Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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would suggest you start at 1hour 40 as it mentions the new trial on children set to come out plus one phonecall.
Have just done so! I hope other parts of the BBC will follow their example (and invite Dr Shepherd on too, of course!) Thanks, Dr Shepherd.
I think a friend of mine told me they already had an mp3 of it.
The problem is, as it stands, even these people will just say "no tests, no treatment, can't help you". We need the research first. However what can happen now is proper appreciation of the issues by doctors, a recognition that GET is bad, and a move toward appropriate social support and acceptance. In just two years we might be in a position to start pushing hard for local clinical trials of treatments, and by that I mean pushing things globally. The science is changing and its partly up to us to make sure that this is recognized.
Yes. Programmes' funding is strongly linked to the BBC's perception of how much public interest there is, so if we wish to see more of the same then we should make sure our interest is clear for them to see.
Repeated my thanks, with more time to do it justice last night, to Kaye's own email address.
Sorry, I am not up to speed on this. Could someone give a quick outline please, or a link. Thank you.
