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

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.

 

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

 

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.

 

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.

 

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/

 

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...

 

I suspect it's just their standard time period

 

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.

 

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

 

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.

 

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.

 

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.

 

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

 

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.