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I think it's more a request for what information someone holds about you, where they got it from, how they use it, and whether they've shared it with anyone else. They're often requested by individuals. For instance, my GP practice suggested it was the best way to get the medical records I...

If it's only viruses, couldn't stool be PCR tested? It wouldn't show tissue abnormalities, but it'd likely pick up the DNA of enteroviruses. Guess it still needs money, though, and might be hard to justify unless there's a good indication it could tell us something we need to know.

As far as I can make out, none of them are. Practitioners are the modern thing! Doctors are expensive and not all of them stick to the script.

I too get muscle weakness after activity that's challenging enough. The main characteristics are that it's relatively short lived, and there's an element of negotiability: I'm unsteady but have the sense that I'd get out on adrenaline if the building were on fire. Most of the pain only sets in...

I mean anybody with a bit of paper showing they've been on a course. It doesn't matter whether it was occupational therapy or psycho-something or Feng shui, as long as they're capable of reading the manual. The purpose is to act out the Healthcare Provision sketch with your hair nice and neat...

They must be getting desperate. What was it Desmond Dekker sang? "Shirt it a-tear up, trousers are gone"? "Po-o-o-or me."

Yes, but only if it does have doctors. Doctors with an interest in conditions like ME. The trouble is that practitioners with six months' training are a lot cheaper in the short term, and the short term is all that seems to matter. We'll likely be stuck with this until the population starts...

In Britain, there's been some talk in the press about Covid jabs possibly being available for sale next year. At the moment they're only provided free by the NHS, but of course only to increasingly restricted groups. It would be good if it could be offered on the 'flu model. Here, if you don't...

From @MSEsperanza: It seems they have a new name: WE&ME Foundation https://www.weandmecfs.org/

Not sure they quite get gaslighting. But anyway, of course they shouldn't pretend they can help, and yes it's demoralising for both groups. But GPs are gatekeepers. People can't get a fit note for work or college without seeing a GP; it's difficult to get some home adaptations or Blue Badges...

From @MSEsperanza – Via Martin Rücker/ Mastodon: "Schwer von #MECFS betroffene Künstler*innen haben in einem großen Kraftakt eine Ausstellung über ihre Erkrankung geschaffen - zu sehen aktuell im Künstlerhaus #Wien: https://www.kuenstlerhaus.at/besuch/kalender/ausstellung/445/crash.html – am...

There might be more than one answer, depending on what's needed from a particular consultation? ME's not something that could really be dealt with in one appointment, so the approach would be influenced by whether it's for initial diagnosis, a fit note for work or education, relief of a...

Not at all! I didn't know it had started because I couldn't feel very much. The cable got into a loop at one point near the end of the procedure, and I felt a cramp then that made me gasp a bit, but the rest of it was okay—all I remember about it now was the very funny nurse and the weirdness of...

From the project website. It reads as if they're only working with people currently having treatment at one of these centres, but I don't know for sure. https://www.bristol.ac.uk/academic-child-health/research/research/genetics/gemstudy/

Whilst Esther Crawley's name has a habit of inducing a tic, is this not useful to pwME in some respects? It would be interesting to know if there is a significant level of misdiagnosis of rare diseases, and the study could offer an insight. If cases of Pompe's disease or LGMD2A are being...

Norwich has been trying to establish a centre of excellence for some time, and it does seem as if we need a couple of these to shift the centre of gravity away from institutions where the BPS school has held sway. They'd need multi-year core grants, so they have the staff resources to go after...

63 pages though ... :confused:

Or because your GP has logged you as at risk. I wasn't considered at risk for most of the pandemic, but I got the booster in May for that reason, and have been offered ongoing access to LFTs and antivirals if I test positive. I'm in my 60s. I think I'm on the list because I take an...

Even if somebody was scripting a new Whitehall farce about how not to improve perceptions of contested illnesses, the Solve story would still be rejected as too ridiculous.

I remember re-reading a history essay I'd drafted on the bus when I was 15, and doing the calculation about whether it would look to the teacher as if I'd at least made a cursory effort, but not as if I'd copied it from a book. I suspect this is how some of the authors of papers like this...