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

I guess the #1 priority was to the the guideline through, and the RT put them in a position where they had nothing to scientifically substantiate their objections. Guideline published. Purging them of their false illness beliefs may take longer and more effort.

 

I suspect it simply demonstrates SMC's rather parasitic survival strategy ... switching to whichever side it thinks is safer to stick with.

 

On the NICE guideline page, https://www.nice.org.uk/guidance/ng206/chapter/Recommendations ...

Why are these two logos displayed at the end:


Why does the RCP warrant a plug on the NICE guideline page?

And why does NICE seem to be showing an accreditation for ... itself?

I'm sure there are sensible reasons, but I'd like to understand what they are.

 

https://www.rcplondon.ac.uk/news/medical-leaders-sign-joint-statement-response-nice-guidance-mecfs

From ...

And as for "However, we recognise that the phrase GET is unhelpful and this terminology should be dropped to allow clinicians to work with their patients in a more productive way." I think these folk need to be very careful what they wish for from now on. Cheap wordplay tricks will no longer protect you from legal action if you harm patients by going against the guideline.

 

It seems there is a new BACME members survey - the one cobbled together in August when the pause was announced.

 

A compromise was inevitable, and given that, I think what we got is a remarkably good compromise. The sulking and grumblings by the other side are testimony to that.

 

An interesting signatory:

How likely are they to appreciate that pwME respond abnormally to exercise?

 

Is there a copy of the NICE press release that went out yesterday somewhere in this thread?

In 2007, a copy of the press release was posted on the NICE site, once the embargo had lifted.

 

I think Paul Chrisp has made the classic mistake of management --- he hasn't been involved in the development of the guideline so he should shut up and let the people who were (and who impressed a challenging audience) speak.

Maybe there's a case for the management class to do the dark arts of spin --- but he seems to be making an idiot of himself --- I guess the chair of the NICE panel are cringing.

 

This was distributed to stakeholders yesterday:

 

Which always translates to "speech I agree with". See also: "evidence".

 

Interesting* @Nightsong
I haven't followed this closely but NICE reviewed the evidence for CBT & GET, re ME/CFS, and found it to be "low" or "very low" quality; logically there should be a review of "other conditions including chronic pain and fibromyalgia" i.e. which rely on these interventions. I'm a bit surprised that the Royal College of Physicians feels so confident that it's drawing everyone's attention to the issue.

*Many patients with ME/CFS have other conditions including chronic pain and fibromyalgia which are improved with exercise as recommended in other NICE guidance. [https://www.rcplondon.ac.uk/news/medical-leaders-sign-joint-statement-response-nice-guidance-mecfs]

@Caroline Struthers

 

Thank you, InitialConditions.

 

BMJ News

https://www.bmj.com/content/375/bmj.n2643

ME/CFS: Exercise goals should be set by patients and not driven by treatment plan, says NICE
BMJ 2021; 375 doi: https://doi.org/10.1136/bmj.n2643 (Published 29 October 2021)
Cite this as: BMJ 2021;375:n2643

Ingrid Torjesen

Author affiliations
London

Graded exercise therapy (GET) should no longer be used to treat patients with myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS), says the National Institute for Health and Care Excellence in long awaited updated guidance.1

Patients may still be offered exercise programmes provided they are not based on fixed incremental increases in physical activity or exercise. Instead, programmes should be based around person centred energy management, which is a self-management strategy led by the patient with support from a healthcare professional in an ME/CFS specialist team, the guideline advises.
Energy management should consider all types of activity (cognitive, physical, emotional, and social) that help patients learn to use the amount of energy they have, while reducing their risk of post-exertional malaise or worsening their symptoms by exceeding their limits.
Cognitive behavioural therapy has sometimes been assumed to be a cure for ME/CFS, the guideline acknowledges. Now it should be offered only to help people manage their symptoms, improve their functioning, and reduce the distress associated with having a chronic illness.
The final 2021 guideline shows a real change of emphasis from the previous guideline published in 2007, which said that cognitive behavioural therapy and GET should be offered to people with mild or moderate CFS/ME as the interventions with the clearest research evidence of benefit.2 Rather than a focus on specific treatments, the guidance says, people with ME/CFS should receive individual support tailored to agreed goals, and a range of approaches should be used depending on the patient’s preferences and priorities.
The final guideline is very similar to the draft recommendations published in 2020,3 which were welcomed by patient groups and their representatives who had lobbied for years for the 2007 guideline to be changed.4

New emphasis

In August this year the proposed final guideline prompted the resignation of three members of the guideline committee, and several royal colleges raised concerns about the advice and the processes used to review the evidence.5 As a result, NICE delayed publication.
The guideline was finally published on 29 October after a round table meeting held on 18 October with a range of patient and professional organisations to discuss the concerns. The recommendations are unchanged, but there are differences of emphasis. The final October guideline highlights more clearly that GET means exercise programmes involving fixed incremental increases in the time spent being physically active and that cognitive behavioural therapy can still be used to support patients with ME/CFS but not offered as a cure.
Commenting on the final guidance, Alastair Miller, a consultant physician in infectious disease and internal medicine and previous clinical lead at the Royal Liverpool University Hospital CFS service (2006-14), said, “It is unfortunate that NICE continue to misrepresent GET as ‘fixed incremental increases in physician activity or exercise,’ whereas in practice the approach in most CFS/ME clinics has always been to tailor increasing activity to the individual’s needs and requirements in line with their current recommendations.
“It is unfortunate that so much emphasis is given to working ‘within current energy limits’ rather than a gentle and controlled pushing of those limits. However, it is to be welcomed that clinics will still be able to provide appropriate personalised activity and exercise programmes for those patients in whom it is felt to be appropriate.”

Relieving symptoms

The final guideline emphasises that while ME/CFS symptoms can be managed, the condition currently has no cure, either pharmacological or non-pharmacological.
Miller, previously principal medical adviser for Action for ME (2010-16) and former chair of the British Association for CFS/ME (2013-16), commented, “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.”
Trudie Chalder, professor of cognitive behavioural psychotherapy at the Institute of Psychiatry Psychology & Neuroscience at King’s College, London, said, “The NICE guidelines for CFS/ME are at odds with the research evidence. Researchers from different institutions in different countries have found graded exercise therapy and cognitive behaviour therapy to be effective for some patients with CFS.
“Evidence has shown they reduce fatigue and improve functioning without harm, if delivered by trained therapists in specialist clinics. Being a clinician and researcher in this field, I can’t help but think clinicians will be confused by this message from a respected organisation.”
The final guideline lists the symptoms of ME/CFS as debilitating fatigue that is worsened by activity, as well as post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties (“brain fog”), and it says that diagnosis can now be confirmed after three months rather than six months of persistent symptoms. The guideline committee agreed that removing this delay to diagnosis might enable earlier management and could potentially improve longer term outcomes.

Better acceptance

Charles Shepherd, medical adviser to the ME Association and a former member of the guideline committee, said, “This is a very special day for people with ME—publication of a new, evidence based NICE guideline which confirms that this is a serious and very debilitating medical disease.
“I welcome the emphasis on early and accurate diagnosis and the need to provide early guidance on symptom management when people are not recovering from a viral infection and a diagnosis of ME is suspected.”
Shepherd was “stood down” from the committee by NICE in August because of “continuing conflicts of interest” related to “providing information and commenting on key issues of concern to the ME/CFS patient community” while serving on the guideline committee.6
David Strain, medical adviser at Action for ME, said, “The guideline should drive better acceptance of ME as a serious medical condition and encourage doctors to personalise care based on individual needs. It is a real opportunity for doctors to transform the care patients receive.”

 

https://www.bmj.com/content/375/bmj.n2647

NICE understates role of exercise and CBT in managing ME/CFS, say medical leaders

BMJ 2021; 375 doi: https://doi.org/10.1136/bmj.n2647 (Published 29 October 2021)Cite this as: BMJ 2021;375:n2647

Medical leaders have questioned the updated guideline from the National Institute for Health and Care Excellence (NICE) on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) for downplaying the importance of activity and exercise in managing the condition.
They say that the guideline understates the connection between mental and physical health, does not reflect how exercise therapy is used in practice, and fails to represent the positive discussions that leaders have had with patient groups.
The guideline was finally published on 29 October,1 after NICE delayed its publication because three members of the committee overseeing its production resigned in August and royal colleges raised concerns about the recommendations and processes used in developing it.2
NICE said that graded exercise therapy (GET) should no longer be used to treat ME/CFS but that exercise programmes could still be offered, provided they were based on patients’ energy levels and led by them rather than by a graded plan. It also said that cognitive behavioural therapy (CBT)—which had in the past been seen as a cure for CME/CFS—should be offered only to help people manage their symptoms and reduce the distress associated with having a chronic illness.

Joint statement

In their joint statement seven heads of royal colleges and faculties 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.
“As in many chronic conditions, people’s mental and physical health are intrinsically linked. This guidance risks undermining the importance of these links by dismissing the potential of treatments such as CBT as of less value in alleviating symptoms than pharmacological interventions.”
The leaders, who include Andrew Goddard, president of the Royal College of Physicians, Martin Marshall, president of the Royal College of General Practitioners, and Adrian James, president of the Royal College of Psychiatrists, said that while there was disquiet among doctors and some patient groups about how the evidence for the guidelines was assessed, “the important thing now is that services are commissioned in a safe and effective way that does not disadvantage any patients being treated now or in the future.”
They pointed out to those commissioning services that “GET as defined in the guidance is not reflective of the personalised paced exercise programmes that are currently used in the NHS and termed GET. These have provided benefit to many patients and should not be discontinued. However, we recognise that the phrase GET is unhelpful and this terminology should be dropped to allow clinicians to work with their patients in a more productive way.”
They said that CBT remained a valuable treatment for alleviating symptoms in ME/CFS and that services should ensure that patients have access to this and other psychological therapies.
The statement also highlighted the role of specialist rehabilitation medicine services and exercise medicine services in looking after patients with ME/CFS—something that the NICE guidelines omitted to mention and which could mean patients lose out on care if these are not used.
The leaders emphasised that training must be made available for everyone involved in the care of people with ME/CFS and that GPs and other clinicians must be able to access these professionals.
“Many patients with ME/CFS have other conditions including chronic pain and fibromyalgia which are improved with exercise as recommended in other NICE guidance,” they said. “It is important that a holistic approach is taken to ensure that other conditions do not deteriorate.”
The signatories to the statement were:

Andrew Goddard, president of the Royal College of Physicians

Andrew Elder, president of the Royal College of Physicians of Edinburgh

Martin Marshall, president of the Royal College of General Practitioners

Adrian James, president of the Royal College of Psychiatrists

Helen Stokes-Lampard, chair of the Academy of Medical Royal Colleges

John Etherington, president of the Faculty of Sport and Exercise Medicine, and

Steve Nimmo, president of the Faculty of Occupational Medicine

 

Has the grading of the different CBT/GET studies been published? Could be interesting to know if these studies has been used by Larun et al META study.

 

Of course I agree it’s ludicrous. However, isn’t it possible the Bedford clinic has been able to come up with such rubbish as a graded activity management plan due to the guidelines still suggesting a person with ME can eventually aim to increase activity albeit now with the important caveat in one place in the guidelines of trying to do this whilst remaining within the individual’s energy limits. I appreciate the language of increasing activity and reference to exercise programmes was probably the compromise with the bps guideline committee members. I look forward to the day when harmful compromise is no longer required.

 

Stop bragging everyone will be trying to get blocked --- badge of honour!

 

As the NICE guidelines are classed I believe as advisory and not binding, would this weaken citing them in any court case by an individual claiming harm by being prescribed GET?