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

[Sean]

I wasn't sure about that. Considering the problems that surround ME/CFS, my instinct is that it could be best to avoid those patients most likely to naturally recover (those only briefly ill) getting a diagnosis or having contact with ME/CFS specialists.

It's a fine line.

I find it difficult not to read the guidelines on the assumption that they will be being put into practice within a network of clinics run by people like Crawley and her BACME colleagues. That makes me feel nervous about any talk of specialist care. I don't know how fair that is. Are other people assuming the same?

Yeah, I am nervous about that too. With some honourable exceptions, the current batch of NHS 'specialists' are not fit for the purpose.

 

[Saz94]

PS I hugely enjoyed the comment in Jonathan Edwards' testimony about how every doctor should have learned in medical school that there are problems with unblinded trials with subjective outcomes. Savage.

 

[Andy]

Fatigue syndrome exercise therapy loses Nice recommendation
https://www.theguardian.com/society...me-exercise-therapy-loses-nice-recommendation

 

[Hoopoe]

That is very good news. Better than expected. I smiled and then I laughed when I saw that LP was specifically recommended against. Good job stopping this before it got even worse.

 

[Hutan]

Re the SMC reaction:

A quick skim through this nauseating murk makes me suspect one of their main lines of argument will be that the draft recommendations are not evidence-based and therefore deprive patients of evidence-based therapies, in the hope that if they repeat it often enough it will start to sound true (they used the word 'evidence' a whole 11 times on that not very long page of comments).

Do not offer people with ME/CFS: ...
therapies derived from osteopathy, life coaching and neurolinguistic programming (for example the Lightning Process).

Crawley's endorsement of the Lightning Process made it very clear that the standard BPS trial approach of subjective outcomes and unblinded treatments could make even standing on a paper circle saying 'stop' look like a reasonable treatment. That Smile Trial should have removed any remaining belief that the PACE trial approach produced credible results - the nail in the coffin.

Surely word must be getting around about Crawley and the rest? A guideline like this could not have happened without some people with 'establishment' power understanding.

 

[Hoopoe]

Re. the Science Media Center "experts" arguing that GET is evidence-based.

The argument against CBT/GET is in part that it's not based on reliable evidence, not that there is no evidence. The CBT/GET supporters as usual simply pretend that nonspecific effects is not something they have to control for. The other argument against GET are the horrendous rates of harm reported in surveys.

 

[Andy]

AfME: Draft NICE guideline for M.E.: have your say
https://www.actionforme.org.uk/news/​draft-nice-guideline-for-me-have-your-say/

MEA: NICE Press Statement & Media Coverage of New Clinical Guideline on ME/CFS
https://meassociation.org.uk/2020/1...coverage-of-new-clinical-guideline-on-me-cfs/

 

[Andy]

I assume they must have done. S4ME, presumably, being seen as 'just' an ordinary stakeholder means that we haven't yet received any notification from NICE that the draft is out. Stakeholder engagement comes after publicity it seems for NICE.

Seven hours or so after, as it turns out.

Email from NICE:

Dear Colleague,

RE: Draft guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management

This draft guideline and its supporting evidence are now out for consultation.

We hope that your organisation will submit comments on the draft guideline; it is a valuable opportunity to ensure that the guideline considers issues important to your members. The consultation page has all the information and documents you need to comment.

The consultation will close at 5pm on 22/12/2020.

We expect the guideline to be published on 21/04/2021. If your organisation submits comments and a signed confidentiality form, 2 weeks before publication we will send you the final guideline, along with comments from stakeholders, so you can let us know about any substantive errors.

If you have any queries about this consultation, please contact cfs@nice.org.uk

Kind regards,

Katie Stafford

Senior Guideline Coordinator

 

[Saz94]

Seven hours or so after, as it turns out.

Email from NICE:

Dear Colleague,

RE: Draft guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management

This draft guideline and its supporting evidence are now out for consultation.

We hope that your organisation will submit comments on the draft guideline; it is a valuable opportunity to ensure that the guideline considers issues important to your members. The consultation page has all the information and documents you need to comment.

The consultation will close at 5pm on 22/12/2020.

We expect the guideline to be published on 21/04/2021. If your organisation submits comments and a signed confidentiality form, 2 weeks before publication we will send you the final guideline, along with comments from stakeholders, so you can let us know about any substantive errors.

If you have any queries about this consultation, please contact cfs@nice.org.uk

Kind regards,

Katie Stafford

Senior Guideline Coordinator

Does that really leave enough time for people to submit responses to the consultation? Considering that a lot or the people wanting to submit responses suffer from ME...

 

[Andy]

Does that really leave enough time for people to submit responses to the consultation? Considering that a lot or the people wanting to submit responses suffer from ME...

I suspect it's just their standard time period

 

[Saz94]

I suspect it's just their standard time period

Yes but is it enough?

 

[Andy]

Yes but is it enough?

Well it will have to be as it's the time frame we have to work within. Would I, personally, want more time, to allow more pwME, whether on the forum or elsewhere, to consider the draft and submit a considered response - yes, of course. I have faith though that we, and the other stakeholders such as the MEA, AfME, MEAction, will be able to submit a response of some sort.

 

[Andy]

Reaction from IiME
https://www.investinme.org/IIMER-PR-20201101.shtml

 

[Adrian]

(a) BPS people trying to get it changed by arguing that GET is "evidence-based".

But its not because there evidence is meaningless and most of the world now knows and understands that. They relied on their status and networking skills to push the message to people who believed them and didn't look but once people look then trust is lost.

 

[Trish]

Threads are being set up for comments on the detail of the draft guideline that will then feed into the forum's submission in response. The threads are listed in the second post on this thread. They are in the Members only Advocacy Planning forum.

 

[Shinygleamy]

The only other issue to watch out for is the BPS lots efforts to rename ME and Chronic Fatigue Syndrome as MUS or FND. Once that happens the guidelines will no longer apply to the patient.

 

[FMMM1]

I am unfamiliar with the process from draft to publication. What is the likelihood of all the good stuff being revoked?

Really don't know much about this publication (draft guidelines). However, in general someone/working group is "selected" to look at the issue (prepare the policy paper); there is of course a context for the review --- concerns that the current guidelines ---. A report/document is prepared and I assume it is circulated so that the Minister etc. can prepare for the publication. At this stage, if the report is of concern, then it may be reviewed/revised! Think PESTLE here - political, economic, social, technological, legislation and environmental - i.e. to try to make sure the policy is sound. It is then made public i.e. consultation launched.

In this case, if there is a push to distance the Government from GET & CBT (and this is in the public/consultation document) then you can't easily reverse your position - you'd need an "evidence base" to reverse your position. In effect you'd need the Government to decide that it does not accept the recommendations of the "independent" review panel --- not something you'd want to be doing regularly; so really only something to do if the Minister really wants it done --- sacred cow stuff.

That of course ignores the human factors you are all to aware of - the reason the scientific method was developed in the first case!

While a report that looks positive will generally be the "chosen path"; you'd be wise to respond to the consultation. The vested interests (CBT proponents who benefit from the paid work) and the sacred cows [these people just need to be got out of bed of a morning --- whatever] will respond to the consultation - those who are content generally don't --- democratic deficit. The person drafting the response to the consultation has to review all of the crap and come to the "right" answer --- you want to "help" them. E.g. if there are responses saying no evidence base for --- evidence of impaired energy production (undermining GET) --- then that "helps" the person drafting the response to the consultation --- final guidelines if you like. If you don't respond to the consultation then it can be awkward for the reviewer e.g. if the numbers don't look good - 90% of respondents supported CBT/GET means the reviewer has to point out that 70% got paid (vested interests - supporting status quo) while the other 20% did not provide supporting evidence ---.

Folks on this forum are knowledgeable, so it should be possible to critically review the draft guidance --- if you're content then highlight that and why.

Don't just let the Government off the hook i.e. for being nice to you (revising the guidance) --- what are they doing for you? E.g. the Longcovids need support and a long term strategy to understand and treat their illness --- like people with ME.

 

[Keela Too]

Thanks everyone. We can't get into discussions about the specifics of the GL, as you all know, but I wanted to pop up and say that all your supportive comments for the lay members have really made this (very long) process worth it.

I second that.

I’d also like to say that, in the absence of being able to get into discussions, I have found the various thoughts, experiences and opinions expressed on S4ME (& other online spaces where ME peeps gather) to be a real bonus. I’ll not comment further, but please know I am still following these threads closely.

 

[Mike Dean]

The only other issue to watch out for is the BPS lots efforts to rename ME and Chronic Fatigue Syndrome as MUS or FND. Once that happens the guidelines will no longer apply to the patient.

Beat me to it. Leaving shapeshifting on one side, today is a good day.

 

[Hoopoe]

Having calmed down somewhat from the initial excitement, I tried to read through it more systematically.

Initial impressions. The guideline is a major step forward. It's hard to find fault with it, even if some parts still sound very biopsychosocial. That should be adressed because one of my concerns is that CBT/GET proponents will try to insert a backdoor for CBT/GET into the guidelines. I see many references to the "the therapist" or "therapy" throughout the document, as if it was a given that therapists had a central role to play. Unless in the context of psychotherapy or physiotherapy, this should say ME specialist and treatment.