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I could show you mine, which I was asked to sign around 10 years ago to confirm that it had been issued. It contained my name, address, date of birth, and NHS number. No diagnoses, no medication details, no record of the fact that I'm a wheelchair user. All the pages except the patient ID...

Wonder if it's worth staking 100kr on the announcement of a brand new long Covid centre?

People who have it may be able to. When I developed inflammatory arthritis, it came with a new type of fatigue. My GP didn't believe I could tell the difference, but it was fairly obvious to me. The new type was a pretty constant line across a graph, whereas my ME fatigue looks like a child's...

On the other hand, if I'd filled it in at a couple of points in my illness, I'd have said 'improving' or 'recovered'. I had fluctuating ME, which like investments can go up and down over time!—but even after several years of illness, I didn't yet understand that. For people like me, it'd be a...

I've come across several people (although not ME patients) who're very afraid of dental treatment, and the consensus seemed to be that dentists are pretty good at understanding this. Many are willing to offer a dose of Valium before they start the treatment. I shared an office for years with...

If they changed it to "modern living conditions", it would make sense in Britain. Huge swathes of the population lives with chronically insecure housing, too little income to cover their costs, exhausting and often menial work in stressful conditions, an uphill battle to access all basic...

I've seen several ads on Facebook, at least four or five different versions. The photos used have been really good.

I'm in the weird position of not even knowing for sure when I technically went through menopause. My periods stopped dead at age 44—I just never had another one. I'd had hideous endometriosis, so I couldn't believe my luck! I mentioned it to the GP, but she said that it's not unheard-of for...

Done.

Presumably you've tried pressing the hash key as soon as it connects? This works on fewer and fewer systems now (it used to work on nearly all of them), but I can still get straight through to the GP surgery if I time it exactly right. Since it only takes a second to press a button, I always...

Had Covid jab No 5 a few days ago, the updated Pfizer. Nothing by way of a reaction so far. :emoji_fingers_crossed: It all felt so different, though! No vaccination centre, just a small pharmacy; no precautionary wait in case of a reaction; no paperwork. Obviously he went through the usual...

Yes, and offers free testing world-wide – that's such a great facility to include in their study.

But when pwME are heading downhill, they're no longer uplifts, are they? By definition, they're now hassles. Jaysus, this is basic stuff.

Your last point is why I wonder whether the general principle is the only thing we really can evaluate reliably. What matters is PEM. Avoiding PEM significant enough to stop someone doing things they otherwise could is the object of pacing, and anyone who's still getting it isn't pacing...

It sounds political to me, and it's possible there could be reasoning behind it. For instance, if they happen to know there are going to be big bucks available for a series of projects to redress the historic imbalances where research was always based on male bodies because female ones are too...

I'd guessed it's probably not entirely different to arts funding. There are Funding Priorities and there is Work You Want To Do, and despite them looking very different it's perfectly possible to make the twain meet. A lot of it is about the way you present your case.

I agree we have quite enough hypotheses, but I wonder if he means (a) we need to test some of them properly, and/or (b) hypothesis-based work is what gets funded, so to be successful we need to design our studies with that in mind.

I agree that it'd be great to study this, but one of the stumbling blocks is finding a reliable way to identify when rest is needed in order to avoid getting even moderate PEM. I've tried various strategies for working it out, but always come back to instinct as the least unreliable. Heart rate...

Oral magnesium definitely affects me: muscle pain that has me staggering round the bedroom trying to find a way to get rid of it. I've tried several sorts of magnesium over the years, because I'd either forgotten it was a supplement caused the screeching muscle pain or which supplement it was...

Thank you, it's a really good read. Definitely one to bookmark and re-read next time I can't get the words out myself. British folk do call this the blind spot, so you were absolutely right!