IN SEARCH OF THE TIPPING POINT,

[Guest guest]

Three ME/CFS patients launch a campaign to get the government's attention

Beginning today, ME/CFS patients Rivka , Charlotte von Salis and

are launching the " Time for Action " campaign. Using email, fax and phone,

the trio are asking ME/CFS patients to contact Director of the National

Institute of Allergy and Infectious Disease Dr. Fauci and Director of

the National Institutes of Health Dr. Francis every day and pose the

same question: " What have you done for ME/CFS today? Patients and their

families are waiting. "

organized the September 7 meeting of nine patients and their

families with NIH scientists Gottesman, Plotz and Roland Owens, in

Bethesda, land, right before the NIH's first international XMRV conference

began. Along with , and von Salis were among the patients who

attended.

's mother was also there—and came up with the idea for the new campaign.

" Bug them every day! " she advised her daughter. It was a light-bulb moment for

. " It lets the government know we're watching them, waiting for them to

help us, " she explains. " And it's what we're calling `advocacy made easy.' This

way we can include everyone in the action campaign—even the severely ill. The

way I see it, and I'm speaking for myself personally here, this illness and we

patients who suffer from it have been ignored, delegitimized, psychologized and

marginalized since the early 1980s, when many of us first got sick.

, a playwright from Boston, and , a former fire boss in Utah (who

moved to Reno, Nevada, last year for the experimental HIV and ME/CFS intravenous

drug Ampligen from CFS-literate physician Dr. ) have been ill for

a quarter century.

Von Salis, a lawyer, lives outside Washington, D.C., and has spent the last two

decades bed-bound or house-bound. " NIH Deputy Director Gottesman pointed out

during our meeting that AIDS activists definitely had an impact on the NIH's

response to their disease, " von Salis recalls. " ME/CFS requires as strong a

response from the NIH as AIDS did, especially in light of recent research

indicating a retroviral association. Increasingly greater numbers of patients,

their families and friends are completely fed up with the lack of governmental

response to ME/CFS and are prepared to act, just as PWAs [persons with AIDS]

did. This simple campaign puts the NIH on notice that we're not about to remain

silent and accept the status quo. If we don't get a response or the response is

inadequate, we will follow up with another action. "

agrees. Although she was pleased with the September 7 meeting between

ME/CFS patients and NIH officials, as well as the NIH two-day international XMRV

conference, she's looking for a little less conversation and a little more

action on the part of both patients and government. " We won't get fast-track

clinical trials by waiting for them, " she says. " We need to demand them. We

won't get funding for ME/CFS centers of excellence by waiting for them. We need

to demand them. The NIH will see a repeat of the ACT UP days of AIDS activism if

they don't move to actually help us ME/CFS patients, and fast. "

Contact info: National Institutes of Allergy and Infectious Disease

Director Fauci

Email: afauci@...

Phone: Fax:

National Institutes of Health

Director Francis

Email: collinsf@...

Phone: Fax: