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...
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...
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...
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...
There’s something about the phrasing of this feels as if it shifts things. It feels to me closer to more generic charity stuff. Just my opinion.
I’m also wary of us going in circles thinking about how things may be interpreted.
Stick to a message thot feels right and you can deal with...
I don’t think feathers are ruffled or any apology is needed. Discussion on here can be strong and they can definitely feel heated and be hard for people at times. Especiy if lots of people disagree with a point or hold or express their beliefs strongly. I know I have felt this and others have...
Agree.
My original thought was just this is sort of message I’d like to hear from government, healthcare, charities etc. The people I/we turn to for help. I hadn’t really thought beyond that.
Translating it into something we say to people or campaign or whatever is a good idea too. Although...
Yeah.
Table 1 doesn’t have any of the lab tests for controls
Table 2 they have a subset of their patient reported symptoms for controls
Table 3 they have done all their suite of autonomic tests on controls
Table 5 no controls for invasive cardiopulmonary tests
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