" LOUGHBOROUGH MP Nicky Morgan has said she will work in Parliament to raise awareness of the devastating illness, ME. She spoke after joining viewers at a town screening of Unrest, an Oscar-shortlisted film by Harvard graduate Jen Brea which documents her life as a patient with Myalgic Encephalomyelitis (ME). The screening was organised by Sarah Reed, wife of former Loughborough MP Andy, and former university lecturer Malcolm Pullan – who both have ME – as well as a team of volunteers. Last month Mrs Reed spoke publicly for the first time about the chronic illness that left her so exhausted she could not get out of bed – even when she thought their house was being burgled." full article here: https://www.loughboroughecho.net/news/local-news/mp-nicky-morgan-raise-awareness-14639597
I have written to Nicky Morgan to thank her for her interest, as well as writing to ask my MP to sign the EDM.
She was very unlucky to have two husbands with ME. Sorry to be flipant, but that's how I read it the first time .
> On 15 May 2018, at 15:22, MORGAN, Nicky <nicky.morgan.mp@parliament.uk> wrote: >> >> Dear ……………....…. >> >> Thank you for your e-mail and I am sorry to hear about your illness. I hope you are feeling better than you were at the end of your e-mail. …………………………………… ……………………….………… >> >> I recently saw Unrest - what a very powerful film. Jen Brea is inspirational. That is good to know about Ed Davey and I will let the other MPs know. We plan on holding a debate in the main chamber as soon as we are given the time to do so and I hope we can voice, adequately on behalf of you and the many other suffering, something of what you are going through and how damaging the trial was. >> >> With my very best wishes I was very pleased to receive this reply from Nicky Morgan MP to the email I sent thanking her for her commitment to raising awareness about ME. I had to finish writing abruptly because I felt ill: I was impressed that she picked that up because I didn't state it explicitly. She has also " got" the damage done by the Pace trial. Now to continue to try to work with my MP who has been receptive.
I just wrote Minister Morgan myself to thank her from across the Pond for her support for our community there in the UK. Perhaps knowing the news of her work to raise awareness has reached as far as Los Angeles, and how deeply her actions are appreciated even from afar, will help give her fortitude in advancing our cause? Thank you Nicky Morgan! Bill
Nice work @Bill. It does no harm for our MPs to realize that, while they may deal with one individual, hundreds or more people worldwide are interested, see and take note of how the individual was treated.
The more the merrier. Still seems weird that UK politicians are more willing to speak out about the problems with PACE than those employed in the UK to scrutinise research.... I know how broken UK science is, but I just can get my expectations low enough. [edit: Alternatively, maybe my expectations of MPs were too low, and I was wrong to assume that they'd never dare challenge Sir Wessely's chums].
The UK libel laws are infamous for being OTT. Politicians, however, get Parliamentary privilege. They can say what they like in Parliament without getting sued. I think that's a big factor in it.
Also politicians need our votes at times. If we are persistent enough, it is in the interests of politicians to listen. Our seat changed hands recently, and the previous incumbent was " a new boy" looking to build his majority, and not of a party we supported. It was still possible to get him to write to Univ of Bristol about Crawley's research. The answer was of no help but he had been persuaded to do it. I think we could use the political system more but it means individually written letters and responses to responses. Incredibly hard work which not many can do often. Petitions and template letters- am not really sure that they achieve a lot although maybe Dr Myhill's will. Anyone know what's going on there? For me it's an energy problem. It's just too draining but definitely worth doing if you can find energy.
I'm delighted to report that I just received a very nice e-mail back from the Right Honorable Nicky Morgan MP who among other things says: "I hope that the UK House of Commons can do justice to the issue when we get our debate." Indeed, let us hope! Bill
Well done @Bill. Thanks for writing from across the pond. I do think we need to be pushing our MPs more, but not sure how to do that to those who are determined not to be pushed. Logical persuasion? Hearts and minds?
