Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

Yes, that was my thought. But pwMEs' bodies are intolerant of exercise. The BPS framing is that pwME mistakenly believe that to be true, and thereby avoid exercise as a result of that belief.

 

it's a student Journalist.....

 

Following my email to CEO NICE, today I received a reply to some of my concerns. ( my bolding re Academy)

"
Thank you for your follow up emails in relation to the pause in publication of our guideline of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.<https://www.nice.org.uk/guidance/indevelopment/gid-ng10091> Your enquiry has been passed to the enquiry handling team to respond.

To allow the independent chair to facilitate an effective discussion, limited places were available for participants at the roundtable meeting. This being the case, NICE decided to invite a range of stakeholders, including national patient organisations and charities representing a variety of perspectives including those of adults, children, people with severe ME, an understanding of service delivery and an interest in research. We also invited relevant professional societies, representatives from NHS England and NHS Improvement, NICE and the guideline committee.

The Academy of Medical Royal Colleges was invited to the meeting as it would not have been possible to invite all of the professional groups that may have wanted to comment, and so they were invited to ensure that they could reflect the views of the range of their members.

The meeting took place earlier this week This was an extremely open and positive discussion at which we had a constructive conversation about all the key issues that had been raised – those concerning the criteria for diagnosing ME/CFS, the decision not to recommend graded exercise therapy, the role of CBT, and the particular challenges of treating children and young people with the condition, as well as the approach taken to identifying and considering the evidence.

Following the meeting, at which all the key issues that had been raised – those concerning the criteria for diagnosing ME/CFS, the decision not to recommend graded exercise therapy, the role of CBT, and the particular challenges of treating children and young people with the condition, as well as the approach taken to identifying and considering the evidence – were discussed, we are confident that the guideline can be effectively implemented across the system.

Our Guideline Executive will meet next week to discuss the input from the meeting with a view to publishing the guideline.

Kind regards
Katy

Katy
Communications Executive
National Institute for Health and Care Excellence

 

What if the wording of sections of the final draft conflict with what was agreed at the roundtable? That was the scenario I had in mind for clarifications. I mean in my view there are inconsistencies which should be reworded if the intent was what was agreed at the RT.

 

But could any substantial changes really be implemented without further committee input, even if agreed by the RT? I would hope that any changes agreed at the RT, would only include things that would have been deemed acceptable changes after 4 Oct anyway, else should have been dismissed at the RT as inadmissible by NICE on those grounds.

 

The committee would have to sign off any changes. That includes clarifications.

But clarifications are just that--they don't change the recs but may clarify what the intent was.

 

https://www.aomrc.org.uk/about-us/governance/ Interesting as their is a "Helen' here....... I am wondering something....

Professor Helen Stokes-Lampard is the immediate past Chair of the Royal College of General Practitioners (2016-2019) and a GP Principal in Lichfield, Staffordshire. She is Chair of the Academy of Medical Royal Colleges (2020-2023).

Helen has a Chair in General Practice Education at the Medical School in the University of Birmingham where she has been an Academic GP for two decades. Her academic portfolio has included a wide range of research methods, running a clinical trials unit, running a postgrad MSc programme, mentoring Drs in difficulty and leading the Community Based Medicine programme.

Helen is the Chair of Trustees of the newly formed National Academy for Social Prescribing, a charity dedicated to advancing the cause and improving the evidence base around social prescribing. She also provides advice to academic bodies and sits on several working groups including the governments ‘Tackling Loneliness Network’ and the NHSE Net Zero group.

 

In effect there were two physician and two GP representatives at RT. My reading now is that NICE were confident enough of their position to invite a genuinely representative range of objectors (the main comments were from physicians and GPs), being just about able to make that fit protocol. They also chose a chair who could not be considered in any way biased against the objectors.

Which meant that when the objectors' representatives ran out of steam trying to articulate the simplest points nobody could call foul.

 

I would so loved to have been a fly on the wall there

 

Looks like the article has been updated to remove references to "chronic fatigue" and update to ME/CFS. In the process the URL has changed to https://www.pulsetoday.co.uk/news/c...-cfs-guideline-after-final-meeting-next-week/

 

I notice it says "only GMC-registered doctors are able to post comments on articles", so presumably that offensive comment discussed earlier must have been posted by a GMC-registered doctor. Education of the medical profession, at all levels, will have to be a priority now I think. Anyone who can influence how pwME are treated, in the widest sense. Including ambulance crews ... one of my pet subjects.

 

I can think of one paramedic who could do with 'educating' about ME (amongst other health conditions).

Her uninformed scrawls have, so far, cost me over 4 years PIP and SDP.

This 'might' not have happened had she known that ME wasn't the short spelling of malingering lying scrounger.

It also might not have happened if anyone on the tribunal knew anything real about ME.

 

I am actually quite encouraged by this statement!

Forward ME FINAL STATEMENT FOLLOWING THE NICE ROUND TABLE ON ME - Oct 22nd 2021
https://forward-me.co.uk/news-updates/
Clinician and Patient Support Confirmed for new NICE Guideline on ME/CFS.date: 22 October 2021
On Monday, Forward-ME and member charities attended a round table t oreview the new ‘NICE guideline on ME/CFS’ with representatives from NICE and clinical groups.
The meeting followed the Chatham House Rule, meaning that we cannot attribute comments to individuals. This ensured that all groups were able to speak freely......'

 

From MEA FBook page. NB Following this the article was placed in the Clinical Neurology section.

PULSE magazine (for GPs) and the new NICE guideline

Following an email from the MEA last night, PULSE magazine has agreed to make some corrections to the news item they published on the new NICE guideline:

Hi Charles,
Thank you for your email and for letting me know. Apologies for this, I have updated the article accordingly and replaced any mentions for ‘chronic fatigue’ with ‘ME/CFS’.
I am away next week but please feel free to send a press release/offer for comment to Pulse where another reporter will pick it up.
Best wishes,
Caitlin
Caitlin Tilley
Reporter, Pulse

MEA Email:

Dear Caitlin
Re: https://www.pulsetoday.co.uk/.../nice-to-publish.../...
I know you don’t write these titles but I must point out that the title is inaccurate
This is not a new NICE guideline on how to manage patients with chronic fatigue, or those who are just ‘tired all the time’
The guideline only relates to when and how to make an early and accurate diagnosis of ME/CFS

And how GPs can help patients who have ME/CFS, or suspected ME/CFS, with all the key aspects of pre and post diagnosis management - in particular activity and energy management, symptom management, and the care of children and those with severe ME/CFS

Unlike the current NICE guideline on ME/CFS, we now have a guideline that is being welcomed by people with ME/CFS and which no longer recommends treatments that are either ineffective or harmful (in the case of graded exercise therapy)
We are expecting the new guideline to be published next week and will be producing a press statement to accompany it
If you return to this subject I am very happy to provide more information and comment
Dr Charles Shepherd
Hon Medical Adviser, ME Association
Member of the ME/CFS guideline committee 2018 - 2021

 

I emailed and twittered and also got a personal reply- all credit to Caitlin!

 

I did a quick search of the name associated with the only comment that is visible to me, and it definitely seems to point to a GP.

 

I think that's fairly much what I was hoping NICE would do - it's just that the waters were so muddied that I couldn't see very clearly.

My poor tired brain for some reason missed out on the "cou" there - I was looking at the rest of your post and wondering just what was so offensive about it

 

I am not sure which post was found offensive. I confess to being put on the naughty chair a bit! But not about feeling encouraged by Forward ME Statement...?

 

She read your post as to say "I am actually quite enraged by this statement", which was a brain fart from her end and one I made at first too. Had to do 2 takes, but that's more to do with our ME-brains than with your post.

 

Ah that is very helpful and explains a LOT! I have 2 pedantic men at home both with moderate to severe at times, ME.

They often do not register the first thing I say. so miss both context and really meaning.

They then switch off (due to my chatter and their brain fog)....

Then we argue for the rest of the day as they say I didn't tell them a critical thing...

" Well you didn't say, or you didn't tell me THAT " when I have but it hasn't registered.......

Found best way is to text them or email even if we are sitting together, then it's less stressful!
At least I have an audit trail then to back me up!!