Washington, DC, April 03, 2019 --(PR.com
)-- Funding for ME/CFS has been tragically neglected for decades, historically receiving $5 million per year, which falls drastically short of the parity of $250 million per year, the amount of funding ME should receive based on its disease burden, meaning the number of people sick and severity of the disease, according to research.
Those who suffer with ME/CFS score more poorly on quality of life studies than patients with any other disease measured including: multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and various cancers. The disease affects a high proportion of Americans – estimates range from 1 to 2.5 million people.
In a December 2018 letter to Secretary Alex Azar of the Department of Health and Human Services, 42 bi-partisan members of the House and Senate called for improved accountability and action for those with ME/CFS. The letter reads in part:
For decades, Americans living with ME/CFS have struggled to access effective, comprehensive care to help treat their disease. This is not only due to the “relative paucity of research conducted on ME/CFS,” but also a dearth of clinical expertise available to treat individuals with ME/CFS.
This lack of ME/CFS expertise is getting worse as many experts and clinicians near retirement. Additionally, inappropriate clinical guidance has led to improper clinical care that harms patients.
Patients and advocates will come together on April 3 to share their unique stories with members of Congress.
“Too many have already died. Too many are turning to suicide, feeling there is no way out of their nightmare. Too many suffer in silence, with little hope. It’s time to change this.” – Carol Head, President & CEO of the Solve ME/CFS Initiative and ME/CFS patient.
"This is about more than a disease. This is a social justice issue. We are fighting for the research funding and medical education we need to stop this epidemic. We are fighting for our lives.” – Jennifer Brea, co-founder of #MEAction, and director of the award-winning documentary, Unrest.
About The Disease: ME/CFS is a chronic, multi-systemic disease that profoundly limits the health of patients, rendering 75 percent unable to work and 25 percent house or bed bound. The disease affects as many as 2.5 million Americans and nearly 20 million people worldwide. The causes of ME/CFS are still unknown and there are no FDA-approved drugs or treatments for the disease. There is currently no cure.
About The Organizations:
The Solve ME/CFS Initiative (SMCI) is the leading national non-profit organization solely dedicated to solving ME/CFS. We are committed to making ME/CFS understood, diagnosable, and treatable. SMCI works to accelerate the discovery of safe and effective treatments, strives for an aggressive expansion of funding for research that will lead to a cure, and seeks to engage the entire ME/CFS community.
To learn more, visit our website at www.solveCFS.org and follow us on Twitter @plzsolveCFS
#MEAction is an international network of patients, caregivers and allies fighting for health equality for Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). We build community and mobilize patients, family, and allies to make ME visible and fight for health equality.
To learn more, visit: http://meaction.net and http://millionsmissing.org, and follow us on Twitter at @meactnet
To cover this event or to schedule interviews, please contact:
Karman Kregloe, SMCI Communications and Media Relations Manager
Adriane Tillman, #MEAction Editor & Communications Manager