Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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It's Time to "Act Up for ME Funding" - Demonstration in Washington DC

Discussion in 'Action Alerts and Advocacy' started by Nielk, Apr 20, 2015.

  1. Nielk

    Nielk

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    It’s Time to “Act Up for ME Funding”

    What: A marching demonstration to let Congress know, “We Want Real Funding for ME Now!”
    Where: Washington DC
    When: Week of April 27th during HHS/NIH Budget hearings for 2016.
    How: Make a donation and/or provide us a photo and bio to represent you!

    Donations matched! Deadline: Friday April 24th, 11:59 p.m. EDT

    http://www.meadvocacy.org/it_s_time_to_act_up_for_me_funding
     
    Jennifer J, oceiv, Valentijn and 6 others like this.
  2. Ember

    Ember Senior Member

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    Thanks for this great generosity:thumbsup::

    “To help keep our costs for this demonstration down, the travel expenses for this demonstration have been donated by one of our MEAdvocacy.org members, who will be leading this demonstration.”
     
    Wildcat, Keela Too and Nielk like this.
  3. Denise

    Denise Senior Member

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    I absolutely agree that significant funding increases are necessary for biomedical research on ME.

    I am troubled by this MEAdvocacy post stating that the org has "the heart and soul of ME patients". This sounds as though all patients with ME are in agreement with MEAdvocacy.

    The post also says "The demonstrators "danced in the rain" on the lawn of the Capitol."
    That they did so is very troubling to me. I don't know many patients with ME who can do more than occasionally waggle their fingers to imitate a dance. It is all many patients can do to stand up, let alone dance. Having "patient stand-ins" dance does NOTHING to convey the disability or severity of ME.






    As a side question - is the money that is being raised still being used for the pr firm?
    How did MEAdvocacy find out that people were inspired to learn more about ME and the need for funding?
     
    Cheshire, Valentijn and SOC like this.
  4. caledonia

    caledonia

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    Cincinnati, OH, USA
    This demonstration is being organized without the PR firm.
     
  5. Denise

    Denise Senior Member

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    Thanks for the response.
    Have ties to the PR firm been severed?
    If so, why?
    If not, what work is the PR firm doing?
     
  6. Nielk

    Nielk

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    MEadvocacy cares about all ME patients even those who might not agree with some of our policies.

    It is clear to all that the protesters are stand ins for the patients who are too ill to be there in person. They each wear a large picture of the patients who is being represented. If they are marching or "dancing" it is to attract attention to the cause and it does not misrepresent the disease.

    Because people stopped and asked questions of them and they were able to convey awareness for the disease.
     
  7. caledonia

    caledonia

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    They are wrapping up the patient interviews with the media project which uses up the rest of the money earmarked for the PR firm. There are no further projects with the PR firm after that, as people stopped donating for the PR firm.
     
  8. Denise

    Denise Senior Member

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    I appreciate the answer.
     
  9. Nielk

    Nielk

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    [​IMG]
     
    BEG, Valentijn and Tammy like this.
  10. Nielk

    Nielk

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    http://theargusreport.com/students-to-march-to-white-house-in-support-of-me-patients/

    Students to March to White House in Support Of ME Patients - by Penny Swift

    more here.
     
    BEG and Roy S like this.
  11. Nielk

    Nielk

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  12. Nielk

    Nielk

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    [​IMG]
     
    Valentijn, BEG and ahimsa like this.
  13. Nielk

    Nielk

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    See compilation of pictures and videos of the April 28th DC demonstration.
    http://www.meadvocacy.org/me_patients_visible_at_the_capitol_pictures_and_videos

    see more.
     
    Jennifer J likes this.

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