Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tuesday, January 10, 2012

How I Handle “The Wikipedia Problem”

The Problem:  Wikipedia's entry for ME/CFS/CFIDS continues to mischaracterize the condition, suggesting that it may be psychological. It incorrectly states that "There are no characteristic laboratory abnormalities to diagnose CFS." This, of course, is simply untrue. Making matters worse, Wikipedia only discusses three treatments, all psychological in nature: Cognitive Behavioral Therapy (CBT), Graded Exercise Therapy (GET), and Pacing, along with a brief "Other" section, which discusses antidepressants. This reflects the thinking of a handful of CFS researchers from decades ago.

The problem is that when you tell someone you have ME or CFS, they often look it up on the internet. When one searches "Chronic Fatigue Syndrome," the first hit is Wikipedia. (Also on the first page of results is the Mayo Clinic, which, like Wikipedia, erroneously lists GET and CBT as on the only treatments for ME/CFS).  Now the person you've told about your ME/CFS thinks that you may have a psychological defect…or that you're simply too lazy or unmotivated to participate in life's activities…or that you're some kind of hypochondriac attention seeker.

Why Wikipedia Won't Change: Wikipedia is normally an "open-source" project, where anyone can edit an entry, provided they include supporting citations. But the ME/CFS entry is locked. Any attempt to correct it is immediately deleted. The story behind this unusual situation reads like a melodrama, and it would almost be funny if it weren't so unfortunate.

In the late 1980's and early 1990's, when relatively little was known about ME/CFS, a British psychiatrist named Simon Wessely adopted ME/CFS as his pet project and began conducting psychological research on people who had been diagnosed with it.  He concluded that the symptoms of ME/CFS are psychosomatic, and that the only thing standing between ME/CFS patients and good health was their unwillingness to improve. In his interviews and speeches, he implies that ME/CFS patient are mental weaklings who simply can't deal with the challenges of the modern world.

Mr. Wessely then built his career and reputation on this premise. His papers were accepted for publication; he received research funding; and he developed a version of CBT for ME/CFS which became lucrative for him. He became a sort of minor celebrity based on his work. He also became what one publication called "the most hated man in Britain," because of outrage from ME/CFS patients.

In the years following, a group of CFS activists waged an internet war against Wessely, which included repeated attempts to deface his personal Wikipedia entry—the entry for "Simon Wessely," not ME/CFS. After growing weary of this battle, Wessely appealed to Jimmy Wales, the founder of Wikipedia. It is unclear whether Wessely and Wales had a preexisting relationship, or whether one developed after the fact, but it is clear that Wales has since been described as a big supporter of Wessely. In fact, Wessely's appeal to Wales purportedly led to Wikipedia's creation of its "Biography of a Living Person" (BLP) policy, in which edits to BLP's are strictly scrutinized and often erased by Wikipedia editors.

None of this would be a problem if Wikipedia hadn't also applied the same or stricter standard to the ME/CFS page. (ME/CFS, of course, is not a living person.) Many efforts have been made to update Wiki's ME/CFS page, including full citations to respected medical journals. These legitimate efforts are always deleted, usually within minutes.

My Response: First, I should mention that I only tell people about my ME diagnosis on a "need to know" basis. This is a personal choice, but I simply don't find the need to explain it most of the time. My ME is mild enough that I'm able to continue working and I usually appear healthy. But situations inevitably arrive—like last week where I was invited on an annual snowboard trip with some friends—where I have to fess up. In these situations, I will be honest about the ME. And when the person expresses some curiosity about it (which they always do), I use the opportunity to educate them.

The tricky part of educating someone on ME/CFS is keeping it general enough for them to understand. Most of us with ME/CFS have acquired a whole new medical vocabulary, and can rattle off a long list of symptoms and facts. But this makes people's eyes glaze over and they're bound to forget most it. I try to keep it simple by mentioning a few brief points:
  1. 1.    It feels like I have the flu…all the time.  This helps people understand that we’re not talking about minor fatigue or sleepiness.  I might also mention that there are “dozens” of other symptoms, but I don’t go into details unless asked.  The seriousness can be conveyed by tone without sounding like you’re seeking attention or sympathy.
    2.  It is a documented immune system dysfunction.
    3.    I often state that ME was “formerly known as chronic fatigue syndrome, before more recent research finding.”  While plenty of people still call it CFS, I characterize the term as outdated, which I believe mitigates the harmful information found under CFS entries on the internet.   
    4.    Without specific reference to Wikipedia, I inform people that “much of the information on the internet is outdated.”  I explain that the information is outdated because of “a wave of new research.”  In reality, the research isn’t all that new, but this explanation is better than trying to convey the convoluted Simon Wessely/Wikipedia explanation.  

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