Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Advertise in Wall Street Journal or???

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Andrew, Nov 3, 2013.

  1. Andrew

    Andrew Senior Member

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    During the XMRV thing, ME/CFS patients took out ads in the Wall Street Journal. My impression is one of our members (Tina) was involved in this, so I sent her a PM asking for advice. I have not heard back, and it's possible she is out of the loop now, as I have not seen her here in a long time. So, I'm asking if anyone else here knows people who were involved in this, and will you please contact them to help.

    We have to go big, folks. This IOM could destroy us. I have no special skills in this and that's why I'm asking others if they can do this.
     
  2. Lynn

    Lynn Senior Member

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    Hi Andrew,

    The ad was in the Washington Post. I worked on the graphic part of the ad but was not involved in the fund raising. You may be able to reach Tina through PANDORA, although I don't think PANDORA is in alignment with the advocacy letter asking that the IOM be stopped.

    In my opinion, it would be hard to sway our government through advertising, especially in the short term.

    Lynn
     
  3. caledonia

    caledonia

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    I worked on the ad too. I'm not sure of the value of an ad either. I'm going with whatever the US Campaign for ME people are saying. There are several people with advocacy/activist experience, and I feel confident in their abilities. I have special skills and have volunteered to help. You're dealing with ME patients, so due to some crashes, it's taking a little while longer than I'm sure everyone wants, but things are in the works.
     
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  4. Andrew

    Andrew Senior Member

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    If the government is not worried about public opinion re: wasting $1 million, what would motivate them to cancel this.
     
    WillowJ and leela like this.
  5. justinreilly

    justinreilly Senior Member

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    Im not either for this or against it. It seems like a reasonable course. Tina did lead it up and the ad cost, iirc, between $3,000 and $4,000. Someone brought this up on the Facebook group and there were a couple of posters who were against it. Noone else seemed to have an opinion. Some liked the idea of DC Metro advertising and that was priced out there. Ai think no further action was taken.
     
  6. caledonia

    caledonia

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    An ad is a one-shot deal. We can do a whole year of grassroots advocacy for a lot less than $3-4k. Also, it will be, in my opinion, a lot more effective.
     

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