Trial By Error: More on the Royal Society of Medicine Webinar

By David Tuller, DrPH

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On September 24th, the Royal Society of Medicine hosted a webinar called “Long-COVID: Understanding the shadow of the virus.” In a previous post, I criticized one of the panelists, infectious disease expert Alastair Miller, on several grounds. He promoted graded exercise therapy, made unwarranted claims about recovery rates from CBT/GET treatments, and suggested that the PACE trial suffered only from “bad press” rather than methodological violations that appear to meet definitions of research misconduct.

Carolyn Chew-Graham, a professor of general practice research at Keele University in Staffordshire, also participated. Professor Chew-Graham is the main author of the Royal College of General Practitioners’ unfortunate online training program on CFS/ME, which I critiqued here. That program, METRIC, is based squarely on PACE and its so-called “sister trial,” the FINE trial. (Professor Chew-Graham was a co-author of the FINE trial.)

These trials, and the CBT/GET paradigm itself, are grounded in the notion that what patients say about their symptoms should be dismissed and disbelieved. To recover, patients must learn to replace negative thoughts about their abilities and energy levels with positive ones and overcome their irrational phobias about exertion. The interventions rely on the unproven hypothesis that deconditioning, and nothing pathophysiological, is the cause of the prolonged debilitating symptoms.

Professor Chew-Graham is also a prominent player in the field of so-called “medically unexplained symptoms.” Since she and her colleagues identify CFS/ME as an MUS, the theoretical approaches are pretty similar. Deploying flawed research, the powerful MUS lobby in the UK has expended enormous efforts to ensure that GPs shunt off patients whose symptoms they don’t understand to psycho-behavioral interventions, rather than referring them to medical specialists.

Professor Chew-Graham and some of her MUS colleagues have a history of mis-citing a seminal paper in their claimed field of expertise–a paper that examined the cost of MUS to the UK’s National Health Service. The effect of the mis-citation is to dramatically inflate this apparent cost. The dissemination of this false data point has helped create the perception of the need for ever more services to treat MUS—which is of course beneficial to the MUS experts who mis-cited the study in the first place. Two of Professor Chew-Graham’s papers have been corrected for this embarrassing mistake. (I played a role in forcing both corrections, although I was alerted to the issues by a valued informant with a sharp attention to detail.)

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Professor Chew-Graham endorses pacing

Given all that, I was surprised by Professor Chew-Graham’s relatively muted expression of support for graded activity and her explicit endorsement of pacing as a viable option. This seems to represent something of an about-face. In the webinar, she discussed a qualitative study she conducted in July and August for which she interviewed 30 so-called “long-haulers”–patients who reported becoming sick in the early weeks of the pandemic and continued experiencing serious symptoms.

The distress of these patients over their inability to find sensitive and appropriate medical care seemed to have created a strong impression on Professor Chew-Graham. Some or many of them were experiencing symptoms for long enough that they might have met the 2007 definition of CFS/ME from the National Institute of Health and Care Excellence. Or perhaps they would fall into the MUS category that Professor Chew-Graham has so long championed.

The recommended treatments in both cases, at least in the NHS program called Improving Access to Psychological Therapies, are psycho-behavioral interventions like CBT and GET. The list of accepted interventions does not include pacing. In fact, the PACE trial purported to have proven the ineffectiveness of pacing. Here’s a key statement about PACE from the Professor Chew-Graham’s METRIC program for GPs:

This trial shows that approaches aimed at staying within limits imposed by the illness are less effective than those that test or extend such limits…This trial has also shown that people with CFS/ME who had support from specialist therapists to gradually increase their activity levels were more likely to report improvements in function and symptoms at the end of the year-long study.”

In the webinar, here’s what Chew-Graham said about the patients she interviewed:

People talked about how it was really hard work trying to understand their symptoms and endure their symptoms, but also trying to seek help for their symptoms. People described not being believed. A key finding was that participants in my study said it’s really important to find the right GP. [They said] ‘I need to be believed, I need to be taken seriously, the GP I talk to needs to have empathy and understanding and not dismiss my concerns’…The people I talked to in my interviews very much said they had only a small amount of energy and during the recovery phase they felt they had to stick within this and that the post-exertional fatigue was tremendous.

Professor Chew-Graham comes across as extremely concerned about these patients and their distress at being dismissed. She appears to believe that they should be trusted to know their own energy limits. She does not explain why that sensible approach does not apply with CFS/ME and MUS—even though some of the patients she interviewed might have already met criteria for those diagnoses. And why does Professor Chew-Graham endorse pacing as a strategy for patients experiencing post-Covid symptoms but argue against it for patients with what she and her colleagues tend to call CFS/ME? In light of her new qualitative data, perhaps she will revisit her previous publications and reassess her commitment to the CBT/GET approach.

In the webinar, Professor Chew-Graham agreed Miller, the infectious disease experts, that patients with specific organ damage needed to be differentiated from those experiencing a standard “post-viral syndrome.” But she expressed concern that patients had limited access to the suite of specialist diagnostic and rehabilitation services needed to make the appropriate determinations and develop treatment plans with confidence. Given that and the many medical unknowns, she said, it’s “a frightening position for patients to be in but also for GPs to be in.”

What explains Professor Chew-Graham’s apparent shift? Perhaps she is simply responding to the stories of sympathetic interview subjects. Maybe it’s because this is a new illness and these are still short-term patients and so what is said about them doesn’t apply to CFS/ME or MUS patients, who have often been ill for years. Perhaps, a year from now, she would advise post-Covid patients who did not have specific organ damage yet still suffered from fatigue and other non-specific symptoms that they had CFS/ME and needed to forget about pacing and get some CBT or GET.

On the other hand, perhaps she now has a deeper awareness that an inability to explain patients’ symptoms, while likely “a frightening position” for GPs, does not justify the presumption of unhelpful illness beliefs and deconditioning that characterizes the CBT/GET paradigm. In any event, does Professor Chew-Graham recognize the apparent discordance between what she said in the webinar and what she has written about CBT/GET, MUS and the like for years? It would be interesting to find out.

{ 11 comments… add one }
  • Sarah Lawry 5 October 2020, 5:43 am

    I left a message on Twitter to Caroline Chew-Graham asking her if she’d like to respond to the comments in your blog.

  • CT 5 October 2020, 6:35 am

    I hope she responds, Sarah, she does appear to have shifted her position quite significantly. I went to Professor Chew-Graham’s Twitter page and came across this tweet that she’d retweeted from a desperate NHS GP, which I think deserves flagging up here: (https://twitter.com/drjamieparker/status/1312694398090649600 ). These are desperate times indeed, but for many ME patients the last few years or decades have been just as desperate.

  • jimells 5 October 2020, 9:25 am

    “a frightening position”

    The psychobabblers should be frightened. Their fraudulent work is blowing up in their faces and there is the possibility of being held to account for their actions, perhaps even in a court of law. Maybe some of them are even starting to understand the immense harm they have caused to millions of ME patients, and are feeling a bit guilty and ashamed.

    It was interesting to hear Trump’s doctor admit in public that doctors routinely gaslight patients, something which ME patients have always known. The evil virus is exposing to the world that the modern medical machine is a broken corrupt mess. I hope something new can emerge from the wreckage.

  • Alicia Butcher Ehrhardt, PhD 5 October 2020, 2:37 pm

    I hope it comes from awareness from speaking with actual patients about their unhelpful physicians.

    That we’ve been saying the same for decades and have been hugely ignored is hurtful; but anything that changes the hearts and minds of doctors is potentially a step toward improvement in attitude and treatment, even with nothing new discovered.

  • anon 6 October 2020, 11:32 am

    Thats because she has covid long tail herself David. She joined our group and when I was interviewed for this project, I pulled out due to what I discovered that it might potentially be used against us and ME patients. She expressed that she couldnt understand why GPs and others were refusing help or as I told her, why we are all being told we have mass anxiety and prescribed GET which had lead some of our patients to have heart attacks….

  • Richard 6 October 2020, 12:05 pm

    She knows that if she makes such cultish claims about the nature of long covid, the world will see them for the nonsequitur they are as the world knows long covid is due to the coronavirus and she will expose BPS theory for projection it is and bring about the long overdue ruination of this unscientific approach.

    It has always struck me as breathtaking hypocrisy that some professional psychologists deliberately use the psychological error of projection as a means to project baseless stereotypes on the weak and ill and defenceless, to increase their patient base and expand their funding to the detriment of many innocent people who are just looking for proper help for a real but unrecognised medical condition.

    It is not only hypocrisy it is also corrupt, amoral and cruel.

    Which is why I am very grateful David Tuller tells the world what they are doing and helps to expose and thereby curb this practiced and institutionalised abuse of psychological knowledge.

    The problem is some people are attracted to psychology because it is sometimes presented as a means to power, rather than wisdom. It is an ancient truism that power corrupts and BPS GET is a case study of the way the power of psychology can be corrupted.

    I hope oneday that this will be recognised academically, documented and studied so we can learn the lessons it teaches as a worldwide scientific culture, despite the embarassment it represents to some academic institutions.

  • SusanC 6 October 2020, 9:47 pm

    I’m going to add a dissenting voice here.

    I strarted reading Dr Tullers posts because I was looking up stuff about covid19, not because of an interest in Dr Tullers work on CFS.

    CFS isn’t my research area and I don’t have it either – at least, not quite. I think I do have something like PTSD from a serious infection (and have been under therapists treatment for it). When my therapist asked me if I thought I had CFS, I said no – I don’t have the right symptoms, though I said I clearly have depression symptoms. When she asked about PTSD, I also said my symptoms didn’t quite fit that diagnosis. My reaction to the current situation – I don’t have covid19, but I do have trauma from an unrelated infection – has made me more inclined to believe I have PTSD.

    So I think the trauma triggered by infection model really does apply to some patients, and I’m one of them. CFS on the other hand, might be something altogether different, and the research is methodologically very bad.

    I hope this doesn’t offend any of the CFS patients who read this – like I said, they clearly have different characteristic symptoms and a different sort of treatment may work for them.

  • jimells 7 October 2020, 11:07 am

    SusanC, one big problem is that the medical machine is very sloppy in its use of language. Terms are often poorly-defined and used in different ways at different times, even by the same people. Humpty Dumpty’s comments about words meaning whatever he wants them to mean, definitely applies to medicine, which causes much confusion and division: often that is the intent.

    It’s impossible for me to guess what any particular use of the label “Chronic Fatigue Syndrome” might actual refer to. Myalgic Encephalomyelitis, regardless of the accuracy of the name, generally refers to specific definitions that include Post Exertional Malaise as the hallmark symptom. PTSD and depression don’t define the illness, although ME patients can also suffer from PTSD and/or depression, just like anybody else.

    Of course PTSD and depression should be treated by whatever treatments are effective. That has nothing to do with effective treatments for ME, and perhaps now the Long Covid people. Long Covid might be ME, or might lead to ME, or it might be something else. No one really knows yet, although there is plenty of speculation.

    ME patients and advocates do have a problem with psychiatrists who promote graded exercise (GET) which has been shown to be harmful, and CBT based on the theory that ME patients are afraid of exercise and are deconditioned.

    The one idea I would like Long Covid people and their physicians to understand is that they are allowed to rest as much as they need, and to be given social support that allows rest to happen.

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