Thursday, November 8, 2012

The greater social question

Llewellyn King asks:
These drugs, Ampligen and Retuxin, with their hint of hope in a dark sky, raise a basic societal issue: Is it better for society to pay to make hundreds of thousands of citizens well enough to work, or is the externality of lost work too hard to figure into public health policy and budgeting?
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Dr. Jason estimates the loss to the US economy from CFS is $26B per year.  If we could devote just 1% of that ($260M) to CFS research each year, the taxes paid by those who return to the workforce as a result of treatment would quickly return that to the treasury.


Betty Laluna said...

As far as I am concerned and based on some of the research as well as those who have gone out on a limb to try these medications in trials, they don't offer hope but they do offer many side effects and perhaps over time longer ill effects on health...given we're still at does this disease exist (although we know it does - we ARE the walking dead) how on earth do they justify low dose CHEMO? Those who demand approval of these medications must really believe in rainbows and butterflies is this justified? WHY would ANYONE demand medications that are TOXIC for treatment? TOXIC!!! Given the high rate of those of us who eventually do get cancer (due to ebv, hhv6 amongst others...) WHAT chance will we have to beat cancer when it comes around? Is it worth doing FURTHER damage to an already weakend body? ARE we willing to do the real research or let Big Pharma baffle us with yet more B.S.? The truth is, we only became 'interesting' when they saw we could help profits, then when you're further strung out and damaged on these meds, they can really call us crazy because of all the 'statistical' data that says these meds are effective so we must not really WANT to get better...OPEN YOUR EYES...there are no miracle cures or exlixirs until they can answer WHAT IT IS...moreover, we deserve more than to be branded guinea's time we all were a little more responsible rather than regurgitating what we hear, DIG for the REAL data...and follow who stands to benefit, then perhaps we'll begin to see a light at the end of the tunnel...they say: Careful what you wish for because you just might get it...I can't think of a better case where that applies then OUR situations...

CFS Facts said...

Well, Betty, when I was talking to Dr. Lombardi at WPI about potential treatments soon after XMRV was implicated, I brought up that someone had warned me off AZT "because it's toxic", and asked his opinion. After the mandatory disclaimers that he's a science doctor, not a medical doctor, Vince pointed out that a retrovirus REQUIRES toxic drugs to kill it off. "If it were me, I'd be on AZT so fast your head would spin."

Now, obviously, XMRV has been discredited, but I think the observation still holds true that a nasty disease requires nasty drugs; they need to be toxic to the disease.