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

May 1, 2011

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!

Support Phoenix Rising


“empower anyone with a good idea or passion for change to impact the world. Using our platform, individuals mobilize their network of friends to grow lasting social and political movements.

{ 4 comments… read them below or add one }

Angie Croix May 2, 2011 at 6:42 pm

Hi Cort,

Something tells me you forgot what Thomas Hennessy’s RESCIND even stands for… ??
Obviously, you haven’t been to the website lately…
It’s NOT just for ME/CFS but for ALL Neuro-Immune diseases.
Repeal Existing Stereotypes for Chronic Immunological and Neurological Diseases.
Ring any bells ?

Please don’t state that you are Honoring Thomas’ RESCIND idea and then try to raise $ for other groups.
His group that STILL exists needs funds also, but you don’t even have the courtesy to list HIS Site !!
If you had one shred of Honor you would have listed his website also… Sheez..

In addition, nice “copy-cat” of his site’s “RESCIND’s May 12th ~ 10 Letters Campaign”
Guess you really haven’t tested XMRV+ yet, or you would Understand it’s NOT just about ME/CFS anymore…
But you can play ostrich, copy other’s ideas and insult them while pretending you are complimenting them..
But don’t think it’s not going Un-noticed.

If you were INclusive instead of EXclusive you would be Promiting http://www.anida.co in addition,
instead of someplace that does not do ANY research or work to find cures for our Invisible Illnesses.
There is ONLY Currently ONE Place that does BOTH.
Normally, I wouldn’t even bother posting here, but I watched you abuse the FACTS too many times.
This time I HAD to call you OUT…..


Cort May 4, 2011 at 11:46 am


I understand your desire to get ANIDA and RESCIND. I was acquainted with the ANIDA website but not the causes site. Please note that the WPI was featured prominently in the Facebook post; they were the first Facebook site and their other Cause Cure4ME/CFS was the first cause mentioned.

If RESCIND has a Facebook site and I missed it then I apologize and, of course, will put it on there. (As was noted the list was never intended to conclusive by the way – and it is growing as people chime in with their favorite sites (as was intended).

Of course, Anida.com will be featured as we go on.

(By the way I have been tested for XMRV and I tested positive both by culture and by antibodies. )


cfs info May 3, 2011 at 4:12 pm

You’re talking about May 12th and facebook and you don’t mention facebook page http://www.facebook.com/pages/May-12th-International-MECFS-FM-Awareness-Day/220534562160?ref=nf ? Over 4200 people follow it.
Also, you’re missing the National ME/FM Action Network page http://www.facebook.com/pages/National-MEFM-Action-Network/119761554710463 . They are hosting the IACFSME.ORG conference in Ottawa. It’s the page to follow to get the most up to date information about the conference.


Cort May 4, 2011 at 11:38 am

Thanks CFS Info. I found the Facebook pages I did by putting in ME/CFS or CFS or chronic fatigue syndrome in the Facebook search. I also used the pages the WPI, XMRV Global Action, Rocky Mtn CFIDS, etc ‘Liked’. I knew there were more out there…….. I will add those pages to the blog. thanks for the suggestion.

I feel more than a little chagrined to have missed both of those – particularly the May 12th site (:)) – and of course the National FM/ME Action site – thanks for pointing them out.

Even worse to miss RESCINDS site (ach!). My apologies Tom.


Leave a Comment

Previous post:

Next post: