The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

UNREST screening and reception at the Speaker's House, House of Commons

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Oct 23, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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  2. Molly98

    Molly98 Senior Member

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    This is very exciting, I really hope many MP's attend and it interests and motivates them enough to initiate change in the way in which we are treated. Better still if they addressed the injustices and harms that have been inflicted on ME patients.... but perhaps being too optimistic there..... you can but dream though!
     
  3. sarah darwins

    sarah darwins I told you I was ill

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    Indeed, and given the reputation of lunchtime in the House of Commons, let's hope they're mostly sober when they watch it. Perhaps Jen could take the opportunity to tell them that drinking alcohol is one of the many things most of us can't do. That should get through to them.
     
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  4. Spindrome

    Spindrome

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    Excellent, do you have any preliminary numbers on how many mps are attending?
     
  5. charles shepherd

    charles shepherd Senior Member

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    MPs can access the rooms as they have a pass

    So they can just pop in tomorrow without a formal invite

    But it would be great to know who they are!
     
  6. justy

    justy Donate Advocate Demonstrate

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    It would have been great if this could have been announced weeks ago so that some advocacy - alerting our MP's etc could have happened. Sad to say there is no time for this now. I hope many do attend and it is a great idea.
     
  7. John Mac

    John Mac Senior Member

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    [​IMG]
    Dear John,

    This week is a big moment for raising awareness of ME in the UK with the premiere of Unrest!

    Part of the film's launch includes a screening and discussion for MPs & members of the House of Lords in the Speaker’s State Rooms tomorrow, 24th October, 12.30-2pm.

    We need as many MPs in attendance as possible - and one of the best ways to get them there is if they get a personal request from their constituency!

    Please email and/or call your MP today, asking them to attend the Unrest screening and conversation about ME. You can find a sample note below. Note, everyone has already been invited – this is just to give some extra encouragement and raise awareness of the film and the issue, even if your MP cannot attend.

    You can find your member here.

    Thanks so much for your help to educate and motivate more MPs to take action on ME!

    Onward,
    The #MEAction Team
    Sample letter:

    Dear XXX,

    I'm writing to remind you of a screening of the award-winning documentary, Unrest and discussion for members of Parliament and the House of Lords tomorrow, 24th October, 12.30-2pm in the Speaker’s State Rooms. You can watch a short trailer here:

    The film explores the hidden world of Myalgic Encephalomyelitis (ME), an issue very close to my heart. For decades, 250,000 ME patients in Britain – and their families and carers – have not had adequate access to diagnosis, treatment, care or medical research.

    Unrest will bring you inside the hidden world of patients and families living with this ME. Critics are calling it "riveting...equal parts medical mystery, science lesson, political advocacy primer and even a love story." It opens this week in theaters across the UK. You can read more here:

    ITV News:
    The Times: https://www.thetimes.co.uk/article/our-lives-were-frozen-by-chronic-fatigue-syndrome-rdftnm75p
    The Pool: https://www.the-pool.com/health/hea...lks-to-jennifer-brea-about-unrest-documentary
    Mark Kermode:

    To RSVP, send an email to lucy@shellafilms.com.

    Thank you much for your commitment to this issue.

    Sincerely,




    About Unrest:
    Twenty-eight year-old Jennifer Brea is working on her PhD at Harvard and months away from marrying the love of her life when she gets a mysterious fever that leaves her bedridden and looking for answers. Disbelieved by doctors yet determined to live, she turns her camera on herself and discovers a hidden world of millions confined to their homes and bedrooms by ME, commonly known as chronic fatigue syndrome.

    At its core, Unrest is a love story. Together, Jen and her new husband, Omar, must find a way to build a life and fight for a cure. Their struggle to forge their relationship while dealing with her mysterious illness is at once heartbreaking, inspiring and funny.

    Unrest world-premiered January in the documentary competition at the 2017 Sundance Film Festival, where it won the Special Jury Prize for editing. It has since screened at SxSW, CPH:DOX, HotDocs, River Run (Audience Award for Best Documentary Feature), the Nashville Film Festival (Grand Jury Award for Best Documentary Feature), and the Sheffield Doc/Fest (Illuminate Award). It also has a companion VR piece which premiered at Tribeca and won the Jury Award for best VR at Sheffield/DocFest.
     
  8. TreePerson

    TreePerson Senior Member

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    I think an invite was included in the letter campaign to get MPs to sign the EDM 271 re NICE guidelines. So my MP got invited then and have reminded her. Hopefully a reasonable number of others were also alerted at that stage. But I agree it would have been useful to send separate invitations several weeks ago.
     
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  9. NelliePledge

    NelliePledge plodder

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    Yes indeed unfortunately mine has said she isn't going. So I will have to get myself over to see her in person to get the message about ME to her. I think I will get her the DVD
     
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  10. Cinders66

    Cinders66 Senior Member

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    It was I found out today included in That Campaign but I had absolutely no idea about it as I didn't get involved in the EDM thing and to be honest they're separated issues really so why rely on bundling the two?

    The speaker agreed to this earlier in the year it says and here we have on the day before people frantically contacting MPs with the chance notice is too late. I don't see why #MEaction uk didn't organise this better and why the charities didn't get people to write via their page. How many chances do we get with this sort of event, especially now the APPG how disbanded. Once blue moon. MEaction are saying everyone has been invited this is just lobbying, MEA say 100 invited and no one knows who is actually going in figures.
     
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  11. CFSTheBear

    CFSTheBear Senior Member

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    ME Action have done significant work around this and the EDM, as have the Unrest press team for the screening specifically. There will likely be a record of all the MPs who went post-event.

    The reason you can't say who is and isn't going is that MPs diaries are very busy and subject to change. I've personally seen many who've committed to going - but if something comes up there's no way of telling if they'll be there. My hunch however is that turnout will be good.
     
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  12. Yogi

    Yogi Senior Member

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    It would have been sensible to put out an alert for the parliamentary viewing although it was bundled with EDM.

    The ME association and Charles shepherd should have promoted this as it was known about for nearly a year but he referred to it earlier on the year without any date or time.

    I asked Charles shepherd last week and the question about this was ignored. Thankfully someone else advised me and I have contacted my MP to remind.

    Jen would have been super busy. The MEA is a partner and involved in parliamentary issues along with AFME could have informed people to get their MP to go weeks ago.

    P.s. the Westminster showing is also not listed on the unrest screening website. It was very important for the UK partners AFME and MEA to promote this but have not done so as much as should have.
     
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  13. NelliePledge

    NelliePledge plodder

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    No idea what AFME have done other than promote their own 2 events involving unrest. I was aware of this through both MEA social media and #ME Action. I think both are doing a good job. Charles Shepherd does a good job he has posted the work he's been doing on NICE functional disorders guidelines and has been active on media over SMILE trial. He has also been very active on MEA Facebook. Give the guy a break.
     
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  14. NelliePledge

    NelliePledge plodder

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    Also just to flag up that the parliamentary screening was a key point made By Alistair Stewart on ITN news last week. Pretty good publicity as far as I'm concerned and I used the clip to remind my MP about the event.
     
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  15. Yogi

    Yogi Senior Member

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    Some notable tweets and photos of todays event.

    Hopefully it was videotaped by MEA or MEAction as it would be good to view the Q&A session.

    Thanks to @JenB , MEAction, Unrest team, Sarah Reed, MEA, and John Bercow MP who organised this.

     
  16. Yogi

    Yogi Senior Member

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  17. Yogi

    Yogi Senior Member

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    The wonderful Countess of Mar on the right side of Jen.
    http://me-pedia.org/wiki/Margaret_of_Mar,_31st_Countess_of_Mar



    Stephen Timms MP (who was responsible for EDM271 on NICE Guidelines)
    http://www.parliament.uk/edm/2017-19/271

     
    Last edited: Oct 24, 2017
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  18. Yogi

    Yogi Senior Member

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    Sir Vince Cable MP



    He was supportive of ME sufferers prior to being elected to parliament in 2010. However when elected to a ministerial post to department of BIS he did not help Prof Malcolm Hooper and MEAction UK with their complaint about the PACE trial fraud. BIS is the department that the MRC (Medical Research Council) who funded the fraudulent PACE trial report to.

    Anyone on twitter or whose MP he is should raise the matter that Prof Malcolm Hooper was correct in alerting him about the PACE trial as subsequently now exposed by international scientific community and if he can now help.

    http://www.margaretwilliams.me/2010/hooper-letter-to-cable-re-pace-trial_7oct2010.pdf

    http://www.margaretwilliams.me/2010/letter-to-david-willets_9dec2010.pdf
     
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  19. Yogi

    Yogi Senior Member

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  20. Cinders66

    Cinders66 Senior Member

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    To be honest what matters is how many MPs came and what the messages were and what if any a plan is now on various issues . I keep hearing of the need for more research funding but via what path, do the charities actually think we could & should be getting more money given because if not loads of people are just wasting their breath saying that's what needs to happen because without a plan or lobbying it won't.

    #MEaction seem more focused on GET and NICE, that might have some feasible action plan via petitions etc. That particular issue along with early diagnosis, because I'm decades in and severe are less the bees in my own bonnet.

    It's good if some MPs now know more and care more about the issue and well done to those with limited energy for going and representing us but I'm not sure how much lasting impact now the APPG is over. If certain MPs are now more moved and passionate about this as a neglected field they might convey that to their peers so there's potential to spread. I did see on Facebook that ed milliband hopes to watch the film although he couldn't attend so that's a guy with some clout and maybe with room on his hands for a mission
     
    Last edited: Oct 24, 2017
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