M.A.D in May: the 12 Days of May ME/CFS Advocacy Project: Day #1 – FACEBOOK DAY!

Posted by Cort Johnson

Background – 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 Tom’s 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.


12 Days of May: MAD for ME/CFSFacebook 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

Any user can create a cause, whether they work for a nonprofit or are an activist interested in a certain issue. Nonprofits with smaller resources or extensive grassroots networks have been successful at leveraging those resources to build online communities of supporters.

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 you’re 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 Profile page is easy –simply go to Facebook.com, supply some information and you’re on Facebook

(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) and the CFIDS Association of America (CAA) (), 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. Check out the Leaderboard here.

Once you’ve 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 you’d 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!

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