Discussion in 'General ME/CFS News' started by Cheshire, Oct 23, 2017.
How do you get a copy of Unrest for your MP? Have I missed something?
Apologies for my pedantry but my understanding is that the UK legislature is Parliament, which consists of the House of Lords, the House of Commmons and the Queen. All MPs are members of the Commons, and are therefore part of the legislature. Did you mean they are not (necessarily) part of the executive (ie Government)?
More importantly, I wanted to say thank you for attending this event. It is my impression that you are becoming more and more involved with ME advocacy, for which I am exceedingly grateful, particularly as you do not have any personal connection with ME (as far as I’m aware), and you are unpaid – a very rare combination. Have you considered writing a “Why I became involved with ME” artlicle – maybe for the CureME website, or, if you could persuade them, for one of the newspapers?
Finally, drifting a little further off topic, I remember a while back you or Charles mentioning on PR forum that there was a BBC TV documentary on PACE (or related issues) “in the pipeline”. Is there any update on this?
I've had a reply from my MP, Tory (conservative) Scott Mann, to my request that he attend the screening of Unrest. I'll just provide quotes as I'm not sure if it's allowed to quote the whole email.
"Unfortunately I was not able to attend the screening on the 24th due to a very busy day of meetings, however, I will look at the below web links."
? There was only one link - this one - https://www.the-pool.com/health/hea...lks-to-jennifer-brea-about-unrest-documentary
"the Government is planning to bring forward a Green Paper on social care to look at how we can improve the level of care for people who have illnesses or who are elderly or vulnerable, and when this is published, it’s important that people with ME and organisations who represent them give feedback to the public consultation - which will be launched as part of the Green Paper – so that their concerns can be addressed and that care can be improved for people with ME.
I take this issue very seriously, as it can be very tough getting the appropriate care in rural areas."
Hmm...it can be tough for everyone when the illness isn't even recognised or researched. He doesn't seem to know much, if anything, about ME.
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