I live in a Chronic Fatigue Syndrome ghetto. Everyone in the world who has CFS lives there with me.
We're better off now with the internet, with blogs and personal websites, with Facebook. Some of us can't walk from one room to another but we can type.
Sometimes even typing can make us crash but we're linked with each other now. And after the terrible isolation we've experienced we're not about to let go.
Recently the CFS ghetto has experienced some explosions. You possibly haven't heard because mainstream news media doesn't report on us much. But we chronics are sending each other articles, blog posts and video links like crazy.
I thought it would be nice if you got to read this stuff.
Last month, the American Association of Blood Banks advised people with CFS not to donate blood. It made sense, though it comes a bit late in the game. I'd decided years ago not to donate, since I'd gotten CFS.
The recent concern stems from research last fall linking a retrovirus, XMRV, with Chronic Fatigue Syndrome.
What if XMRV causes CFS? What if it's transmitted by blood?
Australia, Canada and New Zealand bar people with CFS from donating blood. Yet the U.S. doesn't.
Why not?
Then I heard the U.S. Food and Drug Administration and National Institutes of Health joined forces researching the possible link between XMRV and CFS.
The FDA and NIH? This was thrilling to me.
Word was leaked that they found XMRV in the blood of CFS subjects and healthy controls. Thrilling again. But then their research was held back from publication.
Meantime the Centers for Disease Control and Prevention published their own research, finding absolutely no XMRV in anybody's blood.
The CDC didn't use the same methods, the same CFS definition, or the same equipment to collect and keep blood samples, so their results were bound to be different from the FDA-NIH's.
All this leaves me with more questions than answers.
Other countries are protecting their people from XMRV and possible danger. Why not the U.S?
Why was the FDA-NIH research not published? Was it because their results differed from the CDC's?
But research papers contradicting each other are published all the time. What's different about CFS and XMRV?
That's been the question here in the CFS ghetto for years.
What is it about CFS that it's still not treated like a real disease?
Resources
Chronic Fatigue Sufferers May Be Asked to Avoid Donating Blood
http://blogs.wsj.com/health/2010/06/14/chronic-fatigue-sufferers-may-be-asked-to-avoid-donating-blood
Further Evidence of an XMRV-Chronic Fatigue Syndrome Connection?
http://blogs.wsj.com/health/2010/06/23/further-evidence-of-an-xmrv-chronic-fatigue-connection
A.M. Vitals: Confusion Over XMRV-Chronic Fatigue Syndrome Continues
http://blogs.wsj.com/health/2010/06/30/am-vitals-confusion-over-xmrv-chronic-fatigue-syndrome-continues
CDC Team's XMRV-Chronic Fatigue Syndrome Paper Is Out
http://blogs.wsj.com/health/2010/07/01/cdc-teams-xmrv-chronic-fatigue-syndrome-paper-is-out
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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