SOURCE: ME Action

ME Action

May 18, 2016 14:03 ET

#MillionsMissing: Disabled Americans Demand Their Government Urgently Address ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

WASHINGTON, DC--(Marketwired - May 18, 2016) -  On Wednesday, May 25, 2016, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients, caretakers and advocates will protest at the U.S. Dept. of Health and Human Services (HHS) Washington, D.C. headquarters, as well as regional HHS offices and other locations in Atlanta, Boston, Dallas, Philadelphia, Raleigh, San Francisco and Seattle. The patient advocates demand the government make a serious commitment to urgently address the debilitating neuroimmune disease ME/CFS, including increased funding of $250 million per year for research and promoting appropriate clinical care for ME/CFS patients. They have also requested a meeting with HHS Secretary Burwell.

The patient advocates have launched the #MillionsMissing protest to highlight the millions of dollars missing in research funding to find effective treatments; the millions of medical and health care practitioners who fail to provide adequate care; and the millions of ME/CFS patients missing from their careers, schools, social lives, families -- and even this protest -- because they are so debilitated.

ME/CFS affects 1 to 2.5 million Americans and results in $17 to 24 billion a year in U.S. medical costs and lost productivity. ME/CFS patients can be more impaired than many other chronic illnesses, leaving 75% unable to work and one quarter bedbound or housebound. Some patients are so ill they are unable to feed themselves. Yet, a 2015 Institute of Medicine (IOM) report found "a paucity of research" and "remarkably little research funding" from the NIH, along with a medical community that "still doubt the existence or seriousness of this disease."

"Patients suffering from ME/CFS have been ignored for years by health agencies and mistreated by the medical community," said Jennifer Brea, founder of the #MEAction advocacy group, which is organizing the protests. "People have reached a breaking point. It's time to demand fair treatment."

ME/CFS is a chronic neuro-immune disorder characterized by unrelenting physical and mental exhaustion, post-exertional relapse, debilitating pain, cognitive and sleep dysfunction and severe immune dysfunction.

The IOM noted that patients with ME/CFS can be more functionally impaired than those with congestive heart failure, multiple sclerosis and end-stage renal disease. Yet, ME/CFS receives only $5 to 7 million per year in NIH research funding, much less than illnesses of similar disease burden.

The protesters have a specific set of demands:

1. Increase research funding and program investments for ME/CFS commensurate with the severity of the disease: $250 million per year.
2. Accelerate clinical trials for ME/CFS (there are no current FDA-approved medications for the disease).
3. Disseminate accurate medical education and clinical guidelines to end the spread of harmful, erroneous information about ME/CFS.
4. Provide HHS leadership, oversight and a serious commitment to urgently address ME/CFS.

ME/CFS advocates are calling on HHS to finally respond with the vigor and urgency warranted by the devastation of this disease. The millions of Americans with ME/CFS and their families can wait no longer.

The full protest demands found here: http://millionsmissing.meaction.net/protest-demands/

More information, see:  http://www.meaction.net/pressrelease/

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WASHINGTON, D.C. PROTEST
Who:
#MillionsMissing patient advocates living with and affected by ME/CFS
Where: HHS Headquarters, 200 Independence Ave SW, Washington, D.C.
When:  Wednesday, May 25, 2016 at 11 a.m.

REGIONAL HHS OFFICES AND OTHER LOCATIONS
Who:
#MillionsMissing patient advocates living with and affected by ME/CFS
Where: HHS Regional offices in Boston, Dallas, Philadelphia, Raleigh, San Francisco and Seattle, and CDC offices in Atlanta.
When: Wednesday, May 25, 2016. Times vary. Please inquire via contact info.

Contact Information