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

Forestvon said:
Is the word Graded Activity management mentioned in the new guideline?
Bedford fatigue clinic website just changed GET to GAM.
https://www.elft.nhs.uk/service/419/Bedfordshire-Chronic-Fatigue-Service
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This service offers NICE recommended Cognitive Behaviour Therapy (CBT) and Graded Activity Management (GAM).
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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
"We also do not think the changes represent the positive discussions that have been had with patient groups."
Which patient groups are these? Are they referring to the RT?
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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:

NICE GUIDELINES - TAKING US FORWARD TO 2007

The National Institute for Health and Care Excellence (NICE) has today (29 October 2021) released a statement [1] to announce the publication of the new updated guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Now designated ng206, the guidelines document [2] of 2021 replaces the flawed NICE guidelines published in 2007 (CG53) [3].

It would be easy to create a few popular soundbites and make positive noises about these guidelines and how they will change the lives of people with ME.
Yet it may be more prudent to add realism to the discussion – based on experiences from years of consistent campaigning to build a better future for those affected by this disease.

… … …

The 2021 guidelines could have been written in 2007, such has been the lack of progress. In fact, had NICE listened to patients then and provided the 2021 guidelines in 2007 then much of the ignorance, stigma, clinician-patient antagonism, severe harm to and possibly even deaths of people with ME could have been avoided.

Instead, people with ME have had to live with this dystopian healthcare provision in the UK.
They have had to endure establishment games for 14 years since the previous 2007 guidelines for ME were published. Fourteen years of the harm caused by flawed NICE guidelines, fourteen years and more of the MRC’s god-forsaken “expert” panels and barren and disingenuous ‘collaboratives’, fourteen years of UK CMO ignorance and apathy, and decades of entrenched views among royal colleges and institutes which had no basis in reality but managed to support the careers of some.
It must not continue.

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

As in many chronic conditions, people’s mental and physical health are intrinsically linked.
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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.
 
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Jonathan Edwards said:
It would be interesting to know how health care professionals in other countries respond to the situation. Do other countries just take note of NICE as a reputable source or do they take note of the toy throwing as well?
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In Norway the competence center has said that NICE guidelines might not influence ours (I think in responce to updating our own guidelines in light of NICE guidelines, perhaps even after the draft was out. Do you remember @Kalliope ?)
 
TiredSam said:
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?
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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.
 
Jonathan Edwards said:
Do other countries just take note of NICE as a reputable source or do they take note of the toy throwing as well?
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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.
 
Midnattsol said:
In Norway the competence center has said that NICE guidelines might not influence ours (I think in responce to updating our own guidelines in light of NICE guidelines, perhaps even after the draft was out. Do you remember @Kalliope ?)
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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
 
Ariel said:
I was actually wondering who or what the intended audience was for their statement. Who was it for?
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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.
 
Mithriel said:
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.
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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.
 
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Jonathan Edwards said:
It would be interesting to know how health care professionals in other countries respond to the situation. Do other countries just take note of NICE as a reputable source or do they take note of the toy throwing as well?
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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/
 
Medical leaders said:
The published guideline contains some positive changes, but these do not go as far as we would have liked and understate the importance of activity and exercise in the management of ME/CFS and the connection between people’s mental and physical health. We also do not think the changes represent the positive discussions that have been had with patient groups.
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[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.
 
Wonko said:
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.
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It's not in the new guideline. That reference to graded activity management was from a clinic and published before today, so presumably compliant with the old guideline.

Jonathan Edwards said:
and there is also evidence from case studies and one RCT that some patients report benefit from LP

And Mrs Wentworth at the Tesco counter said so too. It must be true.
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You left out the man in the Clapham omnibus. His evidence is vital.
 
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