogger.com,1999:blog-8097016924982298387.post3511893862947502975..comments2024-02-20T00:23:59.355-08:00Comments on blog Wormwood: Endless VacationAlisonhttp://www.blogger.com/profile/07064893477629124444noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-8097016924982298387.post-70120829792127190082010-05-20T13:09:01.074-07:002010-05-20T13:09:01.074-07:00Annie thanks so much! Please feel free to print o...Annie thanks so much! Please feel free to print out whatever you wish :)<br /><br />Dominique - Thanks for your thoughts. I don't think I'll be able to decide anything until it does feel right in my gut, which will probably take time.Alisonhttps://www.blogger.com/profile/07064893477629124444noreply@blogger.comtag:blogger.com,1999:blog-8097016924982298387.post-56280749279802199052010-05-14T21:57:21.219-07:002010-05-14T21:57:21.219-07:00Allison (sp?) I'm new here. Forget how I fou...Allison (sp?) I'm new here. Forget how I found you but glad I did. I can sense how overwhelmed you are. I was overwhelmed thinking and reading about your decision. I have often wondered if I were given the chance to do this with Dr. Cheney (who I adore) would I? The truth is, I just don't know. I, too, wonder about putting something in my body from somewhere else. <br /><br />I love the way you are processing it. That's great. One of the things I have learned is that if I don't have peace in my gut about something, it usually means, at least for the time, it isn't for me.<br /><br />I hope you find your 'peaceful' answer.Dominiquehttp://www.4wallsandaview.com/noreply@blogger.comtag:blogger.com,1999:blog-8097016924982298387.post-87195964272290300652010-05-12T21:09:21.268-07:002010-05-12T21:09:21.268-07:00Alison, I swear you are my favorite writer about C...Alison, I swear you are my favorite writer about CFS on the Internet. You take everything I want to say but for some reason can't get out and put it in the most poignant way.<br /><br />These are the kind of posts I want to print out and give to my family.<br /><br />xoxoAnniehttps://www.blogger.com/profile/14910318186594054287noreply@blogger.comtag:blogger.com,1999:blog-8097016924982298387.post-16798872288132132382010-05-12T19:20:18.802-07:002010-05-12T19:20:18.802-07:00Thanks for the comments everyone.
Lisa- Good luck...Thanks for the comments everyone.<br /><br />Lisa- Good luck with your decision as well. I wonder about clinical trials too...<br /><br />Meg - You said you found one? I looked on clinicaltrials.gov too but couldn't find it. <br /><br />Anon- Who is your doc if I may ask?Alisonhttps://www.blogger.com/profile/07064893477629124444noreply@blogger.comtag:blogger.com,1999:blog-8097016924982298387.post-14159018757450695942010-05-12T14:12:29.641-07:002010-05-12T14:12:29.641-07:00My doc is pushing stem cells, too.... when pressed...My doc is pushing stem cells, too.... when pressed, he admitted the clinic in central america will tell you they don't know what might happen to you down the line after stem cell therapy. scarey to hear him admit that. it's a tough decision and i wish you all the best with whatever you decide.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8097016924982298387.post-20024510445716896292010-05-12T04:01:08.500-07:002010-05-12T04:01:08.500-07:00"But eventually I realized I could be happy a..."But eventually I realized I could be happy and accept my situation without losing the will to keep trying to change it. "<br /><br />This is exactly where I am now. Its taken nearly 5 years but I feel like I've finally accepted the fact that I'm sick! I read something recently "When the Atlantic waves are rolling towards us they will drown us if we just weakly let ourselves sink under them - that's resignation. But acceptance is a strong act of the will, it means flinging ourselves on to the crest of the wave and allowing it to carry us into the shore."<br /><br />But of course that's easier said than done! I'm constantly struggling between accepting the situation and fighting to change it. Reading up on the science, questioning my doctor, eating a strict diet, reading up on nutrition, looking for a treatment, searching for a cure. (And all with a fuzzy brain that won't understand things properly!) Its stressful and heartbreaking. And then I remind myself of acceptance and I stop struggling for a moment. But the thing is I can accept being sick right now but I can't accept being sick forever.<br /><br />Your description of this illness as being in purgatory is so accurate. I've described it as my life being on pause. My life stopped when I was 23 and now I just watch my friends move on with their lives - getting jobs, moving, having relationships, going on holiday - while I'm trapped in a skeleton life where nothing changes. An where people begin to forget about you and you become more and more invisible. I just wish someone would press play and I could go back to living. <br /><br />I haven't looked into stem cell therapy, although I've read a little about it in some forums and blogs. Its not an option for me at the moment but I can imagine a little how difficult this decision must be for you. Good luck with it! xMiriamhttps://www.blogger.com/profile/07095641244876935060noreply@blogger.comtag:blogger.com,1999:blog-8097016924982298387.post-52906804189741082832010-05-11T18:38:38.056-07:002010-05-11T18:38:38.056-07:00Hi all,
I did a search on www.clinicaltrials.gov ...Hi all,<br /><br />I did a search on www.clinicaltrials.gov for CFS and stem cells, and there is one trial that's recruiting for patients. Unfortunately, the only two stem cell treatments that are proven to be both safe and effective are bone marrow transplants and skin grafts (and skin grafts only work permanently when the skin is taken from the same patient it's used to treat). I don't know whether a bone marrow transplant makes sense as a treatment for CFS because I simply don't know enough about the illness. And, unfortunately, that's why we didn't mention it in the book -- there's just not enough research yet on stem cells and CFD.<br /><br />Alison, I didn't take your post as a slight of the book at all; I am genuinely sorry that the science isn't there yet to help you and others in your situation. My main reason for replying for your post was to warn you against overseas clinics -- all too often, these clinics take your money and give you nothing but shattered hopes (and sometimes an even worse health status) in return. 60 Minutes recently did an expose on one of these alleged stem cell clinics in Mexico. Please, please, please, do not rush into your decision. The risks can be far greater than you know.<br /><br />My best to all,<br />MegMeg Schneiderhttp://www.megschneider.comnoreply@blogger.comtag:blogger.com,1999:blog-8097016924982298387.post-23270925194780221642010-05-11T16:42:45.242-07:002010-05-11T16:42:45.242-07:00Alison,
great post. Music has given me a boost a ...Alison, <br />great post. Music has given me a boost a few times too. A Cold Play concert last year and a Jonsi show just last week really hit the spot. No cure, but it's good for the endorphins every now and then. Agreed on the passive nature of the experience though. <br />Thanks for writing. <br />DanAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8097016924982298387.post-83586375576268325852010-05-11T15:34:29.283-07:002010-05-11T15:34:29.283-07:00great post alison. i'm trying to decide on st...great post alison. i'm trying to decide on stem cell treatment too. you have one more positive going for you on your decision tree...under 30. i'm over 40 so the chances of them working are even slimmer....it's a tough decision for so many reasons.<br /><br />meg, i know of many cfid's patients who would love to enroll in a clinical trial of stem cell treatment. are there any being conducted? otherwise it's out of country and 10's of 1000's of dollars for us for now.<br /><br />take care, lisaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8097016924982298387.post-74910007201286554972010-05-11T10:48:32.863-07:002010-05-11T10:48:32.863-07:00Meg,
I hope I didn't give the impression this...Meg,<br /><br />I hope I didn't give the impression this was any kind of book review. It was more just an impression of how overwhelmed I am. Like I said, I only read the first chapter and just skimmed the rest. Actually I thought, at least so far, that the book is really well written and probably the best book out there for what I'm looking for. I was just disappointed that, like you said, there isn't enough science to support stem cell based cures. <br /><br />Thanks for your suggestions to look into clinical trials. However, my doctor informs me that since clinical trials with stem cells are so expensive and have to be approved by the FDA, it would be a very long time before there were any clinical trials approved for Chronic Fatigue Syndrome. In fact he said it would probably be the last disease that was approved. <br /><br />Thanks for your comment. I've added a little asterisk at the end to try and clear up the impression this isn't a good book. I actually think it is very well written and helpful, it's just been hard for me to get through it for emotional reasons. <br /><br />AlisonAlisonhttps://www.blogger.com/profile/07064893477629124444noreply@blogger.comtag:blogger.com,1999:blog-8097016924982298387.post-40357140357737799632010-05-11T07:50:23.178-07:002010-05-11T07:50:23.178-07:00Alison, I'm so sorry about your illness, and e...Alison, I'm so sorry about your illness, and even more sorry that Dr. Goldstein and I couldn't support your dreams of a stem cell-based cure in the book. Unfortunately, the science just doesn't support it yet. And I'm particularly leery of overseas clinics that make fantastic promises without the science to back it up.<br /><br />I suggest looking into clinical trials. You can help the research progress and be assured that the people administering the trial will watch out for your safety at the same time.<br /><br />Best wishes,<br />Meg Schneider<br />Coauthor, Stem Cells For DummiesMeg Schneiderhttp://www.megschneider.comnoreply@blogger.com