A scientific review of exercise for myalgic encephalomyelitis (widely but incorrectly known as “chronic fatigue syndrome”) has been withdrawn, despite fierce resistance from its authors and defenders, because it was based substantially on the notoriously bogus and harmful PACE trial. PACE has done incalculable harm to the cause of people with ME. It was bad science, with serious and ongoing consequences.
Dr. James Coyne: “Citizen scientists and patient advocates Tom Kindlon and Robert Courtney played a decisive role in getting the Cochrane review withdrawn.” But now Robert Courtney is dead, after “the horrible conditions of his last year and his mistreatment and the denial of basic human rights by the medical system.” Basically, he was treated like he was mentally ill, which is horrendous… and now he’s gone. Dr. Coyne again:
We can never know whether Bob’ determined effort to get the review withdrawn led to his medical collapse. The speculation is not just a mindless invoking of ‘stress kills.’ One of the cardinal, defining symptoms of myalgic encephalomyelitis is post exertion malaise.
We usually think of the “exertion” as being physical, but patients with severe form of the illness learn to anticipate that sustained emotional arousal can, within 48 hours or so, put them in their beds for weeks. That applies to positive emotion, like a birthday party, and certainly to negative emotion. Aside from the stress, frustration, and uncertainty of trying to get bad science out of the literature, Bob and other members of the patient community had to contend with enormous vilification and gaslighting, which still continues today.
“Critical analysis” is something non-academics can do — it’s my job, for instance — and doing it can change the world, at least a little bit. Robert’s story is a fantastic example of this (Dr. Coyne also published the letter Robert wrote that may have been most influential). How tragically ironic that he may have died specifically because of gross midiagnosis and mistreatment … because of exactly the kind of bullshit he was fighting.
I care about this story for many reasons, but especially because there’s significant overlap between the serious struggle of ME patients and chronic pain patients. Many people with chronic pain also have a lot of medically unexplained symptoms, because a lot of chronic pain is caused by surprisingly hard-to-diagnose medical problems. Like ME patients, pain patients also learn to fear doctors and medical care, because they also have to deal with ignorance-powered suspicion of malingering and mental illness. CFS and ME are especially tangled up conceptually with fibromyalgia, and that’s where I discuss them in detail, if you’d like to learn more: A Rational Guide to Fibromyalgia.