on CAA,/ Shan on Kenny DeMeirlier

[Guest guest]

Hello!

, I agree that the power struggle between Iverson and Kenney negatively

impacted everything about the CAA, and most everything since has been

counterproductive. To me, it is no longer an advocacy group, and lately seems to

be moving more towards an information and education vehicle, like the American

Cancer Society or the Alzheimer's and Parkinson's Foundations. And, IMHO, it's

so very self aggrandizing of late.

They do have great information, but for them to pretend anything more is

ludicrous considering their bedfellows, the NIH and the CDC. The last straw was

the notice from them asking members to " thank " the director of the Office of

Women's Health for the yet to be formulated and disseminated " public awareness

campaign " .

Or I thought it was the last straw, until I read your comment about ED & CEO

McCleary now living in Texas...are you sure about that? That's one helluva

commute to North Carolina. I was once the ED of a large 'not for profit', and

the Board would have strangled me if I tried a stunt like that! They wouldn't

even let me telecommute from home a few miles away when I first took ill. But

then, mine was a more typical 501c3...my salary was pretty small and very few

paid staff. And it was definitely tied to performance review by my Board of

Directors. They controlled me, not the opposite, as is possibly the case in the

CAA.

Shan, I've been reading Kenny DeMeirlier's stuff for at least a decade, I

don't think he's been secretive about it. His RNase L work is at least that old.

In fact I think he's one of the more prolific publishing researchers. He

presents regularly here in the states at large medical conferences (the AACFS

comes to mind).

And at no time has it been proved to be a " cure " . It's simply hypothesis, with

some good solid science behind it. Anyone who thinks there is going to be a

" cure " for CFS or ME is grasping at straws. With something as muti-systemic as

these diseases, treatments that address specific symptoms towards a holistic

improvement are what we hope for. People thinking a magic pill is going to

appear are deluding themselves.

That's why, when it IS recognized medically it is classified as a chronic

illness.

Like many other research conclusions of the past decade in CFS, it is just

another possibility. And he was wise to patent it, for if he didn't some

pharmaceutical company would have grabbed it and patented it themselves, and

that would have made the information much more inaccessible.

Kathy

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