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.

Briefing on the Institute of Medicine report in Washington, D.C. --webcast March 25

Discussion in 'Upcoming ME/CFS Events' started by Sushi, Mar 13, 2015.

  1. Sushi

    Sushi Moderation Resource Albuquerque

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    From Solve MECFS Initiative

     
  2. Sasha

    Sasha Fine, thank you

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  3. Sasha

    Sasha Fine, thank you

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    BTW, @Sushi, that bit about dysautonomia/POTS seems to be a bit of rogue text that has crept into Solve's FB version of this!
     
    Sushi likes this.
  4. Sushi

    Sushi Moderation Resource Albuquerque

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    Who knows how and why! :cool:
     
    Sasha likes this.
  5. Never Give Up

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

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    August59, oceiv and catly like this.
  6. Roseblossom

    Roseblossom

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    Please add your succinct comments about what you'd do if you were well: https://www.surveymonkey.com/s/IOM_IFIWereWell

    I said "Every day I'd turn on my favorite music & dance, as I used to do before I got sick.

    Then I'd work to get accurate information to every doctor NOW, and to get accurate information taught in every medical school, and to get accurate information put into every medical textbook."

    I would no longer have to dread doctor visits, where no one knows any accurate facts about this illness, but instead push me to take antidepressants & exercise more.
     
    Sasha, TigerLilea, Sidereal and 3 others like this.
  7. catly

    catly Senior Member

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    I hope this turns out better than the television news broadcast that Carol Head was part of. I did the survey anyway and signed up for the webcast.
     
    Sasha likes this.
  8. Kati

    Kati Patient in training

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    Hillary Johnson has tweeted about Morgan Fairchild today.

    Patients can hold a grudge against certain patient groups, however the times are changing. Having a celebrity associating to our cause and speaking for us can only be a good thing.

    What is needed right now is speaking to our political representants and ask for money to be assigned for research. We need to leverage the IOM report in confirming that this illness is real and debilitating, and has been ignored for decades.

    A recent tweet from Hillary Johnson calls for class action lawsuit.
     
    Mij, GracieJ, beaker and 8 others like this.
  9. Nielk

    Nielk

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    Where do you see the evidence that she has been suffering from ME? She bills herself as a former patient. It is not clear whether she had suffered from ME/CFS or Fibromyalgia. Solve ME/CFS Initiative bills her as an "activist" but the only activism that can be found by her is "AIDS activism".
     
  10. Nielk

    Nielk

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    Where does it mention the address where this event will take place?
     
  11. Kati

    Kati Patient in training

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    Does the person speaking on our behalf even needs to have ME? Elizabeth Taylor didn't have HIV/AIDS!

    Personally, I will take anybody who is willing to embrace the cause. Action is what is needed. This is an emergency.
     
    rosie26, beaker, Anne and 7 others like this.
  12. Nielk

    Nielk

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    No, they don't need to be a patient but, I don't appreciate the doublespeak by the CAA.
     
    Iquitos likes this.
  13. Ember

    Ember Senior Member

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    According to your quotation, "Morgan Fairchild is an actress who has suffered from M.E. for approximately two decades or more." Is this true?
     
  14. Kati

    Kati Patient in training

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    What do you mean 'doublespeak by the CAA'?
     
  15. Kati

    Kati Patient in training

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    How would I know whether it is true? you can take it or leave it. Why question it and why does it matter? does one need to be true sufferer to address the congress? If people oppose so much in CAA organizing a speaking engagement in DC, why not organize your own and do it better? Nothing preventing you.

    Making assumption as of what is going to happen and protesting about what MAY happen is in my opinion just the wrong way to go. How about taking the opportunity to make yourself heard in social media while this is happening?
     
    Anne, SOC, meadowlark and 1 other person like this.
  16. Nielk

    Nielk

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    How do you know that this is not in the planning already?
     
  17. Nielk

    Nielk

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    What I mean is, they state that she is a patient and an activist. Giving the impression that she is an ME/CFS patient and an ME/CFS activist. None of those are true.
    She was an AIDS activist. Why not stating that fact?
     
    Wildcat likes this.
  18. Ember

    Ember Senior Member

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    Asking a question is the opposite of making an assumption.
     
  19. Kati

    Kati Patient in training

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    If Hillary Johnson, the author of Osler's Web is saying that she has been a patient for at least 2decades, I believe her. She is a credible source. You can check her stream on Twitter, @oslersweb. i didn't make her say that.
     
    Anne and meadowlark like this.
  20. Nielk

    Nielk

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    If she is speaking up in support of the IOM report, she is not speaking up for me or for a large group of the patient population who are in opposition of the IOM.
     
    RustyJ, Liz Willow and Wildcat like this.

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