FOI Documents relating to NICE response to the US IOM report on ME/CFS in 2015

Sly Saint said:
NOT a recent FOI but from 2015 following the IOM report; many familiar names, thought it might be of interest here.

https://www.whatdotheyknow.com/request/357691/response/883778/attach/2/FOI EH73066 Redacted documents for release.pdf
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Thanks. I don't remember seeing that before. These were the bits I found most interesting.

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Lucibee said:
From the documents, SW is more likely to be Sarah Willett.
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p27 Appendix to this meeting on p31.

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P37

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Jonathan Edwards said:
Reading the exchanges between people closely involved makes one realise just how disingenuous the suggestion was that the 2021 guideline committee had plucked a new disease out of thin air just to spoil the evidence.
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That was something my excerpts probably downplay - there were quite a lot about how changing views on how the condition is best diagnosed were likely to be important, with these comments being scattered through sections I found less interesting, but that others could be most interested in.
 
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Jonathan Edwards said:
Reading the exchanges between people closely involved makes one realise just how disingenuous the suggestion was that the 2021 guideline committee had plucked a new disease out of thin air just to spoil the evidence.
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It also suggests NICE knew that the criteria might need to be changed and that evidence would have to be downgraded if these new criteria were adopted, regardless of who sat on the committee.
 
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Jonathan Edwards said:
Reading the exchanges between people closely involved makes one realise just how disingenuous the suggestion was that the 2021 guideline committee had plucked a new disease out of thin air just to spoil the evidence.
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Where did this suggestion that NICE have invented a new condition (as repeated by TK in the docs) come from? I have only seen stuff like that from Sharpe, who is saying it for obvious reasons. Has anyone been convinced by this as opposed to merely stating it disingenuously, and why was this position advocated so strongly in the NHS E&I materials? It's quite a shocking thing to claim (eg about the committee and their process) especially if you expect people to listen to you after that.

There is such a gulf between what people say about the illness and what the illness actually is that I find myself not knowing how much of what they say is wholly disingenuous BS, and how much of it genuinely rests on a mistaken foundation/conception of the illness with additional self-serving BS on top of that. Perhaps there is no difference.

From these documents the disingenuousness is steeped through, but I don't understand what is animating much of it from certain quarters; perhaps I find it hard to fathom spending my career making life more difficult for sick people.

Edit: once you subtract the arguments of a very small group of people defending their own work with extremely weak arguments, what is left?
 
What surprises me is the offhand references to some patients claiming they are harmed by the treatments. Why did no one care enough to see if it was true? Many treatments cause harm to some people but the risks are examined and minimised and patients must be told about them. We feel like the dirt beneath their feet because that it how they treat us.

Some of the money wasted on useless trials could have been used to find out if any patients did get harmed but there was no interest in doing anything about it.

They are so in love with their theories they refuse to believe there are any flaws in them and they don't believe patients can be trusted to know their own disease so why trust them when doing so would cost you.
 
That Surveillance Management Catch-up of September 2015 is rather hard to evaluate. It seems short of context. Do we know what this is and whether it is an ad hoc group or permanent?
 
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Esther12 said:
Thanks. I don't remember seeing that before. These were the bits I found most interesting.

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p27 Appendix to this meeting on p31.

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P37

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It's pretty shocking to see a frank admission that there has been no progress in decades, no prospect of helping anyone or changing the situation any time soon, followed immediately by: "let's not do anything, though".

This is criminal neglect, knowing that people under your responsibility are suffering and being unwilling to do anything about it. Nothing surprising but the complete indifference to human life is still so monstrous when it's just laid bare like that. They truly don't give a damn about patients, can't even pretend to care.
 
Is it just me or do they sound confused about the underlying premise of GET/CBT being fear avoidance to deconditioning model. They say a couple times they don't know why people are rejecting GET/CBT because of this model, when they make no mention of fear avoidance in their guideline about it. Surely they know that's why GET/CBT is prescribed, that's the theory behind it, the whole point of it? If there is no fear avoidance model, there's no point in GET/CBT... Have i got that wrong? (There's every chance i might have... )
 
Jonathan Edwards said:
Reading the exchanges between people closely involved makes one realise just how disingenuous the suggestion was that the 2021 guideline committee had plucked a new disease out of thin air just to spoil the evidence.
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Agree. There is this section of NICE's review of the US Documents that states (page 32 in the pdf):

"Taken together these three reports may have important implications for the CFS/ME guideline. [...] The new criteria may affect the interpretation of all preceding evidence that may have used different inclusion criteria for study participants.

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