Letter to NICE from UK charities and support organisations

September 6, 2021


Having been involved with collecting UK signatures for the letter that David Tuller produced to support publication of the new NICE guideline I know that there are charities and support organisations here in the UK who would like to do the same. 

So, we are now collecting signatures for basically the same letter (as below) to go from charities and support organisations to NICE. Signatures from outside the UK are also welcome.  

Please can we kindly ask that only one representative of the organisation completes the form on behalf of its members. This is to avoid duplication of signatory information.

Time is short – so please let us have details by Wednesday 15th September 2021 (deadline extended)

Thanks! 
 
Dr Charles Shepherd 

Letter to NICE

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. 

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