This article, also printed in the Summer Newsletter 2024, provides useful resources, including the relevant NICE Guidance, for people with severe ME who are/may be going to hospital. It also contains the live links from the article in the Summer Newsletter 2024. Severe ME Awareness Day 2024- Hospital Care
Response to the Interim Delivery Plan from 25% ME Group, a national charity which supports people with severe and very severe ME/CFS- 3rd October 2023 We would like to thank all those involved, including people with ME/CFS, unpaid carers, charity representatives, clinicians, researchers, representatives from the Department of Health and Read more…
ME/CFS CPD | Module https://www.studyprn.com/p/chronic-fatigue-syndrome A message from course author, Dr Nina Muirhead BA (Oxon), BMBCh (Oxon), MRCS HOHNS, MEd, PGCipDerm ME/CFS is one of the most fascinating and important diseases of our time. In writing this module I have started from scratch. I drew on the international peer reviewed Read more…
#DecodeME Matters As many of you are aware our advocacy worker, Helen Baxter, has been assisting people with severe and very severe ME to participate in the DecodeME Study by completing the questionnaire over the telephone with participants who can’t complete it online/on a paper copy. Helen was invited, by Read more…
Our advocacy worker, Helen Baxter, did a talk on preventing avoidable malnutrition in severe ME at The Malnutrition Task Force Sharing Practice Day. The Malnutrition Task Force focus on malnutrition in the elderly and Helen has drawn on the comparisons between the nutrition and care needs of the elderly and Read more…
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 the research was done and how The Top 10 Plus 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. Medsacpe covering H Baxter’s presentation at IACFSME conference
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 ME/CFS patient is heard in research’. She showed that with 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 or bedbound; some require tube feeding. Due to the severity Read more…
E D I T . The video has been viewed over 250 times in the last 24 hours! 。 Here it is! The 25% ME Group’s Season’s greetings video. Why not send it with individualised messages to each of your friends and family members https://youtu.be/JoqN8xmSUBQ