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...
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.
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...
The article talks about a variety of drugs (I shouldn't have posted this when I'm so tired and can't summarise - so sorry!).
I think it's a massive concern for PwME because so many of us can barely move and are going into old age having had zero exercise, for decades. There's lots of research...
In the longer article, there was rather more to it than that (apologies again, I'm too tired to summarise, which must be very frustrating for everybody!).
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