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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...

Science Media Centre (featuring Sour-Grapes Carson, of course): https://www.sciencemediacentre.org/expert-reaction-to-unpublished-preprint-on-the-decodeme-genome-wide-association-study-of-me-cfs/

Initial posts have been moved from DecodeME in the Media **************************************************************************** Science Media Centre (featuring Sour-Grapes Carson, of course)...

Financial Times: https://www.ft.com/content/b82711ca-0842-4e73-9475-52435997e349

I have donated to IiME before via fundraisers and sponsored events. Being volunteer-led means all money raised goes to research but it also means they are stuck as a small charity and IMO they really need help to overhaul their identity/media. For historical reasons they also do not seem to...

Follow-up paper on cost-effectiveness: https://onlinelibrary.wiley.com/doi/10.1111/hex.70357 What a giant waste of resources.

How utterly bizzare.

I think the last direct link was probably when BACME was chaired by Gabrielle Murphy, but she stepped down a few years ago.

That depends what you mean by 'BPS'. BACME was chaired by Esther Crawley back in the day. I don't think there are direct links now, but I suspect several members, particularly those in London, Bath, Oxford and Bristol, have at some stage worked with one of Wessely, Crawley, Sharpe, Miller...

I've just listened to this segment. Charles wastes valuable time talking about historical minutiae of ME in Scotland in the 1980s and ends up completely failing to answer the question about the Delivery Plan. With all due respect to Charles, this isn't good enough. No one listening needs to know...