The OT Magazine – Sep / Oct 2021

Page 34

NICE Guidelines on ME/CFS Paused Sally Callow runs training organisation Stripy Lightbulb CIC, specialising in the education of healthcare professionals working with patients living with ME/CFS. Sally is also an ME/CFS patient advocate and here she discusses the recent “pause” placed on the publication of new NICE guidelines


his article had been intended to educate occupational therapists about the new National Institute of Health and Care Excellence (NICE) guidelines for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, the publication did not go according to plan. NICE have taken the unprecedented step of “pausing” the publication despite the new guidelines being signed off by all stakeholders two weeks previously. It is a disappointing and confusing halt to an evidence-based review that has taken well over three years, and a lot of hard work by many different stakeholders. ME/CFS has the reputation of being a controversial area of medicine, and so to believe that the review would be plain sailing would have been naïve, however I doubt anyone would have expected this pause. The question now is how should occupational therapists support patients during this pause given that the previous guidance was published in 2007 and was outdated, hence the current review. Stripy Lightbulb CIC will be recommending that our learners recognise that in the draft guidance published in 34


November, NICE very clearly stated on pages 27-28: Do not offer people with ME/CFS: 1 any therapy based on physical activity or exercise as a treatment or a cure for ME/CFS 2 generalised physical activity or exercise programmes this includes programmes developed for healthy people or people with other illnesses 3 any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET) 4 structured activity or exercise programmes that are based on deconditioning as the cause of ME/CFS 3 therapies derived from osteopathy, life coaching and neurolinguistic programming (for example the Lightning Process). These recommendations were the result of an extensive review of scientific evidence and hearing patients’ testimonies. NICE concluded that the PACE trial, from