Teitelbaum’s Critique of PACE Fails to Deliver

In his March 9, 2011 article in Psychology Today, Dr. Jacob Teitelbaum took a look at the PACE trial done in the UK, which studied the effect of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) on patients with ME/CFS. The hypothesis of the study was that ME/CFS is the result of fear-based avoidance of exercise. The idea was that CBT would eliminate the patients’ fear of exercise and GET would build up the patients’ stamina. Therefore, the premise of PACE was that ME/CFS is a psychological illness and it concluded that CBT and GET improve ME/CFS patients’ conditions and are, thus, valid treatments for ME/CFS. In truth, some patients improved somewhat. Some patients had no improvement, but even the patients who did were far from normal levels after the “treatment.”

The position that ME/CFS is a psychological illness has been proven wrong time and time again, so, when I read the title of Dr. Teitelbaum’s article, “PACE Study May As Well say Cancer Is All In Your Mind,” I was excited because it hit the nail right on the head: People with serious illnesses, such as cancer or ME/CFS, benefit from well-done therapy that helps them cope with their emotions about being ill.  Doh!  But my excitement only lasted until I read the sub-title, “Contrary to this report, CFS is a real illness.”  This, unfortunately, is a great example of what’s wrong with most media coverage on ME/CFS. To stay with the cancer analogy, Dr. Teitelbaum may as well have said “Contrary to this report, cancer is a real illness.” Of course it is!  No responsible and sane person would suggest otherwise. But what would be the reason for pointing that out then? Anybody? I can’t think of one either.

Back to ME/CFS: It has been proven many times, using biological markers, that ME/CFS is a “real” (i.e., physical) illness. So, why do we keep reading headlines suggesting that its legitimacy still is in question, such as “Is Chronic Fatigue Syndrome Real?” or, like here, “Contrary to this report, CFS is a real illness”? I can understand that the legitimacy of ME/CFS is questioned by parties interested in classifying it as psychological, such as disability insurance companies who only have to pay for two years for disabilities due to psychological illnesses as opposed to until the 65th birthday of the claimant for physical illnesses. But clearly, journalists should be reporting on this disease more objectively, but they often don’t—either because they are biased or because they are too lazy to really understand. If I understand Dr. Teitelbaum correctly, it was his frustration with this kind of media coverage of the PACE trial, which often suggests that ME/CFS is all in patients’ heads, that lead him to write his article. So, I believe that he was well-intentioned.

But here are the problems with Dr. Teitelbaum’s article:  In addition to having a completely misguided premise (see above), the PACE trial’s design was fatally flawed because its recruitment merely focused on fatigue and not on post-exertional malaise, which is the hallmark symptom for ME/CFS and the distinguishing factor from other illnesses causing fatigue (Not only does exercise not help ME/CFS patients, it usually makes them feel worse.).  Therefore, many or possibly even most people who were recruited for the study were people with fatigue due to depression and other non-ME/CFS conditions.  Yet, even though the title of his article suggests that he has an issue with PACE, Dr. Teitelbaum fails to address the problems of the PACE trial altogether. Instead, he treats PACE as if it was a scientific—or should I say “real”?—study. By doing so and by making  the “realness” an issue in his sub-title, Dr. Teitelbaum, ironically, is helping to perpetuate the very myth that he purports to fight: that ME/CFS is a psychological illness. (And by the way, people with psychological illnesses can surely not be thrilled to see him imply that their disease is not “real.”)

I also find it quite questionable that Dr. Teitelbaum still claims that he can cure ME/CFS patients with his S.H.I.N.E. protocol. Suggesting that a few hormones and nutritional supplements, etc., will allow ME/CFS patients to go “From Fatigued to Fantastic” (the title of his book—a slap in every ME/CFS patient’s face) is ludicrous. To be sure, I am a big fan of alternative treatments and supplements to support ME/CFS patients’ systems, but I doubt they will cure ME/CFS and claiming so helps to downplay the seriousness of the disease. And does “exercise as able” sound a bit like “graded exercise” to anybody else? However, Dr. Teitelbaum does use Dr. Montoya’s Valcyte protocol with some of his patients.

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