By David Tuller, DrPH
It’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 GET—not that the science behind the recommendations was indefensible, as was clearly the case. Despite the CDC’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 Clinic’s site:
Graded exercise. 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 “hypersensitivity to exercise” 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 Permanente’s site also continues to recommend both GET and CBT. Here’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 help…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 “healthy thinking,” of course. But this description has little to do with the illness we’re talking about. The reason most people with ME/CFS have issues with physical activity is not because they are having “discouraging thoughts” or that these thoughts themselves represent “barriers.” These patients have “discouraging thoughts” 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. Here’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 “Information for Healthcare Providers” page in the ME/CFS section of its site, the agency has included links to resources prepared by others along with a notice: “New content coming soon.” This notice has been up for a while. Given that the agency abandoned these two therapies last summer, why haven’t health officials disseminated this information in a timely manner? Until they post their new content, why aren’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 can’t get more mainstream than Reader’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 “exercise helps chronic fatigue syndrome.” That’s right. Even Reader’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 can’t find a date on the story; the NPR piece it cites ran last November.)
Here’s what the magazine wrote:
While exercise improves most health problems, chronic fatigue syndrome (CFS) is not one of them. In fact, 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 Reader’s Digest, that has meaning. What the meaning is, I’m not quite sure. But it felt like a moment worth acknowledging. I mean, it’s Reader’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. Shepherd’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. Here’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.
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 ‘mental illnesses’ and ‘physical illnesses’ 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 “recovered” and “disabled” 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 “got back to normal” from CBT and GET as in the other two arms—and has never explained why she made this deceptive statement. Professor Sharpe revealingly acknowledged, in an Australian radio interview, that PACE “isn’t able to answer… how much better are these treatments than really not having very much treatment at all.” (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 “a thing of beauty” and compared it to a successful trans-Atlantic ocean cruise. Professor Crawley has called it a “great, great” trial. She herself, of course, has violated key ethical and scientific principles in her school absence study from 2011 and last fall’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 “robust” 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: “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.” 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 “reversible” with CBT and GET—but that’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: “Scientists and clinicians are also increasingly frustrated with the distinction made between ‘mental illnesses’ and ‘physical illnesses’ when the latest clinical evidence shows that the two are closely entwined.”
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 “distinction” between mental and physical illnesses. This line of argument can’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.
5 responses to “More on the CDC; Reader’s Digest; and BBC’s Newsbeat”
The CDC know very well the difference between removing wrong information and issuing a full retraction. I was quite disappointed that some supposed ME orgs and advocates did not demand the CDC issue a full print and electronic retraction. We also know now that Solve/CAA wrote the toolkit recommending GET and CBT.
What can be done to spur the CDC on? Have they some kind of fatigue…talk about a dragging their heels. It makes me so angry. Lives are destroyed and its twiddley dee to them, no sense of urgency. They could make huge changes in 6 months if they wished to do so. ME/CFS patients have low blood pressure, how that is possible with the crap we are up against is beyond me. Our bp should be thru the roof. Can you give the CDC a nudge David? Please do if you can.
The CDC know the difference betwn removing wrong information and issuing a retraction. Disappointing that some claimed ME orgs and advocates did not demand the CDC issue a print and electronic retraction. We also now know that Solve/CAA wrote the toolkit recommending GET & CBT
I would like to see SOLVE listen to what every PWME has to say instead of only to those they fund or their trolls used to bully people who don’t agree with their Agenda. SOLVE and high Profile Advocates choose each other and not necessarily for honourable reasons. Using incorrect terminology and not paying closer attention to criteria makes me wonder if this thing will ever resolve.
If the World Health Organization can tell NICE that they do not accept ME/CFS as one Disease and NICE ignores them what do people think will happen with SOLVE basically agreeing with NICE. It defeats the whole purpose of trying to produce good scientific research. What does SOLVE have to say about Myalgic Encephalomyelitis being added to the American ICD 10 CM in October 2015 and given a nation wide billing code of G93.3. This could only have been done using the ICC 2011. Yet they still call it ME/CFS without Criteria filed under SEID. The point is that there are some very sick people who are being ignored because they don’t fit in CFS or SEID. And everytime one of these people tries to speak up they are bullied.
John Gabor posted a comment here yesterday then again today but I can’t find it anywhere.
Small note and question:
Source material that you quoted states that using GET “is based on good evidence from multiple studies and randomised controlled trials …”
Given that a large number of PACE trial patients were rolled in from a preceding study (largely by the same researchers) with known results, the PACE trial was not “randomised” as claimed. Can host journals be shamed into at least publishing a note with this correction and a list of some other misstatements in the journals that you and others have uncovered? In other words, if the journals won’t fully retract the PACE articles (yet) maybe they would grudgingly agree to publish a list with key corrections of fact, clarify limits of study applicability, and note author conflicts that were not made clear at the time of publication.
Maybe they would remain political (and unscientific) and not make such corrections, but I can dream.