The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

How we can hijack the media, in four easy lessons

Discussion in 'Phoenix Rising Articles' started by Sasha, Jun 30, 2015.

  1. SickOfSickness

    SickOfSickness Senior Member

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    Izola, Anne, Valentijn and 2 others like this.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I will post them if they occur to me, but can't commit to anything due to needing to prioritise self-employed work and other essential activities. I can only post when I'm resting between activities or when it's raining (I sell plants).
     
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  3. Anne

    Anne Senior Member

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  4. Anne

    Anne Senior Member

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    Here's what I've found so far:

    The IACFS/ME Primer, written for medical professionals
    http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf

    Stanford ME/CFS Initiative: What is ME/CFS?
    http://med.stanford.edu/chronicfatiguesyndrome/overview.html

    Open Medicine Foundation: What is ME/CFS?
    http://www.openmedicinefoundation.org/what-is-mecfs/

    Columbia: Center for Infection and Immunity: ME/CFS
    http://cii.columbia.edu/research.aspx?8Fo92f

    Bateman Horne Center: ME/CFS
    https://www.batemanhornecenter.org/symptoms-of-me-cfs/

    The Microbe Discovery Project: About ME/CFS
    http://www.microbediscovery.org/aboutmecfs.html
     
    Last edited: Jul 21, 2015
    ahmo, Bob, mango and 2 others like this.
  5. BurnA

    BurnA Senior Member

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    Sasha,
    Great article. Might I add one further idea ...
    Most of the standard 'medical' websites ( the ones that appear in the top of google searches for any medical issue ) have no or almost no reference to the potential benefits of rituximab and ME/CFS being an immune disease. ( EG the Mayo clinic lists virus and psycological stress as the potential causes ) Is there a way to get these websites to update themselves ? I think this would be very beneficial as this is a resource a lot of poeple ( including lazy journalists ) go to to find out about a disease.

    Maybe we could start a campaign to target certain websites ?
     
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  6. Sasha

    Sasha Fine, thank you

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    That's out of the scope of "hijacking the media" but I agree that if there are sites with outdated info - or info that's just plain wrong - then it would be good to get them fixed. I think that that kind of thing would best come from a charity so that the organisation would trust the information: but individual patients could help a charity draft up an appropriate letter and get some good info together.

    You might want to start a fresh thread for that if that's an idea that you want to discuss more - people won't find it here. :)
     
    Anne likes this.
  7. BurnA

    BurnA Senior Member

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    OK thanks, i thought in a way it might fall under hjacking the media, but maybe theres a better title...i cant think of it but suggestions welcome!
     
    Sasha likes this.
  8. Sasha

    Sasha Fine, thank you

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    The "media" generally mean where transitory news stories appear such as newspapers, radio, TV, magazines, etc. rather than a website's static pages.

    How about: "What can we do to get medical websites to provide better information about ME/CFS?" or something like that?
     
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  9. BurnA

    BurnA Senior Member

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    I think that's a great title ! In fact it's so good I would feel bad about taking it so I think you should set up a new thread :)
     
    Sasha likes this.
  10. Sasha

    Sasha Fine, thank you

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    Well, no, it's your project! The title's all yours. :)
     
  11. taniaaust1

    taniaaust1 Senior Member

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    They usually don't though now days. They just tend to steel things from each other and rewrite them slightly. Have you noticed that if a story breaks somewhere, it will then start quickly breaking everywhere else, often with indentical quotes etc in the articles.

    For us to get in news publications, we need to put the info right in front of their noses.

    Great article Sasha.
     
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  12. Nico

    Nico

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    Really great Sasha! Thanks for this.
     
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  13. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Hey, @Sasha, Tom Kindlon has put a link to your article on Facebook. It's a good one.
     
    Sasha likes this.
  14. Sasha

    Sasha Fine, thank you

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    Thank you, @Tom Kindlon! This is a good skill that our whole community needs to have - thanks for spreading the word. :thumbsup:
     
    Tom Kindlon likes this.

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