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ME/CFS AUSTRALIA (SA) INC

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Social media for Fibromyalgia & CFS

Thursday 3 September 2009

Social networkingAdrienne Dellwo discusses social networking and ME/CFS/Fibromyalgia:

Do you use social media? Do they help you feel less alone? Fibromyalgia and chronic fatigue syndrome make it so hard to maintain a social life that it makes sense for us to turn to things like Facebook, myspace, twitter, forums, mailing lists, etc. They don't take a lot of effort, it's easier to find people with the same illness(es), and if you don't have the energy for it for awhile, it'll be there when you get around to it. Plus, if you have a lot of downtime, they can help you fill your day.

A big problem with social media for us, though, is that they can be overwhelming. Each one has its own set of rules, etiquette, lingo, trends, and downfalls. I've checked out a lot of the major ones, and so far I've given up on myspace (constant changes, lots of spammers, too cumbersome), I've grown to quite like twitter (instant communication and a loose social group), and I'm a bit overwhelmed by Facebook but determined to dig into it one of these days (they've made it so easy for you to re-connect with people that as soon as you sign up, you've got dozens of friends.)

Of course, I'm a big fan of forums/chat rooms (especially mine!) They're like a support group that's always meeting, even at 3 a.m. when you can't sleep. And you can almost always find someone who's been through what you're experiencing, whether it's a new symptom or the impact of illness on your life. For sheer simplicity, forums and twitter are my favorite.

What social media have you used? What have you stuck with, or liked best? What ones have you avoided, or given up on?

The above originally appeared here. The article also includes interesting comments from readers responding to Adrienne's questions.

 


 

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