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

This is just nonsense, one cant comment in the media or on social media about the issues under review but they can make a living out of the issues under review, obtain study grants to promote the current guidelines and continue to sell books that support the narrative of the things under review.

So the whole of the BPS crowd on the panel can continue to work in their clinics making claims about the treatments but the medical advisor of a patient organisation would just have to shut up if more dubious papers where published during the review period and not critique them.

He would also not be able to point out the objective weaknesses of the current treatments to patients.

So will the BPsers on the committee be silent until 2022, give no presentations, interviews or take part in any studies on GET or CBT. Or do they just get to do what they want?

 

It's strange that NICE hasn't published a clear guideline or code of conduct about what committee members can do or say. Even their COI-rules aren't very clear.

 

I'm with you @large donner, it's one rule for one & another for another. How convenient.

 

On a related matter:

It would be interesting to have inside information about the rules and processes of a NICE committee, because the documents do not explain everything. Does anyone have contacts with the lay members of the previous ME/CFS guideline - Tanya Harrison, Ute Elliot or Richard Eddleson? Or maybe with somebody who acted as a member on another NICE committee?

Would really like to know how things are arranged once the committee gets started. For example: are the members divided into different groups, each working on a particular subject? How does the voting work; is it common for members to be excluded due to COI? Who writes the first draft of the text; the technical team that supports the committee members? Hope we can find somebody who can answer these questions.

 

I guess the point about a conflict of interest, is what an individual might be seen to gain (financial or non-financial) from that interest, by behaving in a conflicted manner. If there could be significant gain, then the person has to prevented from any potentially conflicting behaviour.

 

Is there anyone on the committee with a child protection background? I don't necessarily mean someone from a medical background, but someone who knows about children's rights and what should and shouldn't happen in the social services realm as clearly looking at the stats from Tymes Trust there have been lots of cases and every one of them has been wrong. That suggests something odd is happening in the world of ME compared to what is the norm, and an expert in the field would be able to bring something to the table on that.

 

I respect Charles Shepherd's decision. I do wonder if it would have been worth his silence on social media/media for the period of the NICE review in order to have gained his voting rights on the committee though given he understands the problems with the research being reviewed better than most other committee members by the looks of things.

 

This just occurred to me - what would be the consequences if a committee member breaches NICE's rules? Would there be legal consequences? Would there be a discussion of removing that person or its voting rights? Would it be terrible and damaging?

If there are no consequences, then why shouldn't someone say he'll stick to the rules, and if indeed something nasty happened, one could still speak up.

 

I think it really would have been worth it, imo there is no contest in terms of which is more important - his vote or his voice in the media/social media. It matters not what he says in the media in the meantime, if we end up with a guideline that favours the BPS BS the same way or worse than the last one, which as things currently stand seems quite likely.
However he also has to look after his own health & do what he feels is right, & there may well have been factors affecting the decision which are of a more private nature, & so of course I respect his decision too. But i am very saddened by it non the less.

 

Tony Crouch as a social worker should be able to handle child protection policy

 

explains why C.Burton deleted his twitter account.
But presumably there is nothing to stop any of them mentioning things that are discussed to outside 'associates' who are free to put out whatever they like on social media.

I think this condition is a bit counterproductive if NICE are really keen on transparency, as often 'they' only say what they really think on social media.

 

Has anybody looked into the organisation actually finding and ultimately appointing the committee members, The National Guideline Centre? If people haven't, this is what I've found so far, but it looks a short deadend.

https://www.rcplondon.ac.uk/national-guideline-centre-ngc

They say

but if you click on the link for the team, all you get is

https://www.rcplondon.ac.uk/ngc-our-team
and then vague descriptions of their teams and various positions, so I'd imagine it would be difficult to obtain the details of those actually doing the appointing.

 

Hopefully, I guess it depends on his level of experience.

 

He has v relevant experience

 

Tymes trust, 25% Me group and Hope4mefibro

 

From reading the last NICE CFS guideline GDG minutes it does appear that yes, they were divided into groups.

I couldn't see any sign of anyone being excluded from a group or from a vote in those minutes from a COI

 

Did you also get the impression that a technical team wrote the first draft of the text? From reading the minutes it seemed like the committee members were just commenting and proposing adjustments to a text that was allready there...

 

I agree.

Also:

1) I understand that committee members should not be allowed to discuss the details of the NICE guildline meetings publicly before the process is complete, but it seems odd that someone whose views on CBT/GET are well known cannot continue to express those views while serving on the committee. If those views do not amount to a COI, and the person’s views do not disqualify them from being appointed in the first place, what possible negative effect could it have for that person to continue to express the views which they are known to hold?

Has anyone found any official NICE rules about this issues, or is it just something that has been made up for this particular guideline review?

2) If Charles had become a full member of the committee, the MEA would still have been able to post on social media etc. And, even if he had accepted the constraints imposed on him, I can’t see why Charles wouldn’t have been able to continue to advise the MEA about what to say, as long as the statements were not put out in his name.

@Russell Fleming Do you know the answers to questions in point 1 and was point 2 considered?