Find Us Now on Facebook

In response to requests from CFIDSLink subscribers and others, the Association launched a profile on Facebook on February 28, 2009. As of Jan. 13, 2010 the page has 3,011 fans from 20 countries.

Here are just a few quotations from the messages people have posted to our “Wall” upon first finding us on Facebook:

“It’s good to see you here. There is a life for those of us fighting CFIDS. This will give us a place to encourage one another.” (SK)

“I was hit with the diagnosis of CFIDS in 1991, just when my life, career was starting to grow. I do believe my symptoms started in 1984, so my illness was more of a gradual onset starting with the birth of my only child. I too wonder what I could have accomplished with my life had this not taken over. I've met many people on facebook with CFIDS/FMS and am glad to see more information on here!” (VDR)

“I am also new to Facebook and glad to see you are here! I looked for CFIDS the other day, as a matter of fact! Also happy to help the cause whenever I can...have CFS since summer of 2007 - we are in this together! :)” (PWZ)

“Am delighted to join my CFIDS family on Facebook! Thanks for the research, outreach and support through the years. I’m looking forward to sharing and laughing with others on this awe-full journey.” (CGR)

“Bravo to CFIDS AA for joining the Facebook era!! You guys are so important and vital to ME/CFS patients and this cause. I’m proud to be a member and proud to annually donate money for all the wonderful things you guys do, and the research you’ve been supporting. THANK YOU!” (EHM)

After we announced our presence on Facebook to CFIDSLink subscribers on March 2, 2009, a few individuals sent us e-mail messages, unhappy or uncertain about the Facebook foray. Privacy concerns are an issue for patients still working or trying to maintain a sense of “normalcy” in their relationships. We agree and think Facebook is great for making connections, but because identities are “transparent,” it’s not always ideal to reveal your illness status or share information about medications or test results. Social networking sites are open to anyone – including employers and insurers. We’ll also screen for negative messages or posts from people who don’t “believe” in CFS. Nobody needs that stress; there are plenty of other venues for that sort of dialogue.

Lack of time and energy were initially expressed by a few “Linkers” who weren’t likely to join Facebook. As one person wrote, “Some of us are too busy trying to survive to spend time on Internet games.” We know it’s not for everyone, but we have also heard from many people who use sites like Facebook to maintain family and social relationships that would otherwise suffer because of the unpredictability of CFS. Finally, money is an issue. Although Facebook is free, computer access often isn’t, and the sites don’t work well if you’re using a dial-up connection. We’ve added Facebook as another means of connecting with the community, but we’ll continue providing CFIDSLink and keep looking for other novel ways to serve your information needs.

Although we view the site as primarily for information exchange and creating a sense of community, it can also help raise funds needed to sustain the Association’s unique programs. Laura Hillenbrand, author of Seabiscuit: An American Legend and The New Yorker essay, “A Sudden Illness,” was among the first people to join our Facebook family. She made the first donation to our Facebook cause and has inspired others to give, too. We have posted many photos of the 2003 benefit events honoring Laura in our Facebook photo albums and her “Defining Moments” essay is available there, too. We let fans know about scientific news and media coverage of CFS as it happens, and post meeting announcements and other events.

How to Find Us
If you’re new to Facebook or not familiar with all the ways of finding information, we hope these directions will help. Changes to Facebook's privacy policy now make it possible for anyone to view our page at www.facebook.com/cfidsassn. You must have a (free) Facebook account to become a "fan" of the page or post or comment about information. First, you have to have a (free) Facebook account to access any of the material or groups on the site. It’s quick and easy to set one up at www.facebook.com. There are various privacy settings to reveal as much or as little information as you’d like.

Take a minute to browse the "Notes" and "Photo Albums" to find information of high interest. We've included "A Cook's Tour" to help you locate things on the Facebook profile.

From the Association’s “official” profile, you can find the “SolveCFS” cause, if you have activated the “cause” application on your own profile. Its image is the “dots” from the cover of the winter 2009 Chronicle, shown here. You can also reach it by inserting this URL on your browser: http://apps.facebook.com/causes/233461/50267401?fb_page_id=47921632107&m=19b9eda0. Non-Facebook users can access the SolveCFS page to make donations, but they won't be able to see any of the messages that members have posted.

If you’re not familiar at all with Facebook, this lingo can sound pretty confusing. It’s not as difficult as it sounds, although it may take a few visits to sort it all out. Don’t worry; we’ll be there waiting to see you!

Updated Jan. 13, 2010 

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