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Apparently they got 5113 responses

Thanks @Adam pwme Here’s the YouTube link (for those not on twitter, I also had problems with the piped.video site not loading so not sure if others will too) If people don’t like YouTube just go to BBC Sounds and skip forwards to 2h 23m in to this programme...

I’m still drawn to the idea of the problem being one of receptors either responding more than they usually would, being extra sensitive or perhaps of them amplifying all or certain signals (thinking of the biological equivalent of an electronic transistor or perhaps differential amplifier). It...

That nobody can tell, tells us a lot. It shouldn’t be a topic that is unclear. Thanks for the updates though and well put @Trish I don’t know of any other such severe condition treated with such wilful disdain (there obviously has been in the past but we seem to be the main one now).

In the past I’ve equated the situation we face with the NHS to being like telling someone with a broken leg to run to the hospital to get treatment. But I think I’ll adopt this sentence, It encapsulates the impact of activity and PEM so well.

Came across this recently. Not sure if any of the points are applicable (although this one could be) but it looks like a useful resource https://www.cqc.org.uk/guidance-providers/gps/gp-mythbusters/gp-mythbusters-full-list-tips-mythbusters

Can we be sure these shifts observed are real and identifiable? I don’t know enough about this or the techniques but seem to remember people being unsure about general fluctuations in antibodies? They seem to jump to the persistent virus or autoimmunity angle, could this be just as much due to...

Rather than starting another thread for this, OpenAI have released Prism https://openai.com/index/introducing-prism/

No idea for a lot of these and I don’t think I count as v severe although I’m limited to a bed/sofa, and a bit precarious so do regularly have periods entirely in bed, but the times I’ve got significantly worse have been - in the early years after pushing myself or being pushed to go to...

I found this paper really interesting although how relevant it is to ME/CFS I don’t know

Ah thanks, I wondered if it could start earlier, maybe this spring, although even being optimistic that doesn’t bring things forward much. I don’t think the PhD could have started in September if Chris was asking people to apply in late October. I assume that date is when ME Research gave...

Just been thinking about timelines for the Blood-based biomarkers project. So this is a 3yr PhD project and looks to have been recruited (finding was secured, the place is no longer showing as available). It will have been too late to start this academic year so I think that would that mean...

I’m reminded of the discussion on demarcation in HHGTTG by a couple of philosophers and a giant computer.

While I understand the concern and we should of course consider hijacking from the usual suspects, I think we also need to be careful we don’t spend too much time focusing on what they may do to the detriment of our own messaging or actions. Edit! That said I just realised ‘appropriate support’...

On the mix and match thinking, if we had terms we all liked then the precise usage may vary So along my original line of thinking we could have a catch all message of: There are no effective treatments for ME/CFS Help us find them And support us until we do Maybe if we were running a campaign...

It’s been really good to watch how this discussion has developed and to see different people’s thoughts. We seem to have the shape of something. I collected a few of the options, maybe we could just run a vote to find what’s most popular? Or what phrases people like most individually? We could...

Full story here at Arstechnica And the case report Prurigo Pigmentosa, 2026, Lee et al Lee, Chin-Yu; Hu, Stephen Chu-Sung Abstract A 20-year-old man presented with an itchy rash 2 months after starting a ketogenic diet. Examination showed symmetric, erythematous papules and underlying...

Bleak way of looking at it but you’re probably right… I just saw it, had a play and thought ‘hey this seems really useful for finding stuff to look at further’. Thinking about the use you describe though, I can absolutely see people quoting the generated descriptions without even trying to read...

I’d missed the announcement of this and hadn’t been on Google Scholar to do a paper search for a while but they’ve of course rolled out another Gemini LLM powered feature. Looks like it could be interesting though. Scholar Labs allows you to search for papers with a question rather than the old...

Strong agree. Good idea. A couple of variations on a theme could be useful here.