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 Sites with outdated theories about ME outrank those with updated information.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.