There are an estimated 250,000 PwME in the UK, not counting the influx from Covid, and yet only about 20,000 joined DecodeME (a low-effort,...
Interesting video with lots of overlap with us, although some of it is the exact opposite. I have been noticing that, generally speaking, things...
Abstract As six patient partners in Canada, we aim to contribute to learning and to provide an opportunity to reflect on patient engagement (PE)...
Full title: How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the...
How do Health Service (NHS) organisations respond to patient concerns? A qualitative interview study of the Patient Advice and Liaison Service...
I recently followed an online webinar about patient involvement in the Dutch ME/CFS program. It looks like the idea is to involve patients in as...
Chronic diseases like Ehlers-Danlos Syndrome, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and Fibromyalgia have long been...
For faster progress in ME/CFS research, funders and researchers need to treat patients as partners, not subjects [ATTACH] Publicly funded...
M.E. In BC [British Columbia]: How the healthcare system for M.E. impacts clinicians and patients This is a preliminary study assessing the unmet...
Advocacy work can involve surveys - online/ telephone/ hard copy. Much of the time, those who are most severly affected can find it difficult to...
doi:10.1136/ebmental-2019-300133 Sci-Hub Alice Davis, Theresa Smith, Jenny Talbot, Chris Eldridge, David Betts ABSTRACT Background Across...
Abstract Objective Improving Access to Psychological Therapies (IAPT) services in England have established a long‐term condition (LTC) pathway in...
Anybody want to help spread the Cochrane gospel? Cochrane UK has launched the Cochrane UK Consumer Champions initiative and we are inviting...
From previous threads ( particularly the paediatric NICE guidelines consultation and problems with conversation), there was interesting discussion...
The plight of patients with severe ME/CFS has been the subject of a series of studies funded by ME Research UK over the last few years, and...
What big research questions do people with M.E., their carers and clinicians want answered? You are invited to a free workshop on Tuesday 10...
Dear Father Christmas, I do apologise for bothering you. I know December is fiendishly busy, and how you manage to conjure such good cheer in it,...
This was highlighted in the December Invest in ME newsletter. Welcome to the MULTI-ACT Patient Engagement Survey MULTI-ACT is a 3-year European...
[MEDIA] Likely followed by a talk on vaccine safety by Andrew Wakefield and a panel on the scientific method sponsored by Goop.com and...
So, for those of you who aren't aware, I have been fortunate enough to be invited along to take part in these meetings as a patient...
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