FOR IMMEDIATE RELEASE
Disabled Americans Protest US National Institutes of Health's Pathways to Prevention (P2P) Workshop
Demonstrations at NIH in Bethesda, MD
Bethesda, MD, December 8, 2014 -- On December 10, 2014, disabled Americans will protest to voice their anger over continued mistreatment by the U.S. National Institutes of Health (NIH) and Department of Health and Human Services (HHS). The demonstration is slated for this location and time: in front of the NIH Gateway Center on South Drive, Bethesda, MD, 7:30 a.m. – 2:30 p.m.
Protest organizers Tom and Christine Jarrett, of Westfield, IN, will be taking a stand for patients who have ME (myalgic encephalomyelitis). In doing so, he will be calling attention to the plight of one million disabled Americans suffering with ME and their neglect and mistreatment by their government.
The protesting patients and their supporters demand a halt to the ill conceived disease redefinition report produced by the NIH's P2P meeting, which they think will set back their cause by decades. They are also demanding the immediate adoption of the Canadian Consensus Criteria (CCC) to define the disease and the cancellation of the IOM (Institute of Medicine) contract to redefine ME. Fifty experts in the disease have written to the Secretary of HHS that they have adopted the CCC, subject to updates (including the ME International Consensus Criteria). Thousands of advocates have supported these experts with emails, blog posts, tweets, and other means for months.
For nearly 30 years, people with the debilitating disease, ME, often referred to in the US by the disparaging name of “chronic fatigue syndrome”, have suffered the ravages of a neuro-immune disease that has left many confined to their beds or homes in pain and dysfunction. But since the outbreak of the disease in Incline Village, Nevada in the mid-1980s, nearly nothing has been done by the federal government to support research into the disease. A scant 5 million dollars per year has been allocated for research into a disease that affects more than 1 million Americans and which costs this country more than $17 billion annually in lost productivity and medical costs. So little has been spent on educating physicians about the disease that fewer than 15% of doctors can explain what it is.
ME patient Tom Jarrett is among those who have lost their livelihoods to this disease. But as a former estate and certified financial planner, he has not lost his fighting spirit. “NIH is not truly listening to what the patients say. Internal NIH emails obtained through a FOIA lawsuit stating ‘File all these responses. No need to answer them directly’ prove this claim. They have a pre-set agenda for this P2P workshop and the corresponding IOM redefinition effort, and they intend to carry it out regardless of what patients and their doctors say. We are here to protest these redefinition projects that waste taxpayer money and harm patients by moving research backward in time, away from neuro-immune biomarkers, and toward the generic symptom of fatigue,” he says.
"There is so much at stake here for my family and for the ME community," Tom says. "Will the P2P meeting and resulting report result in decades more of neglect, while my sons grow up without a healthy father, and patients with ME suffer and die, saddled with a vague disease definition, a trivializing name, and no hope of a cure? I don’t think so, because we patients will keep fighting until the NIH stops and truly listens to our voices."