People with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) are urging the National Institute for Health and Care Excellence (NICE) to publish finalized guidelines for ME/CFS that ensure accurate diagnosis, appropriate symptom management, and access to the best support available. However, medical Royal Colleges have informed NICE they will not implement these improved guidelines, and that graded exercise therapy (GET) will remain a recommended treatment, despite the evidence of this treatment harming people with ME/CFS.
Ronald W. Davis, PhD, Chair of Open Medicine Foundation’s Scientific Advisory Board, has issued a powerful statement regarding the detrimental pause of NICE guidelines:
From the desk of Ronald W. Davis, PhD
Chair of OMF Scientific Advisory Board
NICE has abruptly paused the publication of its new guidelines for ME/CFS, arguing that those who are treating patients need to agree with the guidelines. This is a false argument. Medical advice must follow the evidence and not personal beliefs or political positions. If doctors treating ME/CFS patients do not agree with evidence based guidelines, they should not be treating these patients. This is why we have guidelines.
When guidelines contain treatments that don’t work, or are harmful, then the guidelines should be rejected. We must have faith that the guidelines are in the best interest of the patient. NICE has completed their objective scientific review. It is a travesty that NICE is being influenced by people with vested interest in maintaining their beliefs in treatments that have long been shown to lack evidence supporting them and have been shown to be harmful to patients. If NICE does not stick to their mission of unbiased evidence based guidelines, then it will lose its credibility.
It is time for the UK to join the rest of the scientific community and publish guidelines that are consistent with the evidence. Their influence is crucial, and every day that the old guidelines stand, physicians all over the world continue to recommend inappropriate and harmful treatment for ME/CFS patients.
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