DecodeME: the largest study into the causes of ME/CFS – Add your voice! DecodeME launched in September 2022, and over 18,000 DNA participants have already taken part, but the study still needs many more people to get involved. Sign up and complete the questionnaire about your symptoms and experience, to share Read more…
Sharon Tiday said on Twitter: For a while now people have told me that I should get this short story/poem published so I sent it off and Edge of Humanity Magazine has now published it 🥳please share it for #MEAwareness https://edgeofhumanity.com/2023/05/25/we-live-with-a-monster-a-myalgic-encephalomyelitis-m-e-story/
A life cut short by medical neglect: interview with Sarah Boothby, whose daughter Maeve died at 27 of severe ME/CFS https://mecfs-med-ed.org/2023/05/31/a-life-cut-short-by-medical-neglect-interview-with-sarah-boothby-whose-daughter-maeve-died-at-27-of-severe-me-cfs/?fbclid=IwAR2xpAxn4v_ygKJKmbqqLdfc96ldyX0QLI8Pn39PpSANH2tDZ4MlkUwPMnw
National treatment guidelines published two years ago are still not widely implemented, says charity Kat Lay, Health Editor Sunday May 28 2023, 8.20pm BST, The Times https://www.thetimes.co.uk/article/thousands-of-me-patients-failed-by-shockingly-poor-nhs-care-8bbffrr9x HEALTH Full article
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…
In 2018, the Norwegian ME Association undertook a large survey of severely ill ME patients. We wanted to look at symptom burden and disease severity, access to help and care, and how the carers experienced their condition. The answers we received were shocking, showing both how serious the disease is, Read more…
Alice Barrett who is an inpatient at Royal Devon and Exeter Hospital was unable to lie at 30 degrees to be tube fed in line with hospital policy. The hospital have now amended Alice’s tube feeding plan to factor this in. https://www.bbc.co.uk/news/uk-england-devon-64830022
The sister of Alice Barrett has been interview by BBC South West about Alice’s need to be urgently tube fed lying flat. Our medical advisor, Dr Weir is also on the interview. You can watch the interview https://www.youtube.com/watch?v=KySoy0vm6jc
Alice Barrett, 25, and Sami Berry, 43, are both suffering from severe METhe families of two women being treated in NHS hospitals fear that they are at risk of dying fromstarvation.Alice Barrett, 25, has severe myalgic encephalomyelitis (ME) and is being cared for by Royal Devon University Healthcare NHS Foundation Read more…