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.
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Severe Patient Requests "Agreement Challenge"

Discussion in 'Advocacy Projects' started by Laurie P, Apr 26, 2016.

  1. Laurie P

    Laurie P

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    New England, USA
    There has been a "Chili Challenge"
    People are now being asked to "Wear Your Undies On The Outside for ME/CFS"

    I'm a severe patient and I'm asking people to take an "Agreement Challenge". This is a huge forum. Think of the kind of power we could have if we came together on all the things that we already agree on and could use that to communicate with congress, NIH, media and others. How many people would sign a comprehensive petition like that? What do we deserve like any other disease; not what do we think we might get? What would that look like?

    Please read my posts on this page. While it was part of another conversation, it contains some of my ideas and I can't write anymore.
    http://forums.phoenixrising.me/inde...-to-give-solve-webinar-21-april.43573/page-10

    Please read this post.
    http://forums.phoenixrising.me/inde...ng-gets-24-000-signatures-and-counting.44259/
    I find it astonishing that she didn't do this inside the ME/CFS community. Does that tell you something?

    This is all that I can do. The rest is up to anyone who responds.
     
  2. Laurie P

    Laurie P

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    New England, USA
    Can we all agree that ME/CFS should be funded at a level equal to comparable diseases or do we want less?

    Can we all agree that homebound patients should have medical care at home, by phone and/or internet like the P2P report said or should they just suffer and die?

    Can we all agree that we need Centers of Excellence like doctor Peterson talks about in one of the ME/CFS Alert videos or should ME/CFS patients go without care?

    Are there other things we can agree on or do we disagree on everything?

    Are there people willing to contribute to this or is it a waste of time because we don't want a central document that everyone agreed on and signed?
     
  3. Laurie P

    Laurie P

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    Can we all agree that Ron Davis and his extraordinary team should be funded? Can we use his rejection letter from NIH that he released online, his videos and interviews where he talks about how NIH won't fund him and the fact that he has to wear his underwear on the outside to raise money to help our cause? Would this be a helpful thing to put on our petition? What would President Obama and congress think of this if our petition was sent to them? Did President Obama really hold up to his end of the bargain? He'll be leaving office and I don't have medical care. How about you? I can't wait, how about you, how about Whitney, how about other severe patients?

    Can we all agree on this? How many people would sign a petition with the kinds of things I've been writing about, a few, 1,000, 2,000, 10,000, 20,000, more?

    What would the outside world think of us if we actually did this and they could see how profoundly our needs are unmet and how reasonable our requests are?

    If we all felt better represented through this petition and could refer people to this petition when we sent email, how much would this reduce the kind of email that's being sent that many people are condemning and that the recipients may not understand? How much would this reduce the endless discussions over who should or shouldn't say this or that? Can we set a different tone of communication instead of trying to suppress people? How much would a petition like this help everyone understand us better?

    Can we all agree that ME/CFS is a biological disease? How can we support that? What can we say?

    Can we all agree on PACE? How can we support that? What can we say?

    Can we all agree that we appreciate the NIH study but that we also have concerns that we would like noted in case there are problems down the road? Can we politely list those concerns?

    What else can we agree on?

    This is a huge forum with people with backgrounds in medicine, science, law, journalism…. What can you contribute to this? Am I the only person who thinks this is a good idea? It's terribly damaging for me to be doing this. Can anyone help? Please!
     
  4. duncan

    duncan Senior Member

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    @Laurie P , this is a noble idea. Perhaps it would be easier to launch a petition if you narrowed the choices down. Better yet, pick one. Test it with a poll perhaps?

    Just some thoughts. It's sometimes easier to generate traction with a firm concept in hand.
     
    Justin30 and ScottTriGuy like this.
  5. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Toronto, Canada
    I concur - and noble.

    Funding Ron Davis may be your best bet - there is a built-in compelling narrative that only Hollywood could dream up.

    I think the patient got 24,000 signatures quickly because she used her selfie that clearly showed she's not well. Emotions move people.
     

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