NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

The problem is that the system in places serves doctors and the establishment, not patients.

It might be well and proper according to the rules but that means these rules make it hard for patients to defend their interests.

The pro-CBT/GET people that applied almost certainly all have a bias or COI. That is why they applied. In contrast, the applicants that favor a biomedical approach are mostly just interested in preventing harm and sparing patients from months of useless and potentially damaging treatment. This is going to be a task similar to convincing the PACE authors that their conclusions are incorrect.

Maybe Ms Monaghan can help shine a light on this dysfunctional situation.
 
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Comment from Colin Barton in visitor posts on MEA facebook page this evening

"It will be fortunate if we still have NICE guidelines at this rate as there is very little that is evidence based apart from specialist CBT (Psychology) and specialist GET (physiotherapy). The existence of the guidelines whether one agrees entirely with the content or not has mainstreamed the illness and enabled thousands with strictly defined CFS/ME to be diagnosed and managed and treated to some degree often leading to significant improvements."

Again with the notion that the guideline cant possibly say "there is no good treatment, so just care for them with compassion & support"

ETA ' and shut up complaining you naughty naughty patients!'
 
Jonathan Edwards said:
The problem as I see it is that it is right and proper that there should be some rules about who is eligible based on a common sense approach to expertise and yet this seems not to have worked in this context. Since there was a recognised problem with involving psychiatrists it looks as if psychiatrists were not invited. So there had to be invitations to physicians dealing with ME, since they at least would have first hand experience. And political correctness requires that other health care professions were represented. This of course may not be strictly rational, but inclusivity is the flavour of the era. It would have seemed logical to me to include some physicians from other specialities, as more disinterested, but goodness knows who would have volunteered.

With that remit I suspect they had hardly any applicants that fitted the requirements apart from lay members and maybe a few therapists. Clearly they had to re-advertise. I can imagine that hardly any physicians initially applied. In that context if a PACE author applies, on what grounds do you make them ineligible? Doing research in an area is not evidence of a biased view. And the quality of PACE is something that this committee has to decide, not something that is established fact a priori.

Charles and myself and probably the others are not NHS ME physicians. I am not even a registered medical practitioner now. We were ineligible, at least according to the rules as they stood.
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I appreciate what you say here. It just feels this is a perfect example of how to skew and screw an ostensibly rational system. Something is clearly wrong but I cannot home in on exactly what.
 
strategist said:
It might be well and proper according to the rules but that means these rules make it hard for patients to defend their interests.
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It might seem that way but it is actually quite hard to see how you get around it. If you ease the rules and allow other 'experts' in the the chairman can call for a dozen more psychiatrists, a couple of representatives of the department of work and pensions, a handful of leading lights from the private medicine sector... and whoever you like. Or they might invite private physicians who insist that cold baths before breakfast are the cure, or stem cell transplants or whatever.

The problem is that there is no Solomon to dispense infallible wisdom.
 
Jonathan Edwards said:
It might seem that way but it is actually quite hard to see how you get around it. If you ease the rules and allow other 'experts' in the the chairman can call for a dozen more psychiatrists, a couple of representatives of the department of work and pensions, a handful of leading lights from the private medicine sector... and whoever you like. Or they might invite private physicians who insist that cold baths before breakfast are the cure, or stem cell transplants or whatever.

The problem is that there is no Solomon to dispense infallible wisdom.
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Since the key issue is whether CBT/GET is effective and based on reliable evidence, they should invite experts in clinical trial design that have no connection to ME/CFS.

But we know how this would end, since no independent expert appears willing to defend PACE.
 
If I remember right, during the earlier steps of this review, it turned out that every patient organization was critical of PACE/CBT/GET.

Patient opposition is as pretty much as high as it could possibly go according to this metric. And yet it looks like there are some indicators that nothing will change.

A system that's fit for purpose would enable patients to have some influence. Not too much, but definitely enough so that widespread opposition to guidelines would lead to changes.
 
Is part of the problem that we have had GET/CBT in the guideline for over 10 years, so anyone running an ME/CFS service in the NHS is expected to base their practice on these treatments, and those who know they are ineffective don't take jobs in those clinics because they won't do what they consider harmful?

The logic of this is that if you only appoint NHS doctors and therapists with experience with the condition, you will only get those who follow the current guideline and have invested their careers in it and are not going to turn around and say, actually we've been harming patients, or, even worse, I, as a CBT or GET therapist, have no business treating ME at all.
 
Trish said:
Is part of the problem that we have had GET/CBT in the guideline for over 10 years, so anyone running an ME/CFS service in the NHS is expected to base their practice on these treatments, and those who know they are wrong don't take jobs in those clinics because they won't do what they consider harmful?
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To continue supporting CBT/GET, you must have an inability or unwillingness to take reports of harms seriously, and also an inability or unwillingness to see the various problems with the studies and associated claims.
 
strategist said:
Since the key issue is whether CBT/GET is effective and based on reliable evidence, they should invite experts in clinical trial design that have no connection to ME/CFS.

But we know how this would end, since no independent expert appears willing to defend PACE.
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The second sentence seems to be true at first glance -- see Professor Munafò's reply to @Graham's letter.
(edit: link to the reply )

But given his second response thanks to Graham's persistence...

https://www.s4me.info/threads/bristol-new-network-prof-munafo.5802/page-6#post-107738

...we could perhaps ask him now if he had any ideas "what strategies might be effective"? Or perhaps he could recommend a colleague? Or at least aks some PhD students to write a review on "Psychology in Crisis?

(Edited several times to correct diverse spelling and other errors, apologies)
 
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strategist said:
If I remember right, during the earlier steps of this review, it turned out that every patient organization was critical of PACE/CBT/GET.

Patient opposition is as pretty much as high as it could possibly go according to this metric. And yet it looks like there are some indicators that nothing will change.

A system that's fit for purpose would enable patients to have some influence. Not too much, but definitely enough so that widespread opposition to guidelines would lead to changes.
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I know you know this @strategist so this comment isnt directed at you, just using your words to illustrate that..
he entire problem for us (not just this NICE guideline, but everything), revolves around the fact that they have successfully convinced themselves & the medical establishment, that patient dissatisfaction with being told what the BPSers see as 'the truth' about their condition, is a symptom of the condition itself. - Patients are ill because their beliefs are 'unhelpful', and so naturally they are in furious opposition to NICE etc because they dont want to accept that their beliefs are faulty/unhelpful & be treated accordingly.

Thats how they've ruled for so long isnt it - because they've managed to construct a narrative where our opposition & rejection of deeply flawed research can be viewed as proof that it's correct & opposition to guidelines can be viewed as a strong reason NOT to change anything (except maybe some wording to make it a little more palatable to patients).

Edited = to remove an irrelevant & possibly misleading comment
 
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strategist said:
Patient opposition
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I sympathise but patient opposition is not reliable evidence or argument. Unless of course it IS underpinned by reliable evidence or argument which in this case it is but that needs to be proven to a suitable body of people selected prior to the assumption of proof. In general people do not seem to be that good at deciding what is good for them. They have persistently failed to persuade politicians to fund an adequate health service - probably because most think taxes just go into someone else's pocket. If patients decided what they should have we would still be pouring money into homeopathy. At some point the evidence needs to be scrutinised.
 
Jonathan Edwards said:
I sympathise but patient opposition is not reliable evidence or argument. Unless of course it IS underpinned by reliable evidence or argument which in this case it is but that needs to be proven to a suitable body of people selected prior to the assumption of proof. In general people do not seem to be that good at deciding what is good for them. They have persistently failed to persuade politicians to fund an adequate health service - probably because most think taxes just go into someone else's pocket. If patients decided what they should have we would still be pouring money into homeopathy. At some point the evidence needs to be scrutinised.
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There is a double standard here in that psychiatrists can invent whatever they want, including models that propose that patients are especially incapable of understanding their own condition, and patients then have to disprove it with no resource and ill health.
 
strategist said:
There is a double standard here in that psychiatrists can invent whatever they want, including models that propose that patients are especially incapable of understanding their own condition, and patients then have to disprove it with no resource and ill health.
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I agree. But then many patients psychiatrists deal with genuinely do not understand their own condition. Maybe none of us understand our own condition*. Maybe the real issue is that psychiatrists do not understand either but like to think they do.


* As part of my studies of the conscious mind I have come to the conclusion that humans differ from animals in that they have a much greater misunderstanding of their own nature.
 
I don't think this fight is about evidence anyway, it's about power. There is an enormous power disparity that enables PACE authors to misbehave in various ways (such outcome switching, never testing their treatments against adequate controls). It is this power disparity that causes so many problems. If they were under pressure to do good science, they would behave well and do their job as researchers.

They have so much power, they can decide the fate of millions of patients merely by making up a theory and continuing to insist it's true.
 
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Jonathan Edwards said:
It has to be about evidence. Otherwise you go with Colin Barton and say all we need is some guidelines, doesn't matter what's in them. And there is no means to shift the power structure other than evidence.
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By not being about evidence I mean that they clearly don't care about quality of evidence or trying to arrive at a coherent understanding of the illness. How can you use evidence to convince someone that doesn't care about it?

It would be good if it was about evidence, but the reality seems to be different.
 
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