A Letter Urging NICE to Publish ME/CFS Guideline Without Delay

September 1, 2021

A letter has been sent to Professor Gillian Leng, the chief executive of the National Institute for Health and Care Excellence, to urge NICE to publish the new guideline on ME/CFS without any changes. The letter is signed by many professionals offering their support for the new guideline.

Dr Shepherd assisted in collecting some of these signatories. If any UK health professional would like to add their support and name, please get in touch with Dr Shepherd via the MEA contact form.

The letter is shown below and the full list of signatories is shown here

Dear Professor Leng,

Please find below a letter urging NICE to publish the new ME/CFS guideline, signed by scientists, clinicians, academics and other experts from the UK, the US, and other countries.

I would be remiss not to mention another guideline for the illness, which was published last week by Mayo Clinic Proceedings. This document –“Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management”–was written by the US ME/CFS Clinician Coalition. In a statement that highlights the larger context of the current debate, the authors note that “the United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/CFS.”

Best–David Tuller

David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley


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 on the issue, we urge NICE to publish the new evidence-based ME/CFS guideline without further delay.

Thank you for your attention to this matter.

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