"America’s Hidden Health Crisis" Heads for Congress on April 3rd Demanding

Action for Millions with ME/CFS

Hundreds of severely ill people with ME/CFS, caregivers, allies, scientists, and clinicians from
across the country are heading for Capitol Hill on April 3rd to urge Congress to give us hope, and
fully fund ME/CFS medical research and education programs. The CDC has called ME/CFS
“America’s hidden health crisis.”

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

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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
Cell: 323.828.1655
kkregloe@solvecfs.org

Adriane Tillman, #MEAction Editor & Communications Manager

Cell: 510-759-2900
adriane@meaction.net

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Contact Information:
Solve ME/CFS Initiative
Karman Kregloe
323-828-1655
Contact via Email
https://solvecfs.org/

Online Version of Press Release:

You can read the online version of this press release at: https://www.pr.com/press-release/781494

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