By David Tuller, DrPH
In a blistering take-down published on Tuesday, Guardian columnist George Monbiot indicted Professor Sir Simon Wessely, Professor Michael Sharpe and the rest of the GET/CBT ideological brigades for their decades-long promotion of discredited theories about and bogus research into the cluster of illnesses now being called ME/CFS. Those theories and research strategies reached their apotheosis, of course, in the fraudulent PACE trial.
And “fraudulent” is the right word for a study in which—unknown to readers–13% of participants had met the threshold for “recovery” on a key measure at baseline. Moreover, anyone who seriously argues that this bizarre anomaly is not fraudulent—as in deliberately deceptive–is a charlatan. (That’s not to say that PACE meets legal definitions of “fraud.” I’m not a lawyer so can’t speak to that. The trial certainly meets current definitions of research misconduct.) As I’ve said repeatedly, it’s a piece of crap.
The first sentence of Monbiot’s column calls the treatment of ME/CFS patients “the biggest medical scandal of the 21st century,” echoing the words of Carol Monaghan, a member of Parliament, about the PACE trial itself. But whether we’re talking about the trial or the overall treatment of patients, here my question about that “21st century” thing: Is it too early to call this biggest medical scandal of the third millennium?
Monbiot collided into Professor Sharpe, one of the lead investigators of the PACE trial, in a roundabout way. In 2021, Monbiot wrote a column about the wave of people experiencing prolonged symptoms after an acute bout of Covid-19. The following month, Professor Sharpe highlighted Monbiot’s column in a presentation at an insurance industry conference, suggesting that such public discussion of Long Covid was a key factor in generating similar reports from patients and perpetuating this world-wide phenomenon. In other words, Professor Sharpe was casting Monbiot as something of a Long Covid super-spreader while suggesting that Long Covid itself was essentially a form of global mass hysteria or pandemic-related anxiety, depression and PTSD. (In his insurance industry presentation, Professor Sharpe also highlighted the findings from the PACE trial as if they were actually meaningful and not the result of playing three-card monte with the data.)
That incident triggered Monbiot’s further interest in this cabal of “experts” and their claims about ME/CFS as well as Long Covid. And this much is clear to any neutral observer who reviews the facts: Like cult members and Trumpists, these GET/CBT fanatics are wedded to dogma. They cannot be reasoned with. They reject proper science. They practice “eminence-based medicine,” as my friend and colleague Brian Hughes, a psychology professor at the University of Galway, has written.
Monbiot’s column is a welcome rebuttal to decades of bad journalism as well as bad science. Journalists, like others, have been bamboozled by Sir Simon, Professor Sharpe and their sycophants at the Science Media Centre, a London propaganda mill for industry and other interests that poses as a neutral arbiter of debate. (Maybe on some issues they are a neutral arbiter; my experience with them is limited to their handling of this matter.) The SMC relentlessly promoted the self-deluded pooh-bahs behind the GET/CBT approach and orchestrated a smear campaign against patients objecting to the science. As a result, multiple news stories in prominent outlets portrayed these desperately ill people as a howling pack of demented, dangerous, and science-denying crazies. (In a memoir, longtime SMC head Fiona Fox actually compared patients who challenged this awful science to Nazis.)
In his piece, Monbiot links to a prime example of this journalism malfeasance: a laughable “special report” from Kate Kelland, a former Reuters correspondent in London. In the article, Kelland hagiographed Professor Sharpe as a scientific martyr hounded out of the ME field by mean tweets, but she provided no substantive discussion of the PACE trial’s unacceptable methodological flaws. She portrayed me as a sort of Pied Piper for deluded ME/CFS patients, scooping up their cash as I lead them merrily away from the therapies that could cure them.
It should be noted that Kelland was a bestie of the SMC. In 2012, she wrote a glowing testimonial for the center’s tenth anniversary booklet. In the essay, Kelland indicated that she trusted experts selected by the SMC more than she would trust experts she herself had identified and found. In other words, she essentially outsourced to the SMC much or all of the thinking process she should have devoted to assessing whether her sources were or were not credible. In the case of ME/CFS, she made a spectacularly stupid and incompetent choice.
Kelland’s piece has had an impact—it has been cited a number of times in the medical literature as “evidence” of the purported harassment of scientists. In other words, the very existence of the article somehow retroactively proves the harassment claims. It is refreshing to see Monbiot cite this piece instead as an example of where journalism has gone wrong in this field. Luckily for me, however, the article appeared right before a Berkeley crowdfunding month. Kelland’s decision to lavish so much attention on me in her attempt to discredit my work was really an enormous compliment–a testament to the impact I’d already had in damaging the reputations of Professor Sharpe and his colleagues. It certainly boosted Berkeley’s crowdfunding prospects in the subsequent campaign. (Thanks again, Kate!)
It is, as Monbiot notes, a huge scandal that the entire UK academic and medical establishment accepted the anti-scientific crap purveyed by the likes of Professor Sharpe and Sir Simon. The entire UK academic and medical establishment accepted the fraudulent PACE trial as a terrific piece of research. How could this have happened? How could deference to authority be so extreme as to lead seemingly smart people to defend research in which participants could be “recovered” on key measures at baseline? It’s an insane state of affairs, and has been for a very long time.
But Monbiot’s Guardian column marks a significant milestone in this extended saga. He deserves enormous thanks for taking this on; let’s hope there’s more to come. This seemingly interminable ‘reign of error,’ which has brought so much misery to millions of patients, needs to come to an end.
Great piece by George, he gave further details in an X/Twitter thread.
I’d love to see an exposé on TV of the history of M.E, which also highlights Sir Simon’s darker failures, such as;
The young M.E patient forced into a swimming pool to see if they’d be forced to swim to save themselves.
His involvement in Gulf War Syndrome, as mass hysteria… Camelford Water Disaster Poisoning as mass hysteria, 9/11 illnesses as … you guessed it, mass hysteria and the schoolgirl poisonings as… mass hysteria. All of which today, have been found to have been caused by real things.
If ever there was a book Sir Simon could write, it would be on failing upwards.
Enormous thanks indeed to George for his excellent opinion piece. I wonder if he’s aware of how MUS and FND fit into the same picture and the harm being caused in relation to them?
“I compare it with a lie, which like to a snowball, the longer it is rolled the greater it becomes.”
― Martin Luther
“Oh, what a tangled web we weave, when first we practice to deceive!”
(Sir Walter Scott, 1808)
An unethical subset of payers of disability income, I think starting in the US, set out after the Lake Tahoe cluster 40ish years ago to deny and trivialize what became “Chronic Fatigue Syndrome” (that name, and the emphasis on the word “fatigue”, were carefully chosen to trivialize). They didn’t want to pay lifetime income claims for CFS.
They joined forces with this crew in the UK. In fact, one of the few times this “deny and trivialize” effort showed its face was helping fund the PACE disinformation, which wrote into the peer reviewed medical literature cover for payers of disability income to deny million dollar lifetime disability claims because a thousand dollar intervention (GET/CBT) could solve the problem.
But here’s the thing. Along the way, the number of people truly disabled by ME/”CFS” in Europe and the western hemisphere grew to (estimate) 5 million, which at (estimate) a million dollars each for lifetime income is (estimate) 5 trillion dollars. The hole is so deep they can’t get out. If a biomarker were accepted tomorrow, every private payer of disability income in Europe and the west would be bankrupted by their share of that US$5 trillion.
Do you understand why it’s so hard to work on biomarkers for ME/”CFS” or Long Covid? Besides regulatory capture at CDC and NIH which goes back decades, if I had this $5 trillion exposure and I saw RECOVER starting up, I’d get some volunteers in there very skilled at guiding investment away from biomarkers and treatments.
Oh, and Covid added another (again, estimate) 5 million people, so the hole is $10 trillion deep, not just 5.
I think the only way out of this for society (and the economies of a lot of countries) is to find the actual physical mechanisms of ME/”CFS” and a large fraction of Long Covid. I think to do that, we need to get the psychologizers off the playing field.
It would be most amusing if time proved my conjecture that PEM/PESE is progressive (autoimmune?) destruction of the myoglobin (muscle) and neuroglobin (some neurons), which destruction can only occur when the globin’s oxygen binding site is empty (ie exertion has occurred). Destroying the easy path for oxygen into those cell types across the body would progressively reduce the energy ceiling. Having oxygen in the blood, but difficulty getting it into the cells and used, has been reported in several papers over the last few years.
Oh, this retired computer designer who got to this conjecture looking for “decoupling capacitors” in the body is certainly wrong. We need real researchers on this. And they need to be tasked to get results, allowed to blaspheme, and protected from Semmelweis’ outcome.
This article is what I’ve been waiting to see like thousands of others with ME. A big thank you to George for exposing the truth at last and justifying all ME sufferers who are so ill.
Let’s hope Paul Brand gets hold of this story for the Tonight programme.
Have you heard of Dr John Gerrard in Australia saying today that we should stop using the term long covid as it’s harmful, causing patients to be hypervigilant and that prolongs their illness. Dr Gerrard is the chief medical officer for Queensland
Like Anne, if you can find the time I would love your take on this John Gerrard and his astounding numbers (3% symptoms for people with a prior covid diagnosis vs 4.1% for people without such a diagnosis) which seem to contradict many of the papers out there.
But this surely isn’t just about ME and long covid, is it? I’d suggest that one reason why the ME project is so important for the people mentioned by George is that it has served as the blueprint for something much, much bigger that extends way past post-viral illness – the rollout of the same management strategy for all medically unexplained symptoms (MUS) no matter what the specialty, no matter what the cause (see -https://www.sciencedirect.com/science/article/abs/pii/S0163834397803155?via%3Dihub and -https://www.youtube.com/watch?v=DqDTAHUMnq4 ).
This larger MUS project has been presented as a means by which healthcare systems can save lots of money – £billions it seems when it comes to the UK, with a 2011 estimate suggesting that £7.82 in savings could be made for every £1 put into a targeted programme (with most of those savings going to the NHS). For more cost vs return estimates see here -https://eprints.lse.ac.uk/29953/1/Mental_health_promotion_and_mental_illness_prevention%28author%29.pdf . And then there was the 2012 letter (see -https://www.nationalhealthexecutive.com/News/addressing-mental-health-underspend-could-cut-physical-health-costs) that it seems was sent to Clinical Commissioning Groups (CCGs) and the UK’s Health Secretary at the time, its current Chancellor of the Exchequer, that was based on a report from the LSE Centre for Economic Performance (-https://cep.lse.ac.uk/pubs/download/special/cepsp26.pdf) that argued that providing MUS patients with psychological therapy would generate physical healthcare savings that would outstrip the amount spent on that therapy. An apparent win-win then for the NHS but was the evidence-base for this ever sound? I sense that didn’t matter much as the MUS offensive gained ground and doctors and healthcare commissioners up and down the country were taught that MUS was a problem that had to be addressed -https://bjgp.org/content/67/656/106.
If the BPS management plan for ME is ever exposed as flawed then perhaps there’s a good chance that the rest of the MUS project might come crashing down too (including the FND project that has been presented along very similar or identical health-savings lines e.g. -https://petition.parliament.uk/archived/petitions/229614). But NICE appears to have exposed just that so are we now watching a monumental battle for the survival of the whole MUS/FND shebang play out? It looks that way to me. Reading this paper -https://jnnp.bmj.com/content/94/12/1056 – it’s easy to imagine a BPS camp that’s dogged with despair, and the long list of authors suggests to me a metaphorical call to arms for anyone it could muster (or MUSter maybe?) – MUS- and FND-ers as well as the ME old guard.
But this is no time for rejoicing. UK patients with medically unexplained symptoms, (whether that be ME, Long Covid, other MUS or supposed FND), are continuing to suffer the most appalling harms across the NHS because this MUS money-saving strategy seems to have been embraced without question by doctors, healthcare commissioners and the powers that be. There’s no evidence, that I can see, that harms were ever monitored. To my mind, this is a much bigger medical scandal about the destruction of good diagnostic medicine and it must be laid bare. I’ve no doubt that ME is at the heart of it, and long covid is now too, but the MUS project reaches much further and affects millions more. I know from bitter experience, that it could, at any time, harm your friends, your family, the people you depend on or the people who depend on you – we’re all at risk from it I think, nobody is immune.
We’ve been waiting for this to happen; I hope it has now happened: calling out the liars for helping governments save money (because otherwise what has this whole psychologizing been about?).
I just hope this one sticks. There have been prior attempts, from Osler’s Web on, to ask why sick patients are being called hysterical – none have stuck. The additional Long Covid cohort may have finally been the tipping point.
Or is it all going to be covered with something black again and vanish?
The BEST solution, of course, is to find cause, treatment, and cure – much as the discovery that H. pylori was the cause of most stomach ulcers has revolutionized their treatment, after huge attempts to ridicule the researchers.
Thanks for the report, David.
In my experience, if you make a complaint about NHS care, and flag up suffering and harms caused by faulty medical thinking, you’re treated with contempt. It seems that the NHS is failing to monitor MUS harms itself and ignores complaints that would highlight the appalling level of harm that this money-saving construct is almost certainly doing to so very many patients. It appears happy to tell patients in terrible pain to practice mindfulness in some quiet corner or to get them to expend time, energy and money on trips to physios who I imagine haven’t the foggiest idea about how to treat their problems but have to pretend that they do. It’s little surprise then that the UK public appears to be getting sicker -https://www.resolutionfoundation.org/press-releases/britain-has-a-bigger-but-sicker-workforce-than-previously-thought/ . If the UK government wants to try to tackle economic inactivity, perhaps monitoring misdiagnosis delays and harms due to MUS mislabelling would be a very good place to start.