By David Tuller, DrPH
People who know little or nothing about the illness or cluster of illnesses variously called myalgic encephalomyelitis, chronic fatigue syndrome, CFS/ME, and ME/CFS can€™t seem to stop writing stupid and ill-informed stories about it. And Professor Michael Sharpe seems to blame €œAmericans€–rather than his own disastrous research–for his current problems and the reputational damage he has suffered. That€™s mainly what I got from articles in The Guardian and Psychology Today that followed one another in quick and dispiriting succession last month.
Both stories were essentially rehashes of the March dung-heap written by Reuters €œreporter€ Kate Kelland, one of the Science Media Centre€™s BFFs in the UK. Right now I€™ll focus on the Guardian piece. (It ran on a Sunday, so it was presented as a piece in The Observer, the Guardian€™s sister paper.)
The writer, Andrew Anthony, is a long-time contributor who apparently accepts whatever he reads in Reuters at face value. He presents Professor Sharpe as a man at the top of his field, an Oxford don of high principle and integrity, at the inexplicable mercy of irrational, abusive patients. And once again, I am presented as the enabler-in-chief and some sort of Pied Piper of ME, leading patients on a path away from science, reason and the evidence-based benefits of CBT and GET.
The article tries to balance Professor Sharpe€™s silly statements by quoting Dr Charles Shepherd, the ME Association€™s medical expert. But since Anthony appears to have little awareness of the issues involved or the problems with the trial, he largely adopts the frame presented by Professor Sharpe. As an example, let€™s take a look at how the article explains why PACE was controversial:
The trial became the subject of controversy for several reasons. One is that it looked at ways of dealing with the symptoms of an illness rather than exploring a cure for a disease. Another is that it suggested there might be a psychological component to the manner in which sufferers experience the illness. And then finally, question marks were raised over the trial€™s methodology.
The last sentence is true. The two that precede it are fantasy, the delusions perpetrated by Professor Sharpe and his colleagues. Did Anthony actually read the trial? The Lancet paper included detailed descriptions of the theoretical basis for the treatments. So it is very, very clear that the investigators did not view themselves as €œdealing with the symptoms.€ They were specifically treating the deconditioning that they believed was at the heart of the condition and the €œunhelpful€ beliefs that were presumed to be triggering sedentary behavior leading to that hypothesized deconditioning. I mean, they wrote a whole paper about €œrecovery€ from illness, not about €œrecovery€ just from symptoms of illness. They pronounced 22% of participants in the CBT and GET groups to be free of CFS. It is categorically false to state that PACE was only €œdealing with€ symptoms.
The second purported reason for the PACE controversy is one that these people routinely trot out–the notion that patients object to the treatments because the treatments imply the illness is psychological or psychiatric in nature. This is untrue. Patients object to the PACE trial because it stinks. It violated multiple methodological and ethical principles of scientific research, whether Professor Sharpe and his colleagues want to acknowledge this or not. I assume Anthony has not done his homework and has not read the open letters to The Lancet or other core documentation of the trial’s failings.
Interestingly and tellingly, the article ignores last summer€™s open letter to The Lancet signed by 100+ experts from around the world or Wilshire et al, the BMC Psychology paper that reanalyzed the PACE and refuted all the core findings. (Disclosure: I was a co-author of that paper.) Beyond that, the article does not mention anything further regarding the €œquestion marks€ about the trial€™s methodology–and especially that it is not only patients and me that have highlighted these €œquestion marks.€ In this case, such omissions arguably constitute journalism malpractice.
The statements about me further illustrate the story€™s shaky relationship with, you know, reality. That section is preceded by Professor Sharpe€™s interesting, and I guess not inaccurate–observation that everything was just fine until €œthe Americans got involved.€ As the story segues to my involvement, Anthony refers to me as €œa man called David Tuller€–as if there might be some question as to whether David Tuller is my actual name or only the name that I allow people to call me.
(This naturally brings me back to the American literature survey course I took my freshman year of college. €œCall me Ishmael€ is the first line of Moby-Dick and among the most famous first lines in American literature. Anyone who reads Moby Dick in a college literature course learns immediately that you have no idea if Ishmael is his name or not. All you know is that€™s what he wants people to call him, for whatever reason. So, given that: Call me David Tuller.)
Ok, moving on from whales. Anthony cites me as an example of the €œtough kind of activist€ bred in the wild environment of the litigious private US health care system. I have no idea how he came up with this perplexing origin story for me. It is also unclear to me what the private US health care system, litigious as it might be, has to do with the fact that PACE participants could be €œdisabled€ and €œrecovered€ simultaneously for physical function or that the PACE investigators rejected the objectivity of their own objective measures. What does the private US health care system have to do with my desire to publicly expose such shenanigans?
And of course, like the fictional account published by Reuters, the Guardian article includes no mention of my doctorate in public health and my academic position at UC Berkeley€™s Center for Global Public Health. Instead, my main qualification for my work appears to be that I am a former AIDS activist, a meme also perpetrated by Kelland. I have always been mystified about how my two-year involvement in ACT-UP more than 30 years ago, from 1986 to 1988, is relevant to my critiques of the body of literature revered by the CBT/GET ideological brigades in 2019. Once I moved to San Francisco to become a newspaper reporter, I no longer participated in any activism whatsoever. It was barred by the terms of employment. To raise it now as anything other than a mildly interesting factoid about my past is silly.
Next, the journalist writes this about my strategy: €œHe takes a highly detailed approach to medical papers, closely reading them to uncover any inconsistencies or potential flaws.€ That this appears to be presented as part of the negative critique of my work and impact is confusing Given the context, the story seems to be suggesting that this €œhighly detailed€ approach is problematic. But shouldn€™t people be reading medical papers closely to uncover any inconsistencies or potential flaws? Especially since it appears that, in this domain of inquiry, the investigators themselves and reputable journal editors (I€™m looking at you, Richard Horton and Fiona Godlee) appear unbothered by any such inconsistencies or potential flaws? This activity is only problematic if your studies, like the PACE trial, can€™t withstand that sort of scrutiny.
And he calls me “instrumental” in Cochrane’s decision to withdraw a review of exercise therapies–but then he links not to the currently contested exercise review, which has not been withdrawn, but to the protocol for the individual patient data exercise review, which has been. It is clear from this section that Anthony does not understand that there were two separate Cochrane exercise papers. And the protocol for the individual patient data exercise review was withdrawn under withering criticism from peer-reviewers. To clarify: I have never claimed to have influenced Cochrane over anything. I have only noted that I “pressed hard” when I met with David Tovey, Cochrane’s recently retired editor-in-chief. There is no evidence that my actions have impacted Cochrane in any way at all.
I€™m not going to deconstruct the entire article. But I couldn€™t let this sentence pass without comment: €œSharpe counters that nowhere in his writing has he ever argued that there is no underlying disease, only that, given the disease has not been identified, the most effective current treatment has to be directed at the symptoms.€
As Professor Sharpe knows very well, the entire CBT/GET paradigm for treatment of ME/CFS is based on the notion that there is no underlying organic illness, just unhelpful illness beliefs that lead people to remain sedentary and become deconditioned. This approach was outlined in 1989 in a seminal article co-authored by Sir Simon Wessely and Professor Trudie Chalder, among others. Professor Sharpe and the rest of the CBT/GET cabal have routinely posited that this deconditioning, and nothing pathophysiological, is causing the symptoms.
It is only since the CBT/GET paradigm has been collapsing under its own absurdity and the PACE trial exposed as fatally flawed that Professor Sharpe and his colleagues are dialing down their previous claims. They are presumably eager to salvage at least a shred of scientific credibility. That Professor Sharpe now seems to be arguing that PACE was only targeting symptoms and that he has never argued against the existence of an underlying disease is ridiculous. He has once again moved the goalposts and is engaged in post-hoc reframing and reinterpretation of the PACE trial. It is unfortunate that The Guardian and its hapless correspondent have provided him with a platform for this dishonest and self-serving maneuver.