Dr Charlies Shepherd stands down from NICE guideline committee

BrightCandle

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https://meassociation.org.uk/2021/08/dr-charles-shepherd-stands-down-nice/

A few quotes to give you an idea, seems he commented why GET and CBT were being removed and has been forced out.

Following publication of the draft of the new NICE guideline on ME/CFS for Stakeholder consultation in November 2020 it has become increasingly difficult for me to fulfil some key parts of my role at the ME Association (MEA).

Commenting on concerns and disputes relating to CBT and GET in any public forum almost inevitably creates a conflict of interest at NICE.

This is part of a recent exchange (later modified to clarify that the information referred to the November draft of the guideline) on MEA Facebook regarding GET:


  • CS reply – Is whoever that is nudging you into GET aware that the November 2020 draft of new NICE guideline, due for release in 4 weeks’ time, is no longer recommending GET for ME/CFS? This is because there is no sound research evidence to show that it is effective and there is consistent patient evidence of harmful effects. If GET was a drug doctors would have had to stop using it years ago! Dr CS MEA
  • Reply:  thanks for that Dr Shepherd, I feel that my daughter’s physio is trying to nudge her towards GET, so it’s really useful to have this clear, succinct evidence-based answer as we can’t always find the words in the moment. And often feel we are not believed even when we do find them!
In this case NICE received a complaint from someone who is carefully monitoring our social media content. This resulted in a further discussion relating to my continuing conflicts of interest and I have now been ‘stood down’ from the NICE guideline committee.

Before leaving the committee I have recorded my views on some changes to the guideline that have taken place following the Stakeholder consultation on the November draft and I will comment on these when the guideline is published. To do so before August 18th would break NICE guideline committee confidentiality agreements.
This is not good news and I fear this shows the direction the wind is blowing in NICE once again. The fact he has captured the details of the draft before leaving shows he also isn't confident things have changed either.
 
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The fact he has captured the details of the draft before leaving shows he also isn't confident things have changed either.
I dont think there is anything to worry about @BrightCandle as Dr Shepherd goes on to say " November 2020 draft of the guideline represents a major improvement on the current Nice guideline"
 

Countrygirl

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Today, three members of NICE resigned.

These are:

Michael Beadsworth, a consultant in infectious diseases, Liverpool

Gabrielle Murphy, clinical lead of the fatigue service at the Royal Free

Joanne Bond-Kendall, senior physiotherapist at the ME/CFS service in Bath

These are all GET supporters so I think we take this as good news.
 

Pyrrhus

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@Pyrrhus also see Brian Hughes’ fantastic blog post on this BMJ article.
Oh my, that is truly hilarious.

Excerpt:
Brian Hughes said:
Is it just me, or is the BMJ’s take on those NICE guideline committee resignations maybe a little biased?

The BMJ are reporting that four members of NICE’s guideline committee on ME/CFS have stood down. One is the medical advisor of the ME Association, who stated yesterday that he found it too difficult to combine membership of the committee with his wish to comment publicly in the media about ME issues.

However, the real story here — an “exclusive”, according to the BMJ — relates to the three other members who departed. According to the BMJ journo, these resignations reveal critical problems with NICE’s processes for developing treatment recommendations.

Notably, the BMJ reporter comes to this conclusion despite the fact that neither NICE nor the three members concerned have provided any explanation for the resignations. In fact, all members of the committee have signed confidentiality agreements, meaning they have undertaken not to discuss such matters with anyone, including the BMJ...
 

SNT Gatchaman

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These three resignations are separate to Dr. Shepherd's imposed departure ("conflict of interest" - really??).

People commenting on these resignations (at least that I've seen on Twitter) are seeing this as a good sign. That the three resigning are those with vested interests in the established ME/CFS clinics (CBT/GET focused). Two weeks til the final NICE recommendations are published.

I'm confident.