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May 12th/ME Awareness Month - suggest how S4ME might get involved.

Discussion in 'Advocacy Projects and Campaigns' started by Andy, Jan 19, 2018.

  1. Andy

    Andy Committee Member

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    As the title explains, we are looking for suggestions on how S4ME might be able to join in with and promote May 12th and/or May ME Awareness Month, so please suggest away.

    It also looks like MillionsMissing are aiming to generate protests on the 12th May as well, so ideas around this are welcome as well.

    We obviously can't guarantee that we will be able to act on any suggestion but a good discussion around the idea may very well lead to actionable ideas.
     
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  2. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

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    It was confirmed last night that my choir, In Tune, will be singing for ME Awareness Day, 3pm in the atrium at Wheal Martyn China Clay Museum, St Austell.
    I've been blown away by the positive messages and feedback from choir members about the idea and amazed at how many people have or have had ME or FM or friends and family affected. It's been a very emotional few days in my world!

    Wheal Martyn is set in 26 acres of woodland, it's a peaceful place, accessible and Amy, the choir leader, is talking to the café about catering for people with special dietary requirements.
    https://www.wheal-martyn.com/

    I'm hoping this will be an event for us PwME, our friends, families and carers to meet up as well as raise awareness.
    I've joined the ME Association fundraising group and it seems there will be an opportunity to live stream to Facebook and hopefully link to here.

    When things are a bit more organised I'll start a new thread. I hope that posting this early will allow anyone who fancies the ME meet up that we talked about last year at PR, time to plan and get organised.
    I have plenty of space for caravans, campers and tents in my farmyard if it helps.
     
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  3. Andy

    Andy Committee Member

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    Brilliant Liv, great work! :thumbup:
     
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  4. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Am very glad @Liv aka Mrs Sowester that you have had such a supportive response from your choir and friends. We love Cornwall but the journey there is so long. If my heart op works and my antivirals have really kicked in, well....let's see.
     
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  5. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

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    Thank you @Andy :)
    I'll keep my fingers crossed the stars align correctly @Binkie4, it would be wonderful to meet you in person.
    @Jan @MeSci @Agapanthus hope you'll be able to make it. Please tag anyone else who might be interested.

    Last year the bluebells were in flower on May 12th and I'm really hoping they'll be blue for us again this year, it would be perfect.

    The choir is ditching the black uniform and going blue for us too. http://www.intunechoir.co.uk/ I'm hoping there will be a large turn out, there's 150 members, but between 45-100 usually sign-up for gigs. As this one is on a Saturday it should be convenient, especially as members can bring family along.

    I'm going to check out Wheal Martyn within the next fortnight, but it looks to have lots of interesting in and outdoor activities, Mr S is looking forward to seeing the waterwheel.
    The atrium has a glass roof so it should be lit naturally - no nasty lighting, yay! The atrium opens into the café so the audience can sit in either space.
    I'm very excited already!
     
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  6. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    Too far for me to travel, but wish I could. Sounds a lovely event.

    Perhaps record it and sell CDs or online stuff to raise money for research? I'm sure there's techie folks here who could advise? I'd buy! :)
     
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  7. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

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    Can't promise yet @ladycatlover but I think we'll be able to live stream it to Facebook and post a link here.
    We often have choir family members record performances on their phones and upload to the In Tune Facebook page, but it would be nice to try to record it properly. I will try to find a volunteer.
     
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  8. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    Used to love to sing... As a child when bedtime I used to lie in bed and sing all the songs I knew. Back then it was mostly hymns! :rolleyes: What we used to sing in school. And when I'd sung every song I knew I'd finish off with God Save the Queen! :laugh: Suspect parents were relieved when that came round! :rofl:

    Miss singing, don't have the breath any more. I hum a bit these days :angelic:. And choose songs on YouTube to play for husband - stuff from the 60s mainly :inlove:. I can still enjoy music :) even if can't make it myself any more.
     
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  9. Jan

    Jan Senior Member (Voting Rights)

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    Oh wow, that's fantastic news Liv! :woot: :hug: :woot:

    Well we'll definitely be there, the location sounds wonderful. I have just listened to the choir on youtube, very beautiful and moving, brought tears to my eyes.
     
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  10. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

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  11. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Maybe you will be able to get this on local radio or TV @Liv aka Mrs Sowester
     
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  12. Alvin

    Alvin Senior Member (Voting Rights)

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    We can advertise the forum

    We could ask if people have new ideas (as a way of engaging them)

    We could put together an ME/CFS information pamphlet?
     
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  13. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

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    I'll do everything I can to get us noticed.

    The ME Association have a brilliant toolkit of supplies to help fundraisers so I'll take all the help they can give. They offer leaflets, posters, balloons, collection boxes, help advertising in the local press, two just giving buttons for webpages, they are amazing to be honest! I was so relieved when they sent me the details, it was such a weight off my mind.

    The choir often get mentions in the local press and radio - I think some of the members contact them, I'll find out.
     
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  14. MEMarge

    MEMarge Senior Member (Voting Rights)

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    @Andy Do you know if MM are thinking of doing the shoe thing again? Also the Sat probably means Westminster area will be mainly full of tourists, whereas last year it was only approx 1/2 tourists and 1/2 local workers....
     
  15. Andy

    Andy Committee Member

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    There will be protests but I'm not sure if they are doing it in the UK. Just checked http://millionsmissing.meaction.net/ and they are yet to announce the venues for 2018 protests. MEAction Network UK on Facebook last posted something 2nd October last year, hopefully they are just missing a social media volunteer, otherwise it might not be looking too good.
     
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  16. MeSci

    MeSci Senior Member (Voting Rights)

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    I certainly hope I can make it, @Liv aka Mrs Sowester. Maybe can bag a lift from @Jan?
     
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  17. MeSci

    MeSci Senior Member (Voting Rights)

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    Be careful with balloons - if they are released they can cause animal deaths. (Sorry to have a downer but better safe than sorry)
     
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  18. Joh

    Joh Senior Member (Voting Rights)

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    Yep, shoes again (especially as they're shown in Unrest), but other options are also possible, because collecting and transporting shoes can be difficult. A toolkit will be published at the beginning of March. The actions are now called "Visibility Actions" and this years slogan for the US is "Can you see me now Francis Collins?". As far as I know other countries can just take "Can you see me now" or add another name, if fitting. MEAction proposes four different kind of actions (1. cities, 2. your local club/church/school etc., 3. houseparty/garden, 4. individual/virtual.)
    ETA: All of this info is from the lovely @Miri, as I was not well enough to attend the call.
     
    Last edited: Feb 25, 2018
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  19. Jan

    Jan Senior Member (Voting Rights)

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  20. Sbag

    Sbag Senior Member (Voting Rights)

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    Maybe bunting would be easier - one flag per person and they could have pictures or writing on. If they are made with string or ribbon on each side then they can just be tied together. Easy to transport, keep etc.

    Upgraded my bunting idea to t shirt bunting - that would keep the theme of missing people but easier to use than shoes. Can put text on the t shirts and could also have photos. They could all be strung together the same as the bunting.
     
    Last edited: Feb 28, 2018
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