By David Tuller, DrPH
In what could be described as a form of epistemic land grab, core members of the graded exercise therapy/cognitive behavior therapy (GET/CBT) ideological brigades have proposed a “research agenda” for long Covid that reflects the premises of their crumbling treatment paradigm for ME/CFS. This is not surprising. It has been clear from the early reports of continuing symptoms after Covid-19 that this powerful cabal would seek to colonize the field and devour a large share of the long Covid funding pie.
“A research agenda for post-COVID-19 fatigue,” published as an editorial by the Journal of Psychosomatic Research, is from a group known as the Collaborative on Fatigue Following Infection (COFFI). The round-up of authors includes some of the usual suspects in this domain of inquiry, such as Rona Moss-Morris, Andrew Lloyd, Simon Wessely, Vegard Wyller, and Hans Knoop. (I have written about shoddy work conducted by each of these authors.) This paper represents the most recent step in the effort to extend their discredited psycho-behavioral strategy for ME/CFS patients to those suffering from long Covid.
To be fair, in this new paper the authors do advocate for the collection of basic biomedical data in longitudinal studies of long Covid. In light of all the unknowns about SARS-CoV-2 and the flood of emerging discoveries about the neurological and other impacts of infection, it would have been difficult if not impossible to publish a “research agenda” that omitted such a call. In this context, however, it comes across mostly as a nod to the reality of the circumstances rather than as an indication of serious concern about biomedical aspects.
Their actual interests—and the true point of this “research agenda”—appear to lie elsewhere. While they understand that biomedical research will be conducted, they are staking a claim for the same kind of investigations they have pursued for years into the illness they have preferred to call CFS. In their research, they have favored the “psychosocial” in their much-touted “biopsychosocial” framework over the “bio.” While they acknowledge that an initial viral or other infection could trigger the syndrome, their decades-long project has involved denying any role for ongoing pathophysiological processes.
The premise of their favored interventions is that patients who don’t buy into these “psychosocial” theories but do believe in the “bio” aspects of ME/CFS are harboring “unhelpful” and “dysfunctional” illness beliefs that lead to sedentary behavior and deconditioning. These beliefs and behaviors, per the authors, are the factors that generate and prolong the classic CFS symptoms. Within this context, patients need either CBT to alleviate them of their abnormal “illness beliefs” and/or GET to get them back into shape through a steady increase in activity.
So many flaws, so little time
So with this long Covid “research agenda,” where to begin?
One major problem is that these authors have generally reduced the entire spectrum of post-viral or post-infection illness to the domain of fatigue, despite the range of symptoms reported by many patients with these conditions. They do so again here, as the title indicates.
Given this fatigue-centric focus, the article does not mention the core ME/CFS symptom of post-exertional malaise (PEM), or post-exertional symptom exacerbation, as it has been called. Many long Covid patients have similarly reported experiencing PEM. The article also does not mention cognitive deficits and dysautonomia, and in particular postural orthostatic tachycardia syndrome (POTS). These are central complaints in both ME/CFS and long Covid.
To interpret everything in terms of the vague construct of fatigue represents a myopic perspective. However, some of the authors have built careers on these concepts, so it is understandable they are resistant to change and eager to defend their beleaguered turf—even at the risk of appearing foolish and a bit desperate to others.
The article includes some questionable passages. Here’s one:
“Previous research has shown that psychosocial factors, such as distressing life events, may predispose to developing PIFS, whereas symptoms of depression or anxiety, cognitive factors (i.e., illness beliefs) and behavioural factors (i.e., changes in activity patterns) may act as perpetuating factors. It is therefore unfortunate that there seems to be opposition to research into psychosocial predisposing and perpetuating factors that play a role in PIFS… It would be a shortcoming if we were to exclude research areas.“
Let’s be clear. The main evidence for the purported “predisposing” and “perpetuating” factors comes from studies that find associations between such cognitive and behavioral patterns and worse illness outcomes. These experts have a tendency to assume that such associations represent causal pathways in the direction supporting their hypothesis—that is, they believe these cognitive and behavioral patterns directly lead to the poor results. In making these assumptions, they overlook an equally if not more plausible and rational explanation–that the causality runs in the other direction.
In other words, people’s cognitive and behavioral patterns are likely to reflect the reality of their condition. Patients with worse physical health are more likely to believe—with reason—that they have an organic disease, and if they have an organic disease they are of course also likely to have more negative outcomes. People who experience PEM are more likely to reduce their behavior patterns—a smart move if they want to avoid repeated crashes. Of course these patients have a fear of doing too much! That is not a function of harboring “unhelpful“ beliefs about illness but of learning from past experience. In the presence of PEM, a treatment like GET is contra-indicated.
These concepts are not hard to understand. It requires willful stupidity to overlook them. Yet the GET/CBT ideologues seem unable to entertain these interpretations as legitimate possibilities. This is reflected in the current paper’s citations. The authors cite none of the major research that has refuted their perspective, such as the 2015 report from the US Institute of Medicine and last year’s new ME/CFS guideline from Britain’s National Institute for Health and Care Excellence (NICE), which repudiated the agency’s previous recommendations in support of the GET/CBT paradigm.
Should psycho-behavioral treatments be offered to long Covid patients?
The “research agenda” authors make an oblique but peevish reference to the international rebellion against the treatments they have championed, declaring it “unfortunate” that there is opposition to their research strategy. Given the lack of evidence for their claims, the “unfortunate” aspect of this whole affair is that these authors and other self-important pooh-bahs have amassed so much influence and control over the public health purse strings. They have promised government agencies and other funders that their interventions can get people back to work and health—yet their trials routinely fail to document such results.
Nonetheless, based on meaningless findings from poorly designed studies, the authors assert boldly in their section on “interventions” that their psycho-behavioral treatments “should be available to patients with post-COVID-19 fatigue.” Interestingly, they do not cite the PACE trial. Perhaps Wessely no longer stands by his previous claim that PACE was “a thing of beauty”? Or perhaps they would then have felt forced to cite as well the 2018 re-analysis that rebuts all the main PACE results? (Disclosure: I was a co-author of that paper.)
The flimsiness of their overall argument is evident from the reference for this statement: “Exercise therapy was previously found to be effective in chronic fatigue syndrome.” The citation is of a 2019 Cochrane review called “Exercise therapy for chronic fatigue syndrome”–the subject of much controversy due to its unacceptable methodological flaws. (I have participated somewhat in this controversy, but my friend and colleague Caroline Struthers, a self-described citizen scientist and “health research enthusiast,” has rigorously pursued the Cochrane issue and has documented her meticulous efforts on her blog, Healthy Control.)
Cochrane published a comment alongside the 2019 review, which was an update of an earlier version. The comment noted that the new review “places more emphasis [than the previous version] on the limited applicability of the evidence to definitions of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) used in the included studies, the long-term effects of exercise on symptoms of fatigue, and acknowledges the limitations of the evidence about harms that may occur.”
The comment also included this acknowledgement of the review’s serious limitations from Cochrane editor-in-chief Karla Soares-Weiser: “This amended review is still based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s.”
Translation of these Cochrane statements into standard English: This review is unreliable.
Cochrane has launched an effort to create a completely new guideline. That the “research agenda” authors consider this pathetic document to be reliable evidence for GET demonstrates a troubling lack of scientific acumen and integrity.
The “research agenda” does not mention the most recent statement on the issue—the new ME/CFS guidelines from NICE, published last October. A review accompanying these guidelines found that the quality of the evidence for the effectiveness of GET and CBT was either “very low” or merely “low.” The agenda authors do not have to agree with this conclusion. But it is unacceptable to ignore these very recent and very salient assessments from an authoritative and widely respected arbiter like NICE—however unpleasant or unwarranted these determinations might seem to the authors.
In any event, we are already seeing some of the early fruits of this “research agenda.” Knoop, the senior author, is conducting a trial of CBT to prevent severe fatigue among long Covid patients. I have already criticized this study and its protocol. Since it is unblinded and relies solely on subjective outcomes, it is designed in a way that maximizes the possibility of positive findings.
In response to recent questions from patient advocates about the absence of objective measures in the study, Knoop indicated that he avoids them because in the past the results have contradicted the findings from the subjective measures he prefers. That’s certainly an unusual rationale for abandoning objective outcomes.
But what about Knoop’s call in the new “research agenda” that psycho-behavioral interventions for long Covid should “be evaluated using both psychological and biological data in relation to response to treatment.” Oh, that? Never mind!
12 thoughts on “Trial By Error: The Usual Suspects Promote a Psychosocial “Research Agenda” for Long Covid”
One of the first things I learnt to say in Welsh –
Dydw i ddim yn hoffi coffi.
I knew it would come in handy one day!
How would you feel about writing to a UK programme called Panorama about this blatant grab for Covid funding and the history of these people regarding psychologising M.E?
We need a huge exposé on the people who are doing this for vested interest and not in the interest of Long Covid or M.E patients.
Wessley was knighted for his work and it sticks in patients throats that the public don’t know what these people have done. It is time the lid is blown off this.
I greatly fear for all the new sufferers with long covid – they are desperate, and not educated about the psychosocialbabble crew – and a number of them will let themselves be argued into it, and will get much sicker.
This has to be rooted out NOW, before they waste any more public money, and before the get any new victims.
If those of us who have been sick for decades do nothing but get that warning out, so the new funds are directed to actual physical research, we will have something to show. There is always the possibility that we have been damaged for too long to improve – we can’t let that happen to more people.
Unsurprised, yet exasperated to see Andrew Lloyd’s name amongst this bunch. An Australian who is amongst the category of having built a career, and clinic, ‘treating’ ME/CFS patients.
I feel for those suffering Long Covid who have insufficient knowledge of debunked science surrounding GET/CBT, and may feel desperate enough to heed whatever doctors are advising, totally unaware of the importance of remaining within their energy envelope.
As for “(i.e., illness beliefs) and behavioural factors (i.e., changes in activity patterns) may act as perpetuating factors” – my partner and I travelled Australia for 3 years a few months following the viral trigger of my ME (as was already planned). Our lifestyle was absolutely brilliant, enjoying nature, seeing awesome places, meeting new people. Travelling came to a halt due to my physical decline, resulting in the inability to even walk along a beach. Illness beliefs and activity patterns? If their disinformation wasn’t so seriously impacting people’s lives, it would be laughable!
There seems to be a bit of a ‘theme’ at the moment whereby really unpleasant people, with really lunatic ideas about things, try to impose their cruel and baseless preconceptions on innocent populations by any means at their disposal.
Now who *could* I be talking about?
Indeed, Lady Shambles.
Where is the humanity in exploiting the trauma that people have suffered – whether that’s as healthcare workers on the covid frontline, war veterans, refugees, disaster survivors or as abused, deprived or discriminated-against members of our society – whilst simultaneously adding to it by denying them the physical healthcare and/or biomedical research that they so desperately need?
That surely can’t be what the biopsychosocial model of medicine was supposed to be about?
And I really don’t understand why doctors and other healthcare workers aren’t now supporting their stricken long-covid colleagues by standing up to their medical overlords en masse and shouting out “this is so crazy and so wrong”.
“the authors have built careers on these concepts [of fatigue]”
The psychobabblers have built careers on a growing pile of bodies, that is, they are career criminals. They get away with it because the rest of the medical industry is little better. In an ocean of iatrogenic harm, the abuse of ME patients barely makes a ripple.
For example, I was fired from a hospice program two months ago because I’m not dying fast enough. The oncologist fired me last week because I can not tolerate the proposed barbaric treatments of radical surgery, radiation, and toxic drugs. Apparently cancer doctors only treat tumors, not patients.
I have been waiting two months for referrals to home health care and palliative care. Delay, Deny, and Hope They Die is a universal strategy.
I have been abandoned by society and the medical industry to die at home alone with effectively no medical care. And my situation is hardly unique.
Er: ‘Collaborative on Fatigue Following Infection’ abbreviates to ‘COFFIN’.
Which is where the thories of these latter day Lily the Pinks and their quack panacea, will soon be, along with hers.
Gosh! They really made her take her own medicine in this version! 🙂
Who doesn’t hope that they’ll get a taste of their own medicine, and the sooner, the better?
Thank you, David,
The last time Wyller used objective measures in a study didn’t go so well:
The article was retracted, amended and re-published. Then, it turns out the results were even worse than first reported:
Cochrane published that note in 2019… 3 years ago… how much longer must be wait for an update?
Surely Cochrane must have a timescale somewhere in their supposed standards? If not, then why not?
Without a commitment to timeliness Cochrane reviews on “best evidence” stand forever in the way of medical progress. It is akin to claiming chloroform is the anesthetic of choice if there is no clear commitment to update – or retract – reviews with substantial flaws in a reasonable time scale. Surely it cannot possibly take 12 months to update a single review… so why have Cochrane failed to do this?
Cochrane clearly have a huge oversight in their supposed high quality standards if an unacceptable review can be allowed to stand indefinitely? As this one appears to be allowed to do.
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