NICE Health topics: Tiredness/Fatigue in adults (includes CFS).

Will wait til I hear from Matt Westmore and the HRA before answering. I now regret mentioning the data issue as it allowed FW to focus on that, take credit for the changing the landscape, and deflect attention the main point of my letter. Ah well. I can be more specific about that next time.

 

Following on from my post here: https://www.s4me.info/threads/publi...t-of-20-october-2021.22867/page-8#post-385019

Apols if anyone else has already addressed this.

The Clinical Knowledge Summary (CKS) on Tiredness/Fatigue in Adults has now been updated, but maintains its complete erasure of any mention of ME. It refers only to CFS.

Although it references the new guideline NG206, it also references Fukuda (1994).

The management summary is here: https://cks.nice.org.uk/topics/tiredness-fatigue-in-adults/management/management/

 

links to AfME https://www.actionforme.org.uk/uploads/newly-diagnosed-booklet-dec-15.pdf

from 2015 which is also out of date and ends with
"
Action for M.E. is enormously grateful to everyone who has contributed to this
booklet, including:
•
Dr Alastair Miller, Chair, the British Association for CFS/M.E"

 

It could be worse - at least it makes no mention of GET or CBT.

Looks like @Action for M.E. have now removed the booklet from their website (presumably pending update) - but not the url path to the pdf.

[I've emailed them]

 

Seems like they are trying to undermine the NICE 'pattern of symptoms' of ME/CFS that the new guidelines have established, specifically the need for PEM to be present. They continue to fixate on the single symptom of chronic fatigue.

Then they want to ensure the specialist ME/CFS clinics continue to have referrals from patients with unexplained 'tiredness/fatigue' so that nothing changes for PWME with PEM, who would likely form a minority of the referrals (because the clinics still won't learn what is different about ME compared to idiopathic chronic fatigue, or fatigue that is a result of other chronic illnesses). This will mean that supposedly specialist ME/CFS clinics won't have the necessary capacity to do the extra work resulting from the new NICE guidelines, such as home visits for severe patients, drawing up detailed care and support plans, longer term reviews etc. Funding will be spread thinly amongst all 'chronically fatigued' patients with the most severe and the long term ME/CFS patients being the ones to lose out (as has historically been the case).

This decision for this is based on the clinical experience of the previous reviewers of the CKS for 'tiredness/fatigue', over-riding the significance of the changes in the new NICE ME/CFS guideline, that took 4 years to develop and was based on an independent review of the scientific and patient evidence. This seems so underhand, are NICE not able to show a strong hand in this?

 

people can leave feedback without having to give their name or register.
https://www.nice.org.uk/leave-feedback

 

It also links to the awful recommendations of the new NICE Chronic Pain guidelines, not the NICE guidelines on Neuropathic Pain and the guidelines on headaches for over 12s that the new NICE ME/CFS guidelines link to! So this has clearly been written by some of the stakeholders who disagreed with the new NICE ME/CFS guidelines. There is some serious underhand manipulation of wording and links, which show a refusal to implement the new NICE recommendations for ME/CFS going on.

If you follow the links to the CKS topic on Chronic pain, you can see which guidelines they are basing the pain recommendations for CFS on.

 

Is it possible to get it changed on this basis? Is there a procedure for this to be changed?

 

https://www.actionforme.org.uk/get-information/what-is-me/what-does-me-feel-like/

Oops. They've now restored the link. Sorry. That wasn't my intention. I hoped that they would at least indicate that the new guidance said something different. They said they would update NICE (about the CKS pages and their link) once they have updated the booklet, but in the meantime they felt that it might be useful to leave it there. Ah well. Let's hope they do it soon.