Internet information on ME is wildly inconsistent, reflecting the underfunded state of ME research. Sites with outdated theories about ME outrank those with updated information. But, perhaps the most confusing topic is ME prognosis. For those of us who are relatively new to this condition, we'd like to know, "what are my chances of getting well again?" Well, here's why it's so frustrating to try to find an answer to that question:
1. Some websites, such as this, claim that as much as 50% of ME sufferers recover. But even if true, it raises the question, what is meant by "recovery." Clearly this article isn't referring to full recovery. I am already more or less "functional," but I'd like to know if I'll be able to exercise again, travel to foreign countries again, coach my kids in sports, and other high-energy activities.
2. Other studies show recovery rates of as little as 5%. What?
3. My doctor (an ME specialist) says there is no "cure" per se, but sustained remission is possible. As long as "sustained" means "years at a time," and "remission" means "full return to normal activities," I'll take it! But, he didn't exactly say that.
4. The CFS message boards are full of people who have had CFS for years or decades. At the same time, the message boards are completely devoid of people who have successfully recovered from CFS. Is recovery that rare, or do people move on with their lives after recovery?
5. Anecdotally, I read a book called Recovery from CFS: 50 Stories. Upon buying the book, I thought, "Great. Now I know of at least 50 people who have recovered. That's...something." But, after reading the book, it's not clear that all of the authors truly had CFS. One gentleman, for instance, claimed to have recovered after renouncing a centuries-old masonic curse! 'Nuff said.
6. Also anecdotally, I personally know of at least 3 people who were diagnosed with CFS and have recovered.
7. [7/30/12 update: This website says that, of those who recovery, most recover in the 3 to 6 year range.]
So, I'm left with the vague impression that my chances of long-term remission are probably somewhere between 5 and 50%. I prefer to think they are closer to 50% because I am relatively young, in-shape (other than the CFS), aggressively seeking treatment, and my case has been relatively mild, so far. Based on this list of factors, it would seem that I stand the best chance of recovery.
If you want to know the name of somebody who has recovered, do a Google search for Bruce Campbell and CFIDS. He runs self-help groups over the Internet. He doesn't say he can cure you, but your ride on the CFIDS roller-coaster may become smoother.
ReplyDeleteJusty, thank you for relating your experience. Should I be lucky enough to go into remission, I will remember this advice.
ReplyDeleteI enjoy your posts on PR.
Regards,
PWCalvin
You'll find this interesting. To much info to retype so just buzz over and take a look at my post. It is a summary of a lecture Dr. Bell ( the Lyndonville outbreak doc) gave regarding a 25 year follow up with his CFS patient cohort. http://infinatedays.blogspot.com/2011/04/dr-bell-part-1-main-lecture.html
ReplyDeleteI've had it on and off since 1999. Not as bad as some but kept me in bed for years at a time. Comin up on 41 years old and starting physical therapy school in May. A few years ago couldn't stay awake more than a few hours a day but with every new diet or remedy I got better- then sometimes, it would all just stop working. So scared I won't finish school and I haven't worked since before I got it- don't know if I can. It is scary. The future is terrifying sometimes. I thought that if I just got out of the South where the blazing sun would bring on all the symptoms I would be fine. Now I'm up North and with the cold there are new challenges and I am not the superhuman I thought I'd be. Now I have to face this for what it is. My daughter has it too so I'm trying to show her a full life is possible. Your blog is very encouraging. I hope you get the vibrant life you once enjoyed fully and completely.
ReplyDeleteThanks Amanda. I always find it interesting to hear the stories of other patients. It gives me perspective and helps me feel more connected to the patient community - which is so important with a disease like this that can make you feel like nobody understands. Thank you.
DeleteHaha, I also had read that book last year after 5 stories I realized it was just a bunch of Bull$%#@
ReplyDeleteWe have yet to find an actualy CFS patient fully recover , aside from Dr.Chia's son which after watching the episode 39 find hard to believe... he had a true CFS to begin with... or maybe he had just A virus and it was easily contained.