Articles on NICE guidelines 'pause'

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Sly Saint

Sly Saint

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Charities dismayed as move to stop recommending graded exercise therapy is opposed by some medical groups
The National Institute for Health and Care Excellence (Nice) has withdrawn long-awaited landmark guidance on ME hours before its planned publication amid a backlash from medical groups.

Charities and patient groups fighting for greater recognition of the poorly understood condition as a medical illness rather than a psychological problem had welcomed the planned guidance, which was due to stop advising doctors to administer a controversial therapy.
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https://www.theguardian.com/society...s-new-me-guidance-therapy-row-chronic-fatigue
 
A health watchdog has been accused of “capitulating to vested interests” after it paused a planned change to guidelines on the diagnosis and treatment of chronic fatigue after outcry from some doctors.

The National Institute for Health and Care Excellence (Nice) was preparing to publish new advice on managing chronic fatigue, or myalgic encephalomyelitis (ME) which would have said exercise therapy and cognitive behavioural therapy should not be used with most patients.

The planned advice was criticised by some, with four members of the committee responsible for drawing up the guidance resigning in recent weeks.

On Tuesday, Nice said it was pausing the publication after issues had been raised.
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https://industrinews.com/health-wat...over-chronic-fatigue-as-it-delays-new-advice/
 
This article also seems to be breaching the press embargo: “Nice last issued recommendations on ME in 2007. New final guidance, seen by the Guardian and roughly in line with a draft report published last November, would have abandoned the GET recommendation and also advised that CBT – a talking therapy commonly used to treat anxiety and depression – is not curative for ME.”
 
Dr Alastair Miller, a consultant physician in infectious disease and internal medicine and a former principal medical adviser for Action for ME, warned that “without CBT and GET, there is nothing” and added: “It is difficult to say where we go from here.”
Miller said: “The draft guidelines were predicted to stop the use of GET and limit the use of CBT which have served most chronic fatigue syndrome/ME clinicians and patients well for many years and were endorsed by the Nice guidelines in 2007. Most NHS clinicians use GET and CBT and have done so for a long time.

“Importantly, without CBT and GET, there is nothing. No new therapies or approaches have emerged since 2007, so in practice one needs to question whether there was ever a requirement to have a new guideline.

“If the professional bodies that represent those who care for these individuals were not prepared to support the guideline, this may have made Nice think again. It is difficult to say where we go from here. There are some amongst the charities and patient groups that are utterly opposed to CBT and GET, and so compromise and consensus may be difficult to achieve.”
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https://www.ncic.nhs.uk/consultants/alastair-miller

A pretty weak argument from the Deputy Medical Director of the Joint Royal Colleges of Physicians Training Board (JRCPTB).
 
“Importantly, without CBT and GET, there is nothing. No new therapies or approaches have emerged since 2007, so in practice one needs to question whether there was ever a requirement to have a new guideline.
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Correct, this is literally because of your garbage pseudoscience. But of course they can't even understand this. But this needs to be repeated every time someone trots out this damn line: yes, there is nothing else and it's your fault for squatting the damn place, now step aside so the real work can get started.

What a jerk.
 
chrisb said:
It is interestingto see Alastair Milla r in that Guardian article in effect calling upon the "therapeutic nihilism" excuse. Plus ca change.
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Yea he's ignoring the fact that in illness like Alzheimers there are no diagnostic tests or treatments (think that's still true in the UK) and that the answer is research e.g. GWAS. It's not a case of sticking with things we know don't work - there are options i.e. research. OK research doesn't give Doctors a treatment today - but as @Jonathan Edwards a Doctors role is to diagnose and treat --- and to say -- there is no evidence based treatment --- where that is the case.

Sorry I hope I'm not misquoting Jonathan.
 
Alistair Miller said:
Miller said: “The draft guidelines were predicted to stop the use of GET and limit the use of CBT which have served most chronic fatigue syndrome/ME clinicians and patients well for many years and were endorsed by the Nice guidelines in 2007. Most NHS clinicians use GET and CBT and have done so for a long time.
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When all the patient charities (well, almost at least?) are in agreement with the new guidelines, and there have been numerous testimonies and even papers written on the harm of these treatments, how is it possible to say it has served the patients "well"?

Alistair Miller said:
“Importantly, without CBT and GET, there is nothing. No new therapies or approaches have emerged since 2007, so in practice one needs to question whether there was ever a requirement to have a new guideline.
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Change this with a drug where serious side effects have been discovered and see how much sense it makes.

Alistair Miller said:
“If the professional bodies that represent those who care for these individuals were not prepared to support the guideline, this may have made Nice think again. It is difficult to say where we go from here. There are some amongst the charities and patient groups that are utterly opposed to CBT and GET, and so compromise and consensus may be difficult to achieve.”
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It is not the patients that are causing an issue here!
 
Allister Miller has a vested interest, due to his intricate involvement with the PACE trial (quote from 2011):

Dr Alastair Miller, Consultant Physician at Royal Liverpool University Hospital, Clinical lead for CFS services in Liverpool, Independent assessor of trial safety data for PACE trial and Principal Medical Advisor, Action for ME, said:

“Although NICE have previously recommended graded exercise and CBT as treatments for ME/CFS, this was on the basis of somewhat limited evidence in the form of fairly small clinical trials. This trial represents the highest grade of clinical evidence – a large randomized clinical trial, carefully designed, rigorously conducted and scrupulously analysed and reported. It provides convincing evidence that GET and CBT are safe and effective and should be widely available for our patients with CFS/ME.

“It is clearly vital to continue our research into biological mechanisms for ME/CFS but recent ‘false dawns’ for example, over the role of retroviruses (XMRV) have shown how difficult this can be. In the current absence of a biomedical model for the causation and the absence of any pharmacological intervention, we have a pragmatic approach to therapy that works and we should use it.”
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https://www.sciencemediacentre.org/...reatments-for-chronic-fatigue-syndromeme-2-2/

Edit: Just laughed when I imagined how @dave30th would report this...
 
Sly Saint said:
Article in Telegraph

might need subscription
Health watchdog pauses plans to scrap therapy and exercise as treatments for ME

Nice delays publication of controversial guidelines on diagnosing and managing the condition following backlash from doctors

https://www.telegraph.co.uk/news/20...uses-plans-scrap-therapy-exercise-treatments/
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I had to keep refreshing to be able to read it as I'm not a subscriber but I managed to read it. It's better than the Guardian piece.
 
BBC Outrage at chronic fatigue syndrome advice update pause

quote:
Andrew Goddard, president of the Royal College of Physicians, said: "We were extremely concerned that the final guidelines proposed by NICE may not have taken into consideration the extensive comments we made to the draft version, particularly in relation to treatments we know to have significantly benefited many patients.

"There is reasonable evidence, for example, that graded exercise therapy helps a group of patients with ME/CFS and, while not without risk, our experts strongly support its ongoing use as an option in this condition.

"Similarly, our experts would strongly recommend specialist individualised rehabilitation for patients with complex rehabilitation needs.

"We hope that in delaying the final publication of these guidelines, NICE will re-consider our evidence submitted and incorporate it into their final publication."
 
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