Update from Forward-ME on the upcoming round table event, hosted by the National Institute for Health and Care Excellence (NICE) next Monday (18 October), to ‘discuss key issues raised prior to publication’ of its paused guideline for M.E. https://www.actionforme.org.uk/news/forward-me-upcoming-nice-round-table/
Campaigners say that each day a health watchdog delays publishing new guidelines on ME “puts more people at risk”. https://www.thetimes.co.uk/article/delays-to-me-guidelines-are-putting-patients-at-risk-s5bzfhxjl
We call on the National Institute for Health and Care Excellence (NICE) to publish the finalised ME/CFS guideline in its current form. https://www.change.org/p/the-national-institute-for-health-and-care-excellence-publish-the-nice-me-cfs-guideline-now
Trial By Error: A Letter Urging NICE to Publish ME/CFS Guideline Without Delay 1 September 2021 by David Tuller 19 Comments By David Tuller, DrPH This morning, I sent the following letter to Professor Gillian Leng, the chief executive of the National Institute for Health and Care Excellence. https://www.virology.ws/2021/09/01/trial-by-error-a-letter-urging-nice-to-publish-me-cfs-guideline-without-delay/?fbclid=IwAR1hYUeOkUHngtfuwvKjGqJ2CNFD1brTnhzv3ZkDu78xDoU42NVzlTToXLw
ME/CFS strikes 1 in 250 of us. It is a devastating illness, more disabling than angina or multiple sclerosis. Three quarters of sufferers are too ill to work or pursue education; a quarter are house- or bed-bound. Hundreds of thousands of lives are ruined; people who could otherwise be contributing to their communities Read more…
Trial By Error: NICE Squares Off Against Royal College Bullies Over New ME/CFS Guidelines 20 August 2021 By David Tuller, DrPH For many years, campaigners for psycho-behavioral interventions for ME/CFS have accused patients who objected to the research as being anti-scientific zealots. It was always a ridiculous charge, but developments Read more…
SNP MP Carol Monaghan has slammed the National Institute for HealthCare Excellence (NICE) for delaying its promised guideline on the diagnosis and management of Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). Monaghan, who is chair of the all-party parliamentary group on ME/CFS, said that people with the disease are Read more…
HEALTH Learn about M.E. – free CPD training for health professionals in the UK GENERAL New support for professionals on managing ME-CFS and Long Covid GPs, medical students and allied health professionals in the UK can now access free online training on the diagnosis and management of ME-CFS. At present Read more…
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Organic Disease or Psychosomatic Illness? A Re-Examination of the Royal Free Epidemic of 1955 https://pubmed.ncbi.nlm.nih.gov/33375343/
A long-running battle between patients and therapists over the best way to treat debilitating chronic fatigue was won by the patients back at the beginning of November. In a dramatic U-turn, the NICE guidelines on the best way to treat ME (Myalgic Encephalitis)/ CFS (Chronic Fatigue Syndrome) were reversed. https://healthinsightuk.org/2020/12/23/the-long-march-by-patients-to-prove-that-the-official-treatment-for-mecfs-was-wrong-and-damaging-repost/