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Adrienne Dellwo

Social Media for Fibromyalgia & Chronic Fatigue Syndrome

By August 1, 2009

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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? Let us know by leaving a comment below!

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Comments
August 1, 2009 at 1:00 pm
(1) Dave Kerpen says:

Have you seen http://Facebook.com/Fibro360 (community on FB for Fibromyalgia & Chronic Fatigue) Cheers!

August 2, 2009 at 3:10 am
(2) Shirley Poncini says:

My favorite site is : MDJUNCTION.com. It’s full of people willing to share information and an ear. There is no judgment and a lot of hugs. This site has many different illness, some I have never even heard of. I highly recommend this site.

August 5, 2009 at 12:38 am
(3) perpetualspiral says:

I wrote a blogpost about this very thing quite recently. I’ve found Twitter especially to be such a supportive environment, as well as giving me a social life where I can’t have one in ‘real life’ because it’s too exhausting to maintain a lot of friends and go out to spend time with people. It’s really saved my sanity and been an immediately accessible life-line in both the best and worst of times. Here’s my blog post: http://perpetualspiral.blogspot.com/2009/07/you-are-not-alone-how-social-media.html

August 7, 2009 at 8:46 pm
(4) sarah says:

what do those funny unheard of initials after the four researchers in the georgia study stand for?

August 8, 2009 at 5:24 am
(5) Andrea says:

Would love to see you get a Facebook page, Will look at the 360 page too !

August 8, 2009 at 5:29 am
(6) Andrea says:

Checked out the Fibro 360…………It’s associated with The Fibro & Ftigue Clinics.
I was a patient at the Vegas location for 7-8 months, they nearly caused me to go broke !!!!!
Great Blood tests that they perform…………but

August 10, 2009 at 10:23 am
(7) Jenni says:

I’ve been visiting the Action for M.E. Facebook page several times a week (health permitting!)

The link is http://www.facebook.com/actionforme

It’s really busy and there is always people there offering support on bad days. I’ve met some great people on and would recommend it.

August 6, 2013 at 3:31 pm
(8) taking hgh and testosterone says:

I’ve read of people who use it as a kind of preventative anti-aging pill (or shot)..

Also visit my web page – taking hgh and testosterone

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