The NICE Round Table Meeting to be postponed to October with the Royal Colleges' Prof Dame Carol Black as Chair

[Countrygirl]

Update from NICE 20th October https://www.nice.org.uk/news/articl...ps-for-publication-of-its-guideline-on-me-cfs

We are now confident that the guideline can be effectively implemented across the system and we will therefore publish the guideline, with additional clarification where necessary, next week.

Professor Gillian Leng, NICE chief executive

NICE announces next steps for publication of its guideline on ME/CFS
NICE has today (20 October 2021) announced the next steps for publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
20 October 2021

NICE will publish the guideline following a meeting of its Guidance Executive next week.
Today’s announcement follows a roundtable meeting held earlier this week involving representatives from a range of patient and professional organisations, to discuss concerns raised about some aspects of the guideline that had led to the publication of the guideline being paused.
Professor Gillian Leng, NICE chief executive, said: “We would like to thank all those who took part in the meeting earlier this week for their contributions to what was an extremely open and positive discussion. During the meeting 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.
“We are now confident that the guideline can be effectively implemented across the system and we will discuss the input from the meeting at our Guidance Executive next week with a view to publication of the guideline.”

 

[themjay]

Many of us have been sick for decades and it is shameful that we are "celebrating" the medical establishment deigning to stop harming us further. There seems to be severe cognitive dissonance between the firmly entrenched beliefs of doctors and the reality that patients are presenting before their eyes. Consider this gem from last December. I was seeing a consultant rheumatologist. I am housebound with severe M.E, in a wheelchair and my carer is having to hold my head up, fill in words for me etc and this is the advice that arrives - and is copied to my GP therefore reinforcing their beliefs:

 

[BrightCandle]

It is a win but all it does is remove CBT and GET as cures for ME/CFS. There is nothing in these guidelines that helps patients at all, it just removes the danger that if you do end up in hospital that they may torture you, well at least if they do it they are breaking the guidelines, which NICE has admitted they can do anyway. Until the people who did this are removed I imagine they will use the wiggle room around exercise to continue doing what they have always been doing.

We are still very much on our own and looking to other countries for research findings on the condition.

 

[Countrygirl]

FORWARD ME's REPORT ON THE ROUND TABLE MEETING


https://forward-me.co.uk/news-updat...lDzTHfTjyps3mruDcdXsQIoKLSbVxmd2nNah0I2HvGG-g

FINAL STATEMENT FOLLOWING THE NICE ROUND TABLE ON ME - Oct 22nd 2021
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 to review 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.

The round table reviewed the thorough work of NICE and the guideline committee in assessing the evidence. There was clear acceptance of Post-Exertional Malaise (PEM) as a key marker, which distinguishes ME from other causes of chronic fatigue. A number of clinical trials omitted this requirement.

NICE presented the detailed evidence review, highlighting the lack of meaningful evidence to support Graded Exercise Therapy (GET), as defined by a number of trials including PACE. The round table heard reports of the harm caused by GET, and it was noted that some clinics still follow this practice. It was recognised that the guideline rejected the ‘deconditioning hypothesis’ of ME.

The meeting noted the lessons of the Cumberlege review, and the need to acknowledge patient experiences when they report harm.

NICE detailed the rationale for recommending ‘Energy Management’, established in the new guideline. This approach, undertaken collaboratively with patients, can improve outcomes while avoiding the harm often reported from past interventions. This is a key aspect of the guideline.

Many children with ME have been subjected to child protection processes for declining treatment plans or missing school. There was concern that ME be distinguished from ‘Fabricated and Induced Illness’ (FII), to avoid unjustified child protection orders against parents. The rationale in the guideline was explained, and the meeting discussed a number of cases which illustrated the challenges of safeguarding. This area may be further re-enforced.

There was broad support for the recognition in the new guideline that CBT does not cure ME. This counters past hypotheses that ‘abnormal illness beliefs’ underpinned the disease. While CBT may help some ME sufferers to deal with the distress that can accompany the disease, it is not curative.

People with ME need to be supported by clinicians with relevant training, ensuring that management of the disease is effective and safe. The meeting heard that supporting people with ME is a separate specialty from rehabilitation from other causes, and the need for improved education was recognised.

Attendees highlighted potential challenges in resourcing and commissioning the services recommended in the new guidelines. Concerns were raised that this could result in decommissioning of some existing ME clinics, and future clinical models were discussed.

NICE planned to review feedback from the roundtable, and has since announced that it will publish the guideline following a meeting of its Guidance Executive next week.

 

[Bronc]

"Attendees highlighted potential challenges in resourcing and commissioning the services recommended in the new guidelines''
Considering the austerity agenda of the current government then don't expect any meaningful increase in extra funding for services for pwME. If you listen to what Tory ministers say about disabled people they are obssessed with getting us all back to work as being ill at home unable to do much is simply unacceptable to these people. Plus, we should not forget the Tories commitment to finish the privatisation of every service provided by the NHS. In my area the neurological occupational therapists who provide support with home visits to some pwME, if you are lucky enough to get a referral, have been privatised. They now work for a company that over works its staff while the owners get rich on public money.

Local Clincal Commissioning Groups led by unelected bureaucrats are privatising and reducing NHS services all over the country. My local hospital, which serves a population of 250,000 people, is still scheduled to be massively reduced in size with most of its services sent to the PFI hospital in Halifax. This is despite a huge campaign of opposition from the local community.

Legendary journalist John Pilger produced a documentary called The Dirty War On The NHS which came out in 2019. Its warnings about the wholesale privatisation of the NHS are more relevant than ever:

http://johnpilger.com/videos/the-dirty-war-on-the-nhs

" Concerns were raised that this could result in decommissioning of some existing ME clinics, and future clinical models were discussed.'' I wonder who raised these concerns? The NHS ME clinics have a lot to answer for with the harmful treatments they have inflicted on many patients over the years. I became alot more ill under the tender mercy of the Leeds clinic. If they can't offer anything positive to people with ME then they should be closed and the resources diverted to where they can do some good for pwME.

I would like to know what 'future clinical models were discussed'?

Words fail me to express my dismay at the disgraceful state of affairs when it comes to the treatment of pwME.