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

Have I correctly understood what has happened?

- Dr Hng with others submitted feedback on the draft during the appropriate consultation period
- Drs with ME have established some form of connection with the Dr Hng group
- collectively they now have written to NICE requesting that any substantive alteration to the draft Guidelines be subject to a further consultation exercise

Presumably such a new consultation exercise is not an option, but does the request imply a serious concern by these doctors that NICE will backtrack significantly on the draft guidelines.

 

Dr Hng aka Robin Brown IS the founder of Doctors with ME. https://doctorswith.me/home/about/governance-board/

I originally suggested on her FB group that one of them might want to join as a NICE stakeholder a few years ago. However she and presumably no-one else, had the capacity to be involved at that stage. But it was a useful post as someone from the Parents' FB group, got in touch and two of their members attended the NICE scoping meeting with information about mis-treatment of children, which they discussed with the Chair of the NICE GDL group at the meeting.
I was in a different group, with the delights of Gabrielle Murphy and Joanna Bond-Kendall (physio at Bath) who could not believe that any of her patients were worse off after their "treatment". Also a Liaison Psychiatrist, who called himself Muj and was the one who provided so-called "expert opinion" to the GDL Committee, which was derisory compared to those of Prof Edwards and Dr Muirhead.

I also met some other very interesting people, with whom I am still in regular contact.

 

I suspect that 25% group were looking for additional signatories and contacted Doctors with ME once they had publicly "launched"

No inside info.

 

Dr Hng made a group submission on the draft guideline in the appropriate consultation period.

This recent letter says it is lodged on behalf of eight stakeholders, but a ninth signatory is listed as 'Dr HNG Group Submission, with and on behalf of Doctors with M.E.'

I am surmising Doctors with ME have added their name to this letter with the 'Dr Hng Group Submission' because it would not appear to be a stakeholder and due to Dr Hng's involvement in Doctors with ME.

 

OK that would make more sense, since there is no credible reason for a significant rewrite but it's fair to anticipate all the political maneuvering behind the scenes could attempt to force an extensive rewrite without a process to deal with the changes and just ram it through.

So sounds like just hoping for the best and preparing for the worst? Since we are dealing with people acting in bad faith, this is only rational. I have no doubt many are working furiously behind the scenes, but they have no standing, the evidence is all that stands. However as we know, rules and processes are for little people.

 

The recent letter to NICE was linked to above, but I think it would be helpful to copy it below (see https://doctorswith.me/dwme-joins-c...rrtzzfp6frNq_Z-gLav9Dxs1cFYfzZH5U9ElSWLdDEwHU )

It may have been confusing because though we saw it being shared on line on a Doctors with ME webpage, it is from some ten groups, only eight of which are NICE stakeholders. Presumably the Dr HNG Group and the newly formed Doctors with ME are the two that are not stakeholders and the Dr HNG group is mentioned as a distinct entity because they previously sent in a significant submission during the consultation period.

Thank you @MEMarge for clarifying Dr Hng aka Robin Brown is also the founder of Doctors with ME, it is good they are already being proactive.

[corrected typos]

 

Should anyone not be familiar with the names of the two groups above:

LocalME was a Yahoo Group message board for UK regional ME org reps and invited others. It was originally set up and run by the late Connie Nelson. Yahoo Groups are now defunct, though the group may continue as an email message list, only - I can't confirm its current status as I'm no longer a member.

ME-Letterforce was a spin-off project from the LocalME Yahoo Group for drafting letters, statements, consultation responses etc supported by UK regional ME org reps.

 

LocalME continues on https://groups.io/g/LocalME

And ME-letterforce too.

 

OK. Thanks.
Pleased to hear the group has been able to migrate to a new platform.

 

So is it still definitely the case that no further comments on the draft have, nor will be, accepted after the deadline that was set, as per:

And that all NICE is doing now it considering all the evidence and comments that arrived up to that date and no later?

Or is there some back door mechanism (keep it polite please!) by which the BPS'ites might yet apply influence? I get the feeling that much of their recent utterances have been with view to indirectly influence NICE's deliberations, by way of grooming their mindsets, so as to maybe bias some NICE decisions.

 

No submissions are considered after the consultation, as a rule. There was the consultation and that was that. If any new evidence or argument was supplied after that, it's too late to be considered.

 

Though I don’t think it is at all likely that the current press of publications since the closing date for comments will make their way into the research analysed, it is theoretically possible that they may colour any reanalysis of the material already included or strengthen the impact of any new data submitted as part of the consultation process. In some ways it is a shame that these recent papers will not be included in the analysis as that would have resulted in them also being dismissed as low or very low quality. Some BPS advocates might hope to achieve a weakening of the wording of rejecting GET or the Lightening Process in the guidelines, through a general shift in the academic or clinical culture, making it easier for the existing UK specialist services to continue much as they are with just superficial rebranding.

However, I suspect rather this is aimed at what happens after the publication of the new guidelines, trying to ensure that the implementation of the guidelines and any future service development happens in a strongly BPS climate, minimising any consequent damage to the BPS hegemony in the UK.

 

Stakeholders would normally see the final draft 12 days (I think) before publication. This would only be to proof-read the document. Not to make additional suggestions. And would of course remain confidential - stakeholders could not reveal the content before publication.

I am not sure if this will still be the case with the 2020/21 Guideline, but if it is then we might see it around 06 August which would allow us time to consider how we might want to respond to the final content.

It used to also be the case that Stakeholder comments made about the Draft Guideline were also published, so the public at large could read them, but I am not sure when this happened. Thus far, it hasn't.

 

At some point during the consultation, NICE did say that stakeholder comments would be published in full, but comments from others would only be summarised. However I don’t think it was specified when, though with the final draft might make sense.

 

Do we know if there is a way to clarify these things in advance?

 

That is good, because that should mean the whole thing is open to public scrutiny.

 

The stakeholder responses should be very interesting. In order to respond to the draft, the BPSers will have to seriously engage with the criticisms of CBT and GET, etc, on their own merits for the first time; for decades they've seen engaging as infra dig at best and reinforcing false illness beliefs at worst. Given that they've never tried to understand us in any depth beyond "chronically fatigued" and see any challenge to their views as irrationality or delusion, that's terra incognita for them.

I think these two tweets by Carson give a flavour of what is to come in the Royal Colleges' responses.

We will also have hard evidence as to which NHS clinics are safe for us and which aren't based on the substance and tone of their responses.

 

Hoped I would find it. This is from NICE. Not sure if it applies to the ME/CFS Guideline process, but I think we can assume that it does:

Link: https://www.nice.org.uk/process/pmg...ine#releasing-an-advance-copy-to-stakeholders

So, we might get to see it by 04 August, but have to return 'substantive errors' to NICE by 11 August. Pretty tight deadline, isn't it?