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

[Sly Saint]

tweet from Jane Colby earlier in the week



prophetic?

 

[Andy]

There is very little info given on the webpage and it has a decidedly positive spin which does not seem to relate to comments folliwing on this thread. I have requested that they list the committee members on twitter.

To be fair, for once, to AfME, I think they have been caught by the information of the additional members being found out. There has been, to my knowledge, no official announcement from NICE and it may well be that AfME weren't aware of the additions at all.

 

[Hutan]

I think people have to appreciate the need for due process. Whether or not a view on the evidence is biased or unsubstantiated is something for the committee to decide. The people appointing the committee cannot prejudge. It may be that the system cannot deliver what it needs to deliver.

Given that you, JE, seem to have some knowledge about what is going on with the committee that the rest of us do not have, what is your advice then?

Is there anything that we can do to facilitate NICE guidelines that do not include CBT and GET as curative treatments, other than continuing to contribute to wider societal change by pointing out the flaws of the BPS arguments and supporting good biomedical investigations?

 

[Sunshine3]

What a sham

 

[ukxmrv]

a

The main question I had still remains:

Who gets to decide on the whether the NICE guidelines changes or stays? Is it this appointed committee or is this committee just here to evaluate evidence for others within NICE to decide?

What is the full defined motion being decided/voted on?

NICE have already decided to update the old Guideline. Happened in 2017 (it should be noted here that this was only after pressure)

So there is no motion being decided here. It is going to happen.

"reason for the decision We will plan a full update with a modified scope of the guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) (NICE guideline CG53)"

This new committee will decide exactly what the new guideline will contain. They could change the odd word here and there to keep the current one in reality, or add different sections or change it totally.

We don't know and we won't get the gist as there are no public deliberations and participants have to sign a secrecy agreement.

The only times we will know what is happening is if someone resigns and makes a public statement or at any of the planned Stakeholder consultations (which they did last time as a
written exercises - I think twice?).

The Royal College of Physicians can potentially can influence the end Guideline as they can try and control the evidence or input or process.

 

[Jonathan Edwards]

Up until this point it has been hard to predict how things were going to develop. So I am not sure I can guess what is coming next.

 

[Sunshine3]

Where is the U.K M.E Action PR person? @chicaguapa......sorry can't remember her name. This is just farcical and no disrespect @Jonathan Edwards but I don't understand your vague replies. Lives are at stake.

 

[large donner]

NICE have already decided to update the old Guideline in 2017 (it should be noted here that this was only after pressure)

"reason for the decision
We will plan a full update with a modified scope of the guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) (NICE guideline CG53)"

This new committee will decide what the new guideline will contain.

The Royal College of Physicians can potentially can influence the end Guideline as they can try and control the evidence or input or process.

I know they have decided to review the guidelines but I'm not sure they are being open about the process of "updating" the guidelines.

They have nothing to add to the current guidelines therefore are being very guarded about what they are actually running this process for. If its just to invite the status quo along to vote for their own studies whats the bloody point. If they invite "experts" who only support the current guidelines they can only be said to have followed due process if they invite the equal amount of experts along who will critique it as being scientifically invalid.

There has to be representation for and against in anything to consider it due process otherwise its not due process. Splattering a few sick patients on the committee is just not good enough.

This would be like going to court and the defence just bringing forward the accused family members to stand up and say nothing to see here. Then the family members and the defence team get to vote on their own motion.

This is NOT due process.

 

[ukxmrv]

I know they have decided to review the guidelines but I'm not sure they are being open about the process of "updating" the guidelines.

They have nothing to add to the current guidelines therefore being very graded about what they are actually running this process for. if its just to invite the status quo along to vote for their own studies whats the bloody point. If they invite "experts" who only support the current guidelines they can only be said to have followed due process if they invite the equal amount of experts along who will critique it.

There has to be representation for and against in anything to consider it due process otherwise its not due process. Splattering a few sick patients on the committee is just not good enough.

This would be like going to court and the defence just bringing forward the accused family members to stand up and say nothing to see here. Then the family members and the defence team get to vote on their own motion.

This is NOT DUE process.

It's up to the patients on the committee and any sympathetic doctors there to introduce and call their own experts with the evidence they want to be heard.

That is, if the RCP's don't include it in their evidence search. I think that we can get an idea of this from the original surveillance report and the comments/ replies to stakeholders.

Last time at least we had the York Review and could see how crap that was going to be.

 

[large donner]

It's up to the patients on the committee and any sympathetic doctors there to introduce and call their own experts with the evidence they want to be heard.

That is, if the RCP's don't include it in their evidence search. I think that we can get an idea of this from the original surveillance report and the comments/ replies to stakeholders.

Last time at least we had the York Review and could see how crap that was going to be.

Thanks for that. I know I am being a pain but what happens after all such evidence is heard then? Who decides what will happen next? How many people decide and what are their names?

Are you saying its not this listed committee in this thread who decides via a vote what the outcome of the review will be and whether the current guidelines will stand, be changed, or dropped?

 

[Kalliope]

 

[Snowdrop]

I get a 'that page doesn't exist' for this tweet.

 

[Binkie4]

To be fair, for once, to AfME, I think they have been caught by the information of the additional members being found out. There has been, to my knowledge, no official announcement from NICE and it may well be that AfME weren't aware of the additions at all.

I have been unable to find a full list of gdg members on the AfME website.

@Andy, you say “ additional members being found out”. So there was no announcement? So, who let it slip and why?

 

[Kalliope]

I get a 'that page doesn't exist' for this tweet.

It was a tweet by dr. Keith Geraghty which now seems to have been deleted.

 

[Keela Too]

List is here:

https://www.nice.org.uk/guidance/gid-ng10091/documents/committee-member-list

 

[Snowdrop]

It was a tweet by dr. Keith Geraghty which now seems to have been deleted.

OK Thanks. Though now I'm really curious.

 

[Skycloud]

was this it?

 

[Skycloud]

Actually that tweet seems to be a reply to a previous tweet of his own, so maybe not the tweet that's disappeared.

 

[Stewart]

My interpretation, which may well be wrong, is that as long as you keep your views to yourself in the interview you're assumed not to have any. The interview isn't going to look you up to see what you've said or done previously.

One way of interpreting this is that only non-professionals are capable of having a preformed view. The possibility that a professional could have a preformed view is discounted by virtue of the fact that they are a professional. That kind of stacks the deck. I may well be misinerpreting this, but I've seen the myth of the "professional" and the characteristics that are ascribed to them in the legal profession, and what a complete farce that is.

I suspect that if you are applying for one of the professional positions there will be an assumption on NICE's part that you probably have a preformed (positive) view of CBT and GET - because if you work in the NHS these are the treatments that you will be experienced in providing. You will almost certainly believe these treatments are highly effective and that the body of evidence behind them is completely sound. And given that providing these treatments is part of your job, you are unlikely to vote for the NHS to discontinue them - as their replacement with an alternative treatment protocol could well have the effect of making your position redundant.

Basically if you are an ME/CFS specialist currently working in the NHS then chances are good you're a fully signed-up believer in the curative powers of CBT and GET. I don't see how NICE can get round this problem - apart from intentionally appointing committee members that have no background or expertise in treating ME. And if they did that they'd open themselves up to ridicule and criticism from the BPS lobby, which could then be used to discredit the whole review process.

I don't think there was any realistic way that NICE could keep BPS advocates off the committee entirely. What matters is whether NICE is fully aware of the problem this causes and whether they are seriously committed to preventing the biases of this group from overwhelming the review process. The impression I get from what @Jonathan Edwards has said (and not said) so far is that the people he has spoken to at NICE have assured him that they are aware of the issue and will take steps to address it. Of course whether or not they actually do address it remains to be seen...

To have eight (probable) BPS committee members is certainly far more than I would like - and I'm stunned that NICE think a member of the PACE team is a suitable appointment. But with 17 committee members appointed, at least the BPS gang don't appear to have a majority so far...

Does anyone know if the completed declarations of interest of the committee members are made public?

 

[Andy]

I have been unable to find a full list of gdg members on the AfME website.

@Andy, you say “ additional members being found out”. So there was no announcement? So, who let it slip and why?

The first I knew of it was @Gecko 's post upthread, https://s4me.info/threads/nice-guid...as-now-been-published.6197/page-6#post-115551 - how Gecko knew I'm not sure, my assumption, right or wrong, is simply keeping an eye on the document listing those on the committee.