HI everyone there is a feature on bbc radio five live about severe me today.with Charles shepherd ,a severe me person and also be a phone in . from 3pm. I''m severe / very severe and struggling today - so its on the me association website if any body could put up a link etc and if anyone wanted to listen etc - I wont be able to.
Programme: Afternoon Edition Station: BBC Radio 5 Date: August 8, 2018 Time: 14:35 MET Ref: https://www.bbc.co.uk/programmes/b0bd75rp URL: http://www.bbc.co.uk/radio/player/bbc_radio_five_live Item: Severe ME Day
We never get beyond just saying what’s wrong and should be there to how we can actually get there . Regarding no inpatient places, what can be done? we have been calling severe ME care poor and patchy for years , 2004 MEA were saying that in the purple book. We say we need physician led services , well how do we get that when dr Bansals post in Surrey is being advertised as open to psychiatrists? Many CFS services will say they don’t have the resources to provide care for the severe, how can we lobby them to make this an area they can’t easily ignore? The 25% group Facebook page mentioned nothing about this day previous to it happening and nothing was organised this year so whilst I’m not a fan of MEA in their previous treatment of the severe thank goodness they arranged this and sent out a press release, even if little was taken up. The radio section itself was reasonable. Unfortunately whilst Ellie the severe case study did a good job of describing living with it, her ideas of treatment eg reflexology, supplements still to me reflect the newbies naivity and it wasn’t emphasised enough the lack of medical treatment options beyond pain and sleep management and the lavk of research in the severe to find them. The radio broadcaster was knowledgeable and sympathetic I just wish we could get past this stage we have been stuck in for years and be able to have programs calling for public to donate money to enable an exciting drug treatment trial or something, assured they’d be sympathetic and generous as Alzheimer’s and MS are.
