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

If people are going to be sloppy, you can't control that. Also, those who break the rules will break the rules--adding more rules won't really stop them if they've already set their hearts on it.

At a certain point, you have to assume good faith going forward.

Medical education is how we assure that well-meaning but misled or misinformed people don't keep breaking the rules. People like Miller are always going to try to do whatever they want.

 

Learning to live with CFS/ME (sic) is the best way to help patients to create the optimal conditions to recover from it, implying that there is a conflict between accepting your limits and recovery, when in fact accepting your limits is the best way to maximise your chances of recovery, is a last gasp attempt by veteran activist and ME denier Peter White to continue to inflict his failed ideology with his usual dishonest and manipulative use of language.

Soon he'll just be a tweet in the twittersphere, ranting on to the few remaining people he hasn't blocked yet. Has he read the guideline? NICE have read all his papers, and found them all to be of low or very low quality. But I'm sure he'll carry on embarrassing himself, what else can he do?

 

https://www.nice.org.uk/guidance/cg53

Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management
Clinical guideline [CG53] Published: 22 August 2007

Guidance

This guideline has been updated and replaced by NICE guideline NG206.

 

And from the roundtable, it seems that BACME is ready for the shift. I honestly see that as a huge watershed.

People will always find something to misinterpret. They'll always look for a loophole. There was lots of good stuff in CG53 which they chose to ignore.

That will always be a problem, and that's why this was only ever going to be one (giant) step forward and not the end of our troubles.

 

Pretty sure the lovely PDW doesn't do Twitter, though Prof M Sharpe does.

ETA: Sharpe does not have me Blocked. He's said nothing yet re publication of NG206.

 

I have created a thread to share and analyse/discuss the information obtained from my FOI request about the decision by NICE to pause the guideline.

https://s4me.info/threads/foi-reque...lay-publication-of-the-final-guideline.23023/

 

Has a copy of the NICE media release that went out yesterday been posted on the NG206 pages? I've not so far been able to find a copy?

 

I can never remember which one is which, and simply can't be bothered to make the mental effort to distinguish between the two. They are simply not worth it. I just think of them as a pair, like Tweedle Dum and Tweedle Dee. One of them is always on twitter saying "have you read the paper" - so that one is the one who should get a tweet back saying "NICE have read all yours". Perhaps I should think of them as Tweetle Does and Tweetle Doesn't, that might help.

I'm normally meticulous about detail and accuracy, but I seem to have a block with these two - I really can't make myself remember anything much about either of them. Maybe it's the result of some kind of trauma and I should seek help from a psychotherapist. Oh, hang on ...

 

Can't access this. It says I need to be logged in, although I am already logged in.

 

I often have to re-login on this site, even though I'm already logged in. Never sure why... It's probably a browser cookie issue.

 

Graham would have loved seeing an experienced and respected statistician commenting on this new GDL in the SMC.

"Professional biography
Kevin McConway worked full-time at the Open University from 1980 to 2016, taking part in teaching and research projects in ecology, biology, health, business, economics and music as well as directly in statistics. He also spent five years as an associate dean. Since retiring and having Emeritus status, he still has active interests in the way statistics is represented in the media, and in some applications in science and technology. He was the main academic adviser on the BBC Radio 4 series More or Less (an OU co-production) from 1995 to 2015, and his publication list includes The Big Issue and New Scientist as well as more conventional academic journals.

Kevin is originally from rural Northumberland, studied at Cambridge, University College London (UCL) and the OU, and previously worked at Westfield College, London and in local government in north-east England. He was Vice-President for Academic Affairs of the Royal Statistical Society from 2012 to 2015.

Research interests
Bayesian methods, applications of statistics in the life sciences (particularly ecology, evolution and clinical medicine), statistics in the media."

https://www.open.ac.uk/research/people/kjm2

IIRC the "More or Less" Radio 4 series was also a favourite of his.

 

That's Sharpe.

I like Tweetle Does and Tweetle Doesn't.

My son used to have two stuffed rabbits - one he named "Squeak" and the other one he called "Doesn't".

White is back row, 5th from left.
Sharpe might be back row, 2nd from left (it's an old photo).
Not sure who that shifty looking guy in the front row, 5th from right, with his hands in the pockets of his raincoat is <cough>:

 

Doing poorly, so unfortunately I can't join in the discussion much atm. Just wanted to drop by to give everyone, and especially the people who were directly involved in developing the NICE guidelines, a big .

I see quite some possible pitfalls that need careful vigilance and comment to avoid (like how there's a risk that the situation is merely replaced with the notion that ME patients need assistence in managing their activity like they're dumb toddlers, and get blamed for personal mismanagement failure if they are ill) but in general this is a big step in the right direction and can be used to turn things for the better.

Yes, but in a way that I personally thought stood out like a sore thumb in the article, especially with Lady Finlay mentioning ME patients having a disordered energy metabolism earlier in the article.

Yes, indeed. The "fixed" is an issue in practise, but not so much on paper to keep continuing as before. However, like @adambeyoncelowe says, I think it can be neutralized with the guidelines themselves. Patients can no longer be forced to ignore their symptoms in reponse to activity, which was the whole core of CBT/GET.


Wishing everyone an enjoyable day, and a sense of encouragement that change is happening.



Edited to add: @Science For ME , wonderful you made all those discussion threads which include the changes from the draft! I can't go through them now, but they're great.

 

From The Independent:

Graded exercise therapy 'should no longer be recommended for people with ME'

New guidance comes after campaigners warned people were being ‘seriously harmed’

Graded exercise therapy should no longer be recommended for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a health watchdog has said, in a victory for campaigners.

New guidance from the National Institute for Health and Care Excellence (Nice) on ME had been due in August, but was put on hold following concerns from some groups over its contents.

Free registration to read, https://www.independent.co.uk/news/health/me-graded-exercise-therapy-fatigue-b1947358.html

 

From i News:

Chronic fatigue syndrome: controversial exercise therapy removed from new treatment guidelines

Campaigners hail move as a ‘huge step for ME patients’ having fought for more than a decade to end the ‘harmful treatment’ which they said has worsened the condition for thousands of people

People with chronic fatigue syndrome (CFS) will no longer be recommended a controversial exercise therapy after new official treatment guidelines are finally published today.

Campaigners welcomed the move by the National Institute of Health and Care Excellence (Nice) having fought for more than a decade to end the “harmful treatment” which they said has worsened the condition for thousands of patients. The UK’s health standards agency had been due to publish its updated guidelines for the treatment and management of CFS, also known as ME, earlier this year but delayed doing so due to a row over graded exercise therapy (GET).

Patient groups have argued use of the therapy, which involves incremental increases in physical activity to gradually build up tolerance, suggests those with CFS have no underlying physical problem but are having symptoms due to inactivity.

Open access, https://inews.co.uk/news/health/chr...removed-from-new-treatment-guidelines-1273658

 

From The Telegraph:

Stop prescribing exercise to ME sufferers, doctors told

Campaigners hail ‘huge step’ towards better care as clinicians will instead work with patients to establish their energy limits

Doctors have been told to stop prescribing exercise regimes to ME sufferers by the NHS watchdog, despite a backlash from medics....

Paywall, https://www.telegraph.co.uk/news/2021/10/29/stop-prescribing-exercise-sufferers-doctors-told/

 

ps: Good luck with your tooth @Simbindi

And @adambeyoncelowe and @Keela Too , it must be so nice to finally be free to talk about the guideline and its process! (Adam, also thanks for the elaborations on how and why certain decisions were made.)

 

From On The Wight:

Thousands living with chronic illness ME are listened to after years of fighting to be heard

The spokesperson for MEAction said, “Finally science is winning over stigma and paternalism in healthcare, and we can move towards better care for the thousands living with this devastating disease”

Open access, https://onthewight.com/thousands-li...tened-to-after-years-of-fighting-to-be-heard/