Saturday, February 2, 2013

Slightly Alive: The US Government and ME/CFS

For example, the essential problem with NIH is that they allocate less than $6 per year per patient to this disease (compared to $500 per patient per year for MS). So a meeting never passes without NIH blaming the absence of funding for our disease on the researchers – saying they don't fill out funding requests effectively, but assuring us that they'll hold seminars to fix that. The statement is not only insulting, it's not really true, because most "CFS" researchers have had no trouble getting funding for something other than CFS. They suddenly become all thumbs when it comes to our disease? Sounds like the fault lies within NIH, not the researchers.

But there's no one to say that.

... We need the right to ask questions ourselves of the agency representatives in public. We need the right to be able to point out discrepancies. We need the right to get ANSWERS.

And the questioning can start with why the government ignores all the existing evidence into pathogens, biomarkers, and objectively defined abnormalities, substituting instead popular psychiatry.

* * *

I am not one who generally agrees with conspiracy theories, but where CFS is concerned, I find it plausible that the reason the government isn't actively looking into the cause is because they know the cause is a bioweapon experiment gone wrong.  If they proved we're really sick, they'd have to pay reparations.





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