Many of you took part in the surveys put together by the James Lind Alliance ME/CFS Priority Setting Partnership. The James Lind Alliance Steering Group which Helen Baxter, our advocacy worker, sat on, have now published a paper outlining how Read more…
Participation request! Please help the Norwegian ME Association (Norges Myalgisk Encefalopati Forening) gather crucial information about ME/CFS by filling out their survey: The Norwegian ME Association has developed this excellent survey to fill knowledge gaps about the course of illness Read more…
The IACFSME conference was covered by journalist, Miriam Tucker, who chose to focus an article on our advocacy worker, Helen Baxter’s presentation. The article includes comments from our medical adviser, Dr Speight and Dr Bateman from The Bateman Horne Centre. Read more…
25% ME Group at IACFSME Conference Advocacy worker, Helen Baxter attended the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFSME) Conference at the end of July and did a presentation entitled ‘How to ensure the Voice of the Severely affected Read more…
Abstract Most of the research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has focused on ambulant patients who are able to attend clinics. It is estimated that 25% of people with ME/CFS are severely, or very severely, affected and are housebound Read more…
Implementation Statement from The National Institute for Health and Care Excellence NICE has today, International ME Awareness Day (Thursday, 12 May 2022) published its implementation statement which sets out the practical steps needed to put its recent guideline on the Read more…
Statement My Rt Hon Friend the Secretary of State for Health and Social Care (Sajid Javid) has made the following written statement: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) affects the lives of children and adults across the country. It Read more…
James Lind Alliance Priority Setting Partnership – Results: The Top 10+ priorities for research around ME / CFS have been identified by the Partnership. These priorities have been determined as a result of two surveys and workshops engaging with people Read more…
ME Awareness 2022 “Core Guidance NG206: Key extracts from the ME/CFS guideline published by NICE October 2021, with a focus on changes that are required and the care and support of severely affected patients. Also highlights the health professional’s duty, Read more…
Hard to believe that patients with ME have been treated so poorly for decades, but they have, and the stirring story of their resilience and unwillingness to be forgotten is brilliantly portrayed in these videos. If you really want to Read more…