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May 12 demonstration in Washington DC

Discussion in 'Action Alerts and Advocacy' started by Nielk, Apr 9, 2014.

  1. Nielk

    Nielk

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    Queens, NY
    @medfeb - posted the following on Facebook:

    If anyone is interested, please post here or pm Medfeb - Thank you.
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    Is there a way to economize transportation?

    GG
  3. medfeb

    medfeb Senior Member

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    Hi all

    Here's an updated announcement on the demo in Washington on May 12.

    Mary

    May 12, 2014 ME Awareness Day
    Every year, the ME community holds a day of awareness on May 12 to highlight the plight of patients with ME and also FM, GWI and MCS. This May 12 is especially important to the ME community because this is the thirtieth anniversary of the ME outbreaks in Incline Village and Lyndonville. Thirty years of bad definitions, bad medical education and virtually no research funding. Thirty years of neglect in which ME experts have been ignored and ME patients have been abandoned. This must stop!

    Our representatives in Washington need to hear from us. There will be a demonstration on May 12, 2014 in Washington, D.C. from 12:00 to 1:30 PM. The demonstration will be on the east side of the Capitol Building off of First Street NE. (Map here - section 10).

    Posters and banners will be provided which highlight the lack of funding, the call by experts to adopt the CCC and the devastation and death that ME can cause. For those who plan on also visiting their legislative leaders, a fact sheet will be provided.

    If you can’t make it to Washington, you can still participate by contacting your legislative leaders. Directions to do that will be provided shortly.

    The federal government needs to see that we care! If you are in the Washington Area, please join us!

    Please contact Mary Dimmock at MECFSAction@yahoo.com if you are able to attend so that she can finalize plans.
    Little Bluestem and ggingues like this.
  4. medfeb

    medfeb Senior Member

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    Bumping this up...

    On May 12, 2014, there will be a demonstration from 12:00 to 1:30 PM on the east side of the Capitol Building off of First Street NE. The map is here - http://www.uscapitolpolice.gov/special_events/map.pdf

    Banners and handouts will highlight 30 years of neglect, the call to adopt the CCC, the lack of research funding and the fact that ME can kill people. For those who plan on also visiting their legislative leaders, a fact sheet will be provided.

    All are welcome but I appreciate that going to Washington is impossible for most. But please consider sending a letter to your congressional leader to protest HHS' handling of ME for the last thirty years - and what it is still doing today! Directions to contact your congressional leaders are below if needed.

    Mary

    1. Go to Contacting Congress at http://www.contactingthecongress.org/
    2. Type in your zip code. Your representatives will pop up, along with contact links. Fill out the form. (You should only have to do this the first time)
    3. Paste your message into the box and click Send!
  5. Denise

    Denise Senior Member

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    Many thanks Mary!



    Reminder for people in San Francisco (and surrounding area), Erica Verrillo is organizing a demonstration there.
    http://www.cfstreatmentguide.com/1/post/2014/05/what-i-want-for-my-birthday.html
  6. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Midwest, USA
    bumping again.

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