Friday, June 10, 2011

Innovation and the XMRV Paradox

"Ultimately, innovation cannot work without both significant government support and a vibrant and dynamic private sector that allows people to experiment, fail and try again." 
                                              — Fareed Zakaria
What ME/CFS needs is innovation.
In the 1980s, Dr. Jesse Stoff looked at his friend Charlie Pellegrino and said "I hope you like interesting diseases, because you've got one."  And so much about this disease confounds Standard Medical Wisdom.  Exercise doesn't make us feel better.  Drugs often have the opposite effect (e.g., I've had sleeping pills keep me awake).  Rest doesn't make us feel rested.
When I reported to one doctor that "exercising" my arm (using my hands to do things all day) resulted in paralytic muscle weakness at the end of the day, he asserted that this was "impossible", exercise should make the muscles stronger, not weaker, and wrote me off as a hypochondriac.  Fortunately, I had a friend with polio, and knew her doctor had told her "preserve to conserve", it was absolutely expected that her arm muscles would start to fail from overuse.  Exercising made her worse, just as it did me.  I knew enough to take the advice of her specialist over my generalist.  Limiting use of my hands is the key ... I stop when it starts to hurt.
Thankfully, patients and their families have funded a lot of innovative research, case in point, Whittemore Peterson Institute, which found the XMRV retrovirus.
And, thus far, WPI has won $65,000 from Chase Community Giving (possibly more to come if they're selected in the post-voting round for having the best purpose), which is a big help, could fund a few more studies, but is nowhere near the millions that other diseases get from the government.
We need "significant government support" – not $3.64 per patient, much of which is wasted on researching alleged psychiatric causes for a viral illness – to find the cause of ME/CFS.  Some forms of cancer get $650 per patient for research.  Why not us?  Dr. Klimas has noted that we are more debilitated than late-stage cancer patients.  But instead, she observes "these poor patients get nothing but attitude, they're patronized and have a poor standard of care. It's just not right. They're terribly ill and they deserve better than that."
This is a disease that costs the US economy $26,000,000,000 per year.  A mere 1% of that would be $260 million.  Throw that much at research in one year – proper medical research, not bogus psychiatric studies – and we can get a lot of patients back to work, recoup the expense in a matter of weeks.  But they simply will not do that, because that would require admitting they've lied in the past about the nature of the illness.
They may think, and rightfully so, that admitting they lied might expose them to having to pay reparations.  Decades of millions of lives wasted would not be inexpensive compensation.  These patients became sick through no fault of their own (unlike AIDS or herpes, CFS is not a lifestyle disease), remained sick through no fault of their own (you can't get better if you're not getting proper medication), and many were denied Disability benefits because there was no blood test to prove they weren't just faking (due to refusal of the government to properly research the illness to create a blood test).

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