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I don’t disagree. More that my motivation in saying they have good intentions is that they really think they are doing something which will help people. I think they are wrong in this and many here would agree. But differences in opinion are not something it is easy to arbitrate. Even if we have...

Oh yeah “Example of a recording on an NK cell from HC” and “Example of a recording on an NK cell from a person diagnosed with ME/CFS”… that does rather spoil things. Figure 2 seems to aggregate results

I’m obviously in no position to comment on validity of any of this. But if it is, this seems like it would be interesting particular in the context of other studies which have shown possible calcium and ion channel involvement (including the precision life analysis). A few other questions it...

I’ve not managed to read it all but looking through the annual report there is some good stuff in there. It flags many of the problems we face. It has data on dissatisfaction and does raise the particular issues of severely affected patients. What I’m slightly confused about is the...

I agree @Amw66 How BACME’s approach shapes perception amongst medical professionals and the wider public which enables minimisation of severity is an important point. I’ve yet to come across anyone in the NHS who takes severe ME/CFS seriously, at all. And too many non medics think it’s just a...

Relevant paper from the company Toward the Autonomous AI Doctor: Quantitative Benchmarking of an Autonomous Agentic AI Versus Board-Certified Clinicians in a Real World Setting Abstract Background Globally we face a projected shortage of 11 million healthcare practitioners by 2030, and...

https://www.politico.com/news/2026/01/06/artificial-intelligence-prescribing-medications-utah-00709122 I’m generally more positive on use cases for AI/ML than some on these forums but this seems like a very bad use case for LLMs with significant questions on accountability. The current approach...

A couple of updates from the MEA This mentioned in the relevant thread https://meassociation.org.uk/2026/01/new-kent-and-medway-me-cfs-and-long-covid-specialist-referral-service/ And more details on the ‘Healthcare 4 ME’ team and the pilot they have been running here...

Well, this is interesting https://meassociation.org.uk/2026/01/new-kent-and-medway-me-cfs-and-long-covid-specialist-referral-service/

I’d encourage people who feel they can to try to build up a relationship with their MP or someone in their MPs office. Send them letters, let them know about the issues, share your experiences. It takes time, it takes a lot of effort that could be spent on other things, so is hard for people...

From speaking with @kacheston I’m confident that this cookie expiration issue is the problem I hit here and I thank her for her help. Understanding this is complex and not well documented but this site has good information This is most likely to hit Safari or Brave users completing the...

It certainly feels like there are more mentions, which seems good for awareness. How much understanding there is behind that and how much impact it will have we can’t be sure of course. But it feels positive to me. This is how politics and lobbying works. I tried to look for data on Hansard...

After a bit more digging I think this is the reason https://www.cookiestatus.com/safari/

Only just listened to this but glad I did and hope others do, within but most importantly outside the ME/CFS world. Chris is such a great communicator, I love hearing him speak. Well put together by SolveME too, nice, short, focused messages.

Given the contract notice is out, already has terms specified and this seems to have a closing date of 5 February 2026 I expect not. Sorry to sound negative on this but it doesn’t look to me as if they are seeking patient participation in defining what is needed here. Happy to be corrected if...

Well it’s full of buzzwords. I’d love to know what “treatment, rehabilitation and recovery support” they have evidence for. Enough to attract those wishing to expand their little rehabilitation empires but not enough to provide the support needed for people affected across an ICB which covers...

Also a little advice to people who intend to use the free text fields to write their responses down somewhere else. I was working my way through over a number of weeks and all was fine then I lost my progress. No idea why, @kacheston has kindly enquired with qualtrics support, but I think...

I share the concerns on how valid any of this is but also, credit to @Siebe for the work and trying something

I think the implication is every gene plays a part, as there are about 20,000 protein coding genes in the human genome.

Never zolpidem but I was prescribed zopiclone. Some years pre ME/CFS I was prescribed it and used it to great effect intermittently for a short period and slept very well and restfully each time. Post ME/CFS the effects were wildly different, with some help getting to sleep and then massive and...