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A year ago, I stumbled upon the ME/CFS forums at Phoenix Rising. I stayed for the friendship and the support. ME stands for myalgic encephalomyelitis. CFS is chronic fatigue syndrome. As a veteran of this illness over many years, I found the forums to be a perfect fit.
I'd just gotten a computer and the ol' brain was functioning well enough that I could read and type for more than a few minutes at a time. I fell in love with the place.
In this past year the forums have grown from just a few people posting, to a membership of over 1,800 and still growing daily. These people are amazing. All of them sick, many of them bed-ridden, all of them with paralyzing limitations on their lives.
The lucky ones like myself had family who had stuck by us, but many others had been isolated and alone with CFS for years. For some, these forums were the first place they'd felt accepted since being stricken with chronic fatigue syndrome.
Unless you've had this experience, it is impossible to comprehend how huge this is.
No need for apologies or explanations, no need to defend ourselves or prove that we were truly ill. Everybody understands. Everybody deals with this.
Acceptance. What a treasure.
Something remarkable began to happen. Being able to link together with other people who understand what we're going through, being able to find strength in this new sense of belonging, we began to rise up and branch out.
We were like new shoots of a plant -- like tendrils growing up a support beam, rooted and established in Cort Johnson, a guy who has CFS himself.
For some, old skills and talents and passions that had long been silent, began to revive. For others, brand new and sometimes surprising imperatives began to emerge.
Recently a few of these gifted and diverse people created a video for YouTube. Since May 12th is International ME/CFS & FM Awareness Day, I thought it would be appropriate to share it with you.
A haunting song called "Everybody Knows About Me" by the band Cinder Bridge is the backdrop for these faces of CFS. You can see and hear the video at http://www.youtube.com/watch?v=00BZCjVK_6I.
For more information about CFS, I recommend Phoenix Rising. You'll find it at http://phoenixrising.me/.
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Three years ago, I found treatment that worked for me, and now I am making a comeback.
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I'm in the video and this is what I wrote for a press release re why I chose to be in it:
Many people believe that patients with CFS just want the "benefits" that come with being sick. For me, those so-called benefits include: isolation and loneliness from being too ill to be around people; living on an income that does not even cover my most basic needs; barely managing to take care of myself; and never feeling well enough to do any of the many activities I love. In being a part of this video, it is my hope that people watching will realize that what "everybody knows about me" (and about others with CFS) is far removed from the reality of life with this devastating illness.
May 16, 2010 - 8:48pmThis Comment