By David Tuller, DrPH
Itâ€™s been almost a year since the CDC removed its recommendations for GET and CBT as treatments for ME/CFS (or CFS, or ME, or CFS/ME, or even SEID or whatever else one calls this illness or cluster of illnesses). When questioned about the decision, the agency explained that people had misunderstood what was meant by CBT and GETâ€”not that the science behind the recommendations was indefensible, as was clearly the case. Despite the CDCâ€™s unwillingness to provide a credible explanation for its actions, the change marked a significant victory over the CBT/GET ideological brigades.
And yet the treatments continue to be recommended by major medical organizations and websites in the U.S. Here, for example, is a section about ME/CFS treatment from the Mayo Clinicâ€™s site:
Graded exercise.Â A physical therapist can help determine what exercises are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day. Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person’s hypersensitivity to a particular allergen.
The passage presumes that the illness involves a â€œhypersensitivity to exerciseâ€ comparable to an allergy, and that gradual exposure is the solution. What is this hypersensitivity? Is it attitudinal or psychological in nature? Is it biological? Is there any evidence that such a hypersensitivity is an actual phenomenon, and that exercise can reduce it? The Mayo site does not provide answers to these questions.
Kaiser Permanenteâ€™s site also continues to recommend both GET and CBT. Hereâ€™s what it says about CBT, for example:
Cognitive-behavioral therapy is a way to help you stay well and cope with chronic fatigue by changing how you think. And how you think affects how you feel. Negative thoughts can make you feel worse. Healthy thinking can helpâ€¦Healthy thinking can take away barriers to being physically active, such as discouraging thoughts. This helps because light aerobic exercise, such as walking, helps some people who have ME/CFS feel more energetic and less tired.
No one can be against â€œhealthy thinking,â€ of course. But this description has little to do with the illness weâ€™re talking about. The reason most people with ME/CFS have issues with physical activity is not because they are having â€œdiscouraging thoughtsâ€ or that these thoughts themselves represent â€œbarriers.â€ These patients have â€œdiscouraging thoughtsâ€ because they are very, very ill and find it physically impossible to do the things they want to do. Is that really so hard for people to understand?
The Kaiser pages are credited to Healthwise, an organization whose content is widely used by medical organizations in the U.S. According to one of the patient forums, Healthwise has promised to change its content about the illness later this year, following a complaint. Given that the current content, which was apparently revised last year, means that these potentially harmful treatments are still being recommended, it is unclear why Healthwise has not chosen to remove the problematic information in the meantime.
This problem of websites offering ME/CFS recommendations not backed by credible evidence is quite widespread. Hereâ€™s a passage about exercise for children with ME/CFS on a site sponsored by the Nemours Foundation called kidshealth.org:
Several studies confirm that “graded exercise” (which means starting with small activities and slowly working up to a higher level of exercise) is very helpful in CFS recovery. People with CFS are often “out of condition” so getting back into exercise in stages helps.
So where is the CDC on all this? Who knows? On its â€œInformation for Healthcare Providersâ€ page in the ME/CFS section of its site, the agency has included links to resources prepared by others along with a notice: â€œNew content coming soon.â€ This notice has been up for a while. Given that the agency abandoned these two therapies last summer, why havenâ€™t health officials disseminated this information in a timely manner? Until they post their new content, why arenâ€™t they reaching out to Mayo, Kaiser and other groups about this critical issue? And if they have reached out to Mayo, Kaiser and others, why do these organization’s web pages not reflect that CDC input?
With a 30-year history of wrongheadedness and misguided actions related to this issue, it seems that the CDC still continues to neglect its responsibility to act in ways that promote the public’s health.
You canâ€™t get more mainstream than Readerâ€™s Digest. This magazine has been around since the 1920s, so generations of Americans have relied on its advice. Now, in an article titled “50 Fitness Myths That Can Seriously Damage Your Health,” the publication is telling its readers this key point: One major misconception is that â€œexercise helps chronic fatigue syndrome.â€ Thatâ€™s right. Even Readerâ€™s Digest has now picked up on the change in recommendations for ME/CFS, and many other outlets have re-run the story. (For some reason, I canâ€™t find a date on the story; the NPR piece it cites ran last November.)
Hereâ€™s what the magazine wrote:
While exercise improves most health problems, chronic fatigue syndrome (CFS) is not one of them. In fact,Â according to NPR, even light exercise can make this condition much worse. This is a common misconception even among doctors; the CDC only revised its guidelines about exercise and treatment in 2017, after recommending the exact opposite for the last 30 years, when CFS was thought to be more of a psychological issue. Before embarking on a fitness plan, make sure to discuss it with your doctor first.
In the U.S., when something hits the awareness of the gatekeepers at Readerâ€™s Digest, that has meaning. What the meaning is, Iâ€™m not quite sure. But it felt like a moment worth acknowledging. I mean, itâ€™s Readerâ€™s Digest!
Earlier this month, the BBC show Newsbeat ran an interview with Charles Shepherd of the ME Association, in which he called for GET to be abandoned as a treatment. When the news organization needed someone to say something good about the rehabilitative approach to the illness, who did it turn to? None other than some of our besties.
The article noted that not everyone shares Dr. Shepherdâ€™s views on GET:
A statement to Newsbeat from some of the country’s leading ME researchers and clinicians says: “These therapies help many people with CFS/ME by reducing symptoms, increasing what they can do, and improving their quality of life.”
It goes on to say that using GET “is based on good evidence from multiple studies and randomised controlled trials showing that these treatments are safe and useful for some patients.
“Right now there are no alternatives for patients, so it is vital that they are not deterred from accessing therapies that can help them.”
An footnote indicated the following about the pro-GET quotes:
This is a combined statement from: Prof Trudie Chalder, Professor of Cognitive Behavioural Psychotherapy, Institute of Psychiatry Psychology and Neuroscience (IoPPN), King’s College London; Prof Esther Crawley, Professor of Child Health, University of Bristol; Prof Paul McCrone, Professor of Health Economics, Institute of Psychiatry Psychology & Neuroscience (IoPPN), King’s College London; Prof Michael Sharpe, Professor of Psychological Medicine, University of Oxford and Prof Sir Simon Wessely, Chair of Psychological Medicine, King’s College London.
Apparently the footnote was added after an advocate asked about the source of the quotes. The BBC provided the advocate not just with the names but with the full statement from which the quotes were taken. Hereâ€™s the full statement:
CFS/ME is a serious and disabling illness and the fundamental goal of all researchers and clinicians in the field is to help patients. Everyone wants to see more research, more funding, better diagnostics, and more treatment options to improve the lives of patients suffering from this condition. There are however, some misconceptions about the evidence for cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as treatments for CFS/ME. These therapies help many people with CFS/ME by reducing symptoms, increasing what they can do, and improving their quality of life.Â
NICE recommends that both CBT and GET are offered to CFS/ME patients, and this advice is based on good evidence from multiple studies and randomised controlled trials (RCTs) showing that these treatments are safe and useful for some patients. These recommendations have been in place for many years, and the evidence-base for these treatments has grown with time. CBT and GET can help patients with conditions such as cancer, chronic pain, and multiple sclerosis, so their use in CFS/ME does not infer that a condition is a mental illness.
Scientists and clinicians are also increasingly frustrated with the distinction made between â€˜mental illnessesâ€™ and â€˜physical illnessesâ€™ when the latest clinical evidence shows that the two are closely entwined. We all hope for new advances in the understanding and treatment of this condition but right now there are no alternatives for patients, so it is vital that they are not deterred from accessing therapies that can help them.
That any of these investigators still have credibility is astonishing, but no more astonishing than that anyone would continue to defend research in which participants could be deemed â€œrecoveredâ€ and â€œdisabledâ€ simultaneously on key measures at baseline. Professors Chalder and Sharpe were principal investigators of the PACE trial. Professor Chalder famously declared that twice as many people â€œgot back to normalâ€ from CBT and GET as in the other two armsâ€”and has never explained why she made this deceptive statement. Professor Sharpe revealingly acknowledged, in an Australian radio interview, that PACE â€œisnâ€™t able to answerâ€¦ how much better are these treatments than really not having very much treatment at all.â€ (He has also criticized my decision to crowdfund my work as a conflict of interest.)
PACE is bogus science. Yet Sir Simon has praised it as â€œa thing of beautyâ€ and compared it to a successful trans-Atlantic ocean cruise. Professor Crawley has called it a â€œgreat, greatâ€ trial. She herself, of course, has violated key ethical and scientific principles in her school absence study from 2011 and last fallâ€™s Lightning Process study. Both of these papers were published by BMJ journals, which have refused to acknowledge or deal with these indisputable violations. She is now engaged in questionable research about delivering online CBT to kids, following up on a flawed Dutch study that purported to prove this to be an effective approach.
Professor McCrone was lead author of the PACE study published in PLoS One, which included a flagrant untruth about the cost-effectiveness of CBT and GET. The paper reported that the finding of cost-effectiveness would be â€œrobustâ€ no matter how one valued the unpaid care provided by family and loved ones. As patients pointed out in the comments and as Professor McCrone himself acknowledged, that claim did not reflect reality. But the paper itself remains uncorrected. The lie about the cost-effectiveness finding being “robust” no matter how informal care is measured remains in the literature.
The BBC would do well not to rely any longer on this batch of so-called experts. They have been peddling rubbish and nonsense for years. This statement is more of the same.
Take this sentence: â€œCBT and GET can help patients with conditions such as cancer, chronic pain, and multiple sclerosis, so their use in CFS/ME does not infer that a condition is a mental illness.â€ These folks have trotted out this sort of answer repeatedly, although more often applied specifically to CBT. The obvious response is that no one would think of calling cancer or MS â€œreversibleâ€ with CBT and GETâ€”but thatâ€™s the basis on which these therapies have been designed, investigated and prescribed for people with the illness. To fail to acknowledge this point is disingenuous and renders the claim impossible to take at face value.
And the following argument is just a distraction: â€œScientists and clinicians are also increasingly frustrated with the distinction made between â€˜mental illnessesâ€™ and â€˜physical illnessesâ€™ when the latest clinical evidence shows that the two are closely entwined.â€
No one, of course, would dispute that these two domains are interrelated, and that psychological factors impact states of health and sickness. But this group of investigators uses this argument to obscure what they have done. They have promoted unproven psychological theories, and treatments based on those theories. When challenged on the grounds that the illness in question is organic and not psychological in nature, they blame others for purportedly creating an artificial â€œdistinctionâ€ between mental and physical illnesses. This line of argument canâ€™t be taken seriously.
Beyond that, the statement from these experts does not acknowledge that the PACE results themselves, under their own original protocol methodology, were disastrous. They are still making claims based on shoddy “evidence” without any apparent embarrassment or shame. And in the U.K, at least, they and their questionable pronouncements still get treated with respect by those in positions of authority, including journalists who should know better. Unbelievable.