united kingdom

"To Secretary of State for Health and Social Care Victoria Atkins MP I am writing to you as a concerned citizen and advocate for individuals suffering from severe Myalgic Encephalomyelitis (M.E.), urging the immediate establishment of a dedicated National Health Service (NHS) protocol to...

https://www.clinicallyvulnerable.org/ Building a Safer Future for All Supporting, informing and advocating for Clinically Vulnerable households across the UK since 2020. Our mission To support, inform and advocate for those in Clinically Vulnerable households as they navigate the ongoing...

Sex and disease differences in patients’ diagnostic experiences in autoimmune diseases: an international cross-sectional study Summary Background Females have higher rates of autoimmune disease and reported misdiagnoses. Our study uses patient-reported diagnostic data to capture, and compare...

WSJ | Archived The Welfare State Is Crushing Britain The soaring number of people on disability and sickness benefits is blowing up the country’s welfare bill and imperiling its long-term financial stability By Max Colchester and David Luhnow Oct. 11, 2026 at 9:00 pm ET 3200-word article.

[This is not ME/CFS specific but it will affect pwME/CFS who are still employed. https://archive.ph/2026.05.20-053704/https://www.ft.com/content/90776c6f-5c74-4222-9424-dc3da6487540#selection-1599.0-1599.51 Some excerpts: So the way to reduce sick leave and "Get Britain Working" is to...

Hansard transcript https://hansard.parliament.uk/commons/2025-11-19/debates/2CF5B027-60AF-4031-B6B1-A2909CF6A745/MyalgicEncephalomyelitis

Part of the RCP Future Healthcare Journal Special Issue - other papers: A patient perspective on enduring symptoms - the unmet need, Cheston (this was the initial thread that discussed the Special Issue; it has some general discussion on the special issue) Future healthcare for patients with...

This has probably been posted somewhere, but in case it hasn't......... from the MEA website December 2, 2025 for the rest...

Telegraph https://www.msn.com/en-gb/health/other/high-street-health-tests-give-out-wrong-results/ar-AA1JbwFN?ocid=msedgntp&pc=U531&cvid=149ef108c6f94f94b9ae04ea0315fd32&ei=31

China to access NHS medical records of 500,000 patients despite MI5 fears

Full title: Understanding symptom clusters, diagnosis and healthcare experiences in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a cross-sectional survey in the UK Maedeh Mansoubi, Thomas Richards, Martine Ainsworth-Wells, Russell Fleming, Phaedra Leveridge, Charles...

Under-Served Groups and Myalgic Encephalomyelitis Research Workshop; Multiple Barriers to Effective Healthcare, Research and Public Participation Monica Jane Bolton, Carolyn A. Chew-Graham, Harm van Marwijk ABSTRACT Public involvement in research and other initiatives for myalgic...

This post has been copied and responses about the Nuffield program moved from the Paul Garner thread.

Watch this video earlier of a guy talking about his experience of long Covid. It's quite emotional in places. It also makes clear that he's being encouraged to do low-level exercise by an NHS clinic, and he's trying to do it because he so much wants to get better. I think it's really effective...

Long COVID SOS, just published a 7 page GP leaflet with the collaboration of Royal College of GP’s and the Clinical Post COVID Society. https://www.longcovidsos.org/_files/ugd/8bd4fe_2c32c19ec66c4396bbaedae8a42fe167.pdf

from their website Site Map - BACME Primary Fatigue Service (for ME/CFS and Long COVID) South Yorkshire and North Derbyshire ME/CFS Service ME/CFS and Fibromyalgia Service, Royal London Hospital for Integrated Medicine Royal London Hospital for Integrated Medicine: Physiotherapy for...

Warning of 'Victorian disease easily mistaken for a winter cold

Copied post Learn about ME webinar for GPs: watch now October 14, 2024 Dr Nina Muirhead and Dr Robin Kerr led a free Learn about ME webinar for GPs on Thursday 26 September. Continues at: https://www.actionforme.org.uk/news/learn-about-me-webinar-for-gps-watch-now/

benefitsandwork.co.uk has just published a new guide for those claiming PIP for ME/CFS. The full guide is only available to paid members, but the page below gives a flavour of what is in the guide. The linked page also includes some interesting stats on PIP claims by those with a primary...