Petition: #MEAction: Publish the NICE ME/CFS Guideline Now

Andy

Andy

Retired committee member
"We call on the National Institute for Health and Care Excellence (NICE) to publish the finalised ME/CFS guideline in its current form.

People with ME are depending on the finalised guideline to transform the care they receive: ensuring accurate diagnosis, appropriate symptom management, and access to the best support available.

However certain medical Royal Colleges have informed NICE they will refuse to implement these improved guidelines. They demand that graded exercise therapy is included as a recommended treatment. Yet evidence demonstrates this harms most people with ME, and all evidence supporting use of this therapy was deemed to be of low or very low quality by the independent NICE guideline committee.

With less than one day to go, NICE capitulated to these vested interests and delayed publication.

This three year, multi-million pound, pre-defined process has assessed all available evidence in depth, and given ample opportunity for the Royal Colleges to respond to consultations. NICE confirms it “has used its usual rigorous methodology and process in developing this guideline.”

The power and beliefs of a few must not stand in the way of evidence.

We urge NICE to take the courageous and ethical step of publishing the finalised ME/CFS guideline immediately, and call on the Royal Colleges to work collaboratively with patient organisations to implement it."

https://www.change.org/p/the-nation...ellence-publish-the-nice-me-cfs-guideline-now
 
The new one is more neutrally worded and I am presuming that MEAction was a stakeholder in the guidelines so will have seen the final version. I was more comfortable asking family members to sign the latest one for this reason (though don't know if they will actually bother, they have no interest in my ME now I am housebound and can't go out to visit them).
 
Sean said:
Indeed. On balance I think it better to publish it. But nervous about doing that too. :confused:
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I think after what the Royal Colleges have done any compromises that have been made in the final draft from a patient perspective could be challenged as just that: 'compromises unsupported by the evidence, made to help achieve a consensus'. In some ways this might leave the door open for the 2021 guideline to be firmed up in future reviews, especially as more biological science is done.

I would also like to see our charities working with all the new/updated ME/CFS services to work out methods of recording objective improvements, deterioration and harms. So that we have much more robust evidence of outcomes from these clinics going forward.
 
If NICE don't publish the new guideline we are stuck with the old one indefinitely. Our community needs to see it. NICE have played right into the hands of the Royal Colleges by delaying - they hold every ounce of power to make it worse now unless NICE reverse their decision.
 
Gecko said:
If NICE don't publish the new guideline we are stuck with the old one indefinitely. Our community needs to see it. NICE have played right into the hands of the Royal Colleges by delaying - they hold every ounce of power to make it worse now unless NICE reverse their decision.
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Do we actually know the legal status of both the old and the new guidelines? Given the new guidelines went through every step of being adopted except publication, presumably the old ones have been declared in some way inadequate and the new ones also have some sort of legal standing.

I would suggest we are now in some sort of limbo state without any actual guidelines.
 
Hutan said:
I've signed and will be encouraging people I know to sign it, as what happens with the NICE guideline affects people with ME/CFS everywhere.

Does anyone know, can organisations like patient charities sign, or is it only individuals?

Over 1500 now.
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I think these petitions are aimed at individuals, but certainly accept and welcome international participation where this affects them too. So worth sharing on social media and amongst all ME/CFS charity/group membership around the globe.
 
Hutan said:
I've signed and will be encouraging people I know to sign it, as what happens with the NICE guideline affects people with ME/CFS everywhere.

Does anyone know, can organisations like patient charities sign, or is it only individuals?

Over 1500 now.
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NelliePledge said:
@Gecko maybe can help?
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Aimed more at individuals but if you want to sign as an org more than happy for you to put in the organisations name and if so I'd email uk@meaction.net to let us know - doubt we're gonna manage to comb through all signatures to find the orgs.
 
A comment from an Australian signee
This rapid response to BMJ sums up my reason for signing along with the fact that GET harmed me.
Dear Editor,

as you are well aware, there is no requirement for NICE guidelines to reach a universal agreement. The entire reason for an independent process like NICE is to assesses the evidence and rely on that assessment to guide recommendations, hence "guide lines". The entire process had concluded and was just about to publish, showing that there had been ample agreement. The draft guidelines were published last November, giving almost a full year to everyone involved, giving this last minute reversal an air of serious undue influence.

So it is frankly bizarre that BMJ assert that it is "lack of agreement" that is at issue, when it does not apply in this context. The flawed 2007 NICE guidelines on ME/CFS did not have universal agreement and neither do the new and very controversial NICE guidelines on chronic pain. The NICE process relies on evidence. It has found that the evidence for the 2007 guidelines, as well as all other relevant evidence since, was of "low quality" to "very low quality", clearly prematurely put into formal guidance based on a handful of low quality experiments. Quantity does not trump quality, and so this is where the evidence stands, largely because of decades of holding on to a failed model. A failure that has grown significantly with the impact of Long Covid, which medicine is unable to deal with because of that failed paradigm blocking all progress on an issue so dismissely labeled as "chronic fatigue".

If medical professionals do not agree to follow formal evidence, they are responsible for their own career decisions and their employers are expected to deal with recalcitrants as they choose. However it is a significant concern for professional associations to do so, as it puts into serious jeopardy the independence of NICE and the very role of evidence in evidence-based medicine: that it can be dismissed with arbitrary prejudice. It genuinely puts into question whether evidence is even relevant in evidence-based medicine, clearly second to eminence-based medicine.

As part of the NICE review process, only one delay is allowed. There has already been a delay. Calling a delay a "pause" does not make it less of a delay. So, in fact, NICE is in breach of its own rules and process in caving in to undue influence behind the scenes, an issue which threatens the credibility of the whole process. Because why have a process at all if can be cancelled by political pressure behind the scenes, without accountability?

Please do better in your reporting of this issue in the future, it has been generally sub-par and biased and continues to be.

Competing interests: No competing interests

17 August 2021
Richard Vallée
None
Prévost, Canada
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@rvallee
 
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