Search results

Thanks - done. Very helpful to have a template.

I find it extraordinary that we're not on the risk list of having worse outcomes. Most of us got ME from a viral illness. It seems likely that we have a genetic propensity for that. So we can surely expect to do badly with Covid - and indeed, to lose more function than we already have, as you...

Ah - sorry, just saw that.

DecodeME may not be able to use it as part of their returns system, but I think they should let people know about it in case people want to use it and pay for it themselves. Many people would be happy and able to do that if it meant they could take part without having to leave the house...

@Andy - I wasn't able to attend - will the video be going up on YouTube or somewhere, for those who missed the live webinar?

That sounds like a productive way forward. Would anyone like to get the ball rolling by providing links to the offending documents?

Is there scope for patients here helping to revise the problematic documents? At a time when a huge wave of new Long Covid patients might be looking to AfME for guidance, now is not the time to have a load of misleading and dangerous rubbish up on the site about CBT and GET.

Just heard a UK government guy (didn't catch his name) essentially seeming to say that the government's policy was to move from Covid being pandemic to endemic. Did I get that wrong, or was it as depressing as I thought? No consideration of suppression. I don't feel safe even...

I wonder whether we should have less hope for ourselves about this, given that I thought that autoimmunity had been already quite thoroughly explored and ruled out for us (or maybe I'm wrong about that).

I heard a BBC news interview yesterday with professor warning about Long Covid and the interviewer saying something along the lines of, 'But the data on that aren't in' and the professor quoting the huge ONS stats on Long Covid back at her. Very weird blindness to Long Covid, as though hospital...

Well done, Andy - excellent letter.

We need a t-shirt with that on.

I don't understand what we should do if we want to watch/hear that.

But these do exist, don't they? Vibration plates? The evidence doesn't seem very good, though. I also think there should be external equipment that gives some of the benefits of exercise to people who can't do it.

Not a bad idea!

Dunno! :)

I think walking is considered too low-impact to be much use (as opposed to running, jumping and hopping).

I've read it's actually both.

I know there are some drugs that stop your body breaking down old bone cells (as you'll know, there's normally a turnover) but it's unclear whether that leaves you with bone of better quality and IIRC the research indicates that there's generally not much effect on reducing fractures - plus...

Maybe, but that's why I'm interested in people's views. I was wondering if it was worth putting it forward for that research prioritising thing.