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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...

This is why I feel any references to "spoons" ought to be retired permanently. Some people who were open minded enough to try and understand what it's like to live with chronic illness now assume that people know how many spoons they start the day with. Why wouldn't they? It's what the spoon...

When I still used social media, I'd capitalise any hashtags I made up for just this reason. It means screen readers used by visually impaired and blind people can make sense of them, but also people with squelchy ME brains!

It's disappointing that they don't say whether this is in addition to the horse tablets and bleach, or instead of.

"Sorry. Had an ME moment. Completely forgot what would happen if the medical profession found out we'd made up yet another name for something half of them don't believe exists in the first place."

That's quite an oops, isn't it.

That's a good question. Is known efficacy of a drug on a symptom enough evidence? Presumably that's how at least some drugs are applied in trials. It doesn't seem unusual for it to remain unclear how some drugs work even decades after they were introduced, so the relationship between drug and...

I did wonder whether that might be the case, but I can't read numbers and statistics very well (dyscalculia). I suppose it's one of those things that has to be noted if you find it, because if it's also found in larger follow-up studies it could be something—but equally it may not be anything...