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What is it with some Americans? I once convinced one that western Ireland has an extra day of the week.

I've always told everyone who asks about my illness. Nobody's scoffed at it, and thankfully few have said "Have you tried...?". But I've needed a wheelchair outdoors for most of the time since my diagnosis, and that will make a difference. I don't think I've ever felt as if I haven't achieved...

Ach, come on you lot. These people staked their whole careers on an all-or-nothing outlook: you think up one bunco, and keep working it on different people. It's hardly surprising they're preoccupied with it.

Yes, my onset was gradual over months, and I don't know the trigger. There was no illness, just able to do less and less over many months. Odd as it might sound now, it never occurred to me that I was ill. I didn't even feel unwell, I just had weakness, low energy, and slow recovery that were...

I wonder how match funding works in research? I'm only familiar with a system of favours, where small companies negotiate bits of spare capacity—rehearsal room days, time in the metalwork shop, loan of equipment that would otherwise be on a shelf—from bigger ones, in return for a reduced show...

The approach in swimming now seems to be that exposure is probably the best way to deal with the virus, since avoiding it doesn't work and most kids exposed to it eventually develop immunity. I imagine the NHS has taken a similar view, and verrucas are only treated if they're really problematic...

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/