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​Draft NICE guideline for M.E.: have your say

​Draft NICE guideline for M.E.: have your say

November 10, 2020

The National Institute for Health and Care Excellence (NICE) has published its draft guidance on the diagnosis, treatment and management of M.E./CFS.

Updated guidance has been long-awaited by people with M.E., advocates and charities, including Action for M.E., who have campaigned hard for much-needed changes.

We are reviewing the guideline in detail, as a priority. We are hugely encouraged to note the following, so far:

  • "Do not offer people with ME/CFS any therapy based on physical activity or exercise as a treatment or cure for ME/CFS [or] any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy.”
  • "Only offer cognitive behavioural therapy (CBT) to people with ME/CFS who would like to use it to support them in managing their symptoms of ME/CFS and to reduce the psychological distress associated with having a chronic illness. Do not offer CBT as a treatment or cure for ME/CFS."
  • "Recognise that people with ME/CFS may have experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness."

It is essential that the views of people with M.E. continue to shape this consultation and that the final guideline has a patient-led approach to diagnosis and management.

To make sure this happens, we will be:

  • Publishing, as soon as possible, short summaries of key chapters so those less able to read long documents have a clear overview of what the draft guideline says
  • sharing a survey to gather views on the guidance; we will link to this ASAP on our website and social media, and in InterAction, our membership magazine, for those not online
  • using your views, along with data from our Big Survey last year, to inform our response to NICE, by their deadline of Tuesday 22 December.

Huge thanks to those who have contributed to the draft guideline, particularly people with M.E. Please do check back for updates - we will be posting our summaries and survey on our NICE guideline page as they become available.