Not sure whether this makes it accessible to people elsewhere: WebRadio: https://www.bbc.co.uk/programmes/b0...Syxl1P_iXJ4PHYzTm3W1bbGHynehQ3z7f_ruVT9Uag2sY
A good listening and well done BBC Scotland. C Shepherd and C Monaghan tells us what we know so well and have heard a thousand times. Hopefully outside people get insights to ME and the many challenges. Interesting listening to Stuart M, which I thought was very clear and tells it like it is. Everything very familiar, and surely he is a great spokesperson. If I have got it right, it’s fascinating that ME sort of took him down the road and retrained him from the route of living a “normal” life and becoming a “pop star”. That probably sounds unreal to many, but I think patients can understand just how that is a possible because of the devastation of the disease, the complete turn-around and fundamental adjustments necessary.
Dr Charles Shepherd is A lot more perky than I Am after thirty years. I feel there’s a limit to the number of these type programs you can listen to. MY HIGHLIGHTS Kay asked some pertinent questions, what Steps versus just “awareness” , what “treatment” versus just management. But the answers are same old, obviously. Carol highlighted the children’s issue which Is a slightly new angle. Stuart spoke well when he said GET was a pathetic response to ME and he contrasted the USA with uk, he’s getting “treatment” from a Californian dr there. He’s found benefits from LDN. Dr Charles Shepherd said in uk drs are more restricted. Stuart also highlighted how people with ME just want help to be functioning Again. Kay said uk care seemed pot luck. I think that kay Can’t understand why things stand still, like most of us. Dr Charles Shepherd said theres No nhs drs in Scotland. Kay asked carol what hope did she have she could actually get some results from her four asks. Carol said many of the bad things happening wouldn’t if more biomedical research understood and validated ME. Questions were asked on FM vs ME same or not, i would like to see more effort to establish the similarities and differences here. Does fm get pem like us? It’s not helpful to ME being lumped in with an illness seemingly less harmed and more helped by exercise. Dr Charles Shepherd has said elsewhere that the biobank could include FM samples if arthritis uk paid for it. Also asked whether any specialism has owned us, Dr Charles Shepherd said no but that’s ok as long as can see a knowledgeable dr and we have excellent ones , I think it’s a problem actually as the lack of ownership means few physicians and we have few excellent ones, The Scottish government gave a defensive statement on their care and research record
@1:25:00 - Charles Shepard said psychiatrists hijacked ME (which I commend him for). @1:36:10 - He says the NICE guidelines are being rewritten (Does any one know more about this?).
