NICE ME/CFS guideline - draft published for consultation - 10th November 2020

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Nightsong said:
I've been listening to the video of the Michael Sharpe Swiss Re presentation on Long COVID, and there's a highly disconcerting exchange at the end (transcript and bolding mine):

MODERATOR: One last question before we move on to our next speaker is regarding the change in the NICE guidelines, and I'm wondering whether that has any impact on our ability to manage this patient group?

SHARPE: Gosh, well that's an interesting highly political moving target there. The NICE guidance - existing NICE guidance for chronic fatigue syndrome - ME - advocated rehabilitation in the form of CBT, graded exercise. The revision of the guidance, which has been very driven by, by patient groups who feel strongly about this, is - was going to be very different. That's been out to consultation. I know several Royal Colleges have pushed back very hard indeed on that, and it's being considered and that will come out in March. On the positive side, the [inaudible] post COVID NICE guidance is very sensible, very pragmatic and advocates rehabilitation. So I think there's lots to play out there. What will happen with the chronic fatigue - ME ones, what will happen with the NICE ones, but I think we just have to, have to have this rehabilitation because it's the only thing we've got apart from time.
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Thanks - where did you see that? On the page I saw his talk was unavailable. Has anyone backed up a copy of this?
 
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Nightsong said:
but I think we just have to, have to have this rehabilitation because it's the only thing we've got apart from time.
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So the truth comes out. Exactly what Sandford said at the RSM meeting chaired by Fiona Godlee some years back. We have to have rehabilitation because it is the only the we've got apart from time. We have to sell something to keep in business, we cannot just allow people to recover on their own!

This is a transparent statement of a man who completely misunderstands what the purpose of medicine is. It is not a commercial enterprise for selling health cures. Nor is it satisfying a putative desire for being looked after. It is to actually improve people's health.
 
Jonathan Edwards said:
So the truth comes out. Exactly what Sandford said at the RSM meeting chaired by Fiona Godlee some years back. We have to have rehabilitation because it is the only the we've got apart from time. We have to sell something to keep in business, we cannot just allow people to recover on their own!

This is a transparent statement of a man who completely misunderstands what the purpose of medicine is. It is not a commercial enterprise for selling health cures. Nor is it satisfying a putative desire for being looked after. It is to actually improve people's health.
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EDIT - redrafted (see @Jonathan Edwards comment below) Possibly slightly relevant i.e. in terms of incentives in medicine.

Friend mentioned that becoming a GP is the only opportunity to run your own business in the NHS

I think the Australian system separates the (financial) incentives by running emergency clinics/GP services for everyone - separating the (GP) rewards from the treatment.

Not good when the treatment options are linked to rewards!
 
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Nightsong said:
I know several Royal Colleges have pushed back very hard indeed on that, and it's being considered and that will come out in March.
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Could this be the reason for NICE pushing the guideline release date back from April to August? This delay was notified in March - is that what MS was referring to? Given the pressure these people can apply, including journal's publicly taking the blame for investigators' wrongdoings, can we be confident that NICE might not yet be pressured into rolling back from their draft guideline position? These people are so powerful, so deeply manipulative, so skilled at social engineering, and so good at normalising the outrageous, that I would assume nothing until it is all done. There are probably all manner of tweaks that could be engineered that could significantly dilute the good that is in the draft, and a few other changes that might smother what good that might be left. I do not trust the crafty bar stewards.
 
Barry said:
Could this be the reason for NICE pushing the guideline release date back from April to August? This delay was notified in March - is that what MS was referring to? Given the pressure these people can apply, including journal's publicly taking the blame for investigators' wrongdoings, can we be confident that NICE might not yet be pressured into rolling back from their draft guideline position? These people are so powerful, so deeply manipulative, so skilled at social engineering, and so good at normalising the outrageous, that I would assume nothing until it is all done. There are probably all manner of tweaks that could be engineered that could significantly dilute the good that is in the draft, and a few other changes that might smother what good that might be left. I do not trust the crafty bar stewards.
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"The ME Association was expecting NICE (The National Institute for Health and Care Excellence) to push back the publication date for the new ME/CFS clinical guideline. "
https://meassociation.org.uk/2021/0...cation-date-for-the-mecfs-clinical-guideline/
 
The NICE guideline on chronic primary pain (CPP) may provide some insight as to what might happen with the ME/CFS guideline.

NICE received a staggering number of comments to the draft guideline for CPP, but they were probably expecting so as they had planned a 8-month delay before the final release (August 2020 to April 2021). This is similar to the now extended, 10-month delay for the ME/CFS guideline, although the list of stakeholders is shorter than that of the CPP guideline. It is not impossible that stakeholders for the ME/CFS guideline may have provided just as many comments, especially if there is a significant pushback.

For both guidelines, the quality of evidence was mostly low to very low, and thus the recommendations largely took into account the committee's experiences. This led to a positive outcome for the ME/CFS guideline but not for the CPP one. The draft and the final releases of the CPP guideline did not differ much: both align with the general BPS approach to the clinical care of CPP, so there must not have been much pushback from clinicians. On the other hand, the ME/CFS guideline committee might have to take other clinicians' experiences into account, including feedback from Royal Colleges.

Though if the example of the CPP guideline holds for the ME/CFS one, we shouldn't see a significant overwrite of the latter, especially given that major changes to the recommendations (e.g. recommending GET again) would be a contradiction that would cast serious doubt over all of NICE's work on the guideline -- and its credibility as a regulator of medical care too --.

ETA: from @MSEsperanza's post:

 
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Andy said:
"The ME Association was expecting NICE (The National Institute for Health and Care Excellence) to push back the publication date for the new ME/CFS clinical guideline. "
https://meassociation.org.uk/2021/0...cation-date-for-the-mecfs-clinical-guideline/
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Yes I did see that Andy, and hope that is the reality of things. But I'm a cynic by nature, and presume nothing until the deal is done. There are a fair few times in my life where that has saved my bacon. Maybe partly also from my time in the RAF as an aircraft technician, when during my apprenticeship, every day for two years it was drummed into us: "Don't assume, Check!"

What are the chances, let's face it, that the BPS crowd are not thinking of every possible angle to undo the good in this NICE guideline draft - zilch! So the issue is whether they are creative and powerful enough to undo enough of the good in this draft to fit their own ends. I would never underestimate them, and what they might dream up.
 
Barry said:
What are the chances, let's face it, that the BPS crowd are not thinking of every possible angle to undo the good in this NICE guideline draft - zilch! So the issue is whether they are creative and powerful enough to undo enough of the good in this draft to fit their own ends. I would never underestimate them, and what they might dream up.
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I agree, but I've been trying to reassure myself that NICE and the NHS don't themselves have an interest in the BPS approaches. There's no point spending money on clinics and services that don't help, when patients could be managed via existing GP resources.

It's therefore in NICE's interest to be extremely sceptical about the vested interests within their midst who view difficult-to-treat chronic conditions as a cash cow, whether they make their money through designing services for patients or scooping up squillions in research funding. I'm just surprised it's taken so long to work out that they're being taken for a ride every bit as much as us.
 
Barry said:
Could this be the reason for NICE pushing the guideline release date back from April to August? This delay was notified in March - is that what MS was referring to? Given the pressure these people can apply, including journal's publicly taking the blame for investigators' wrongdoings, can we be confident that NICE might not yet be pressured into rolling back from their draft guideline position? These people are so powerful, so deeply manipulative, so skilled at social engineering, and so good at normalising the outrageous, that I would assume nothing until it is all done. There are probably all manner of tweaks that could be engineered that could significantly dilute the good that is in the draft, and a few other changes that might smother what good that might be left. I do not trust the crafty bar stewards.
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That's my assumption, the process is being politically manipulated. Whether it succeeds remains to be seen but I am certain this is the main reason for the delay.
 
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