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

@Gecko . Just wondering if there is another source we should know of? Or just keeping a useful eye open? Thanks.

 

You aren't a pain at all. I'm probably not explaining it well.

The current Guideline will not stand. There will be an updated Guideline. NICE will publish it in around 2022 and the current Guideline stays in place until then.

The committee members don't get a vote on IF the current guideline is updated - that has been decided by NICE already. Their remit is to update it.

What they will update it with is unknown.

The SCOPE for the new Guideline has already been written and published. If the process happens as per last time (which was what NICE told me at one of the meetings) a set of Questions will be written from the Issues identified in the SCOPE, then Evidence identified to answer the Questions. The final Guideline is created from this basis.

The Questions may be different to the ones that were used in the 2007 Guideline. The Evidence found to answer the Questions may be different. The Answers may be different.

The Delphi method (last time I asked) will be used to make decisions. Guideline members will evaluate evidence and rank them. Everyone is equal apart from the Chair (and I don't know about the vice-chair).

When I asked about disputes over evidence in the committee meeting I was told that the Chair could ask for a vote or cast a deciding vote if a tie or just make a decision. From reading the minutes from the last GDG meetings I could see that they argued over things like wording.

This Delphi ranking is going to happen at different stages of the Guideline Development process as they work through the Evidence for each Question.

The Committee members who will be doing this are in this document from NICE

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

At parts of this long process Stakeholders will be consulted. Last time this was done twice I think. Both consultations were written. I don't think that this influenced the outcome, however, it did show us the direction they were heading in.

 

From the same thread and relative to previous review
https://twitter.com/user/status/1053779923733749762

 

@Andy @Binkie4 I was alerted by someone else here in Sheffield, not sure if they're on S4ME (at least not actively that I know of) and not sure how they knew. Think this is a bit of a grapevine situation tbh and not sure I'd be able to get to the source - sorry that's not very helpful! I do know NICE didn't email stakeholders to say the list had been updated. My guess is there are still a few appointments to be made and I would hope they will email stakeholders when all members are finalised.

 

Is there still room for any influence? How? Hope this is not too much pressure.

ETA: I think there are 2 more posts to be allocated???

 

I don't know more than this. Other than having read a significant amount around the NICE processes, and having never come across a suggestion that NICE would rescind an appointment to a ctte.
I'm working off the same reasoning as @Andy that there are still a few appointments to be made, and I only know NICE didn't email stakeholders cos they obviously didn't email S4ME and also didn't email #MEAction who I do some stuff with. The person who alerted me is just another patient, hence not naming them.

 

Just saw this and remembered reading something in the consultation responses from NICE so looked it up. They state, on page 63:
"There is no plan to use Delphi consensus methodology".
I'd take that as a positive, delphi has no place in assessing science.

And yeah, I remember reading that the chair will have the deciding vote, but no idea where I read that.

 

Should not the ME charities be involved with this?
We are going to be scuppered with this gdg.

Why are they releasing them piecemeal?

@Afme @MEA

ETA: rewording of last sentence

 

There really is nothing to update into the NICE guidelines.

The only thing they could possibly do is just remove stuff, namely CBT and GET. I really hope this isn't an exercise in adding in LP and some other crap using the BPS crowd providing the "evidence".

 

I'm afraid i think it is, i've been worrying aabout it from the beginning. but then i'm a dreadful cynic solets hope i'm wrong.

 

There were a fair few bps proponents before latest 3 new members.

 

I have just checked the progress on the Thyroid disease guidelines review process (about nine months ahead of the ME/CFS one) and the register of interests of the committee was only published
nine months after the committee was set up.

This seems absurd to me; why does it take so long? Surely, COIs should be formally registered and taken into account when the committee is set up and published straight away(?)

transparency(?)

eta:just checked and according to the NICE manual re committees, the declarations of interests are published with the final guideline(?)
https://www.nice.org.uk/process/pmg20/chapter/decisionmaking-committees#forming-the-committee

this is the declarations of interests policy (with examples)

https://www.nice.org.uk/Media/Defau...rocedures/declaration-of-interests-policy.pdf

 

for reference:
https://www.nice.org.uk/guidance/cg53/evidence/full-guideline-appendix-1-pdf-196524110

 

Do you have a link to the register of interests? I'm curious to see what kinds of things are covered.

 

Thank you. It was a RCP staff member who told me that and it was at the 1st Stakeholder meeting. Maybe they changed their mind? or are there different ideas between the two parts (RCP centre and NICE).

I don't think that actual method makes much difference if we are still outnumbered between doctors with fixed ideas and people who will genuinely look at the evidence sadly.

 

5 of those 17 are patient members, so so far still more bps proponents to biomedical amongst the professionals. According to Jane Colby, executive director of children’s ME charity Tymes Trust, 2007 NICE group did not give equal weight to patient views. Jane Colby wrote in her witness statement for the court:

“We further believe that it was incorrect to relegate patient experience to a low level of priority. The Chief Medical Officer’s Working Group gave equal weighting to evidence from patients and evidence from the medical profession, which we believe would have been the correct way for NICE to proceed. With the Government promoting the idea of Expert Patients as being authorities in their own management, it was, in our opinion, perverse and wrong of NICE to then treat their evidence as of less value than that of medical professionals who can offer no cure.”

@ukxmrv is v knowledgable so perhaps they can say whether they think process has changed and more chance patient members views will be given equal weighting this time round?

Even if NHS’s pool of people to select is limited they could have selected, Speight, Hooper and Weir who all applied.

 

I don't know what weight RCP/NICE will give to patients experience and it is something we have spoken to them about for years. NICE used to have a formal hierarchy of what they considered evidence with a "gold standard" of being a clinical trail. Anecdotal reports by patients used to be the lowest form.

Then, well after the last NICE 2007 fiasco, a few years ago there was an interview with NICE (heard on radio 4) where they appeared to admit that patient evidence should have a higher consideration and weighting.

During the stakeholder meeting and the written consultation we argued that Patient Charity Surveys and formal reports (like the Gibson Report) should be used as evidence and they seemed to be considering this.

Hope this is the best way to explain it. Lets use "Harms from CBT and GET" as an example.

Patient experience of this is not a specific study or a dedicated paper in a medical journal although there will be gems I'm sure we can use. We do however have patient surveys and evidence from medical testing after exercise, some of which is published.

How do we ensure they are included?

The evidence search will use a system called GRADE to search for evidence. (I've downloaded a lot of information on GRADE but I've not had the time to read it all). The evidence search will be done by an ordinary paid member of staff who does this for a job and is trained in a particular methodology.

From what I gather from my talk to a RCP staff member GRADE will search medical journals. It will have parameters to enter. I don't know if GRADE can be configured to search patient charity newsletters or where ever the evidence is we need to be gathered. I don't know how it will find the right papers for us and the gems in the right papers.

If not they would need a separate way to search and include things like patient surveys that were never published in a medical journal.

The alternative if there is no suitable formal search method that the RCP use, is for the patient reps or doctors who support this approach to submit the Patient Surveys and Reports or right papers to the group and/or to call for evidence as a report from a doctor who knows about the topic or even from testimony from individual patients. This can be done under the existing rules.

If we can't get GRADE to do the right search we will need to use a manual method of ensuring the right evidence is considered.

Then it will be up to the GDG or NICE to determine how to weight this evidence when they consider answering the written Questions. I don't know this and I anticipate a battle given some of the people on the GDG.

 

In terms of giving weight to patients' views, I hope that expert patients on the committee will have a chance to speak out about the methodological problems with the PACE trial (and other trials with similar flaws). There is no justification for not taking methodological critique on its merits, regardless who is making the points.

 

Do we know what the views of the other 3 lay members are?

 

Good question Marge - it not strange that we don't seem to have heard of nor come across the other lay people?