An Exhausting Syndrome Without Answers

When a doctor told me I had chronic fatigue syndrome, I was indignant: I'd always privately considered it to be what one might call "vague hypochondriacal BS," largely based on the dubious experience of a certain malingering relative whose bouts seemed to coincide suspiciously with unpleasant obligations.

And even after the diagnosis, I was suspicious: CFS, after all, can be a catchall for mysterious illness. Were my frequent bouts of vague, debilitating illness — that seemed to be triggered by everything from allergies to travel to insufficient sleep — really, well, just a vague illness? So it would seem — and as many a sufferer can tell you, it's very real. While frequently dismissed in the past, nowadays the syndrome is widely believed to be automimmune in nature and very likely virus-borne. (Some still consider it psychosomatic.)

The author Laura Hillenbrand wrote compellingly in the New Yorker of her struggle with a case so debilitating it's kept her bedridden for the majority of her life. As in many cases, the failure to find any answers — and the skepticism — led to depression; doctors don't know whether this is causal, or whether those who suffer from CFS are more probe to depression in the first place. As she wrote,

Without my physicians' support, it was almost impossible to find support from others. People told me I was lazy and selfish. Someone lamented how unfortunate Borden was to have a girlfriend who demanded coddling. Some of Borden's friends suggested that he was foolish and weak to stand by me. 'The best thing my parents ever did for my deadbeat brother,' a former professor of his told him, 'was to throw him out.' I was ashamed and angry and indescribably lonely. For seven months I had remained hopeful that I would find a way out of my illness, but the relentless decline of my body, my isolation, and the dismissal and derision I was experiencing took their toll. In the fall of 1987, I sank into a profound depression. I stopped seeing my physician and didn't try to find a new one.

Nowadays, doctors at least have basic criteria from which to work — however vague. Says the New York Times, "In addition to six months of unexplained, disabling fatigue, the C.D.C. definition requires at least four of eight common symptoms: cognitive problems, sleep disorders, muscle pain, joint pain, headaches, tender lymph nodes, sore throat and what is called "postexertional malaise"- a relapse that occurs after even minimal activity." Other definitions are narrower, including that applied in Canada.

Recently, the mysterious syndrome has been in the news, since a controversial study in the journal The Lancet suggested that it could be treated with exercise and cognitive therapy. The fallout has led to discussion of how, exactly, CFS is defined and diagnosed; while the findings applied to one definition of the syndrome, change that a little and you get totally different results. As is usual with this mysterious ailment, nothing's certain. For sufferers though, the effects can be anything but vague. Even after Hillenbrand found a doctor who diagnosed her, it was cold comfort: he explained that some poeple never recover, and she's found herself in the latter camp. And while I can only speak for myself — if there's something that will help, I'm willing to try it. Because, believe me, it's not even good for getting out of things — people hear it and assume it's B.S. And really, when you're sick that's the last thing you need.

A Sudden Illness — How My Life Changed [New Yorker]
Defining An Illness Is Fodder For Debate [NY Times]