Something which has troubled me for years is the insistence that a given treatment work for everyone before people think of trying it. The attitude even of the FDA is troubling.
Individuals are quite different, and can tolerate different things. "One man's meat is another's poison" is most decidedly true. There are so many things that cannot yet be explained. (Why do some people die from eating peanuts while others can eat them happily?) Yes, I know some are allergic to peanuts, but that's just restating the problem. It's the why of the allergy that still remains an unknown.
n Why can some tolerate ibuprofen while it makes others go into dementia?
n Why did doctors say that I wasn't "allergic" to certain foods, but when I ate them I broke out in eczema, and if I didn't eat them I didn't break out?
n Why was I sensitive to foods in the first place?
n Why are there such broad ranges of "normal" in some tests?
n Why is it that something like 90 percent of adrenal function has to be off before Addison's disease can be diagnosed?
n Why is it that some people can smoke all their lives and not get cancer? I had a grandfather who smoked from the time he was 14 till he was 94, when he died of other causes. Yet my mother, his daughter, who smoked lightly, got lung cancer.
I have a friend whose husband had stage 4 lung cancer. He was given various trial medications. His wife couldn't understand (nor can I) why it was that he would be taken off if the tumor stopped growing – doctors said that the meds were supposed to make the tumor shrink.
Who knows, maybe he'd be alive today – albeit compromised – if they had left him on drugs which simply stopped the growth of his tumor. And by the way, the fellow never smoked, had no family history of lung cancer, but eventually he died of it. And he wasn't diagnosed until it was stage 4.
Some day these questions will be answered, but science isn't there yet. Many assumptions are wrong.
So I do hope that people with ME/CFS aren't put off by hearing that X drug didn't work for someone – or even a few people. It might turn out that this drug will be of tremendous benefit to a given patient.
The definition of CFS leads to a vastly heterogeneous group: It would only make sense if drugs worked for some and not others. So I urge people to try things if they hear that they have helped others with similar medical problems.
Obviously I'm not suggesting that you return to graded exercise if you've had problems with exercise; nor am I suggesting taking a medication which you have reason to think won't help. But if you haven't tried something that helps some, just because it doesn't work for some other patients doesn't necessarily mean it won't work for you.
* Jean Harrison is a CFS patient and president of the advocacy group Mothers Against Myalgic Ecephalomyelitis, Inc. (MAME). “In a different life,” she writes, she specialized in restoration of oil paintings. This article is reproduced with her permission, from a posting of the ME/CFS and Fibromyalgia Information Exchange Forum dated September 27, 2006, via the CO-CURE listserv.