Trial By Error: Disinformation About Treatments for Post-Covid Syndrome

By David Tuller, DrPH

Professor Trudie Chalder is a lead investigator of a series of studies of rehabilitative interventions for so-called “medically unexplained symptoms” that have failed to meet expectations but have nevertheless been promoted as demonstrating treatment success. The piece of crap known as the PACE trial is a prime example. Most famously, Professor Chalder declared at the press conference for the first PACE results, published in 2011 in The Lancet, that twice as many people in the cognitive behavior therapy and graded exercise therapy groups “got back to normal” compared to those in the other groups. This statement was false and scientifically indefensible. [In this paragraph, I initially wrote “more than twice as many people” rather than “twice as many.” I apologize for the error, which I fixed within a couple of hours.]

Professor Chalder has never publicly acknowledged or apologized for this gross misrepresentation of her study’s findings, at least as far as I have seen. Her assertion was widely disseminated by UK journalists. That is not surprising, since the British press corps has largely served as a stenographic service for the nonsense promoted by Professor Chalder and other leading lights of the biopsychosocial ideological brigades.

With the emergence of the coronavirus pandemic, Professor Chalder has predictably urged patients suffering from what has become known as post-covid syndrome to get back to their regular lives as quickly as possible. Northwestern University law professor Steven Lubet and I wrote last week in STAT about concerns that PACE-type treatments could be imposed on post-covid syndrome patients, with possibly harmful effect.

Others have raised similar alarms, especially because the 2007 guidance on what was then being called CFS/ME from the National Institute for Health and Care Excellence is still in effect. That guidance advocated CBT and GET as optimal treatments. NICE is currently developing new guidance, but the deadline for a final version has been pushed back from this year until next because of the pandemic. After members of the panel developing the new guidance warned NICE that the existing recommendations could be detrimental to post-covid syndrome patients, the agency issued a statement clarifying its position.

According to the statement, “NICE’s guideline on ME/CFS [chronic fatigue syndrome] (CG53) was published in 2007, many years before the current pandemic, and it should not be assumed that the recommendations apply to people with fatigue following covid-19.” The statement further noted that the evidence on GET “is one of the most important issues” the panel is grappling with.

While this statement was welcome, it also has led to justified grumbling. It has been evident for years that GET should not be recommended for patients with ME/CFS—but this statement leaves the guidance in place for that population group. Of course NICE should act to protect post-covid syndrome patients from unjustified advice. But don’t current ME/CFS patients deserve that protection as much as post-covid syndrome sufferers?

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In the video interview posted online (the clip is dated June 25th, but I can’t find the date the interview was actually conducted), Professor Chalder promotes her rote PACE-style advice without acknowledging that the study and its findings have been rejected as fatally flawed by much of the international scientific community. In the video, Professor Chalder notes that she’s “been interested in fatigue for about 30 years now, and looking at factors which contribute to the development and maintenance of it.”

And then this:

“We also know that the longer people convalesce for at the onset is associated with some delayed recovery, but the caveat obviously to that is when you’re in an acute stage of illness you do need to rest—as soon as you start feeling better that you start engaging in activity again…

The important thing is to get back to activity as soon as possible, and obviously that has to be done carefully, and for many people if they’re just given some guidance about how to be more consistent in their activities and how to build up gradually over a period of time as well as developing a very regular sleep routine, that then they will improve and get better. Some people may actually need some additional help from a health professional.”

Without knowing the context, much of that sounds, you know, like sensible advice for many people recovering from a viral illness. But humans have been recovering from viral illnesses for quite a long time, and we don’t generally need guidance on how to do it. Amazingly, it just sort of happens in most cases. And for reasons that remain unclear, the PACE folks have long insisted that people with some undesirable personality traits—perfectionism, for example—develop dysfunctional illness beliefs and get stuck in the recovery process. They then need either GET or CBT to be coaxed toward recovery.

This theory has had and continues to have a remarkably tenacious hold in the face of robust evidence that the proposed treatments do not work as advertised. Like President Trump, adherents of this approach appear to have trouble integrating new information when it contradicts their preconceived and preferred notions. This inability to integrate new information appears also to have colonized the UK’s entire medical-academic-industrial complex, at least when it comes to ME/CFS.  

Of course it is possible or even likely that Professor Chalder’s advice might be beneficial to some people with post-covid syndrome. By all accounts, the range of symptoms patients are still experiencing after many months is so broad that there are likely multiple variants of post-covid syndrome with different etiologies. We don’t know enough to say. But no one should be offering solutions based on bogus and debunked claims of treatment success.

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Professor Chalder is not the only one who has pushed this line in the coronavirus era. It began as soon as it was becoming clear that some patients were experiencing ongoing problems. In mid-April, I wrote about a pamphlet on coronavirus and fatigue posted by the Oxford Health NHS Foundation Trust, the agency that oversees NHS services in the Oxford. The pamphlet recommended graded exercise and cognitive behavior therapy.

The pamphlet read as if had been written 20 years ago. Or as if it were written last week by Professor Michael Sharpe, himself an Oxford luminary as well as one of Professor Chalder’s PACE co-investigators. It was credited to a mysterious entity called the “psychosocial response group,” of which no mention could be found on the agency’s website. The group sounded like a SEAL commando of highly skilled therapists primed to deploy the powers of CBT at a moment’s notice.

This is a typical example of the advice from the Oxford Health pamphlet: “Cognitive Behaviour Therapy (CBT) is a form of therapy which has been shown to be helpful for CFS/ME. It helps you to identify thoughts and beliefs which maintain the problems…CFS/ME may relate to longstanding problems such as depression, chronic worry, perfectionism or low self-esteem.”

The pamphlet did not mention that many questions have been raised about these and related claims. There was no mention that this advice was abandoned years ago by the US Centers for Disease Control and Prevention. No mention that the findings have been effectively rebutted in the peer-reviewed literature. In other words, the pamphlet was disinformation.

After multiple complaints, Oxford Health removed the pamphlet. In response to a freedom of information request, the agency informed me that “in light of concerns expressed by a small group of individuals it [the pamphlet] has been taken down from trust sites for further review.” To my knowledge, it has not reappeared. But that hasn’t stopped the same problematic and unwarranted advice from popping up elsewhere.

Oh, and for those interested, here’s what I was told in the FOI response about the “psychosocial response group”: “The Psychosocial Response Group is a longstanding multidisciplinary group in Oxford Health Foundation Trust which is part of OHFT’s emergency planning function. The role of the group is to formulate plans and develop resources to support the psychological and social wellbeing of OHFT staff and service users in the event of serious incidents.”

Ok, then—that sure cleared everything up. 

{ 12 comments… add one }
  • James 28 July 2020, 12:44 pm

    The comments section on Trudie Chalders You Tube video has been removed but the thumbs down part still functions if that is how people wish to comment.

  • Sandra 28 July 2020, 1:16 pm

    Thank you. Succinctly lays out the truth/reality of the situation. Too bad Chalder, Sharpe, and company cannot accept or face the truth. The end result — patients are harmed and have no recourse; the medical establishment continues to rely on harmful misinformation. What a pathetic and tragic situation.

  • CT 28 July 2020, 2:22 pm

    This smacks of a ‘collateral damage’ approach to healthcare. It doesn’t seem to matter that a significant proportion of ‘MUS’ patients are misdiagnosed (https://opposingmega.wordpress.com/2020/06/06/who-else-knew/) or that a significant proportion of post-covid or ME or CFS patients may deteriorate with treatment, so long as some people show some improvement with the recommended interventions of psychological therapy and GET.

  • St George 28 July 2020, 3:53 pm

    I wouldn’t wish ME on anyone, but if some of these folks that keep peddling the same old CBT/GET rubbish experienced even a day of what someone with ME lives with for years, they’d drop this cr*p in an instant.
    It’s not all in our minds and exercise makes us worse, simples!

  • Lois 28 July 2020, 5:23 pm

    I’m wondering how Mr Wessley’s wife is faring? She said way back at the beginning that the Covid had left her really tired. I wonder if she’s developed post viral fatigue? I hope not. Wouldn’t wish it on anybody.

  • Diana 29 July 2020, 5:12 am

    My step counter has proved to be a valuable resource for tracking activity and consequential CFS/ME symptoms. The evidence is clear, If I keep pushing on when I’m fatigued and symptomatic and hold on to the belief that I will improve by steadily increasing my activity the crashes are longer and more severe. It doesn’t just increase fatigue, life starts to get out of control. Simplistic as it doesn’t take into account intellectual and emotional output but demonstrates to me very clearly that GET is not just unhelpful but unsafe. Of course I might be well now if I modified my thinking with some CBT!

  • robert wijbenga 30 July 2020, 8:02 am

    meanwhile in the Netherlands:

    https://www.zonmw.nl/nl/over-zonmw/coronavirus/onderzoek-naar-corona-en-covid-19/voorspellende-diagnostiek-en-behandeling/behandeling/

    ZonMw subsidizing Hans Knoop with his reCOVer-research. Title speaks for itself, like PACE, SMILE, etc

  • Viki Norman 31 July 2020, 8:49 am

    TDS bias

  • Dan W 3 August 2020, 9:15 am

    I for one am sure growing tired of Chalder’s interest in fatigue. I wonder what advice she has for people suffering from a surfeit of shit science?

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