By David Tuller, DrPH
The US Centers for Disease Control and Prevention has a long history of missteps when it comes to the illness or cluster of illnesses currently called ME/CFS—as anyone who has read Osler’s Web knows. In the more recent past—2017–the agency dropped its unfortunate endorsement of the discredited GET/CBT treatment approach but made no public comment about the move until I asked about it. The agency argued that people misunderstood or were confused about what it meant by the terms GET and CBT. This explanation was laughable. No one misunderstood anything. After all, the agency had been citing the PACE trial.
Since then, the CDC has steadfastly refused to acknowledge that its previous reliance on PACE and related research was a serious mistake. This is the country’s leading public health agency. It is disgraceful that no one in leadership has taken responsibility and apologized for spending years citing a trial that qualifies–in my opinion as a public health professional–as a case of serious research misconduct.
This hedging attitude might help explain why the CDC recently hosted a speaker who recommended CBT and GET—albeit “very gradual” GET–as possible treatments. The speaker, Stephen Gluckman, is an infectious disease physician at the University of Pennsylvania. His online talk during the agency’s May Stakeholder Engagement and Communication call was called “The Management Options (yes, there are options) for People with ME/CFS.”
I didn’t tune in for Gluckman’s CDC presentation, but I’ve seen the slides. Overall, it looks like he provided a lot of useful information. One slide, for example, indicated that the disease “is a biological illness, not a psychological disorder,” that “patients are not hypochondriacs,” and that there are “multiple pathophysiological changes/abnormalities” in the immune, neuroendocrine and autonomic systems and in cellular metabolism. All good! Given this apparent rejection of the psychogenic hypothesis and awareness of some of the medical complexities, it is unclear why Gluckman continues to reference discredited therapies.
Not surprisingly, his appearance sparked some dismayed reactions on social media, like this statement from a tweet from #MEAction Network: “#pwME deserve accurate & clear #MECFS education from #CDC, not recycling of discredited recommendations for CBT & GET.”
Gluckman is the author of a variety of educational materials about ME/CFS, including a Continuing Medical Education module for the CDC and articles for both Up-to-Date and MSD Manual (formerly the Merck Manual), two leading resources for medical information. They include some valuable points. But all three also all highlight GET and CBT as interventions, with varying degrees of cautions and caveats.
At this point in the ME/CFS debate, it is arguably irrelevant what anyone means when they reference GET and CBT. The misbehavior of a powerful group of investigators–enabled for decades by powerful players like the CDC–has rendered these terms toxic, not to mention uninterpretable. They cannot be massaged and refurbished in this context, nor should they be. Experts engaged in this field should understand that by now. So should the CDC.
Overall, Gluckman’s educational materials are of varying quality. The CME module and the Up-to-Date article are not terrible—the latter is certainly much improved from earlier iterations. But the article on chronic fatigue syndrome in the MSD Manual, in particular, is problematic in multiple respects. (The article offers systemic exertion intolerance disease, or SEID, myalgic encephalomyelitis, and ME/CFS as alternate names.)
This article was last reviewed and updated relatively recently–September, 2021. It nonetheless includes sketchy statements that conflict with the CDC’s own approach, such as this prominent phrase near the top: “Treatments include relieving symptoms, cognitive-behavioral therapy, and graded exercise.” (The MSD Manual features both consumer and professional versions; I’m citing the consumer version here.)
Under a section on “causes,” the text includes this: “Controversy exists as to whether there is a single cause or many causes and whether the cause is physical or mental, but either way the symptoms are very real to the person…Some researchers believe the syndrome ultimately will prove to have several causes, including genetic predisposition and exposure to microbes, toxins, and other physical and emotional factors.”
These points seem to contradiction or at least undermine Gluckman’s declaration in his CDC slides that ME/CFS is “biological” and “not a psychological disorder.” In noting the “controversy” in the MSD Manual, Gluckman seems to give equal weight to the possibility that “the cause” is “mental” as opposed to “physical”—whatever he means by “physical.” Assuring the reader that the symptoms are “very real to the person” suggests that perhaps they are not a result of “real” pathophysiological dysfunction; in other words, the symptoms might be “mental.” And apparently some researchers believe the syndrome will turn out to have “emotional” causes. Which researchers are those, besides the usual cabal? And what emotions do they propose might be causing the illness?
Gluckman then writes this: “Most people who have chronic fatigue syndrome are successful and function at a high level until the disorder begins, usually abruptly, often following a stressful event.”
I’m not aware of evidence that “most” ME/CFS patients—as opposed to patients with other diseases—are particularly “successful” and “function at a high level.” Many undoubtedly are, and do. But I’m sure many people with less high-powered careers who function at an average or middling level also get ME/CFS, and I see no reason to think their more “successful” bosses are at greater risk. What is the source of this claim?
The statement that a generic “stressful event” is often implicated is also odd. From the phrasing, it sounds like Gluckman’s version of CFS is frequently an affliction of so-called “Type A personalities” humbled or shocked by some sort of failure or loss. This could just be a clumsy effort on Gluckman’s part to rebut the hoary stereotype that patients are lazy malingerers. But the description seems suspiciously close to the notion promoted by the CBT/GET ideological brigades–that “perfectionism” as a personality trait infers greater risk of developing the illness and is often a precipitating factor.
Here’s how Gluckman describes CBT: “Cognitive-behavioral therapy is usually a brief course of psychotherapy aimed at redirecting discouraging thoughts that could prevent the positive outlook that can help recovery.”
And graded exercise therapy: “Excessive periods of prolonged rest cause deconditioning and may actually worsen symptoms of chronic fatigue syndrome. Gradual introduction of regular aerobic exercise, such as walking, swimming, cycling, or jogging, under close medical supervision (called a graded exercise program) may reduce fatigue and improve physical function.”
As we know, the evidence for all these claims is not worthy of consideration. There is zero reliable data indicating that, for this illness in particular, “discouraging thoughts” impede “recovery” and a “positive outlook” helps achieve it. The phenomenon of deconditioning is also irrelevant. Deconditioning can be a concern for any sedentary individual, but it has not been shown to be implicated in the presence or severity of ME/CFS symptoms, no matter how often “experts” speculate that it plays a role.
The article does not include the phrase “post-exertional malaise”—at least not that I could find. It mentions the concept in two places, neither of them especially prominent. During a description of fatigue as the primary symptom, the article notes that it “often worsens with physical exertion or during periods of psychological stress.” The article also cites the 2015 definition of the illness from the US Institute of Medicine (now the National Academy of Medicine), which includes “symptoms worsened with physical activity” as a core trait of what it called SEID. Beyond those passing references, the article draws no particular attention to this critical point. It would have been prudent for Gluckman to have mentioned post-exertional malaise specifically in the section of the article promoting the possible benefits of GET.
(Incidentally, the professional version of the MSD Manual article on chronic fatigue syndrome includes a mention of long Covid, with this sentence about the “persistent symptoms”: “Some of these symptoms result from organ damage from the infection and/or treatment, and others may be from post-traumatic stress disorder.” So: Are some people experiencing prolonged symptoms arising from pandemic-related PTSD? Undoubtedly some are somewhere. Is there any reliable evidence that this factor applies to sufficient numbers of people that it would warrant being cited in a major medical article as the only possible cause of long Covid symptoms besides organ damage? No.)
The CDC took a big step five years ago, but its actions continue to disappoint. The agency does not seem to recognize or care that this continued flirtation with the GET/CBT approach it has rejected—or at least has “disappeared”–does not enhance its reputation among anyone familiar with the issue, least of all patients. After decades of incompetence, the CDC still doesn’t seem to be able to get it right.
CDC responds to concerns over presentation
The CDC has sent the following response to some people who have registered their objections to the recent SEC talk:
We understand your concerns and appreciate you reaching out to CDC. The ME/CFS program recognizes the importance of connecting with the ME/CFS community.
When we have SEC calls, outside presenters are formally invited to present but CDC does not clear or edit their presentations. In Dr. Gluckman’s talk, he did not recommend a standard therapy for any one patient and emphasized that clinicians should treat any patient with ME/CFS on an individual basis. His intent was to talk about how some patients may benefit from certain therapies as part of a larger program, for example, how CBT may help some people with ME/CFS cope. At the same time, he acknowledged that not all therapies are appropriate for every patient with ME/CFS.
CDC has outlined treatment and management of ME/CFS on our website for the public and healthcare providers. CDC supports management of activities and therapies to help patients with ME/CFS cope with this debilitating illness.