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

I thought the saying was: "A half truth is a whole lie".

 

It can sometimes amount to 100% opposite of truth.

 

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.

 

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]

 

as it is 'the festive season' I am reminded of the song
'Father Christmas do not touch me'.

(the Goodies did a version)

 

The version I learned was “Oh Sir Jasper do not touch me!”
Same premise of each verse dropping one more word than the last.
And believe it or not, it was sung at a Girl Guide camp fire!!!

 

That's actually quite horrifying! Though, also incredibly helpful advice for girls at a certain time in history. Sadly.

 

Sorry just to complete the story, I’ve just remembered the chorus. It went . . .
“As she lay between the lily white sheets with nothing on at all!”

 

Did we not all know the chorus?

 

Obviously we are going to have to cross off having had an overly sheltered childhood as a cause of ME.

 

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.

 

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

 

Thanks.

I think the problem is that it is perfectly possible that a treatment might exacerbate symptoms early on and yet be beneficial. So the question posed isn't appropriate.

It turns out that there is no long term benefit as far as we can see. That is what matters.

 

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.

 

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!

 

Agreed. And I think the truth is that it's clinicians who have faulty beliefs here.