Another leaf from ME activism: Foxes Chasing the Hounds

[Guest guest]

Time to up the game?

This campaign started few weeks ago of showering CDC NIH FDA etc scientists

and top level people with phonecalls emails etc, already it is working! The

campaign is all the talk in the corridors and keeping officials on their

toes etc

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http://www.cfscentral.com/

..... In Outrage, AIDS activist Larry Kramer recalls an incident during the

Reagan administration when at a party he ran into Terry Dolan, at the time

the head of the National Conservative Political Action Committee. President

Reagan still had not uttered the word ³AIDS² in public and had done nothing

to contain the disease or help thousands of people who were dying an

agonizing death from it. ³How dare you come to a party of gay people after

what you¹re doing to us?² Kramer asked Dolan and threw a drink in his face.

³You¹re raising money to kill us.²

I¹m not advocating throwing drinks in anyone¹s face. But I am advocating

that patients discard their inside voices every time those in power turn

ME/CFS into a benign psychiatric problem when it is, in fact, a severe

neuroimmune disease, until scientists get the message that patients aren¹t

going to put up with the lies and doublespeak anymore, until duplicitous

scientists become so embarrassed and beleaguered from being besieged by

emails, faxes and phone calls, that they give up the charade or, better yet,

retire.

Clinical trials now

At the recent Chronic Fatigue Syndrome Advisory Committee meeting, the

National Cancer Institute¹s Dr. Stuart LeGrice informed patient advocate

Cort , without any irony: ³I don't think this ŒWhat Have You Done For

Me Lately¹ campaign is helping. I don¹t need to have [NIH Director] Dr.

call me and ask me, ŒWhat are you doing for CFS?¹ ² Wow. What a

light-bulb moment that was! Clearly, as Cort pointed out, the

campaign is working.

.... I believe the reason most people think that ME/CFS is a benign mental

disorder is because scientists and the government have been telling them

that for a quarter century. There¹s a great moment in Outrage when activist

pronounces that all activism is driven by rage. ³People are

suffering and dying because some self-promoting asshole is telling a lie,²

he says. Isn¹t that what¹s been happening with ME/CFS in the United States

since the Incline Village, Nevada, outbreak of 1984? It¹s time that

patients once and for all get angry enough‹and stay angry enough‹to put an

end to it....

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