By David Tuller, DrPH
It is hard to know what to make of the news that a peer-reviewed journal has actually accepted a PACE-reunion paper from the three lead investigators—Professors Michael Sharpe, Trudie Chalder, and Peter White. Even more so for a paper titled–without irony, it seems–“Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis.” This surprising event occurred on October 1st, according to a notice on the website of King’s College London, Professor Chalder’s home base.
The full text has not yet been made available by the professors, as far as I can tell, and the Journal of General Internal Medicine hasn’t formally published the article yet.* {I have removed a sentence here. Details below.] So I can’t yet comment on the substance of the arguments they present to persuade readers at this late date that graded exercise therapy and their specialized version of cognitive behavior therapy are in fact “evidence based.” They definitely confront a tough challenge, since the UK’s most recent official assessment of PACE and related research has found the quality of the evidence for the main claims of effectiveness is either “very low” or merely “low.” *[I added UK to this sentence. Explanation below.] This scathing assessment emerged from an authoritative source—the National Institute for Health and Care Excellence, the agency charged with developing clinical guidelines.
In their new paper, do the professors attempt to refute these NICE findings, and if so, how? Just by insisting that the assessment is wrong and re-affirming the soundness of their own research? Given their long-standing prominence, that strategy worked for many years to deflect, discredit and/or squelching legitimate criticism, most of it from patients. Perhaps this time the professors will provide a robust case—but judging from the abstract, they won’t.
Here’s the abstract:
Chronic fatigue syndrome (CFS), sometimes referred to as myalgic encephalomyelitis (ME) and often as CFS/ME, is an illness characterized by disabling fatigue and other symptoms, typically worsened by activity. The main evidence-based treatments are rehabilitative in nature and include specific types of cognitive behavior therapy (CBT), and graded exercise therapy (GET). In this article we briefly review the evidence for their safety and effectiveness and propose that much of the controversy about them arises from misunderstandings about their nature and delivery. In particular, we emphasize that successful rehabilitation from CFS/ME does not indicate that the illness is not real. We recommend that rehabilitative treatment always be preceded by a thorough clinical assessment and delivered by appropriately trained therapists working in close collaboration with the patient. We conclude that properly applied rehabilitative treatments offer the best hope of safely improving fatigue and function for patients with CFS/ME. However, we also recognize the need for more research into the treatment of this neglected condition, especially for those most severely disabled by it.
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The abstract is revealing. First of all, note the decision to use CFS/ME throughout rather than acknowledge the term ME/CFS, which has been adopted by NICE and US agencies as well. This contrarian choice strikes me as petulant, defensive and unneccessary. Perhaps it represents the professors’ refusal to acknowledge that they have lost all control of the narrative–even naming rights to the disease. (To be clear, many patients dislike the composite names ME/CFS and CFS/ME, believe their continued use is harmful, and strongly prefer ME.)
Furthermore, it is inaccurate and unwarranted at this juncture to call GET and CBT “evidence-based.” It is true that there is more evidence about these treatments than any others. But the evidence does not demonstrates what the professors claim, as has been documented most recently by NICE. The Journal of General Internal Medicine should know better than to allow self-interested parties to mis-characterize the current status and stature of critical evidence in an article’s title and abstract.
It is also not the case that “the controversy about them [the interventions] arises from misunderstandings about their nature and delivery.” The controversy revolves around the fact that, for decades, the highest levels of the academic and medical establishments accepted nonsense as if it were impeccable research—even though first-year epidemiology students at Berkeley have no trouble identifying disqualifying flaws. To pretend this is all due to some unfortunate miscommunications is ridiculous—a desperation move.
In another problematic statement, the professors note: “In particular, we emphasize that successful rehabilitation from CFS/ME does not indicate that the illness is not real.” This declaration demonstrates their inability to respond to the actual objections about the methodological and ethical lapses that mar their research. They haven’t provided credible evidence that their interventions lead to “successful rehabilitation,” so this statement is essentially meaningless. Moreover, the assurance that the condition is “real” indicates that they continue to think patients object to the treatments mainly because of a prejudice against mental illness rather than because the research is bogus.
In short, this article appears to be an effort to massage the past and salvage reputations. The interventions were developed and presented as curative in nature based on the presumption that patients had no underlying pathology causing the prolonged symptoms. Instead, they were declared to be severely out of shape due to their unhelpful beliefs of having an organic disease that caused them to deteriorate after exertion.
Are these investigators still promoting this theory, which provided the rationale for their therapeutic approach? It doesn’t sound like it, although it’s hard to know from the abstract. Instead of acknowledging that clinical trials have failed to provide high-quality evidence supporting the theory and the interventions, they seem to be blaming other people for some “misunderstandings.” It is painful and sad to watch anyone engage in fruitless attempts to save face and escape public humiliation, much less eminent professors accustomed to being treated with deference and respect.
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*I deleted the following sentence, which was obviously unnecessary: “(Perhaps more renowned journals were not interested?)”
*I added UK to the sentence to distinguish the NICE document from the recent draft of another evidence review commissioned by the US Centers for Disease Control and Prevention.
Comments
15 responses to “PACE Authors Now Blame “Misunderstandings” for GET/CBT Criticisms”
It’s an attempt to save their reputations, they’ve never accepted it’s a real disease and we have long memories of how they have labelled us as having false illness beliefs, a fear of exercise and that we are deconditioned.
They’ve never accepted biomed research, they kept pushing a Psych led behavioural issue which they have now projected onto Long Covid. Words like Social Influence and Older Women are used in presentations, which mean Hysteria.
We see them, we have the receipts and they can’t hide from the fact they’ve gaslighted a vulnerable patient group and presented our illness as psychological in papers, the media, to insurance companies and the DWP.
We won’t let them present themselves as friend to people with M.E.
Why are journals accepting this kind of whitewashing attempt? Are their editors completely unaware of the background and the discounted research?
It is getting pathetic. I assume you have already written to the journal pointing this out.
Patients don’t ‘prefer ME over ME/CFS’, they prefer that their diagnosis is accurate. If they ME, diagnose them with it. If they don’t, don’t.
A disease named ME/CFS or CFS/ME doesn’t exist.
How can it be that Sharp (and Greco) in a 2020 article characterise ME/CFS as an “illness without disease“. On the other hand, here they writes “… that successful rehabilitation from CFS/ME does not indicate that the illness is not real.“
Not at disease, but still real?
“What we’ve got here is failure to communicate. Some men you just can’t reach” [1]
This paper demonstrates that there are some psychobabblers we just can’t reach. I recommend an all-expense-paid trip to the Graybar Hotel, where they will have lots of time for meditation and computer-based CBT.
[1] Cool Hand Luke (1967)
Totalmente de acuerdo con el articulo y los comentarios.
Muchas gracias David Tuller.
Muchas gracias a todos.
*Aqui una intervista a Simon Wessly
Al final habla de SFC y el Sindrome de la guerra del golfo. Para el un Sindrome post traumatico.
Interesante tambien su comentario sobre los pacientes de EM/CFS del hospital donde comienza a ‘interesarse” en la enfermedad
https://meassociation.org.uk/2017/02/transcript-of-jim-al-khalilis-interview-with-professor-sir-simon-wessely-the-life-scientific-bbc-radio-4-13-february-2017/
It’s way too late in the day for them to talk about ‘misunderstandings’ when, for decades, they’ve seemingly closed their ears to patients’ and advocates’ reports of harms. But I’d be SO interested to know what their “thorough clinical assessment” actually entails now, what clinical criteria they’re suggesting to differentiate those who are only ‘ill’ (albeit ‘real’-ly ill as a result of their thought processes and lack of exercise) from those who have debilitating disease that won’t respond to and is likely to be made worse by their super-dooper, (re-vamped?), collaborative, rehabilitative treatments. Because from this video -https://www.youtube.com/watch?v=DqDTAHUMnq4 – it looks to me like their only criteria might be that the patient hasn’t been given terminal prognosis.
By claiming their treatments are “rehabilitative”, they’ve given us a handle to refute their claims straightforwardly, . You don’t “rehabilitate” people who are still ill and whose illness has no treatment – who would ask a severe asthmatic to go jogging without any medication?
In fact the term “rehabilitate” goes to the heart of it. They don’t believe PwME are ill; their treatments are entirely based on the idea of false illness beliefs. The new NICE guideline rejects that view.
I wish there was a Like button, for the post by Mark Harper above: “You don’t “rehabilitate” people who are still ill and whose illness has no treatment”. Yes, exactly. That’s a concept the PACE team et al are completely unable to grasp. That’s why their ‘treatments’ have done so much harm.
I have now lost my faith in the Medical Profession. If doctors do NOT KNOW WHAT TESTS to use to diagnose M.E… REAL M.E. then God help us all… and ESPECIALLY the new cases coming forward who are already being gaslighted as NOT being injured by a NEW PANDEMIC VIRUS/VIRUSES. After 66 years, from the Royal Free outbreak, medical science, en masse, has stood still, whilst very many have lost their health and their lives. I spent a few days in a hospital, not of my choosing, and it has nearly broken me, because of ignorance and lack of care. I am still waiting to be prescribed a suitable antibiotic for my problem, but communications are erratic and I still wait. Fortunately, I am a very well balanced person… FORTYFOUR YEARS of this stupidity, I have learnt to be.
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“In particular, we emphasize that successful rehabilitation from CFS/ME does not indicate that the illness is not real.”
This bit is trying to imply something that is not supported by the experimental evidence, namely that effective treatments for CFS/ME exist. Some of the experimental data suggests that CBT effectiveness for CFS/ME lies somewhere between doesn’t do much good and actively harmful (worse than no treatment).
So, sure, that some people get better (possibly in spite of treatment, rather than because of it) that does not imply the condition isn’t real.
But, more seriously, if a particular theory predicts that patients will get better with a particular treatment, and the experimental evidence is that the treatment doesn’t do much good, that’s experimental evidence that the theory is wrong.
So the quoted sentence has it the wrong way round – the lack (on average) of successful treatment is evidence that the condition is something other than what the CBT therapists think it is.
I am SO very angry about this. The whole purpose of a medical trial is to find out whether something works or not, and when it doesn’t, not to gaslight the world into believing it has.
I am seriously close to withdrawing from the Trial and asking for my data to be removed. I was leaving it for posterity, on the assumption they weren’t going to be carrying on with their spurious arguments based on a Trial that has had serious questions raised which fundamentally flawed the whole procedure. But if they’re going to continue to gaslight us, that’s a big NO from me.
Mind you, given I sent them an FOI request and got crickets back about my data – I’d be not remotely confident that they would be (a) able or (b) willing to do so.
Even so. I’m sufficiently annoyed by their lack of professionality and putting their own career aspirations ahead of industry standard (never mind best) practice that I’m seriously considering it.
On the issue of CFS/ME – my personal view is that this is a step forwards. I distinctly remember being told at the King’s PACE Trial that ME didn’t exist and it was really CFS. I was pulled up for saying ME quite a few times.
On the issue of illness vs. disease – my personal view is that this has not changed. I distinctly remember being told my ‘potential’ CFS (I’m not sure I’ve ever had a formal diagnosis, I think this was the best I got on paper from the NHS. That was back in 2007 when I was still working part time albeit fewer hours as the Trial progressed (CBT arm) and since 2013 I’ve been severe, although these days under Lincolnshire ME/CFS Unit I’m managing to stagger around the house and use a powerchair, but I digress…) was DEFINITELY REAL. (I wasn’t sure, whether I was just being a bit feeble and needed to get a grip). They said it was real, it was an illness, it was physical, I didn’t have mental health issues but it was not a disease. At this distance of time I can’t remember exactly how they distinguished between the two or why. BUT I do recognise that language being used back then in 2007, so it’s consistent that they’re distinguishing between the two.
Now that the PACE authors are back in business and obviously not retired, what is their current excuse for not releasing the rest of the requested trial data?
I speculate that a close examination of the raw data will reveal massive harms that have been covered up. That is the real reason they spent a quarter-million pounds to hide the data and continue to fight tooth-and-nail against releasing more.