Trial By Error: An Updated Letter to the NICE Chief Executive About the Unpublished ME/CFS Guideline

September 16, 2021


David Tuller writes on the virology.ws website that he has sent a follow-up letter to NICE about the delayed publication of the ME/CFS Guideline and this is shown below.

I sent the following letter today to Professor Gillian Leng, chief executive of the National Institute for Health and Care Excellence (NICE). It was a follow-up to the letter I sent on September 1st about the agency’s decision to delay publication of it new ME/CFS guidelines. The letter has now been signed by more than 150 experts and more than 100 UK and international charities, support groups and other relevant organizations.

David Tuller

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Professor Gillian Leng CBE
Chief Executive
National Institute for Health and Care Excellence

Dear Professor Leng,

I am re-sending the letter about the new ME/CFS guidelines that I sent you earlier this month, with more experts signed on as well as dozens of UK and international charities, support groups and other concerned organizations. 

On a personal note, I also wanted to extend my sympathy concerning the recent loss of your husband, which I learned about from your retirement announcement. 

Best—David

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

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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 scientists, clinicians, academics and other experts in the field, as well as charities, support groups and other concerned organizations, we urge NICE to publish the new evidence-based ME/CFS guideline without further delay.

Thank you for your attention to this matter.

A full list of signatories can be found here which includes Health Care Professionals and UK and International charities and support groups.

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