Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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M.A.D in May: the 12 Days of May ME/CFS Advocacy Project: Day #1 - FACEBOOK DAY!

Discussion in 'Action Alerts and Advocacy' started by Cort, May 1, 2011.

  1. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Go.jpg The month of May is and has been Making a Difference (M.A.D) month ever since RESCIND leader Tom Hennessey proclaimed May 12th (Florence Nightingales birthday) International CFS Day over 20 years ago. The 12 Days of May Phoenix Rising project honors Toms vision of a community working together to produce change by providing opportunities to make a difference (M.A.D.) in ME/CFS every day for next 12 days culminating on International ME/CFS day.


    FACEBOOK DAY - The first M.A.D May Day is..FACEBOOK Day

    Facebook is only, believe it or not, seven years old but with over 600 million active users and growing by leaps and bounds every day Facebook is the premier communication outlet on the planet. The second most visited website in the US, approximately 40% of the US citizens have an account.


    Effective Advocacy Tool Facebook has been used by advocacy movements all over the world the most notable being the recent upheaval in Egypt. The Causes application Facebook created specifically in 2007 to support advocacy efforts raise money and awareness has become one of the most heavily used Facebook apps with over 90 million users. It is designed to


    Given its reach it's not surprising that Facebook has provided a key (and sometimes the only communication outlet) for many ME/CFS groups. How to make a difference using Facebook? Here are a couple of ways.


    (1) If youre not on Facebook join; Facebook has many different options- and honestly the company does a miserable job of spelling which are the best options for which groups but creating a personal page is easy simply go to the page below, supply some information and youre on Facebook http://www.facebook.com/r.php?possible_fb_user=1&app_id=0&is_enabled=1&next=http%253A%252F%252Fwww.facebook.com%252Fhome.php&locale=en_US

    (2) Participate in the Chase Community Giving Contest going on NOW. The ME/CFS Community assisted Pandora in winning $20,000 in 2010 a huge amount of money for a small organization. Now the two biggest ME/CFS organizations, the Whittemore Peterson Institute (WPI) (http://apps.facebook.com/chasecommunitygiving/) and the CFIDS Association of America (CAA) (http://apps.facebook.com/chasecommunitygiving/), are vying for up to $500,000 in prizes in another Chase Community Contest that ends in just three days on April 4th. The WPI is currently fourth and the CAA is 19th. Both need to place in the top 100 to go on to the second round. http://apps.facebook.com/chasecommunitygiving/rules


    Once youve voted the wait for news of two things; the second round of voting which will take place from May 19th to May 25th where the really big money can be made and the NEXT Chase Community Giving contest which will feature smaller non-profits. Phoenix Rising will be coordinating an effort to get the smaller non-profits to work together to come out on top. A successful effort could garner $250,000 for ME/CFS non-profits across the US in the first round alone.

    (3) Join and click the LIKE button on pages of ME/CFS groups that youd like to support. (They must have created "Fan" pages for you to be able to do this.) Clicking the Like button is an essential feature of drawing more users to a page. You can Like an organization with a Fan page by going down the left hand side of the page and finding (the teeny) Like button there but the button is also found after every post. The key thing to remember is that if you want to spread the news about a post you liked or an organization then Like it. If you Like an organization its banner will appear on the left hand side of your page. These are just some of the Facebook pages on chronic fatigue syndrome



    (4) Check out ME/CFS Causes ME/CFS groups have used the Cause program with great success to raise funds. Check out some of the ME/CFS Causes currently active on Facebook.
    Besides being a fine personal communication tool Facebook has turned into a key advocacy asset that helps ME/CFS groups get the word about what they are doing and how to support them. It is also one of the few places where you can directly interact with them. Enjoy Facebook!
     
  2. eric_s

    eric_s Senior Member

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    I like the idea of the campaign a lot, but should we really use the term "mad" :confused:? Ok, it means "angry" in this context, but i don't know if it's really the best possible choice, given the forces we have to battle (psychological group).
     
  3. beesknees

    beesknees Senior Member

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    I can definately be mad. :) Mad stands for Make a Difference. The term is used often with charity's and organizations. Google the phrase and you'll see them all. So I don't think it's a problem.

    What's day two??
     
  4. illsince1977

    illsince1977 A shadow of my former self

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    Don't the British say that you can be mad for someone? Doesn't that connote really liking them? Taking a "fancy" to them as the Brits would say? That's a more cheerful, spin on the word "mad"!

    If I got that all wrong, I beg your pardon! :oops: Please forgive this ignorant Yank! :D
     
  5. Dolphin

    Dolphin Senior Member

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    Yes, "mad for" is sometimes used in that way. Google is great now to check things - sometimes I put phrases into it to check if I've got them right - if a million hits (say) come up, you know it's likely right. "Mad for" has over two millions hits.
     
  6. Lucinda

    Lucinda Senior Member

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    Yes. British people do sometimes say they are 'mad' for someone, meaning they really fancy them.
     

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