Wednesday, May 25, 2011

Facebook and the Government

A former high-ranking government worker has told CFS Central that in his experience what gets the government’s attention is, yes, Facebook. In his view, the government has learned to ignore phone calls, faxes and emails. But Facebook campaigns, he said, “panic” them because they’re viral, embarrassing, and leave an indelible footprint.  Ideally, a campaign could be started directly on the government's own Facebook pages.


  1. "Ideally, a campaign could be started directly on the government's own Facebook pages."

    Unless they employ default settings so that random postings can't be seen. Unless you click to a display setting that is easy to miss unless you're looking for it. Rendering the posts effectively invisible.

    Like the CAA does.

  2. Thank you, Mindy. It can't hurt to give this a try. Anthony Fauci has a facebook page, although only 17 people "like" it.

    Patricia Carter

  3. Never mind. Fauci's page does not allow others to post.

    We tried the White House Facebook page and there were so many posts that it accomplished nothing.

    Who else?

    Patricia Carter

  4. Thanks for that tidbit, Mindy. That makes sense; facebook campaigns would be much more visible and viral that direct contact.

    I assume usually someone just starts a group for a specific 'campaign' with a position statement (like the text of a petition) as the info for the group displayed at the top of the group page. You'd get people to recruit their friends to join the group (which would act as an endorsement of the position/petition).

    I'm not active on FB. If someone could start a group and recruit people, that would be awesome!

  5. The government facebook pages mostly do not allow others to post, so I think what is needed is a new facebook page, such as "NIH Funding for HGRV research."

    Patricia Carter

  6. what justin said...patients start a page What has the govt done for ME/CFS the last 25+ years Nothing. Have patients post their stories.

    Have Pat Fero post the info abt money spent/wasted by govt on the disease.

    Write abt the CAA's ineffectiveness.

    Post stories abt ampligen. Why is it not FDA approved yet?

    Have Hillary J. post what she learned about the govts sordid history on this disease.

    then we get all our friends to like the page.

    no it's not abt posting to already existing govt pages. its a pt created, controlled page.

    i'd love to start it but can't lift my head off my pillow...going on 3 months now.

  7. Twitter is really good for sending short and "sweet" (!?!) messages. Here are a few addresses I know:
    @NHSdirect (UK)
    @publiccitizen )national advocacy org that has been standing up to corporate power and holding gov accountable since 1971)

    If many people follow you, more people will read your messages. If you find the right keywords with a # (example #infection or #XMRV) more people will be exposed to your message. Viral campaign anyone?

  8. ME/CFS is the hot potato that *no* administration wants to get caught with. They don't want to be associated with the disease because it's a liability, and it could be interpreted as something that they "let happen" under their watch, even though it's been an epidemic since the 80s. And that's just how Fauci, Reeves and co. like it. A Facebook page (or anything else that will draw attention to ME/CFS, shame the powers that be, and force them to take action) is a great idea.

  9. The CDC has a facebook page. Hint Hint...

  10. Good work Mindy. I like to put information out on the CDC's site that works against the CDC and damages their reputation, provides the public that reads the FB CDC page with critical and valid info and smacks the CDC in the face. The CDC FB people took my comments down once and I had a screaming fit that they could NOT do that and to put back my comments since they were valid, verifiable, and oh yea, I was a tax payer paying the CDC's employees. They put my comments and links/cut outs back on and left me alone. So, yes, hit the government's own FB pages and leave comments with valid info and links. Let others read them and learn what the government does NOT want them to learn. Hit the CDC especially- I do often.

  11. Nice one Mindy, thank you. If that is what our respective governments are afraid of let's get someone really clever to start FB pages against our own governments and get to work scaring the c**p out of them.
    Our strength is our numbers. The Autism group might be interested too.


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