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Letter to NICE: concern over guideline delay

May 04, 2021

WEDNESDAY 12 MAY UPDATE Response from NICE now added, please see below

Our Chief Executive, Sonya Chowdhury, has written to the National Institute of Health and Care Excellent (NICE) to share our concern about the impact of the NICE delay to the NICE guideline for diagnosing and managing M.E./CFS.

In her letter to Dr Paul Chrisp, Director of Centre for Guidelines at NICE, Sonya says:

"I am writing to you regarding the delay to the revision of the NICE Guideline for ME/CFS and the impact we are seeing on people with ME/CFS and those that support them. I do understand that the decision to delay will not have been taken lightly and I think it would be helpful for NICE to clarify why this decision was taken so that there is a shared understanding of what underpins this decision.

"There has been concern and debate about this on social media and this speculation is creating anxiety for some which is counterproductive to the purpose of NICE Guidelines (which are there to improve healthcare) and could be avoided. I have published this letter on the Action for M.E. website and hope that you will agree to me sharing your response too.

The guideline, originally due to be published last month, has been delayed until August. The draft guideline, put out for consultation last November, makes it clear that people with M.E. must not be offered cognitive behavioural therapy (CBT) "as a treatment or cure for ME/CFS" or "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."

Response from NICE

On Tuesday 11 May, Sonya received the following response from Dr Chrisp.

"Thank you for your letter of 4 May 2021. I am sorry to hear of the concern regarding the delay to the guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome. After careful consideration, the decision to delay the publication of the guideline was made due to the large number of comments received during consultation, and the additional work needed to respond to them fully.

"The guideline will now publish on 18 August 2021. We contacted all stakeholders for the guideline by email on 29 March 2021 to inform them of the delay and the reason for it and updated our website to this effect the following day. I hope this information is helpful, and I am happy for you to publish my response on your organisation’s website."

Dr Dominic Salisbury, who lives with M.E., posted on his blog earlier this month about the Freedom of Information request he sent to NICE on this matter.