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.
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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.
Treatment of ME/CFS | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC
If patients have unhelpful beliefs, then surely doctors also have them and are easily gullible on the information they themselves consume. I wonder whether Gluckman himself saw one ME patient in his practice.
Thank you for this piece Dave, CDC keeps on insulting patients over and over. We deserve better.
It’s interesting that Gluckman suggests cycling, swimming and jogging for ME/CFS sufferers when, from this -https://www.pennmedicine.org/departments-and-centers/department-of-medicine/divisions/infectious-diseases/about-us/news-and-updates , it appears that someone with a similar/identical name and at the same university successfully completed a triathlon last year. Could they be one and the same person? Whoever they are, good on them. (I can still just about remember that great feeling I used to get when I ran.)
I wonder, is it possible that a triathlete, any triathlete, might believe that their own positive outlook helps them to achieve all that they do? And that by adopting a similar attitude ME/CFS patients could break free from their suffering and achieve great things too? That bodily health doesn’t really come into it because mind can largely overcome matter and beat back pain and fatigue? And that if a 71 year old can successfully complete a triathlon, then younger ME/CFS sufferers should be able to run, swim or cycle too …..or at least walk? (Everyone has a backbone somewhere, right?)
But a belief that doesn’t impede or that may help strengthen a healthy body may not be at all helpful for a body that is beset by pathophysiological problems. To be truly empathetic, you probably need to be able to adjust your beliefs. To be sympathetic, you probably don’t. In my experience, doctors are rarely empathetic, and often aren’t sympathetic either. (It seems that may have to do with the way they’re trained -https://bjgplife.com/unlearning-resentment/ .)
Oh that good old ‘Type A Personality’ trope. That was one of the idiocies of the UK UHW ‘CFS’ (whatever that is) Clinic back in the day. In one consultation with Meirion Llewellyn (BPS through and through) I was told I was a typical ME patient because I was a ‘Type A Personality’. I sensed that I was supposed to be somehow impressed or flattered by this. I wasn’t. I thought such nonsense must have died a death already, but clearly not.
In the same consultation I was told that “we’re noticing that our ME girls have bright blue eyes and are very tall”. This was also intended to apply to me. I do have noticeably bright blue eyes but I pointed out that if I were to be 1/2 inch shorter I would have to be buying my ensembles from the ‘petite’ range. Baloney. But then the BPS model is pretty much that: all baloney.
Apply that model to anything, not just ME, and you see the ‘baloney’ in action.
For example, a more recent referral to a pain clinic left me with just one option: ‘mindfulness’. My pain and ‘mindfulness’ are not ever going to see eye to eye, nevertheless I’m supposed to believe that it can help me. Trust me I’ll try even the silliest stuff, and I have done, in desperation, over the years. I don’t know who mindfulness works for but it definitely isn’t me.
The really bizarre aspect to this suggestion was the endorsement of this BPS-favourite on the basis that the pain consultant herself was of Asian descent and the Indian sub-continent use it beneficially all the time.. and thus the implication seemed to be that if I could overcome whatever cultural biases I had then it would help me too. Seriously? That is the level of intellectual impartiality and intellectual rigour that the BPS can muster?
As I said: Baloney. And the CDC is a fellow master of baloney and has been, as far as ME is concerned, forever. Plus ca change….
‘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.”’
I’m always fascinated by the phrase that exercise can be done ‘under close medical supervision’. In ME/CFS if you increase exercise, under close medical supervision or not, you get PEM, ie, get worse. They never explain how exactly close supervision is implemented, how does a doctor know how much you can do or extend yourself to or when to stop. They have no measures for this, and mostly haven’t got a clue.
Dr Gluckman’s prescription looks like a confused stew of BPS rubbish mixed with a bit of concern. The CDC should be more careful about what recommendations it promotes.
“The CDC took a big step five years ago”
Actually, they were dragged, kicking and screaming, the entire tiny distance. Even now they still hate us and continue to use bureaucratic passive-aggressive behavior like hiring Gluckman then claiming they have no knowledge of, or control over, what Gluckman is going to say.
They do this every few years just to twist the knife a bit more. Remember when NIH hired the odious Edward Shorter to explain ME to NIH staffers? [1] It was the same sorry excuses and dissembling we are hearing today from CDC.
The biggest policy difference between the US approach and the Wessely School is that the UK psychobabblers openly despise us while the NIH/CDC crew pretend they want to help while stabbing us in the back.
Like the Pentagon, the CDC is a money conveyor belt from the public purse to private contractors. Everything they do is contracted out. How is it that CDC has no expert staff that can do these events or even update their own website?
The underlying story here is that the CDC has been hollowed out and privatized into uselessness. “Everyone agrees” that Useless Eaters should be kicked to the curb. How about Useless Agencies?
[1] “Update on Shorter’s Presentation at NIH”
“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.”
David, I think you may be misreading the first part of this.
You appear to be reading “successful” and “high functioning” along the lines of “more than the average person”.
I think the intended meaning here is similar to the use of “high functioning” in the term “high functioning autism”. While indeed, some notable people with hfa are more successful than the average person, what is usually meant by the term is “not severely disabled”.
So the sense of the quote is that before the triggering infection, the patient was not severely disabled. (So these are not cases of people who were severely disabled pre infection and continued to be severely disabled afterwards).
Infectious Diseases is his title but his angle is trauma… It’s hilarious but also extremely disappointing.
GET is harmful because we cannot produce aerobic energy, it causes the body to go into physical decline and crash. Not because we don’t have a positive outlook.
I say it’s like putting the wrong type of fuel in the tank, seizes the engine up and it won’t work.
It’s extremely worrying that this narrative continues when there’s enough biomed research to explain why these people are wrong. Fixed theories from seemingly intelligent people who don’t do their homework.
Thank you for trying to do something about it, I really think they should screen the content of speakers because this content harms patients.