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Thread on a new BACME survey: UK BACME tube feeding survey 2025, closes 30th September 2025

Why on earth were they doing aerobic exercise training with long covid patients?

I don't think it's useful. My memory of the data collection was that it was largely promoted on Twitter as part of the early enthusiasm among people with Long Covid who were excitedly sharing their experiments with all sorts of treatments and egging each other on. Many were trying multiple...

I think this research is useful because it provides clues for future research. I understand GWAS study results for other diseases have led to significantly useful new research. There are other threads for discussing the value or otherwise of other approaches which may also be useful.

Chris Ponting explained it well in the interview with David Tuller. The data is about the slight variations across the population of people with ME/CFS in genetic signals compared with healthy people. It tells us nothing about individuals. It's about clues of where scientists should focus the...

I hope it's a mild one.

News in Brief summary: https://www.s4me.info/threads/news-in-brief-august-2025.45582/

Not all science media is necessarily good media. In this case 3 of the 4 comments are good comments by scientists. The other is an ignorant comment by a clinician with prejudiced views.

From the ME Association Kara Jane’s new album is out today August 8, 2025 ‘In Limbo' is the name of the new album released today – Severe ME Day – by the family of Kara Jane Spencer. The album can be found on all major music platforms or bought as a CD from her website...

Excellent video, thank you Grigor. You spoke very clearly and said important things.

ME association have posted a brief announcement from Dr Charles Shepherd. He says he'll post a longer one once he's had time to read the research. https://meassociation.org.uk/2025/08/decode-me-release-initial-dna-results/

The above statement was sent to the MEA who posted it on their website https://meassociation.org.uk/2025/08/bacme-statement-on-decodeme-study-results/ I can't see it on the BACME site.

I haven't seen on this thread yet any links to articles by ME organisations. Have I missed them?

Members only thread here

I didn't find the link on the FAQ page. Can you point me where to look.

All very well noting some causes of death for pwME, but no way should this be claimed to say anything about death rates or epidemiology for ME/CFS. They are all sad personal stories, but it's not science.

Thanks.

I've gone through this thread so far and summarised all the media so far for posting in the News in Brief this weekend. In case it's helpful, here's what we have so far: If anyone wants to go through this and let me know if I've missed anything, either complete items or useful short quotes...

That BBC item was very good. The young woman with ME/CFS spoke well of her experience, Justin Webb asked sensible questions, and Chris Ponting was very clear about the findings, the need for more research and lack of funding, and the stigmatisation of pwME.

Maybe that's a good thing, given past history of BBC so called balance meaning they would probably get Carson on repeating his misinformation from his SMC comment.