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

the words " #MillionsMissing 2023: Scotland calls for healthcare education" appear in white on a red-muted background with the #MEAction Scotland UK logo in the bottom right hand corner.

#MillionsMissing 2023: Scotland calls for healthcare education

This year, #MEAction Scotland’s #MillionsMissing campaign focussed on raising awareness of the reality of living with ME and called for education and training for healthcare professionals to improve support for people with ME across Scotland. Ahead of ME Awareness week, we put out a call, alongside #MEAction UK, to ask members of the ME community

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top