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Creating a Simplified Educational ME site for Public & Media/Press

Discussion in 'Advocacy Projects' started by energyoverload, Aug 14, 2012.

  1. energyoverload

    energyoverload

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    I have been thinking about the need to have a centralised website (endorsed by many advocacy & charity groups) that can explain in laymans terms the research findings in ME. I think the ME PACE analysis on Phoenix is fantastic. It really breaks down the complexities of a scientific paper and illustrates the findings.

    I believe if we were able to clearly explain some of the main and most significant findings in a simplified manner we would be able to start to communicate the true facts about this disease. This website would be primarily aimed at targeting the press and public. It is the public perception that needs to be changed.

    Press releases pertaining to the disease could be published via this website. Therefore we would be creating a centralised location through which all scientists, charities, advocacy groups and medical professionals could release statements. We would then attempt to make the press aware of this site and endorsements by highly regarded ME charities and advocacy groups would demonstrate the unison of our community's voice. We need to identify key areas that different charities can agree upon, it is only by uniting voices worldwide that we will lay to rest the myths surrounding this disease.

    It would be great to hear any ideas,

    Thanks :)

    energy
    leela, Izola, ggingues and 3 others like this.
  2. taniaaust1

    taniaaust1 Senior Member

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    Some of our ME/CFS orgs i think have been hijacked by the other side.. a big question I have due to that is Will we be able to get them to endorse such a site? (i guess if not it will show just how much they have been hijacked).

    I love this idea and its well worth doing.
    Izola likes this.
  3. Izola

    Izola Senior Member

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    Great Idea. Maybe the we can get rid the "then, if after 6 months . . ." dismissive junk. Seriously, this is a great idea.
  4. Snowdrop

    Snowdrop Senior Member

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    Hi EOL
    My first response at seeing your avatar was to accuse you of being the source of my energy deficit. :redface:
    I read it as Energyoverlord. :oops:
    Too much Yu Gi Oh while my son was a kid I guess.

    But really, I think this could be a good idea. A website for public education.
    Perhaps some of the videos that have been made, if appropriate, could be put into a link.
    And the documentaries being filmed could be referred too.
    It would need social media connections (I can't be more specific since I really don't know what I'm talking about).
    Maybe there are reasons that this cannot be done. I look forward to hearing others opinions.
    Izola likes this.
  5. Izola

    Izola Senior Member

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    That's a really good idea. I think its a can do. Right now we really need help in the advocacy area. Once that's done we can get on with your idea & others. You do know what you are talking about. What you said was Chrystal clear. Izola
    Last edited: Dec 21, 2013
    Snowdrop likes this.
  6. Izola

    Izola Senior Member

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    After years of Yu Gi Oh (and "fixed" card games) I read it as "EnergyOverlord", too.
    Yours is a great idea. Its the thought that propels action. Spinning around Is all I'm good for now. Yet I think this could get off the ground. IZ
  7. SickOfSickness

    SickOfSickness Senior Member

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    The original idea was posted in 2012.

    Is there not already a site like this which gathers the evidence for ME/CFS?

    The main problem I see is organizations wanting to promote their own site or FB page. They usually have some info pages explaining what ME is, how little funding we have, etc.

    I like the core idea. If we decided on a good format and plan, I am up for doing some of the website work. We would need enough of us with marketing abilities, as well as writing, or enough donations to hire marketers and writers.

    I believe that many bloggers or posters would let us repost their writing, if they already wrote an explanation, like some forum members do.
    Snowdrop and Izola like this.
  8. Izola

    Izola Senior Member

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    SOS: You're way ahead of me concerning marketing our illness. I won't even go in that area unless specifically asked. My skillset is elsewhere.

    Please lead us to the 2012 site of which you spoke.

    Have no doubt I have no subversive or other personal agenda except wanting to stay alive longer and not die unmedicated. I'm just a voice in the wilderness. I do not want our government to continue killing us off with either obliviousness or intent.

    The evidence I spoke of is of a particular nature. We need you all's assistance not just for one thing. That list is partial and there will be more.

    We need every one who can to volunteer to help according to their ability and desire to not have their medical care reduced to CBT and exercise. so the Legals can continue to line up our ducks if faced with any legal onslaught.

    REMEMBER THE SAYING "MANY HANDS MAKE LIGHT WORK." Maybe that was just my Father jn Law saying that. But, it is so so true.

    If everyone volunteers to do a little. then we don't break the backs of the few. Izola
  9. SickOfSickness

    SickOfSickness Senior Member

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    I feel the marketing is key.

    I was just saying that this thread was started in 2012.
    Izola likes this.
  10. alex3619

    alex3619 Senior Member

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    Nice to see people have been thinking about this for over a year, even if only occasionally. In May last year I was going to write a blog proposing not a simplified public relations site, but a high quality one the media will want to use, and to base it on broader subject matter than just ME so that it will become a hub of good media releases. I was going to suggest that it site links to serious articles, science, scientists, reviews , commentaries etc that are of the highest quality, and allow peer reviews. It was always likely this would need a twin site, such as the one suggested in this thread. Unfortunately I never got around to it due to injury, maybe I will get it done by May this year though.

    However another option occurs to me, one site that has a science only section, with scientists or other bone fide commentators permitted but not the general public; an ME advocacy stream where we can comment on all the same things; and a general public stream, where anyone can comment.
    Izola likes this.
  11. SickOfSickness

    SickOfSickness Senior Member

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    I would like to see more members commenting on this thread, or send me a message if you want to work on this or have suggestions.
  12. Snowdrop

    Snowdrop Senior Member

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    I no longer have the mental functioning to contribute much to the conception stage. It would require holding too many ideas at once.
    But I can and would contribute what I could when the concepts are put together in terms of editing or otherwise suggesting possible content.
    Also perhaps we know people outside forum members with the skill sets that could help.
    This would be great synergy with the documentaries coming out and there is so much existing and authoritative content that could be used.
    Whatever the IoM outcome this would stand as a real and accurate source of information on ME.
    We could also rotate quotes from famous people like Llewellyn King, Laura Hillenbrand, Shirley Conran, Howard Bloom and various clinicians and researchers.
    Izola likes this.
  13. Izola

    Izola Senior Member

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    Alex3619:
    I can't believe You would put that much pressure on my brain. Oh, Uh. oh. sorry This is for the smart people. I'll go back to making clay green peas. Iz

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