UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

What is this "NICE recommended Graded Activity Management (GAM)" of which they speak? Just a rebranding of NICE's 2007 recommendations? Are they trying to GAMe the system with their new name?

 

Nightsong said

That will be the Sussex and Kent group run by Colin Barton which is firmly BPS, funded and with Alistair Miller (I think) as medical advisor.

People with ME avoid the group like the plague.

 

I don’t think this has yet been shared, Invest in ME Research’s less than enthusiastic statement/press release on the new guidelines:

see https://www.investinme.org/ng206-gu...tmu8LVT_esYRCeoogavy5iYFCIshZT1-kBX8DlEQWvKtw

 

I was actually wondering who or what the intended audience was for their statement. Who was it for?

 

“They say that exercise [or] activity cannot be regarded as a ‘cure’ for CFS/ME, and yet they accept that it may relieve symptoms. There is no such thing as asymptomatic CFS/ME; therefore, if you have no symptoms you have no disease.” from Miller.

Difficult to think of anything more incoherent and irrelevant?

 

People have been suffering badly under the old guidelines, which were fine by them.

Now there are new ones, which include a careful review of the evidence (which they hate for personal reasons), and that are celebrated (or semi-celebrated because not enough/there's been so much pain and neglect) all over social media and the internet en masse, and they have the nasty guts to use the 'concern' for so-called anonymous "patients" as an argument things should stay as they are?



Also

I'm looking at the time when this was just an ideology of a nasty section of fringe ableist and misogynist psychiatrists, and a weak argument to justify psychiatry getting in on ME treatment.

It never ceases to amaze me how far healthcare has fallen.

 

Well that's true. When people with physical health problems are treated abusively and gaslighted, they can get pissed off.

 

Ministerial minions what give them millions.

 

I'm still hung up on the idea that activity management needs to be 'graded'. and what sort of person would think this is better than 'activity management' advice.

 

It is possible to submit Rapid Responses to the above. I don't currently have access to the rest of the report.

 

I reckon they're likely to regard NICE as a reputable source, but heed the warning in the toy-throwing. It's hard to imagine they don't know what's going on, for example the Colleges making unsourced references to consultations with unnamed patient groups, and NICE having conducted real and extensive consultations with named ones.

But it may create a level of caution in countries with established BPS lobbies, and that could result in delays to any policy shifts.

 

only vaguely. it will be interesting to see if they'll adjust anything. I'm not holding my breath.

When it comes to @Jonathan Edwards 's question, there are two articles so far in Denmark about the NICE guideline. Haven't seen anything yet from Sweden or Denmark.

One of the Danish articles is paywalled and from the newspaper Politiken. It appears quite horrible. "No more exercise for chronically tired" in the title, and the article begins with claims of patient activist having threatened professionals.

The other one is better. It's from a medical news site who has interviewed the leader for the Danish ME Association about the publication of the NICE guideline. It also says that Per Fink didn't want to comment today's guideline, but quotes him from last year when he was very upset over the draft version.
Sundhedspolitisk Tidsskrift: ME-patienter verden over har fået kæmpesejr i dag
google translation: ME patients around the world have had a huge victory today

 

I'd guess doctors, GP's, their members, journalists and the general public (I'm sure it'll be used as a press release), basically the network that can uphold their status quo for a while by being influenced.

The names (Royal Colleges of X) are a brand, so whatever they say seems to carry weight.

 

Yes, Miller and Crawley and Professor Leslie J Findley, among others.


https://measussex.org.uk/malmaison-conference-oct-29th-october/

MALMAISON CONFERENCE OCT 29TH – OCTOBER
By admin On 21st October 2021

Dr Gabrielle Murphy at Royal Free Hospital says: “Once again the Sussex & Kent ME/CFS Society is hosting a conference that leads in its platform of speakers, all at the forefront of research and clinical delivery of services in the United Kingdom. It is a particularly important conference in the light of what we have learnt and are still learning about Covid-19, and its long-term effects as a post infection syndrome, and of course the publication of the new NICE guidance on ME/CFS. Top of the topics are interoception and what has been learned since the early work over a decade ago, and new light shed on inflammatory markers and gene expression. It really is a conference not to be missed.”...


Mod note: A conversation about the origins of the conference centre name has been moved to
A thread of no importance. Post something completely inconsequential.

 

There is a guideline on ME/CFS being prepared in the Netherlands and the plan was to take the NICE guideline as a starting point.

I think something similar will happen in Belgium for a new deal between the government reimbursement and CFS centres: the NICE guideline will have some influence on it.

 

Disappointed by the statements of the royal colleges. BACME seemed ok to work with the new guideline.

Nonetheless, I think the publication of this new guideline is an important change for the ME/CFS community. Evelien and I have written a blog post to put things in perspective. It's mostly written for people who do not know the whole background for example friends, family, and acquaintances.

A historic change for the ME/CFS community
Today, on 29 October 2021, the National Institute for Health and Care Excellence (NICE) has finally published its new guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The development of the guideline has been a long process mired with controversy, criticism, and unexpected delays. Its final publication, however, represents a historic change for the ME/CFS community. This blog post tries to clarify why.

Full text: https://mecfsskeptic.com/a-historic-change-for-the-me-cfs-community/

 

[my bold]

This clearly illustrates why the new guideline is so desperately important. They truly do not "get it". They are the greatest risk to pwME, and have been all this time. From this point on they might also be the greatest risk to themselves, from a purely legal perspective.

There is something very important these dinosaur physicians need to take on board - potential for future litigation. Until now lawyers will have seen a very low chance of successful outcomes, given the old NICE guidance. But now, even though some medics might think there to be some loopholes they can exploit regarding "individualised" treatments, the fact is the new guideline makes ii much clearer what medics must not do. So if patients from here on feel they have been harmed by these clinics, then a successful prosecution might have a much higher probability. Weaselly words and sleight of language cut little ice in a court of law - if it can be demonstrated that no matter how you might try to frame what you have done to a patient, it ultimately amounts to contravening the guideline, in the full knowledge that it does, then you may well get sanctioned.

The clinics and the NHS need to be very aware of this.

 

Good summary @Michiel Tack!

Also handy for social media purposes.