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

Jonathan Edwards said:
If it is designed to 'improve physical abilities' there is a claim of some therapeutic efficacy, which we do not have.
Click to expand...
Jonathan Edwards said:
Would the RCPCH agree that the briefing document fails to take into account the broad message of the guideline that exercise should not be used as a means to increase physical abilities because there is no evidence to indicate that it can?
Click to expand...
It all comes back to that. There simply is no robust evidence yet in favour of any benefit from any form of therapy. Clinicians and their representative bodies have an overwhelming professional and moral obligation to be straight with patients about the current state of affairs in this field.
 
Barry said:
I suspect the big problem there, is their fervent belief that clinical experience is robust evidence. I doubt they can see outside that blinkered view.
Click to expand...

Although it is not just clinical experience, but rather the clinical experience of one’s preferred in group.

The homeopath will believe in one set of clinical experience, as does the pharmacist in their set of clinical experience, as does the psychotherapist their preferred set of clinical experience, but each may be happy to dismiss the experience of the other as non evidential.

What is interesting here is that a variety of clinical experience groupings have joined across normally unacceptable boundaries in order to reject the NICE ME/CFS guidelines.

[edited - had forgotten I had already posted, and thought I was still composing]
 
Last edited:
Sean said:
Clinicians and their representative bodies have an overwhelming professional and moral obligation to be straight with patients about the current state of affairs in this field.
Click to expand...
Problem is, professional bodies is who will enforce those obligations.

So who forces professional bodies to enforce their own obligations? And will they? If the colleges basically just say "nuh uh, we are right, the dirty 'activists' are wrong". Which they are.
 
Graded exercise therapy for ME/CFS: finding consensus between the royal colleges, patients, and researchers

Brown S I

Graded exercise... Graded exercise therapy for ME/CFS: finding consensus between the royal colleges, patients, and researchers


BMJ 2021; 375 doi: https://doi.org/10.1136/bmj.n3026 (Published 08 December 2021)


The BMJ reports the royal colleges’ discontent with the new National Institute for Health and Care Excellence guideline on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS), particularly regarding graded exercise therapy (GET).12

The quality of the evidence and the rigour of its assessment are contested by the colleges, patient representatives, and researchers.34

In summary, the colleges emphasise the potential benefits of exercise for patients with ME/CFS, the patient community emphasises the potential harm that exercise can cause, and both communities quote research supporting their hypotheses, the quality of which is contested. Is there any agreement on the guideline?

Consider a patient with ME/CFS who, after attempting a therapy based on exercise, reports a worsening of their symptoms, sequelae which they regard as harmful. Should the treating physician interpret this as “the bodies [sic] normal response” and press on? Or should they defer to the NICE assertion that “treatment programmes that result in symptom exacerbation are not recommended” and abandon exercise based approaches?5

The guideline is quite clear: “Health and social care professionals should take time to build supportive, trusting, and empathetic relationships.”

Trust cannot be achieved if a patient believes the prescribed treatment is causing them harm. Surely royal colleges, researchers, and patients can all agree on this?

https://doi.org/10.1136/bmj.n3026
 
I haven't accessed the full text but I am assuming this is the meat of it.

I am not sure what point is being made.

The RCs would agree that trust will not be achieved if patients believe they might be harmed, but their view is that this is an unnecessary and unwarranted belief.

And the issue is irrelevant to whether or not a treatment without reliable evidence of efficacy or safety is to be recommended.
 
Haveyoutriedyoga said:
Graded exercise therapy for ME/CFS: finding consensus between the royal colleges, patients, and researchers

Brown S I
Click to expand...

This is a letter that is fully available as response to the BMJ news article 'NICE understates role of exercise and CBT in managing ME/CFS, say medical leaders':

https://www.bmj.com/content/375/bmj.n2647/rr-2

Authors:
Stuart I Brown
Researcher (Retired)#
Nina Muirhead
#MEAction Scotland
Kinross, UK
 
Jonathan Edwards said:
I am assuming this is the meat of it.

...

The RCs would agree that trust will not be achieved if patients believe they might be harmed, but their view is that this is an unnecessary and unwarranted belief.
Click to expand...
Yes, that does seem like the meat of it. Begs the question: How do you go about convincing them there is a sufficient risk of harms, and that patients apprehensions about the possibility are justified. The medics are so locked into their own beliefs, that their clinical experiences of what they perceive to be successes completely swamps in their minds the harms they never get to perceive.
 
Last edited:
Barry said:
Yes, that does seem like the meat of it. Begs the question: How do you go about convincing them there is a sufficient risk of harms, and that patients apprehensions about the possibility are justified. The medics are so locked into their own beliefs, that their clinical experiences of what they perceive to be successes, completely swamps in their minds the harms they never get to perceive.
Click to expand...

Worse, for some BPS HCPs regard reports of harms as further evidence of the patients’ mistaken beliefs!!

Edit to add - I have never heard this argument first hand, but it is out there as a reason not to take ME patients seriously!
 
You must log in or register to reply here.
Back
Top Bottom