1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Article: Washington Post ME/CFS Ad and Press Release are OUT!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 6, 2010.

  1. Mary

    Mary Senior Member

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    :thumbsup: Thanks everyone so much! I sent an e-mail to the health legislative aide for my congressman today with the ad and the press release and a personal note, and am going to forward it to my local paper and the L.A. Times and anyone else I can think of.

    Mary
  2. Cloud

    Cloud Guest

    Thanks Neil...interesting indeed.
  3. Cloud

    Cloud Guest

  4. Sasha

    Sasha Fine, thank you

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    UK
  5. urbantravels

    urbantravels disjecta membra

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    Los Angeles, CA
    iReport is user-contributed content. It's kind of like a message board. Not reporting and not edited.
  6. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Shame, great article and would have bigger impact if written by CNN journalist. Hopefully someone at CNN will pick up on this.
  7. anciendaze

    anciendaze Senior Member

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    My problem with any theory of ME/CFS as an escaped laboratory virus comes from evidence I was infected in a documented outbreak in 1956. (See the April 1959 issue of NEJM.) Those other outbreaks, going back to the 1930s, and mentioned in that write up, also point to an origin outside of laboratories. Deliberate experiments with recombinant DNA could hardly be done before DNA was discovered.

    It appears the Incline Village outbreak was a new strain, not a completely new virus. The altitude also played a role in exposing defects in oxygen metabolism which might be ignored at lower altitudes. Earlier sporadic cases in large metropolitan areas go back into the 1970s.

    Despite statements which I regard as inaccurate, these reports highlight the fundamental problem: an infectious disease has been ignored for decades. It is so widespread recent cluster outbreaks are hard to track; you keep running across infection from different sources.
  8. Cloud

    Cloud Guest

    Correct....but it's reviewed by the editors for possible print and....I believe the comments influence that decision. "Not yet vetted" = evaluating for possible approval or acceptance. I don't see why they wouldn't approve this for print since it's no more alarming than any of the other releases so far:

    http://mcwpa.org/in-the-news/mcwpa-in-the-news/
  9. muffin

    muffin Senior Member

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    USA!
    Please continue to hit everyone with the Press Release and the AD from the Post

    We do need to stay in everyone's face and use the PR and AD to do that.

    That AD is shocking. Everytime I show it to someone they stand there and read it, look shocked and start asking me tons of questions. What a massive change from when I used to say I had CFS and FM. Blank, bored looks. NOT anymore! That AD has broadsided the public and journalists. I expect that the very serious journalists and investigative journalists will take the time to go and read all the documents/studies available, interview the Agnecy heads (sorry for them), and then do some very serious reporting. They do have to first ensure that what was said in that AD is correct. It is correct since the MCWPA people had doctors and researchers look and re-look at all the ADs to ensure that no one could take a shot at anything said. Very solid research and fact-checking = and done by doctors and researchers.

    Please keep sending the PR/AD out to everyone including your own local newspapers and TV stations. Keep hitting the BIG guys like MSNBC, the other cables, the regular three (ABC, CBS, NBC) and everywhere you see mention of ME/CFS and this retrovirus.
    Keep ME/CFS/retrovirus in front of everyone's face.

    We ALL want a cure NOW. We want clinical trials on the meds that are out there already. So PUSH.

    Thank you all for doing a great job.
  10. Cloud

    Cloud Guest

  11. Auntiemogs

    Auntiemogs

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    Minster on Sea, UK
    And from the UK....waiting.......waiting.........still waiting...........:sleepy:

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