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

I don't know more than you do I am afraid.

 

I understand that NICE have already rejected some patients because of their concerns over bias, because their views are already formed, right?

Yet NICE let on Gabrielle Murphy on? She runs a clinic dishing out CBT and GET. She not only co-authored PACE, she led one of the arms of the trial. How can this be justified?

Chris Burton I know less about but he is an "expert" in MUS, runs training courses on it, and has published with Michael Sharpe on the topic.

 

What's the running total of BPS proponents so far? According to the source below, the full committee would normally be 13-15 people. I share @Esther12's concerns about competent voices being outvoted.

I just tried to find NICE's policy on committee selection in case they're already clearly in breach of it. If they are, the time to protest is now, not once the committee is already in action.

Sorry if this has already been posted on this long thread but there's a lengthy description of how committees are selected in section 3.2, here:

https://www.nice.org.uk/process/pmg20/chapter/decisionmaking-committees#forming-the-committee

but early on in that section it says:

All Committee members are recruited in accordance with NICE's policy and procedure for recruitment and selection to advisory bodies and topic expert groups​

and that link is dead. Can anyone find that page?

 

Here is a newer version of it (not from 2015, but from this year):
https://www.nice.org.uk/Media/Defau...tment-selection-to-advisory-bodies-policy.pdf

 

The committee being set up is presumably a topic-specific committee, not a standing committee, @Jonathan Edwards?

 

Those additions look additionaly bad.

Are there any positions still open?

If anyone feels up to answer: How will the committee make decisions? (Asking about the formal level: which committee member will have how much influence, (are there any power differences related to the categories of stakeholders?), (how) are the stakeholders grouped, how is the voting process designed?, which stages are there within the review process?)

[Edit: a link to where I can find this information would also hepl!]

 

No COIs listed?

eta: also what about the 'Technical Team' who will decide which research papers to use?

 

The Royal College of Physicians is developing the ME/CFS guideline.

"Guideline development group recruitment
An independent guideline development group is set up by the NGC for each clinical guideline being developed. Group members include health professionals and patient/carer representatives with relevant expertise and experience. Registered stakeholders are invited to nominate people to join the group."

https://www.rcplondon.ac.uk/about-rcp/work-rcp/develop-guidelines

from the Full Methodology Handbook

"all GDG members will have 'interests' or they would not have been asked to be on the GDG
and a declared interest does not necessarily preclude them from being on the GDG. But, it is
important that members of the group know where members are coming from during a given
discussion. (For example, if Prof A is known to endorse stripping of varicose veins and be adamantly
opposed to tying, the other GDG members need to be aware of this before a discussion takes place.)
It may be that the chairman, with the GDG's support, will ask a member to not participate in the
discussion of a particular topic if they have a conflict in order not to have undue influence over the
discussion. (For example, Prof A could be asked to leave the room, be silent or act as an 'expert
witness' on the surgical procedure, only answering questions but not participating in the discussion).
On occasions, the affiliations or interests of an individual may be so extensive relative to the
guideline topic as to preclude them from being a GDG member. This may be the case if a particular
outcome of the guideline would significantly benefit them commercially or if they would were
employed by a company with a commercial interest in the guideline topic."

 

That's from the RCP "team". I posted a year or so ago a job description of one of their team which would be the type of person who searches for the papers.

They will be using the GRADE method to do this.

It's a specific job within their staff. Not related to any ME knowledge or anything like that. Just a paid staff member who does that for all their guideline work.

Individual GDG members can also call for evidence, ask for evidence to be included and to call specific medical experts to address the group.

 

They will be using the Delphi method of decision making (unless the GDG leader or someone has changed this since I asked)

https://en.wikipedia.org/wiki/Delphi_method

All committee members are supposedly equal within the GDG (I think that is what you mean?). There is a Chair and a vice Chair. I was told that the Chair would have the deciding vote if tied.

The stages are roughly in any guideline

1. The SCOPE
2. The Questions
3. The Evidence
4. The Recommendations

From memory Stakeholders were asked to comment NEXT on the Questions. In the last Guideline process I think this was once the Questions were written.

 

It makes me deeply suspicious about the unknown person or people who made you take a vow of secrecy/confidentiality then. Since "they" must know that you are trusted by patients then keeping you quiet increases the chances of keeping patients quiet. And if patients keep quiet then the BPS brigade can be brought in with few, if any, complaints. And then we can be told that we have missed our chance to complain and now we just have to lump it.

 

I have good reasons to think that is not the way things are.

 

Do we know how many positions remain to be filled? Was I right that the total committee is likely to be 13-15 or is this a different kind of committee than I thought?

 

When I started this thread they had announced 9 positions, with 5 left to fill, plus the 5 lay members.

ETA: Given they have announced another 3 positions filled, I assume they are looking for a further 2 people.

 

That is unbelievable, especially when they have discounted others from joining for much weaker reasons.

 

Is it realistic to ask for (for eg Gabrielle Murphy's) declaration of interest form to be made public?

 

This is a Kafkaesque twist on Making A Murderer.

But instead of an innocent person being convicted of rape and murder by a small powerful group to protect their reputation and financial interests, in this situation, a small powerful group is implementing medical harm and murder to protect their reputations and financial interests.

Margaret Meade was never more correct: Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.

 

I wonder how aware NICE are of the issues, such as Stanton's involvement in that particular case. As patients we tend to overestimate how much different people or bodies know, then find to our surprise just how little they really know.

Is it possible that they just used the declarations of conflict and didn't dig too deep? In which case, is it apppropriate to suggest that certain actions or behaviours in the past indicate a CoI that may not have emerged in their applications? If so, perhaps they need to consider that aspect, either in reviewing suitability for the committee, or for extra caution by the chair when considering their input.

 

Perhaps the expert letter writers of S4ME need to put together an alternative COI report on each member of the committtee, which then gets sent to NICE.

Quite how Gabrielle Murphy was appointed is beyond me, if we are hopefully assuming a fair process. Let's not forget she signed this letter in support of Wessely, https://www.independent.co.uk/voice...-online-postings-2-december-2012-8373777.html, which included "However, researchers in the field have been the target of a campaign to undermine their work and professional credibility. This harassment risks undermining research in the field, preventing the development of new treatments and discouraging specialist clinicians from entering the field. We fear that this may have resulted in patients not receiving the best treatments or care – staying ill for longer and not being able to live their life to its full potential." - no risk of bias there then...