Each year the Senate and House appropriations committees take submissions for planning the federal budget and expenditures. This includes funding for federal disease research. This spring, MEadvocacy once again sent in submissions outlining the devastating nature of myalgic encephalomyelitis (ME) and the need for research.
Submissions were sent to the House and Senate appropriations subcommittees with jurisdiction over the Department of Health and Human Services. We educated the committees on myalgic encephalomyelitis, the plight of severe ME patients due to lack of research funding, and asked for $250 million in federal research funding.
In Person Deliveries
In early June, thanks to volunteers (including relatives of Tom C., featured on our home page), MEadvocacy has been able to distribute dozens of packets of information to Congress. The members of several health committees with jurisdiction over the Department of Health and Human Services (HHS) were targeted.
The information explained the disease, included stories of the devastating impact of the disease on severe ME patients, and how HHS has consistently neglected and underfunded the disease for decades.
We are asking that the members of Congress require the following from Health and Human Services:
Use the historic name myalgic encephalomyelitis
Use ME expert authored criteria - the Canadian Consensus Criteria or International Consensus Criteria
Cease using the overly broad CDC criteria (Oxford, Fukuda, Reeves)
$250 million in federal research annually to bring ME on par with similar diseases
Provide correct and unified medical education from HHS agencies
HHS to partner openly and transparently with stakeholders
Patients and activists in our community have been asking Health and Human Services departments for more than 30 years to do what is expected of them. Their mandate is to do research, find treatments, and disseminate accurate information about myalgic encephalomyelitis so patients can get the care needed to improve quality of life.
Showing a pattern of institutional bias against our disease, HHS has neglected to fulfill their duties. So we are imploring members of Congress to see that the future is not a repeat of the past.
What Can You Do?
Contact your member of Congress and ask if they received a packet about myalgic encephalomyelitis and let them know this directly affects you and your family. If they didn’t receive one, ask them to go to www.MEadvocacy.org to read about ME and learn more on the resources page.
Together we can be heard.