NICE guideline review

The National Institute for Health and Care Excellence (NICE) provide national guidance on treatments and care for people using the NHS in England and Wales. In September 2017, NICE announced a full review of its guideline for M.E., following consultation with stakeholders including Action for M.E.

Why is this important?

The current NICE guideline recommends two treatment approaches, graded exercise therapy (GET) and cognitive behaviour therapy (CBT). However, patient evidence and experience repeatedly shows that GET and CBT are unhelpful and in many cases harmful.

Under-investment in research, and lack of rigour in applying appropriate research criteria to studies examining the efficacy of GET and CBT, mean that there is no reliable conclusive evidence base for treatments for M.E., including GET and CBT. This has led major international health agencies, including the Centers for Disease Control and Prevention in the US, to alter their guidance regarding CBT and GET

NICE has an ethical obligation to present a full, accurate and balanced picture of current international clinical practice when it comes to managing and treating M.E. but the guideline in its current form does not do this.

What is Action for M.E. doing about it?

Since this work began, we have worked to gather the latest patient evidence and experience from children and adults, and share this with NICE, to inform the update of its guideline.

Our 2019 Big Survey of more than 4,000 children and adults with M.E. has informed all our submissions to NICE.
We took a leading role in developing and promoting Forward M.E.'s 2019 survey of GET and CBT, with responses from more than 2,270, shared with NICE.
We worked with Oxfords Brooks University to gather the experiences of children and young people with M.E. for guideline-development focus groups.

As well as ensuring the experiences of people with M.E. are at the heart of guideline development, we will call for the updated guideline to:

recognise the experiences of people with M.E. and take account of how these impact on the guideline recommendations, including the significant number of patients who state that pacing has been helpful for them

ensure it provides a full and accurate picture to patients and clinicians of the diversity of current international practice

recommend further biomedical research into the aetiology and potential treatments of M.E./CFS, to increase knowledge and understanding of the condition.

Having been delayed due to the Coronavirus pandemic, the deadline is now expected to be published in April 2021, with a draft consultation put out for review in November 2020. Please look our for news updates on this.

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