Sunday, October 9, 2011

Bloggerama Day -- Two Years and Counting

Two years ago today, the Lombardi study, "Detection of infectious retrovirus, XMRV, in the blood cells of CFS patients" was published in Science.
Where has it gotten us?
A lot of squabbling over whether XMRV exists – but only as relates to CFS; I haven't heard of a single study discrediting its existence in prostate cancer patients.  Why is that?  Because they're men and have that scary disease called cancer, but we women can only have an imaginary illness caused by inability to handle a little stress?
As of February, I will have been sick for a quarter-century and unable to work full-time for 12 years.  That means I've lost somewhere upwards of a half-million dollars of income, which means the government has lost six figures of taxes that would've been paid on that income. 
If they want to balance the budget, the best way to do it would be to do the research that would get us back to work.  Lenny Jason estimates the cost to the US economy at $26B – billion with a B – per year.  Extremely rough figures, that's $6B in lost tax revenue each year.  In a really good year, we used to get $6M in research funding ... that's 1/1000th of the taxes we're too sick to pay.  Why not give us research funding of a mere 1% of the annual taxes we could be paying – that's $60M – and find something that gets us back to work?
Or bootstrap every patient to a year of Ampligen to see how many of us improve enough to get back to work and start paying for our own?  Oh, no, wait, that's right ... Ampligen isn't FDA approved, because the FDA can't approve an anti-viral treatment for something that CDC says is purely psychiatric.  The two government agencies can't contradict each other in that way.
I hope that eventually our disease will be taken seriously, but that hope is always tempered with the reality that the various treatments that have shown promise have worked for those who've been sick 5 years or less.  Ten years ago, I could delude myself that because of the 12-year remission before I became disabled, I might still slide in under that limit because I was less than 5 years into the disabling relapse, but no longer.  I now have to face the fact that any treatment they come up with will probably be too late to help me; I'm now fighting for the health of the next generation of patients.
I am doing remarkably well for a long-time patient, but, nonetheless, I am an old-timer, and have to acknowledge that there are nascent health problems that worry me because I know what they lead to.  Most of my friends in the CFS community are now past the average life expectancy of 58 and living on borrowed time.  I'm sneaking up on that number myself. 
As I write this, the word is spreading that one of our younger patients, Amberlin Wu, has passed, far short of that average 58 years.  Why me?  Not only "why me?" in the sense of why did I get this incurable disease which gets no respect and almost no research funding, but also "why me?" in the sense of why are younger patients succumbing while I'm still here and holding my own?  Did they perhaps get an even more virulent strain than my generation had?  If so, will there be anyone for me to pass the torch to when my time comes?
Meanwhile, I keep doing my part-time paying work, and writing activism/educational information when I can't maintain concentration long enough to earn money with proofreading.  I spend a lot of time resting in hopes of maintaining my health as long as possible, and try not to worry too much about the things that hint that I'm starting to lose that battle.  And that back-of-the-mind realization is spurring me on to spend more time working on the CFS book I've been writing, so that it will be ready to go before I do.
What do we have to do to get the respect, attention, research, treatment and cure that we deserve?


No comments: