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.

UK: advocacy/fundraising radio phone-in opportunity tomorrow (Weds 8th June)

Discussion in 'Action Alerts and Advocacy' started by Sasha, Jul 7, 2015.

  1. Sasha

    Sasha Fine, thank you

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    If I were capable I'd be phoning into this thing and mentioning the Invest in ME rituximab fundraiser and the hot-news rituximab stuff and the MEA's Charles Shepherd's call for a big, multi-centre UK trial - brilliant awareness and fundraising opportunity, if they'll let you talk about it.

    Remember, loads of PWME aren't even aware that research (or research charities) exist.

    It's BBC Radio Bristol but you can phone in from anywhere in the country.

    Bristol is one of our major UK cities with more than 400,000 people so that's a major audience.

    It only takes one millionaire to hear you!

     
    Last edited: Jul 7, 2015
  2. aimossy

    aimossy Senior Member

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    People get this onto your fb groups! You just got a radio station on your side that has a large coverage in the UK! GO NAOMI and TOM!
    Mention Rituximab!
     
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  3. Sasha

    Sasha Fine, thank you

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    Bump! :)

    Your chance of fame and glory, guys! :star::star::star:
     
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  4. eafw

    eafw Senior Member

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    Clean link to the BBC programme, worth listening to it was very good

    http://www.bbc.co.uk/programmes/p02w3d9d

    Advice if anyone is going to call in tomorrow (Weds 8th): it is best to pre-prepare with some notes and a couple of quick and easy points.

    Avoid long speeches about things that will be meaningless to anyone outside the ME world, keep any science or medical jargon simple as possible. Be diplomatic (OK to have a go at the failings of the NHS as an institution but be careful about slagging off individual GPs and professionals that could be on our side if better informed).

    Also, rehearse what you want to say. The presenters - however sympathetic - will put you on the spot and it's very difficult not to um, er, um ... waffle... er, in that situation.

    People listening will take away soundbites, and repetition is fine if it makes the point.
     
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  5. Sasha

    Sasha Fine, thank you

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    Good points, @eafw - what we want out of a platform is for people to come away with an understanding that (a) this is a devastating organic disease and (b) that they can do something to help, BY DONATING TO OUR RESEARCH CHARITIES! :angel:

    And the rituximab story is a very helpful, positive story and it's news, which journalists always like. We don't want to drive people away by ranting against injustices that we won't have time to explain properly and will just sound weird to the uninformed listener. Positive, positive, positive... we're recruiting.

    People want to jump on a bandwagon that isn't just rolling but that is winning. Our bandwagon is now winning and people can donate to it (I've really murdered that metaphor). :nervous:
     
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  6. Alison2

    Alison2

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    I managed to listen to some of it.it was very very good.well done naomi , speaking from her bed.
    highlighted severely affected. And the need for research etc
     
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  7. Sasha

    Sasha Fine, thank you

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    I caught the last ten minutes and it was top-notch. Patients put the reality of things across superbly. Very sympathetic hosts. Sonya Chowdury of AfME was also on (I think AfME are Bristol-based). The patients made lots of calls for more research but I don't know if anybody named a research charity during the earlier part of the programme. Hope they did!

    I'm hoping it will be available on 'Listen Again':

    http://www.bbc.co.uk/programmes/p02v01vk

    I heard Naomi make some comments and she said she wasn't well enough to sit and was lying in bed as she spoke. I hope that helps people 'get it'.

    Superb job, Naomi, and 'V' (?) from Montpelier and everybody else who took part. Looking forward to listening to this.
     
  8. Sasha

    Sasha Fine, thank you

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    Oh! Might be still going on!

    94.9 FM, folks, or you can hear it online at the link above.
     
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  9. Sasha

    Sasha Fine, thank you

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    Yes, they're still talking about ME.
     
  10. Sasha

    Sasha Fine, thank you

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    They just mentioned that they have a FB page - can someone who knows how to use FB post about donating to biomedical research charities, and name them so people can find them? IiME, MERUK, MEA's Ramsay Research Fund...

    https://www.facebook.com/bbcradiobristol/posts/913044938752613

    Their ME feature is still going on because they've had such a big response.
     
  11. Alison2

    Alison2

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    Just tuned in real quick - just to see - cant cope with radio - they were still talking about me.
    they heve had a massive response. The guy said it has gone viral (whatever that means)but think it must be good!
     
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  12. Sasha

    Sasha Fine, thank you

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    The 'viral' thing was a video by Tom Whittingham about his sister Naomi who has ME and was on the programme. Do a site search on his name and you'll find it - brilliant video!
     
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  13. Sasha

    Sasha Fine, thank you

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  14. Bob

    Bob

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  15. Sasha

    Sasha Fine, thank you

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  16. Bob

    Bob

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  17. Sasha

    Sasha Fine, thank you

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    This guy is great! I think his new piece deserves a new thread because he's asking for our help on content. I'll start a new thread.

    Thanks, Bob.
     
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  18. snowathlete

    snowathlete

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    Brilliant. More evidence of the change that is occuring as far as our disease is concerned. And from the town where I was born.
     
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  19. Bob

    Bob

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  20. Alison2

    Alison2

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    Just seen on twitter that he has nominated charlotte leslie , mp for bristol north west, and steve lefevre ,
    radio bristol breakfast host , to a me chilli challenge stand off !
     
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