1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

A million 'don't knows'

Discussion in 'Action Alerts and Advocacy' started by thefreeprisoner, Jan 13, 2010.

  1. As I was falling asleep last night, the beautiful thread on this forum somewhere came to my mind.
    Some of us were talking about how we wish doctors and government bodies, (especially White/Wessely/NICE/CDC) would just come out in public and say "We don't know what causes ME/CFIDS."
    Everybody started saying: "I don't know" to each other. It was super-therapeutic and cool to read.

    Then I remembered about this site:
    Fix Outlook campaign

    and thought - what if we could get a sort of petition/action going like this which aims to get a million "I don't know"s and raises awareness that ME/CFIDS is an organic disease that they haven't quite nailed down the cause of yet? We could give doctors and MPs/Senators/celebs special mention in the site, highlighted somehow?

    What does everybody think?
    Rachel xx
     
  2. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    I love this idea, Rachel. There was a thread a while back about how to "Re-Brand" CFS, and this would be perfect for that. Do you have the technical skills to make a site like FixOutlook.org, that would aggregate all the tweets?
     
  3. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    I love this idea! My hubby could figure out how to do it if we need him to. This is awesome!!

    Here's what my husband said:

    I'm not up for that but if someone else is we can probably help you figure out how to put it up.

    Here's the rest of our conversation which went off into just starting up our own website like CFS_OUT for those who are interested:

    tee: what is that?
    tee: aren't we all already on internet feeds?

    tee: how big and how much are servers?

    tee: we want millions to access it!

    tee: at once

    tee: want graphics, like the guitar player on that info card i showed u

    tee: then how are we able to post all of these graphics on our forum?

    tee: so we can put graphics on it without melting it, right?

    tee: Okay, actually, we probably won't have millions coming to the site anyway. Most likely this won't be a problem.

    tee: got it, i agree.

    tee: ok ty

    tee: k ty

    tee: right

    ETA: There are probably people here who know about good hosting sites too.
     

See more popular forum discussions.

Share This Page