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Our submission to the NICE call for evidence

October 24, 2019

Last month, the National Guideline Centre opened a call for evidence for studies into M.E./CFS. Commissioned by the National Institute for Clinical Excellence (NICE), this evidence will inform their work on the development of the guideline for diagnosis and treatment of M.E./CFS.

Earlier this year we conducted a survey on living with M.E./CFS in the UK. It came to conclusion in August and received over 4,000 responses from people with M.E./CFS. These results have informed our response to the call for evidence where we have recommended that NICE remove the recommendation that:

“Cognitive behavioural therapy (CBT) and/or graded exercise therapy (GET) should be offered to people with mild or moderate CFS/ME and provided to those who choose these approaches, because currently these are the interventions for which there is the clearest research evidence of benefit.”

Our results which were presented earlier this month at our AGM and conference show that even under the most positive of circumstances, only a small minority of people say that either CBT or GET helps them manage symptoms. We also included data on the relationship between a healthcare professional and person with M.E./CFS.

We highlighted that less than half of respondents to our survey said that the professional they work with “takes account of my age, severity of symptoms, my preferences and experiences, and the outcomes of previous treatment(s)”.

As well as this, only one in five people were “offered information about local and national self-help groups and support groups for M.E./CFS.”

These statements were taken from the existing guideline and we stressed the importance of ensuring Principles of Care such as this are followed. Our presentation from the Big Survey will be available on YouTube shortly. We will share an update when this happens.

The final guideline is due in less than a year on 14 October 2020.