Statement from Forward-ME on NICE Roundtable

After NICE held its roundtable to discuss the new ME/CFS guideline, Forward-ME (which #MEAction UK is a member of) have produced the below statement.


Clinician and Patient Support Confirmed for new NICE Guideline on ME/CFS.

On Monday, Forward-ME and member charities attended a roundtable 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 roundtable 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 roundtable 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.

*NOTES:

Charities attending included: Forward-ME, 25% ME group, Action for ME, #ME Action UK, The ME Association, ME Research UK, the ME Trust, Science for ME and the Tymes Trust.    


You can read #MEAction UK’s report on the roundtable here.

Facebook
Twitter
WhatsApp
Email

Latest News

Image is a sky blue rectangle, with an image of the #MEAction Maryland's logo that has the words Maryland State Chapter over an image of a lighthouse. On the righthand side if the image are the words, Join #MEAction's Marylans's #HelpMESenator Campaign in black font.

Join #MEAction Maryland’s #HelpMESenator Campaign

We are writing this article to share some exciting news! On Tuesday, September 26, ME advocates delivered copies of the book, The Puzzle Solver, by Tracie White with Ronald W. Davis, PhD, along with information about ME and Long Covid to Senators on the Hill. The books were donated by an individual living with severe ME/CFS in an effort to raise

Read More »
a collection of millionsmisisng pictures featuring people protesting over the years in red shirts and with protest signs. white dashses connect the photos. the words words "the Story of the #MillionsMissing" is in white font in the top lefthand corner with the #MEAction logo there. The words "Coming Soon" is handwriting font is in the top righthand corner.

“#MillionsMissing is our drumbeat”–Preview Party 9/24

RSVP TODAY: We are hosting a preview party for the new, virtual Home of the #MillionsMissing this Sunday, September 24th, at 12 pm PT/ 3 pm ET/ 8 pm BST! RSVP & Get Zoom Link Here We have always had to be creative in telling Our Story – the story of M.E. – to the world

Read More »

JNNP to publish edited rapid response by MEAction UK.

MEAction UK have been in communication with the BMJ and are delighted to announce that the Journal of Neurology, Neurosurgery & Psychiatry (JNNP) are publishing an edited version of our rapid response to  ‘Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis’. We

Read More »