Friday, June 3, 2011

CFS Bloggerama Day

To X or not to X, that is the question...
Amid all the controversy of whether XMRV "causes" CFS, we're losing the reality that some members of our community have been proven to have a retrovirus.  Regardless of whether it "caused" their CFS or not, they now have proof that it's not all in their heads.  And those who've been able to get on anti-retrovirals (AIDS drugs) after being diagnosed X-positive have improved.
About 5 years ago, I had my first C-Reactive Protein test, which was about 10x what it should be.  Even though it couldn't tell us what virus I had, it did prove that there's something physically wrong.  That seemed to make the difference for some people who'd previously been grasping at straws to find psychiatric explanations.
Not knowing which virus I have, I wasn't able to get anyone to prescribe AZT, but I was taken more seriously.
In my case, the treatment has been almost exclusively directed to improving the quality/quantity of my sleep.  Sleeping pills finally broke the endless cycle of insomnia > pain > more insomnia > worse pain.  Added bonus, sleeping 8 hours a night instead of 2 (if I was lucky) regenerated my immune system which was able to get the upper hand over the virus again. 
When the sleeping pills that worked for me were no longer available, Dr. Murphree ( recommended 5HTP, which helped me sleep naturally if the pain wasn't too bad.  A Sleep Number bed also helped – yes, they're expensive, but I was able to work enough extra hours in the first year to completely pay for it.  Finally getting a prescription for pain pills that work on neurological pain (Advil doesn't) also helped me sleep.
Am I doing as well as friends who've been prescribed AZT or Ampligen?  No.  But I'm doing a lot better than I was 10 years ago when I literally had one foot in the grave.  If this is as good as it ever gets, I can live with it.  If I were permanently stuck where I was 10 years ago, I would've crawled to the nearest bridge and figured out a way to fling myself off. 
Some of the pills I've been given in the past decade have had weight gain as a side effect.  One made me gain 4 pounds in a month; another put on 30 pounds in the first few months.  So I'm no longer the sylph I was before I got sick.  But that extra weight is a small price to pay for feeling this much better, and thankfully, my doctor recognizes that "all drugs have side effects" and isn't pressuring me to lose the weight that I gained as a result of what he was prescribing.
Some of the XMRV detractors have tried to say it's lab contamination.  If that's true, then why do a large percentage of samples tested in the same lab come up X-negative?
That's one of the questions we need to ask every time they throw out that contamination red herring. Make them defend their accusations, which are just another way for them to deny that we're really sick.
I'm not much of a conspiracy theorist.  I'll laugh off most of them.  But I do have to admit that it sounds plausible that the government does not want to do too much research into CFS because it'll uncover something that will require them to pay significant reparations to patients who got sick, but didn't die.  And, corollary thereto, that they need to discredit any research that comes too close to finding the truth.
It's immaterial to me whether CFS is ultimately proven to be caused by XMRV or if it weakens the immune system enough to allow XMRV in as an "opportunistic infection".  What counts is that the people who have it have been helped with proper medication.  And that should be the ultimate goal here – not wasting energy on arguing over the name (which CDC has already stated they're never going to change) or whether XMRV is the actual cause. 
I don't care what you call it ... just get me back to work!

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