hmm … rather suspicious of this term being invented to be used inaccurately for those ‘needing to lie down’ just like we see eg anorexia being...
It also seems to be partly about how they’ve been allowed to lead and set up their lives and working lives when we were describing eg what BACME...
But that ‘association’ is generally very cart before the horse to a jaw-dropping extent I can’t believe they get away with the mis -citing (it as...
It is weird because the leaflet describes how there are two types of pacing: quota-contingent and symptom-contingent and then tells people they...
I'm also unimpressed with the sum total advice for universities:
UCLH research finds that Long Covid patients who lost sense of smell can be helped with surgery : University College London Hospitals NHS...
it is a sidenote as this is about vascular EDS, but not unrelated as it seems their charities are sponsoring 'groundbreaking research into...
This is an important laying out of what needs to be discussed isn't it? If we are talking about whether using exercise in some form as a therapy...
Is it better? Or should they have put a caveat and a link to the paper that made it clear this was because they’d been hospitalised (rather than...
And the irony that if you have continual decline type in the poor information situation that there has been up until now (and until whenever this...
I’m not sure on the analogy the bit that is missing from it is whether said special issue is planned ahead enough ie one done deliberately to try...
This
Yes I’ve seen in other places that certain clinic’s have used their fatigue clinic model to eg get grants from cancer charities or maybe nhs to...
I’ve just noticed the last paragraph of this: “BACME is a charity that represents clinicians, specialist ME/CFS services and people living with...
I’m putting this here but it can apply to a lot of topics and whilst it id good in length and getting some points across I’m sure there are others...
I was thinking this - that it doesn’t mean they think the methodology was a problem and their latest stuff has simply rebranded with the same...
Except they fail to mention I assume many were as poorly as they were due to their treatment being harmful in top of the illness, where other...
Indeed to the normal long term responsibility on care the other issue is that the relapse term used for cfs comes from mental health/regab...
This one particularly relates to the NIHR type nonsense, therapist-based and other psychosomatic misleading research I have seen far too much of...
Me too
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