Many individuals living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in the UK continue to report being advised treatments that are no longer recommended by official guidelines.
Despite the National Institute for Health and Care Excellence (NICE) stopping its recommendation of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) as primary treatments in 2021, patients describe being pushed towards these methods. Some report being told to undertake graded exercise even when using a wheelchair, or that doctors deny the existence of new guidelines.
An estimated 400,000 people in the UK live with ME/CFS. A coroner previously ruled that health service provision for severe ME patients "was and is nonexistent." A freedom of information request to NHS England revealed that only 74 practitioners had completed a new ME/CFS learning module after a year, out of tens of thousands who could benefit.