I haven't followed these conferences for years - I remember being really excited about them in the rituximab days and ordering the DVD every year....
I've never 'liked' a post while liking it less. This is a horrific case.
Are there any reliable survey sources on this? @Trish is starting one here, which will be very interesting, but I wonder if there are good surveys...
Thank you, that's a massive relief. I'd been wondering if I'd been gradually becoming more and more stupid without noticing. (Genuinely, it's hard...
This idea of reduction in cerebral blood-flow has been worrying me a bit lately, because wouldn't it lead to brain damage?
Would there be any value in doing a survey of clinics to find out what they're doing? With a view to publishing it?
I've just been reading an article in the December 7 2024 issue of New Scientist, called 'Dripping With Promise' (yuck), which says that 'more than...
Is it significant that a PwME can have quite severe OI without feeling lightheaded? I've had OI for nearly 20 years that has forced me to spend...
What actually is a care plan? Should we all have one? No one has ever mentioned one to me. Who does them? GPs? Practioners in the clinics? Would...
You're right. It's just appalling.
Any thoughts about how we can get some? We seem to be deeply unpopular as a set of patients. Or is it the case that if we ever get physician-led...
I just had a look and was surprised to see that it did, but it includes, 'Do not offer people with ME/CFS ... physical activity or exercise...
It's notable that AFAIK, we don't know the specifics of what the ME/CFS clinics are actually offering PwME and PwLC.
That's a good question. But at the moment, we don't have physican-led clinics, and PwME are being offered all sorts of dangerous rubbish. So I...
Have there been attempts at patient-designed care? @Suffolkres has been trying to get suitable services for Suffolk and NE Essex but I think that...
I wonder if the fact that they're using ICD codes that don't really identify us cleanly means this wouldn't be useful anyway.
Good points! But could some central NHS organisation pull the info from surgeries' databases and do that? Or are the surgeries' data siloed off? I...
BTW, even if they refuse a meeting, the line, 'Cochrane have refused to meet with us' would be very telling.
Nor can I. I wonder if it's particularly easy for them to distance themselves from us and our concerns because our contact has been at a...
I was surprised (having given it zero thought) that DecodeME couldn't recruit via GP surgeries doing a 10-second computer search of their...
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