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The 2025 AGM is today: https://www.actionforme.org.uk/our-2025-agm/ The 2024/25 Annual Report & Accounts has just been published: https://www.actionforme.org.uk/resource/action-for-me-2024-25-annual-report-accounts/. I can't upload the PDF because apparently it's too large.

Ok yes it's paywalled, it's just not very clear on the journal page.

I can't seem to download the PDF. Clicking the PDF link just opens a new window rather than triggering the download.

Background Neuroimmune processes are often implicated in young people with atypical neuropsychiatric disorders, yet treatment implications remain controversial. This case series details young people with primary psychiatric disorders who received adjunctive immunotherapy after thorough...

I don't think it is. It seems to be a reanalysis of data from a Charite study: B. Jäkel, C. Kedor, P. Grabowski, et al., “Hand Grip Strength and Fatigability: Correlation With Clinical Parameters and Diagnostic Suitability in ME/CFS,” Journal of Translational Medicine 19, no. 1 (2021): 159...

NIHR's DecodeME contribution was £1.4 million (https://www.nihr.ac.uk/news/largest-genetic-study-myalgic-encephalomyelitis-launched). Where did the other £2.3 million go? If you search the NIHR database, funded during this period were a PSP project worth £200,000 and a £150,000 project on a new...

I get a numb patch on the outside of my left thigh when lying down. It's always the exact same spot. It's not quite pins and needles, it just goes sort of dead/numb whilst the rest of the leg is fine. I think it could be Meralgia Paresthetica, but it happens more when I'm crashing and it only...

I ended up leaving a comment on the original preprint (see above). The paper is fundamentally flawed but they've clearly decided to press on.

This is a rehash of this extremely dubious preprint: https://www.s4me.info/threads/there-is-no-established-connection-between-long-covid-and-chronic-fatigue-syndrome-2025-kouyoumdjian-et-al.44771/ EDIT: But the title has changed.

What did you think of the KCL paper on persistent fatigue and interferon alpha @Jonathan Edwards ? https://www.sciencedirect.com/science/article/pii/S0306453018301963?via%3Dihub

BACME Conference: Meeting the needs of people living with severe and very severe ME/CFS and their carers BACME is pleased to announce we will be holding a half-day online conference focusing on the needs of Severely Affected patients and their carers. The conference will be...

BACME are currently conducting a survey exploring the experience of people living with ME/CFS in the UK who have required tube feeding at some point in their illness. A very small number of people living with ME/CFS develop nutrition related problems severe enough to be considered for tube...

Postural orthostatic tachycardia syndrome (POTS) is a chronic, multifactorial syndrome with complex symptoms of orthostatic intolerance. Breathlessness is a prevalent symptom, however little is known about the aetiology. Anecdotal evidence suggests that breathless POTS patients commonly...

Another paper from Sirotiak. https://www.s4me.info/threads/beyond-fatigue-an-intersectional-analysis-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-and-social-identities-2025-sirotiak-et-al.45324/post-627840

It wasn't Carson or anyone like that. It was a guy called Siebe on X (https://x.com/PatientPersists) who had a tweet that was essentially identical to the Community Note, but he deleted his Community Note and his original tweet, then corrected himself.

Apologies if I've missed this, but do we know which journal this has been submitted to?

The Radio 5 segment was good overall. The last guy on, who has a daughter with severe ME, was questioning the complete lack of curiosity in the medical and business sectors and pleaded for more money from philanthropists and investors, which was a good addition.

I'm talking specifically about it being on the front page of the physical paper, not just that they've covered it.

I don't know if this has been posted yet, but the story is frontpage on the Guardian today — at least according to BBC's The Papers.

I'm afraid I find this framing of "this is real", "this is a thing" — which was very prevalent in the C4 piece — detrimental. Those were conversations for 30 years ago. We should not still be entertaining that framing because (i) it's not a good encapsulation of the debate and (ii) it may have...