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

NelliePledge said:
I was looking for info on mental capacity following discussion on another thread and discovered Fiona Finlay is heavily involved in this issue as chair of the Mental Capacity Forum https://www.scie.org.uk/mca/directory/forum
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I do not think that this is too worrying. Her role within end of life care must raise questions a regarding when her patients have or lose their mental capacity.
 
MEMarge said:
I do not think that this is too worrying. Her role within end of life care must raise questions a regarding when her patients have or lose their mental capacity.
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No I don’t see it as worrying either. hopefully it puts her in a good position to begin to understand the situation severe ME patients can find themselves in when they engage with the NHS.
 
Comment from Action for ME
The final version of the National Institute for Clinical Excellence (NICE)’s scope for its revised guideline on M.E./CFS was published on Tuesday 16 October, along with consultation comments and committee appointments. After reviewing the documents, we are pleased to see that NICE has addressed a number of the concerns raised by Action for M.E. during the consultation in July. This includes highlighting the fluctuating nature of M.E./CFS, and important information about post-exertional malaise.

Action for M.E.’s view is that the published scope offers a robust foundation on which the guideline can be developed.
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https://www.actionforme.org.uk/news/​nice-guideline-scope-and-committeeupdate-and-comment/
 
The NICE guidelines committee members doc has been updated. See here.

We now also have
  • Gabrielle Murphy (co-author of PACE)
  • Chris Burton (Sheffield BPS-er)
  • Alan Stanton - a community paediatrician who (if I am correct and I would appreciate anyone who can substantiate this is the same person) took part in trying to get a young person with ME locked on a psychiatric ward when he disagreed with the child's consultant's view that psychiatric care wasn't appropriate. See here: http://news.bbc.co.uk/hi/english/st.../panorama/transcripts/transcript_08_11_99.txt

I am beyond upset, furious and incredulous.

I'm uploading this as a file, to keep it somewhere accessible, especially as it appears to be half finished. The Declaration of Interests page is yet to be filled in...

@dave30th looping you into this as PACE authors are your thing.

(Editted to bold first sentence so people can more easily scroll through and see that this is new info.)
 

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It comes down to numbers in the end.

If the PACE/Psych crowd or their sympathisers or people easily influenced into that area vote together (and these outnumber the patients and people with the same views as them) on evidence and wording then it doesn't matter what the rest think.

Had long talks at the first stakeholder meeting with NICE and the RCGP's on what would happen and how conflict(s) would be resolved.
 
Andy said:
@Jonathan Edwards , please see post directly above. Doesn't look like we have benefited from delaying any protest at those appointed so far, can you provide any reassurance that there is still good news to come?
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Tbh I don't see what good news there could possibly be to combat this.

Anyone able to confirm that the Alan Stanton appointed is the same guy involved in trying to lock a kid up?
 
ukxmrv said:
Dr Norma O'Flynn certainly gave the impression at the Stakeholder meeting that the lay members would be selected by "them" (the RCP National guideline centre NGC) . They wanted people, she said, who would be able to examine the evidence with a fresh eye and who had not already made up their mind.
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Do we know who was involved in selecting the professional members? Whoever it was seems to fully support the culture of bigotry and quackery that has done so much to harm how ME/CFS patients are treated.
 
ukxmrv said:
I'm not arguing for patient members to resign (not yet anyway) but wonder how they can possibly keep NICE on the hook?

Especially when they will be gagged by confidentiality agreements
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They won’t be publicly keeping NICE on the hook but they will be in the discussions to highlight the debunking and the patient experience which NICE claims to take seriously now.
 
NelliePledge said:
They won’t be publicly keeping NICE on the hook but they will be in the discussions to highlight the debunking and the patient experience which NICE claims to take seriously now.
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Yeah, and then they'll be outvoted.

I'm not saying they should quit yet, but I think it will be very difficult for them to do much good unless we can get an entirely new committee.
 
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