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"America's Hidden Health Crisis" Heads For Congress On April 3rd Demanding Action For Millions With ME/CFS

Thursday 4 April 2019




Solve ME/CFS Initiative / ME Action

"America’s Hidden Health Crisis" Heads for Congress on April 3rd Demanding Action for Millions with ME/CFS

Wednesday, April 3, 2019

PDF Version

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 --( 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.


Full article…



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