NICE ME/CFS guideline - draft published for consultation - 10th November 2020

This link no longer worked for me, so I found a new one that works

https://pharmaceutical-journal.com/...of-chronic-fatigue-syndrome-in-draft-guidance

 

In theory, it is possible that during the proof-reading process starting 2 weeks before the guidelines will be released, stakeholders signal what they consider to be substantial errors as a way to submit further comments.

NICE may be obligated to respond to these reports. If many of those come in and NICE has to respond in detail to each reported error, the release might be further delayed (especially if NICE is short-staffed throughout the summer holidays). However, it seems unlikely that this would occur; NICE should be able to reject comments passing off as error reports on this very ground.

 

From Facebook:

Dr Charles Shepherd stands down from the NICE guideline committee with immediate effect
Dr Shepherd says: "Following the 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).
In particular, this relates to providing information and commenting on key issues of concern to the ME/CFS patient community that also form part of the NICE guideline and at the same time not creating what NICE regard as a conflict of interest*. "
Please click below to read the statement in full.

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

The original Facebook post:

 

Moved post

"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"

I suspect many stakeholders might be disappointed on Wednesday.

 

Dr Shepherd describes the ‘conflict of interests’ that lead to his being ‘stood down’ as follows:

I know we have had discussions about this issue before, but I am unsure how Dr Shepherd’s role in the MEA represents a conflict of interest when that of those working in the Specialist ME/CFS does not. Does the NICE interpretation of ‘conflict of interest’ risk the creation of bias in their guideline committees?

Unfortunately this also is likely to raise speculation about attempts from some quarters to influence the outcome of this process against any strong statement about the dangers of CBT and GET. Let’s hope these concerns are not warranted, though Dr Shepherd does indicate that there are changes afoot:

Well I guess we only have a couple of weeks before we find out, though it also raises the question why ‘stand down’ Dr Shepherd such a short time before the final publication date.

 

Moved post

I think Charles is right not to challenge this since the report is all but completed.

But there seems be a serious confusion at N ICE about 'conflict of interest'.

Just to note that for a psychologist or physio member of the committee the decision whether or not to recommend these treatments has major implications for their personal income. For Charles it makes no difference. That is what a conflict of interest is about.

No doubt the psychologists and physios will have been recommending exercise and CBT to hundreds of people over the last year - as part of their job. Charles takes his job seriously - to provide honest advice. Since that will be whatever stands up to scrutiny he has no conflict.

 

As indicated on another thread, NICE seem very confused about what conflict of interest means.
Charles has no conflict of interest because his interest onNICE and his interest at MEA are identical - providing honest information for the benefit of PWME. For the therapists the situation is very different.

 

I think the Chairman needs to indicate whether there were any representations made to him on the role of CS, or any lobbying for his removal. In the interests of transparency.

 

"In this case NICE received a complaint from someone who is carefully monitoring our social media content." Was this a stakeholder?

I thought that CS was a non-voting member of the committee to allow him to continue with his duties as Medical Advisor for the MEA? (I think it says on the other thread that he was already excluded from 24 meetings?).

 

The question that arises in that case is, did the chairman look at the activities of other members to ensure that all were held to the same standard, regardless of whether a complaint had been made?

 

The chairman needs to address any issues arising out of this before the final report is published if there turn out to be any substantive modifications to the draft weakening the position previously taken.

The fact that CS has been removed from the committee for broadly supporting the draft proposals does not auger well.|

 

NICE better have a real explanation out once this process is over because this obviously makes a joke out of the process and the concept of conflict of interest, especially if the alleged "conflict" is over giving the same caution that the evidence concluded, even more so in contrast to the blatant conflicts of interest the BPS promoters actually have. Shepherd may just be the one person with the least actual conflict of interest on the expert side of the committee, aside from Edwards.

 

All things considered, isn't the complaint something of an own goal? Surely the report must by now be at the printers (edit - metaphorically speaking), or already released for pre-publication reading by those entitled to preview. Could CS have had any further influence on input? All that seems to be achieved is to cast doubt on the possible involvement of others and create the possibility of a perception of inequality of treatment.

 

Apologies for keeping on with my random thoughts, but will the removal of CS from the committee mean that he does not get sight of the final version prior to publication? That might impede the ability to make a timely response against all those who will be quick out of the blocks. The nature and extent of embargoes could be important in setting the narrative.

 

This may well be the point.

(Idle speculation on my part)

 

Disappointing, of course, but I'm not worried overmuch about this; the guidance is surely done & will probably be sent to stakeholders for error review within the next few days. Additionally, as per the minutes of 15/03, CS had already been forced to "withdraw from all further meetings" owing to the Guardian article he authored.

Of course, there will now be widespread perception of a double standard, especially as Daniels was not forced to withdraw for her two tweets promoting CBT for ME/CFS and Long COVID.

 

Presumably the final draft must be now agreed, as isn’t it due to go out under publication/comment embargo two weeks before the actual publication date, to allow stakeholders and the press time to prepare their response to the document at publication?

The only things that Dr Shepherd is prevented from doing as he is no longer a committee member is commenting on the final draft as a current committee member, which I can’t see as significantly undermining how influential his/the MEA’s responses might be, or resigning in protest, which presumably would only have been likely if he felt the final version has unreasonably deviated significantly from the draft. His statement about being stood down does not seem to suggest things had got bad enough for him to consider resigning over the actual process.

The only reason I see for any person or group wanting Dr Shepherd out now is either sour grapes or a power play for what happens after the publication, though I am not sure the committee would have much of a role then.

Do we collectively as a stakeholder organisation feel any need to question NICE about Dr Shepherd being stood down, or do we feel like him, that at this stage it would be of little value?

Also have we worked out how we plan to make the most of our pre publication sighting of the final guidelines, without breaching our commitment to the publication/commenting embargo, and how we intend to organise our response/reaction to the formal publication?

 

It will be quite a lot of work, but would it be worth having a list of deviations/changes in the main guidelines from the November draft, and an idea if they seem to be in response to stakeholder comments prepared for sharing as soon as possible after publication.