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Has anyone appealed to celebrities/philanthropists to help us?

Discussion in 'Advocacy Projects' started by knackers323, Aug 23, 2013.

  1. taniaaust1

    taniaaust1 Senior Member

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    Would it mean if the bond uni group was getting donations directly for ME/CFS research that the Queensland Gov could consider that when granting funding to them and could grant them less due to that in future due to seeing then less of a need???

    Does the Alison Hunter Memorial Fundation help pay for some of the ME/CFS research at Griffith uni? or just the Queensland gov put some in? (I trying to remember who funds that research currently).
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Bond researchers have moved to griffith uni which is a bigger better funded uni attached to a hospital. From memory the funding was a mixture of govt and private funding. Not sure they would reduce govt funding if private donations came in. Sometimes the govt will match dollar for dollar with donations. Could be interesting if that happened. I would assume the govt will be putting more money into cfs research especially since the moved from bond uni which is private to griffith university Hospital which is public and also spent alot of money on expensive research equipment.

    Hopefully these are promising signs of ongoing interest by the govt??
  3. peggy-sue

    peggy-sue

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    There was a documentary on tv just last week with Frank Bruno being incredibly brave, talking about his bipolar.
    I know he's a bit of an exceptional person, but this does mean that some celebrity HAS finally spoken out in public about a really difficult "mental" disorder.

    I have always wondered if the politics would be something that Mark Thomas might like to get his teeth into.
  4. Sasha

    Sasha Fine, thank you

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    peggy-sue likes this.
  5. peggy-sue

    peggy-sue

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    I'm not sure he's done such a good job of it as Frank Bruno did. I didn't watch the whole thing - but what I saw was very painful. He showed himself when he was down. We only see Stephen Fry when he's on an upper.
    Don't get me wrong - I have a lot of respect for Stephen Fry, and I got a bit upset for him when the very public and very loudly self-opinionated psychologist Oliver James decided Mr. Fry was simply a narccissist.
  6. Delia

    Delia Senior Member

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    The article in Justy's thread, about the young girl who committed suicide waiting for help, is another good story.


    I also recently read that Florence Nightengale, the star nurse, the founder of the Red Cross who devoted her life to helping people in need developed a mysterious illness much like ME/CFS. I need to research this more. Another good story- just as Albert Einstein and Asperger's... Helped people understand.

    What helped for autism to come together: ( it was a mess like we are in now and families too overwhelmed like we are)

    #1 Temple Grandin started writing books and speaking at conferences

    Celebrities started having kids with autism! And so did writers, directors and people in the media...

    (new Yorker writer recently wrote article over her mysterious illness I don't have the link handy but advocates are seeing ME/CFS and writing about her and to her)

    (We could research celebrities who have fallen out if the public eye and not due to addiction etc)

    Take the shame away! It was hidden before as families were blamed for the condition just as we are told it's all in our head.

    Disparate autism advocacy groups pulled together to become a few large organizations vs many small ones and developed focus and goals

    Stories including characters with autism started coming into the media (movies abd tv)that were no longer full of bullshit, and became more accurate

    Documentaries

    (Right now a documentary called blue ribbon,I think, is being made, it's on kickstarter, they got enough money, but they have an interesting trailer on the page)

    Disagreements in the community: families had to agree to disagree in orivate and present a united front in public : a spectrum of needs/therapies wanted. No more bickering in public if possible! On what is better than the other...

    Those are off the top of my head.

    I propose getting a plan together and some research (people research vs medical right now) behind it, and make planned overtures to the right people, in a co-ordinated way. :D








  7. Delia

    Delia Senior Member

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    I'm new here, but this is great information.

    I've got a bit of fire lit under me after reading Justy's post today.

    As a parent of a child with autism spectrum disorder I was in the trenches and watched the autism awareness and autism advocacy transform over the last twenty years. I think autism provides the best model for improving advocacy and awareness fir us than any other condition.

    It feels very much like the lay of the ME/CFS land is where we were 20 years ago...

    If you know of any more people in the media or celebrities connected to cfs it would be great to get a list.

    I would say lets not get too down on them. They might have received the same horrible responses from family friends and coworkers and colleagues as we have. As well as the World view that puts so much shame on cfs.

    I say, let's make a plan. Screw approaching the usual suspects. You are right about them. I'm down for some people research and finding the non-usual suspects. :)
    knackers323 likes this.

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