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Snippets from White P et al. "Eight major errors in the review process and interpretation of the evidence in the NICE guideline [...]" [for ME/CFS]
- Thread starter Pustekuchen
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Simbindi
Senior Member (Voting Rights)
No. I just copied the picture of the 1etter from the tweet thread so forum members cou1d view it easi1y.
rvallee
Senior Member (Voting Rights)
It frankly doesn't need that much scrutiny when it's so openly corrupt and easy to find. One problem is that this particular conflict of interest isn't usually considered because of the biopsychosocial exemption where they can do whatever the F they want.
But that so many of the main signatories to this obviously corrupt attempt have such deep financial conflicts of interest that directly relate to this is beyond disqualifying, it's as nakedly corrupt as anything the tobacco industry did to push their lies.
Katy B on Twitter said:
Below this thread are responses with the Unum pages of the most prominent signatories to their sales pitch.
That's Sharpe, White, Wessely and Fink with their own pages on a major medical insurer where their role is literally to make them money by denying cases on the basis of their pseudoscience, while White IIRC was the chief medical officer.
You can easily add Sharpe's relatively recent talk to a major insurer about Long Covid where he was peddling exactly the same thing. Incredibly corrupt.
Ravn
Senior Member (Voting Rights)
Been scratching my head trying to work out what is really motivating this rehash of zombie arguments.
The NICE changes don't pose any threat to your ordinary health professional or therapist who just wants to help patients as best they can and make a living doing so. Some slight updating of their skills - from curative to supportive CBT and from GET to Pacing plus get the hang of PEM - and they're all set to keep on practicing (ok, apart from the LP folks).
That leaves at least four other possibilities, not mutually exclusive:
1) They're all committed LP disciples.
2) They're all afflicted by mass hysteria.
3) Their egos are injured.
4) Insurance companies and/or other interested parties are using them as a front à la tobacco industry.
Absolutely no idea what to do about any of it.
The NICE changes don't pose any threat to your ordinary health professional or therapist who just wants to help patients as best they can and make a living doing so. Some slight updating of their skills - from curative to supportive CBT and from GET to Pacing plus get the hang of PEM - and they're all set to keep on practicing (ok, apart from the LP folks).
That leaves at least four other possibilities, not mutually exclusive:
1) They're all committed LP disciples.
2) They're all afflicted by mass hysteria.
3) Their egos are injured.
4) Insurance companies and/or other interested parties are using them as a front à la tobacco industry.
Absolutely no idea what to do about any of it.
Jonathan Edwards
Senior Member (Voting Rights)
My guess is that this is about maintaining the credibility of the psychotherapy industry - a very big industry - and specifically in non-UK European countries. Although most of the signatories are UK a significant number are from northwest Europe. I think the hope is that if NICE-equivalent organisations in these countries can be persuaded to reject the NICE position then NICE will become isolated and no longer control opinion.
I can see a problem for psychotherapists if they justify their role with academic work done in the UK and then see the UK academic establishment throw that in the bin.
The Cochrane people are only too pleased to pile in because their noses are just as much out of joint for being told their evidence evaluation industry is a scam too. But I doubt they would have go White to write this. I suspect it is more a Europe thing.
I think there is an additional explanation - they really do believe they are right.
When you have spent 30+ years
- seeing patients through the filter of 'CFS is fatigue caused by anxiety about exercise leading to deconditioning' ie that CFS is psychosomatic,
- and psychosomatic symptoms can be treated in the same way as phobias with gradual exposure to the feared thing, in this case exercise, using CBT
- combined with the assumption that subjective questionnaire data is valid and reliable,
- and you surround yourself with like minded colleagues including running your own professional organisations and reviewing each other's papers and awarding each other professorships, research funding and prizes,
I can see that you can end up totally convinced you are not only right, but have a duty to fight to ensure your hypothesis remains the dominant paradigm.
Combine this with the assumption, apparent in some of their writing, that people with psychosomatic symptoms are flawed, inferior, unworthy of respect, malingerers who have conscious or unconscious motivation of secondary gains from being ill, and who are in all ways 'other', and it becomes possible to rationalise any objections to research and its conclusions as irrational and hostile and coming from people who are anti psychiatry and won't accept they have a psychosomatic illness.
Edit:
I've changed the wording of this post slightly to focus on the words and actions of the BPS proponents rather than implying any assumptions about their character.
When you have spent 30+ years
- seeing patients through the filter of 'CFS is fatigue caused by anxiety about exercise leading to deconditioning' ie that CFS is psychosomatic,
- and psychosomatic symptoms can be treated in the same way as phobias with gradual exposure to the feared thing, in this case exercise, using CBT
- combined with the assumption that subjective questionnaire data is valid and reliable,
- and you surround yourself with like minded colleagues including running your own professional organisations and reviewing each other's papers and awarding each other professorships, research funding and prizes,
I can see that you can end up totally convinced you are not only right, but have a duty to fight to ensure your hypothesis remains the dominant paradigm.
Combine this with the assumption, apparent in some of their writing, that people with psychosomatic symptoms are flawed, inferior, unworthy of respect, malingerers who have conscious or unconscious motivation of secondary gains from being ill, and who are in all ways 'other', and it becomes possible to rationalise any objections to research and its conclusions as irrational and hostile and coming from people who are anti psychiatry and won't accept they have a psychosomatic illness.
Edit:
I've changed the wording of this post slightly to focus on the words and actions of the BPS proponents rather than implying any assumptions about their character.
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Jonathan Edwards
Senior Member (Voting Rights)
Are you straying into the quagmire of psychology here, Trish?
A long time ago I came to the conclusion that if people didn't think straight there was no way I was going to be able to work out what went on in their heads. I have had a suspicion that the only people who would think they might know would be other people who do not think straight!
I would like to add one more. The methodologies used in this stuff are a kludge of many parts, all thrown together because they increase the possibility of a significant result supporting their hypotheses. They have been doing this for decades. They have been teaching and promoting this. They are branded with these methodologies. If they suddenly admit they are wrong then decades of research is now in question. Their reputations are in question. Their income is in question. Their morality is in question. Knighthoods and other accolades might be in question.
They have been doing it so long, for the most part, that everything may collapse for them if they make an about face, especially since big insurance will turn on them too. If not in reality then at least in their concerns about outcomes.
They are trapped by their own history of "success". They are desperate.
Aside from the one example in CFS research of deliberately using SD on SF36PF data I consider this probably accurate here. All the possibilities mentioned here are just that. We can show what is wrong, and where there is an evidentiary trail we can show why, but all other cases on why are no better than hypotheses, and different individuals may have different mixes of reasons, and probably some we have not thought of. That does not alter the damage done to patients around the world though, nor the various biases. The harm is real.
Well, they are quite prepared to write about us as mentally flawed with an irrational fear of exercise and unable to accept that we have a mental illness.
Two can play at that game. I think it possible that they are unable to understand the unscientific nature of their enterprise, and unable to accept that they have built their careers on their own, not my, false beliefs.
Edit: I have edited this to remove any suggestion about others' intellectual capacity.
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Jonathan Edwards
Senior Member (Voting Rights)
- Yes, indeed, but as I learned when I played Monopoly with my cousins and croquet as an undergraduate it is very easy to underestimate just how nasty some people are!
True, and actually think the explanation I have hypothesised for them clinging so tenaciously to their beliefs is the kindest - it assumes they are well meaning but misguided.
I actually think it's much more straightforward. They know they are wrong, but for financial and career reasons refuse to admit it.
I actually think it's much more straightforward. They know they are wrong, but for financial and career reasons refuse to admit it.
cassava7
Senior Member (Voting Rights)
It is hard to give them the benefit of doubt given their shenanigans - refusing to release data from a publicly funded trial, molding results to their wishes by downgrading the definition of recovery and dropping out actimetry, publishing objective outcomes separately, and so forth. This has been ongoing for decades, with the most recent occurrence being spinning the null results of GETSET follow-up as positive until they were forced to issue a correction (courtesy of David Tuller).
Had they been well meaning, they would have recognized that GET and CBT are not the answers based on their data, yet they have been doing their damnedest to spread these therapies since the beginning of their careers.
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Art Vandelay
Senior Member (Voting Rights)
I agree. Admitting they were wrong means they also admit to being 'patient-hating charlatans'.
I agree with all of the above and find it highly entertaining and (probably) informative (you judge - my suggestion may be a hash!)
Ignore em but have a go at anyone who makes a public decision based on their approach. E.g. if you're a politician then following this bunch leaves you vulnerable to the charge:
*"The results of the 6-minute walk test showed that ME/CFS patients remained ill enough to be on the waiting list for a lung transplant (Vink, 2016).2
https://journals.sagepub.com/doi/10.1177/1359105317703785
Ignore em but have a go at anyone who makes a public decision based on their approach. E.g. if you're a politician then following this bunch leaves you vulnerable to the charge:
- that you are funding treatments rejected by NICE - that they don't work - Vink highlighted that those labelled as "recovered", in the PACE trial, would qualify to be on a waiting list for a lung transplant --- is that a "treatment" which should be funded via public money/my tax? Basically Jonathan's point i.e. why they're running this campaign - they'll lose their (lucrative) income stream!
- it is offensive to those who are ill - particularly women, and adolescents, who are more likely to get ME/CFS --- if your looking to get elected, then that surely doesn't seem to be a way to maximise the vote? OK you have to convince the politician that the great and the good (trying to help and all that) are talking nonsense - difficult; or at least persuade them (politicians) that it's electorally unwise to support them!
*"The results of the 6-minute walk test showed that ME/CFS patients remained ill enough to be on the waiting list for a lung transplant (Vink, 2016).2
https://journals.sagepub.com/doi/10.1177/1359105317703785
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I've got one simple question in response. After all they've done and how very wrong they've proven to be, would you trust them to treat you in any capacity or trust any paper they publish? Is an open question to everyone posting here btw.
livinglighter
Senior Member (Voting Rights)
The article probably serves to coach its intended readers into continuing the practice of treating ME/CFS as a non-organic illness. I think it would do more harm than good if good ME researchers fail to respond.
From my understanding, within neurology, CFS/ME has pretty much always been considered a conversion disorder which FND now wants to replace.
Even before the new guideline, I came across CFS/ME clinic patient criteria, saying the primary symptom must be fatigue.
Not sure how they even get away with this. Fatigue is a common symptom in many other physical conditions, including head/brain injury as well.
They've actually patented them too -- so they sell these as treatments [GET & CBT] to the NHS etc.
Really just (poorly) rehashing arguments above re vested interests-
I think we might reflect that those who tell it as it is, like @Brian Hughes a tenured professor, are more secure - not finically impacted by their analysis. If so then that's great i.e. independent voices/system is working.
It would be interesting to know if those peddling dodgy "treatments" are financially dependent on sticking to that script?
Yea seems to be common practice i.e. fund those who undermine your opponents --- folks annoyed by the premature death of their family members, friends --- folks annoyed about their loved one's health (ME/CFS) and being scammed by health professionals peddling ineffective treatments ---
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rvallee
Senior Member (Voting Rights)
And the millions of lives sacrificed to the "what if the conversion disorder is the most important idea in medicine?" belief system. Just that, a what if just as hollow as the philosopher's stone: pure magical thinking.
This is by a very wide margin the biggest scandal in the history of medicine that is explicitly the fault of experts. Because it's the same mistake going back a full century, all the way to Freud, every disease, every patient dismissed using this paradigm was a victim of what is essentially a fanatical belief system.
In the end I think it's why most of medicine is just as stubborn. It's the knowledge that the button marked "if you press this a large nuclear bomb will kill millions" they thought was a joke and smashed repeatedly was not actually a joke. It's too much, this is about more than egos, it's about the sacrifice of millions of lives that also severely impaired the progress of medical science.
As a result of this paradigm, medicine basically still knows nothing about the most common medical issues, has no theory of illness, how symptoms work and their physiology. The exclusive focus has been on pushing the boundaries, exploring away, while basically neglecting what's right at home. We can rewrite people's genome to cure some cancers but have not produced a single bit of useful knowledge about pain that isn't as reliable as a magic 8-ball.
It also means that medicine is fully capable of endlessly believing in pseudoscience, which essentially makes all medical knowledge suspect, since where it counts, when a patient is in a consult with a physician, effective scientifically valid treatments are on the same level as yoga for your fatigue, or whatever. This is devastating for the credibility of the profession, as its entire credibility is supposed to be science.
This is way bigger than this sorry group of zealots. Essentially the whole of medicine is unable to swallow the pill and would rather pretend it's not happening, which is the only reason it happened at all. There's no putting the paste back in the tube, it's been generations and the harm is irreparable. It runs too deep and for most people it's unbelievable because they can't imagine this level of failure, it's so excessive that there has been nothing like it in decades, if not centuries.