Hospital update Alice Barrett’s tube feeding plan
Alice Barrett who is an inpatient at Royal Devon and Exeter Hospital was unable to lie at 30…
An interview with the sister of Alice Barrett who needed urgent tube feeding
The sister of Alice Barrett has been interview by BBC South West about Alice’s need to be urgently…
The Times 27.02.23 ME patients ‘risk dying of starvation’ under NHS care
Alice Barrett, 25, and Sami Berry, 43, are both suffering from severe METhe families of two women being…
25% ME Group at The Malnutrition Task Force Sharing Practice Day
Our advocacy worker, Helen Baxter, did a talk on preventing avoidable malnutrition in severe ME at The Malnutrition…
ME IN THE MEDIA
Exeter mum’s heartbreak as daughter, 27, loses severe ME battle The 27-year-old was sent home to be cared…
Feedback on survey
Many of you took part in the surveys put together by the James Lind Alliance ME/CFS Priority Setting…
Course of illness survey 2022 (Norwegian ME Association
Participation request! Please help the Norwegian ME Association (Norges Myalgisk Encefalopati Forening) gather crucial information about ME/CFS by…
The IACFSME conference
The IACFSME conference was covered by journalist, Miriam Tucker, who chose to focus an article on our advocacy…
25% ME Group at IACFSME Conference
25% ME Group at IACFSME Conference Advocacy worker, Helen Baxter attended the International Association for Chronic Fatigue Syndrome/Myalgic…
Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research—A Research Model.
Abstract Most of the research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has focused on ambulant patients who are…