Hillenbrand/CFIDSME Activism

December 24, 2003

Yeah, I'm about 1/2 through Shoemaker's book Desperation Medicine. It seems

to me that he gives great examples of how government loves to deny what is

really going on when epidemics arise (which really scares me now that I am more

enlightened to the beaurocrat's tricks and when they say our beef is safe, like

they really know that right now). They did it with Pfiesteria, Ciguatera,

blue-green algae, lyme disease and of course CFS. CFS is the most unspecific

though and that's the catch, as Jill said, it is the result of possibly more

than one thing or if just one thing, we don't know what it is, whereas the other

things we at least know what it is and only need to study it more to hopefully

find out more truth (although proper studies are another problem as gov't

loves to cover up and deny and do poorly controled bogus studies using " The

Appearance of Good Science " scheme that Shoemaker loves to quote). So ask

yourself, is gov't likely to pour money into an area where it may make them look

real

bad if we finally found out what the truth really is and perhaps they have

caused it in the first place (whether by their own actions or inaction of proper

restrictions)? Private research hiring real credible scientists seems the

best we can do for now.

In a message dated 12/24/03 7:49:09 PM Eastern Standard Time,

writes:

Look at the NIH's CFS information board - that huge granting agency - theres

almost nothing on it. Thats just a travesty. A few notes on some conferences

that took place several years ago. Its sickening.

The research community does not have anywhere near the urgency that the

patient community has. Look at AIDS - activists there radically changed the

way research and treatment was done; they sped the process up. Thats what we

need. Of course they were dying all over the place - that helped get some

attention.

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