As David mentioned in this letter, in 1988 he and colleagues put forward an alternative model of post-infectious chronic illness. Since that time, that model has come to dominate completely, becoming the de facto standard of care, although generally under the generic label of "chronic fatigue", a vague construct invented explicitly to be neutral in etiology, unrelated to infectious diseases or any other cause.
Since that time, this "biopsychosocial" model has come to so thoroughly dominate the medical zeitgeist that serious research efforts have been made impossible, even maligned as pointless, since "all these patients need is positive thoughts and exercise", the very model David, Wessly and Pelosi proposed in 1988 and have promoted relentlessly since. Such assertions made many headlines, in those very words in the UK, following the PACE trial, despite having since been found to have misrepresented its actual results: no difference in outcome at long-term follow-up on all measures. The same results as hundreds of similar trials of the same model.
So it is not surprising that long haulers were met with this standard model, as most were told variously that their illness is impossible, that “viruses don’t do that”, with hundreds of "rehabilitation" clinics having sprung up since, all based on this generic model of deconditioning as a result of illness “beliefs”. Even in countries that did not formally implement this model, who instead chose to simply deny the existence of this category of illness, a distinction without a difference.
This biopsychosocial model is especially dominant in the UK, where it has been used in practice since even before 2007, when it was encoded into NICE guidelines despite a lack of evidence. Omitted in this letter is the fact that this model, seemingly presented as “hypothesis and therefore provisional” that has yet to be tried in True Scotsman form, has actually been pushed forward into practice, despite strong opposition from the patient community, has had comfortably more than a decade to prove itself, and was since invalidated by major medical authorities on no less than 3 occasions, the last of which happened mere weeks ago, when NICE recognized that the entire body of evidence supporting it was at best of "low quality", and at worse of "very low quality". All of it.
In addition to NICE’s latest evaluation, the American NIH and CDC have also dropped those recommendations in recent years, having found the evidence lacking in all aspects, the NIH even asserting that continued use of the Oxford criteria underpinning it “impairs progress and causes harm”. In an extensive process, NICE examined no less than 200 trials of various "biopsychosocial" rehabilitative strategies, mostly named CBT or GET. It's not clear why this needed to be tested hundreds of times over, but the fact remains that all relied on open label trials with non-specific subjective end-points, used vague questionnaires of little relevance to the illness, and were all run by people with very strong therapeutic bias towards this model. And none were specific to ME/CFS, never featuring the hallmark PEM, post-exertional malaise, that is also common in Long Covid.
Which makes David's assertion that this model, presented as a provisional hypothesis, has yet to be tried and tested simply impossible to explain, as does the lack of editorial concern for what is a very glaring omission. The evidence for this "biopsychosocial" model of illness has the peculiar habit of existing or not depending on how sold the audience is to its assumptions and beliefs.
For decades proponents of this model, especially David’s co-author Simon Wessely, have been openly antagonistic to the ME patient community, at times writing articles in the media maligning severely ill patients for rejecting consent for what is, quite frankly, a bizarre model based on ideological short legs.
David also writes: “It is no surprise that covid-19 has become the focus for a renewed debate about post-viral fatigue. It happens every time a pathogen is discovered or re-discovered”. There have in fact been several epidemics since 1988, including Swine flu and SARS, both of which have left similarly neglected trails of chronic illness, neither of which raised any such debate. In fact looking at the long-term consequences of both epidemics, one finds nothing but the same vague mentions of mental health, if at all. There is a clear taboo in medicine over this issue, the mere mention bringing some to foam at the mouth for inexplicable reasons.
Predictably, the long hauler community has reacted the same way to this model, instead largely thankful to the ME community for giving them the information health care systems have long rejected, and have now since come to begrudgingly accept to varying degrees.
That the long hauler community shares the same concerns, reasonable and legitimate, and voices the same criticism is no surprise, as periodically repeated claims of a small vocal minority have always been at odds with reality. The media campaign to malign the ME patient community may be the only success under its belt.
The ME patient community has always opposed this paradigm for rational and legitimate reasons. To suggest otherwise, that millions stubbornly refuse safe and effective treatment for life-ruining illness out of mere disdain for psychology, is preposterous to the point of farcical. This is why consent matters. When it is seen as a challenge, as is evident in the biopsychosocial ME literature, legitimate criticism gets ignored and harm follows. To have ignored millions of those complaints for decades is a shame medicine will have to bear forever.
Long Covid has shown that even a mild infection can trigger this kind of illness, even in very fit individuals who were never at any point bedbound or inactive enough to be clinically deconditioned. There is simply no rational argument to maintain that deconditioning is a valid cause, given these reasons, in addition to the simple fact that millions live healthy but sedentary lives, sometimes even paralyzed and largely immobile, without suffering any of those symptoms. Nevermind that deconditioning does not fluctuate, a feature common to ME and Long Covid and should have prevented it from ever taking hold, had common sense prevailed.
It is also a simple fact that many countries that did not bother doing more than categorically denying such an illness even exists show no evidence of different outcomes. Or put another way, the tens of millions of pounds the UK have spent on this clinical model did no differently than nothing at all. A fact confirmed again and again by trials and clinical data showing no difference in outcomes wherever and whenever one looks.
What Long Covid has confirmed beyond a doubt is that this is an illness from which people recover at different lengths, whether it be weeks, months or years there is no explanation yet, and that the benefits of David’s and Wessely’s behavioral treatment model have always consisted of simply attributing credit for natural recoveries and the bumps of relapsing-remitting patterns, a mere illusion that is easy to catch from even a slightly rigorous methodology. One so obvious that even thousands of brain-fogged amateurs who can barely remain standing could spot it easily.
I must add to this reply concerns about BMJ's editorial standards. It is inexplicable that David’s letter could be published with the many glaring omissions I mentioned above, especially the fact that the very model proposed here, yet again, has been invalidated by UK health authorities, yet again, a mere few weeks ago. There is simply no excuse for such a lax editorial process, as it grossly violates both the letter and spirit of the so-called duty of candor. It is hard to determine who bears the most blame, the author who misrepresented the facts, or an editorial process that is seemingly indifferent to it.
From the perspective of a patient who has been failed by this treatment model, it is clear that medical knowledge is not even half-way through, that there is far more to learn ahead. It is the height of hubris to attribute myriad vacuous psychological causes to complex immunological phenomena on the basis that medicine has checked everything. It hasn't, it can't. Not only does the technology not exist, the knowledge doesn't exist either. Yet. It can happen, but not by a chance, and certainly not by entertaining the same ideas in infinite loops. Unfortunately, this very same god-the-gaps rhetoric is happening yet again with Long Covid, and the BMJ yet again presents old ideas as somehow new and untested.
This can all change. Long Covid can be the catalyst for a real revolution in health care, one that finally applies the main lesson of the AIDS crisis: nothing about us without us. A lesson that has never been accepted, medicine remains very top-down and paternalistic, still scolding neglected patients for its own confusion. It takes real humility to accept having been wrong, David instead chooses to be wrong all over again, with the same intent and purpose, a grand display of the same hubris that guaranteed the failure of this model long before 1988.
I hereby beg the BMJ to have such humility, now and in the future. The chronic illness patient community has been wronged and failed, as NICE and the NIH have timidly recognized. You can be catalysts for change, and it begins by telling the simple truth, the whole truth, and nothing but the truth. Please do much better, our lives literally depend on it and millions have been failed already.
