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Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al
Peter T
Senior Member (Voting Rights)
To quote from Benita Kane on Bluesky cited by @Trish above:
“We hope it sends a strong message to those still pushing outdated dogma and non-evidence based opinions: It will NOT be tolerated by either the scientific or patient community.
It is these attitudes that have led to the dismissal and neglect of people with ME for decades and prevented the very progress needed to find effective treatments. We demand good quality research that can drive evidence-based treatments.”
Does this increasing number of critiques of Miller et al’s opinion piece represent a significant change, at least here in the UK?
When the PACE trial was first published, there was serious suggestions that researchers dissenting from the BPS doctrine of ME/CFS as sustained primarily by psychological factors would be taken to one side by senior academics and junior researchers persisting in this dissension would struggle to obtain advancement. This went undocumented except for Prof Crawley’s futile attempts attempts to undermine Dr Tuller’s (@dave30th ) relationship with his university. However would we have seen even ten years ago this level of response in the BMJ to an article by such BPS grandees.
“We hope it sends a strong message to those still pushing outdated dogma and non-evidence based opinions: It will NOT be tolerated by either the scientific or patient community.
It is these attitudes that have led to the dismissal and neglect of people with ME for decades and prevented the very progress needed to find effective treatments. We demand good quality research that can drive evidence-based treatments.”
Does this increasing number of critiques of Miller et al’s opinion piece represent a significant change, at least here in the UK?
When the PACE trial was first published, there was serious suggestions that researchers dissenting from the BPS doctrine of ME/CFS as sustained primarily by psychological factors would be taken to one side by senior academics and junior researchers persisting in this dissension would struggle to obtain advancement. This went undocumented except for Prof Crawley’s futile attempts attempts to undermine Dr Tuller’s (@dave30th ) relationship with his university. However would we have seen even ten years ago this level of response in the BMJ to an article by such BPS grandees.
No. Long Covid has really changed the equation. Many/most of the signers got into this issue because of that.
I suspect their actual reach is pretty small, but they do serve as an important record of wide dissent and opposition to the opinion piece at the time it was published. This is why it's great to see such a wide variety of responses.
That's especially useful for when the next BPS paper gets published and cites this junk opinion as evidence.
When their theories are fully rejected it's not something they can ever claim "oh we were just trying to help, no-one knew any better!"
Very good. Thank you for being willing to share your experience. I think spell out GET in words, as not all readers will be familiar with it.
Peter T
Senior Member (Voting Rights)
It reads well and is very clear. I don’t know though how the BMJ will react to a personal statement, though Garner has been pushing his personal statement at any and all opportunity.
rvallee
Senior Member (Voting Rights)
Most of the medical profession stand by them. It makes it easy for them to ignore it all.
They wouldn't otherwise. This is the key. They don't know the answer, no one does, but about 98-99% of their peers think they do, would willingly go into a screaming match against anyone who disagrees. Those are the social and cultural cues they are getting: awards, praise, funding, respect. It's only human nature to be fooled by this. In fact, it would be downright bizarre if they didn't. Humans respond to incentives. All the incentives align for them to believe in their own made-up BS.
Over time I blame them less and less. Their behavior is appalling, but they wouldn't behave this way if they didn't get all this recognition and positive reinforcement. It isn't just that the ideologues should be able to see through this, everyone in the profession should and is capable of it. But instead they all sing the praise of the emperor's wonderful magical robe.
Utsikt
Senior Member (Voting Rights)
I’ll never stop blaming them because they should know better. And they should listen to the patients that tell them they have got it all wrong.
I understand there are mechanisms that facilitate the behaviour that we observe, but I have a hard time seeing how that absolves them of both their accountability and responsibility.
rvallee
Senior Member (Voting Rights)
I'm mildly annoyed that no one has pointed out that the approach they are marketing has literally been the standard approach for 2 decades, and that despite a needed update to the NICE guideline, it is still. It hasn't just been tried, it is still the actual standard approach. Not a de facto informal model, it is the currently officially implemented model, regardless of the small bits of concession to reality.
They are literally proposing the current treatment model than one can read all over UK medical sources, including from the NHS. No one has pointed it out clearly enough, how insane it is to present the current way of doing things as some new never-before-tried idea when it's literally identical to the original construct made up by Wessely and his pals.
It would amount to seriously proposing that drugs should be illegal, because the current approach where drugs are sold freely and openly has failed.
But I don't have the brain power to write something formal.
They are literally proposing the current treatment model than one can read all over UK medical sources, including from the NHS. No one has pointed it out clearly enough, how insane it is to present the current way of doing things as some new never-before-tried idea when it's literally identical to the original construct made up by Wessely and his pals.
It would amount to seriously proposing that drugs should be illegal, because the current approach where drugs are sold freely and openly has failed.
But I don't have the brain power to write something formal.
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rvallee
Senior Member (Voting Rights)
It's one of those cases where since everyone is guilty, then it's impossible to assign specific blame to anyone.
It isn't just that "the" system has failed, it's literally every system under the medical and public health umbrella that has failed, big and small. Yes, they are selling a bunch of toxic harmful pseudoscience, but the profession keeps buying it, hell, keeps demanding more of it. Who's the real sucker here? The ones peddling toxic pseudoscience? Or the major institutions who keep demanding more of it, long after it's been revealed to be a bunch of total quackery?
Because ultimately the blame is with those institutions, which have rules that are supposed to prevent them from enabling this, but aren't applied because it's arbitrarily and retroactively been decided that it's not even a medical issue. In the end, the quacks will never find themselves in any legal trouble. Their legacy will be horrible, but that's on their conscience, and most of them will be dead by then anyway. The institutions, however, boy do they have a lot of legally liable negligence to account for.
Utsikt
Senior Member (Voting Rights)
Without further comparisons, it happened after WWII. Not everyone, for practical reasons, but people were held accountable for specific actions. And not just the killers in camps, co-operators were also punished, like those owning the printing shops that fulfilled orders to produce propaganda. So I don’t think it’s impossible to assign individual blame just because the system is also messed up.
Yann04
Senior Member (Voting Rights)
Yet also with world war two, there was near zero consequences to the medical professionals and psychiatrists who spearheaded Aktion T4 and it’s later variants (the genocide of disabled people). In fact many of these people, especially psychiatrists, continued long careers with many accolades. Only around ~20 people were ever convicted. Given the tens of thousands of people heavily involved and the systemic nature, the tiny number of convictions are probably more about politics and image than genuine punishment or reform.
The whole thing was majorly swept under the rug. And is still an afterthought if mentioned at all in history lessons and books. Even though it lead to 250000+ murders. And even though much of the techniques used in the holocaust (gas chambers etc), were first used at an industrial scale against disabled people. And on top of that, books, media, articles nearly always refer to it by its original nazi euphemism “forced euthanasia”, instead of mass murder or genocide.
Utsikt
Senior Member (Voting Rights)
There’s certainly a lot that could have been handled differently afterwards. My point was mostly that some people have been held accountable, so it’s not unreasonable to have an expectation or desire that others will as well in the aftermath of this just because the system is also completely broken. So some should, but not everyone will, be held accountable.
And of course they mention Maeve who died in 2021 before the new guideline was confirmed so under the old regime of ‘treatment’ , and they know that full well
Final draft, I have added a penultimate paragraph @rvallee will perhaps appreciate
'Furthermore, the so-called biopsychosocial approach is always presented as a new and cutting-edge approach to treating people with ME/CFS when it has been the dominant treatment paradigm in this country and elsewhere since the 90s and, in that time, its advocates failed to produce any good quality evidence that these approaches help people recover any significant degree of functioning. To present these approaches as exciting new science is, to borrow a phrase, serving old wine in new bottles.'
I'm going to send it off later when I have the spoons. Appreciate the feedback!
'Furthermore, the so-called biopsychosocial approach is always presented as a new and cutting-edge approach to treating people with ME/CFS when it has been the dominant treatment paradigm in this country and elsewhere since the 90s and, in that time, its advocates failed to produce any good quality evidence that these approaches help people recover any significant degree of functioning. To present these approaches as exciting new science is, to borrow a phrase, serving old wine in new bottles.'
I'm going to send it off later when I have the spoons. Appreciate the feedback!
Utsikt
Senior Member (Voting Rights)
Maybe avoid «always» and use «often» to avoid an easy counter-argument?
Perhaps «has continuously been presented as»?
Robert 1973
Senior Member (Voting Rights)
While I appreciate their support and intentions, and agree with much of the content, I’m not sure that I would have signed this letter. As others have articulated in other rapid responses, the fundamental error in the Miller article, and the whole BPS approach, is that it makes potentially harmful claims which are not supported by reliable evidence. It is therefore important to ensure that any claims made in criticism of the article are 100% accurate and supported by reliable evidence.
As has been pointed out repeatedly, the valid arguments against BPS therapies – the arguments which led to the NICE withdrawing its support for GET and PACE-type CBT – are independent of arguments about aetiology. Even when the physiological mechanisms of ME/CFS are understood, the best evidence that CBT and GET don’t work will be from the trials of CBT and GET.
From the Rapid Response:
I’ve not managed to keep up with all the developments in research, so please correct me if I’m wrong, but I’m not aware of any replicated studies which show that PEM is a measurable biological phenomenon.
I think this slightly misrepresents why NICE revised the Guideline. As far a as I recall, the primary reason for NICE withdrawing its recommendation of GET and CBT was because there was no reliable evidence that they are effective, as well as evidence of potential harm.
I’m sure that is true, but again I’m not sure we know enough about the pathophysiology to make that claim.
I’m not as knowledgeable about the science as many other on here but again I’m not sure these claims are currently supported by reliable data.
I don’t want to seem over critical but I think these issues are important. Overstating biomedical evidence gives false hope and can be harmful too. It also provides an opportunity for BPS advocates to undermine the credibility of valid criticisms, as SW has done so expertly for decades. Just as BPS research must be required to adhere to the same standards which are applied to other branches of medicine, so must critics of BPS research apply the same standards of scrutiny to biomedical research.
If any of the signatories are reading this comment, I hope they will receive it in the constructive spirit in which it is intended. I am grateful that so many more doctors and scientists are aware of the problems with BPS research, the harm it has caused, and the need to find biomedical answers.
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