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ME Research UK – Letter to NICE

ME Research UK has joined many members of Forward-ME in adding its signature to a letter to NICE in advance of a round-table meeting following the unprecedented decision by NICE to pause the publication of the new ME/CFS guideline.

Dear Professor Leng, 

The National Institute for Health and Care Excellence (NICE) is charged with creating evidence-based clinical guidelines for a range of conditions. Because of NICE’s reputation as an independent arbiter of scientific evidence, their guidelines influence medical practice not just domestically but in countries around the world. 

Since 2017, NICE has been developing a new clinical guideline for the illness now referred to as myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. To pursue this task, NICE empanelled a well-balanced committee representing a range of perspectives and conducted a thorough review of the relevant research. The review determined that the quality of the findings in favour of the two most common treatments–graded exercise therapy and cognitive behaviour therapy—was either “very low” or merely “low.” 

Appropriately, the committee considered this rigorous and up-to-date assessment in developing the new guideline, which was supposed to be published on Wednesday, August 18th. The day before this scheduled event, NICE abruptly announced a delay—not because of new information but because of apparent objections by powerful medical authorities who prefer the status quo. It is deeply troubling that NICE would alter its plans at the last moment in response to external pressure. 

Making changes at this late stage or cancelling publication altogether would represent a victory of vested professional interests over the rights of patients to receive care consistent with the available research. 
 
As a group of scientists, clinicians, academics and other experts, along with charities and support organizations for people with the illness, we urge NICE to publish the new evidence-based ME/CFS guideline without further delay. 

Thank you for your attention to this matter. 

The letter has now been signed by more than 150 experts and more than 100 UK and international charities, support groups and other relevant organisations. A full list of signatories can be found on the virology blog.