Recently I came across this new article that provides a little more hope for those, like myself, looking for good news. While the author doesn't reduce his findings to a percentage, he clearly believes that most PWMEs will "recover" in one sense or another. His sources and authorities seem sound.
I'm going to have to remember this article and return to it every so often. The problem is, while message boards are a great way to network with other patients and learn about new treatments, they also leave one with the impression that very few people are recovering. But, as my father-in-law (a scientist) pointed out, the ME/CFS message board crowd is a "self-selecting" group. The boards may not be the best places to get a sense of remission rates.
While the linked article certainly lifted my spirits, it also ends with a cautionary note about what is meant by "recovery."
"As I have already stated, a classic mistake people with CFS often make is to think recovery means "returning to how I was living before I got sick." The person will seek to recreate the conditions in which illness initially developed, and will of course relapse. Many are presented with this lesson repeatedly, until they shift their criteria for what "recovery" means. It is not desirable to return to "how it was before."I would love to return to exactly how I was before, but I'm not expecting that. If I can just get to a point where I can do some mild exercise without crashing, and plan family trips without worrying about whether a crash will interfere, I will be happy.
Once again a great article Patrick. Yes, recovery begs defining in our world. I can say that I have recovered a bit, from 60% pre illness levels to 70% now. Not sure if this has some naturally, or as a result of the supplements. Curious what you have decided about your work schedule. But, I crave for more improvement of course. As you said, the expectations of regaining life as we knew it are fading. Functionality and a decent quality of life are what I focus on now. A bit of hope though, and we all need that!
ReplyDeleteThanks Bret. To answer your question about my work, for now I've decided not to reduce my work schedule on a regular basis, but I worked out an arrangement where I will no longer get paid for days I take off. That way, when I'm starting to feel a crash come on, I can take off work without worrying about building up too many excessive absences as a salaried employee. So far, I haven't had to use that option too many times, but it has come in handy the times I have needed it. If this measure doesn't prove effective, I might move to a schedule like yours.
DeleteI think you said it exactly right: functionality and a decent quality of life are good goals at this point.
These are my notes from Dr. Bell's lecture I attended last year. Of his patient cohort in Lyndonville NY, he had 40% recover to 100% functionality, 40% recover to 80% functionality and 20% stay sick or get worse. This was a 25 year followup.
ReplyDeletehttp://infinatedays.blogspot.com/2011/04/dr-bell-part-1-main-lecture.html
I agree that recovery needs to be defined clearly. Also you have to realize that those that have recovered from CFS/ME aren't hanging out in CFS chat rooms and bulletin boards. They are back out in the world living life so we do get a skewed view of reality. There is a friend of mine that was a very strong activist while she was sick the last couple of years but now that she has recovered she has all but disappeared from the patient community.
Thanks Baffled. That is exactly the kind of thing I like to hear because it gives me hope. Sometimes the message boards leave me with a skewed perspective on recovery rates. Thanks!
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DeleteI have gone from about five to ten percent of my former energy to almost sixy percent at times.
DeleteSomewhere during this journey I stoppped saying "I will be happy when..." and tried to find happiness in whatever level of fatigue came along.
It's not easy.
That is really great news Beatrice - the part about going from 10 percent to 60%. I love to hear stories like that because I think it gives us all hope. I hope you continue to improve. And I completely agree about finding happiness in whatever state you happen to be in.
DeleteTake care and thanks for stopping by.