Trial By Error: Some Thoughts About NICE

David Tuller


By David Tuller, DrPH.

The UK’s National Institute for Health and Care Excellence (NICE), which develops clinical guidelines for a range of medical conditions, is currently selecting a committee to develop a new guidance for the illness it refers to as myalgic encephaloymyelitis/chronic fatigue syndrome (ME/CFS). The new guidance will replace one written in 2007, when the organization was calling the illness CFS/ME. That 2007 guidance recommended graded exercise therapy (GET) and cognitive behavior therapy (CBT) as standard-of-care interventions and has been routinely cited as evidence that these treatments are effective.

Patients and advocates have long criticized the guidance and its recommendations. Last year, after a protracted public debate, NICE agreed to conduct a full-scale overhaul. Given NICE’s history of support for the long-prevailing but controversial GET/CBT treatment paradigm, patients and advocates have been skeptical that this process will result in a fair review of the science and substantive changes to the guidance. They have worried that NICE could direct the process in a way likely to advantage the status quo. NICE has declined requests to remove the 2007 version pending the expected publication of the new one in 2020, although a note on the main page for the guidance indicates that an update is in progress.


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