Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Act Up for ME-Boots on the Ground Walk/March on DC: April 28, 2015

Discussion in 'Upcoming ME/CFS Events' started by Nielk, Apr 27, 2015.

  1. Nielk

    Nielk

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

    more here.
     
    ahimsa, Wildcat, ukxmrv and 5 others like this.
  2. *GG*

    *GG* Senior Member

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    Concord, NH
    I hope they post pics/video when all is said and done :)

    GG
     
    sarah darwins and Nielk like this.
  3. Keela Too

    Keela Too Sally Burch

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    justy, sarah darwins and Nielk like this.
  4. Nielk

    Nielk

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    Yes. It will be videotaped. Someone will be tweeting live from the march, hopefully including pictures at https://twitter.com/meadvocacy_org
     
  5. Nielk

    Nielk

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    Follow the Act Up for ME march in DC on twitter at #ACTUP4ME from 10 am to 12 pm EST today!
     
    Roy S and Gemini like this.
  6. Nielk

    Nielk

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    March along with the demonstrators with a twitter campaign in their support. Send a loud message to HHS. We want $250 million in funding now! Use #ACTUP4ME. Use your twitter voices!
     
    *GG* likes this.
  7. Nielk

    Nielk

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    *GG* likes this.
  8. caledonia

    caledonia

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    This is happening right now.
     
    justy likes this.
  9. justy

    justy Donate Advocate Demonstrate

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    The empty wheelchairs with photos and flowers look great - I can almost imagine I am there in my wheelchair instead of stuck in bed at home. This helps all M.E Sufferers in the world, not just in the states.
     
    SOC likes this.
  10. Nielk

    Nielk

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    [​IMG]
    Please tweet this image to your US representatives using #ACTUP4ME so that we can see which representatives have been reached. You can find your representtives here http://www.house.gov/representatives/find/
     
    beaker, ahimsa, *GG* and 4 others like this.
  11. *GG*

    *GG* Senior Member

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    Concord, NH
    We are 1 Million diagnosed US patients suffering from the disabling neuroimmune disease Myalgic Encephalomyelitis (ME); also know in the US as ME/CFS.

    For the past 3 decades we have been neglected and marginalized. Despite the fact that the burder to the US economy for this disease is estimate at $17-24 Billion, NIH funds it at a mere $5 Million per year. This allocates $5 per patient, compared to $255 per patient for the similary burdened disease MS.

    To date, there are no FDA treatments for ME patients, (never mind a cure). Most medical schools don't even have ME in their instructional curriculum. This has resulted in clinicians who are not familiar in the diagnosis or care of ME patients. The patients are left with no care, no viable treatments and no understanding from doctors.

    ME patients are saying NO MORE!

    We need funding of $250 Million to bring us on par with other similar diseases and to have any hope of for real biomedical research that would propel the science of this disease and FDA approved medical treatments

    (transferring this above post to make it easier to cut and paste!)

    Not sure who wrote this, I made a few changes, use the changes or revert to the original message, figure some differences might not make it so cookie cutter!

    GG
     
    Last edited: Apr 28, 2015
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  12. Nielk

    Nielk

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    Roy S and Keela Too like this.
  13. Keela Too

    Keela Too Sally Burch

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    Was sharing what I could by Twitter yesterday. Well done folks. Looking forward to more pictures and stories from the day!
     
    Nielk likes this.
  14. Nielk

    Nielk

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    Video of patients at the demonstration.

     
    Keela Too and *GG* like this.
  15. Nielk

    Nielk

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    Video of compilation of pictures.

     
    Keela Too likes this.

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