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Press Release – #MillionsMissing Day of Protest on May 25th

Contact

Mary Dimmock: [email protected]
Terri Wilder: [email protected]

FOR IMMEDIATE RELEASE 

#MillionsMissing: Disabled Americans Demand Their Government Urgently Address

ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

WASHINGTON, D.C., May 18, 2016 — On Wednesday, May 25 at 11 a.m., 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 at other times that same day at regional HHS offices and other locations in Atlanta, Boston, Dallas, Philadelphia, Raleigh, San Francisco and Seattle. The patient advocates will demand the government make a serious commitment to urgently address the debilitating neuroimmune disease ME/CFS, including funding research and promoting appropriate clinical care for ME/CFS patients. They have also requested a meeting with the office of HHS Secretary Burwell. Advocates have been told this could take months to schedule.

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. At the Washington, D.C. demonstration, a haunting display of patients’ empty shoes will make visible the currently invisible 1 to 2.5 million Americans with ME/CFS, many of whom are so ill they cannot leave their homes or beds for years at a time, and may even be too sick to feed themselves. [1]

“Patients suffering from ME/CFS have been effectively 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 prestigious Institute of Medicine (IOM), in its 2015 report, notes that patients with ME/CFS can be more functionally impaired than those with congestive heart failure, multiple sclerosis and end-stage renal disease. [2] Yet, ME/CFS receives only $5 to 7 million per year in National Institutes of Health research funding, much less than illnesses of similar disease burden. [3] The IOM report confirms that ME/CFS receives “remarkably little research funding.” [4] This neglect has driven academic researchers and pharmaceutical companies away from doing research in this disease.

Further, despite the overwhelming evidence of the severity of ME/CFS, the 2015 IOM report states that many in the medical community “still doubt the existence or seriousness of this disease” and treat patients with “hostile attitudes.” [5]

The protesters have united behind 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.

Advocates say the government and medical community have neglected and stigmatized ME/CFS for the last 30 years. Patient advocates will demand that their government 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/

Follow us on https://www.facebook.com/MEActNet/ and @MEActNet

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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:  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 below.

 

Contact

Mary Dimmock: [email protected]

Terri Wilder: [email protected]

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 Links to news coverage of ME/CFS

  1. http://www.newyorker.com/tech/elements/chronic-fatigue-syndrome-iom-report
  2. http://www.theatlantic.com/health/archive/2015/10/chronic-fatigue-patients-push-for-an-elusive-cure/409534/
  3. Video of a severely ill ME/CFS patient: https://youtu.be/vfZwqLjDR4w

Photo options to accurately portray ME/CFS patients

http://phoenixrising.me/stock-photography

Sources

[1] https://www.washingtonpost.com/national/health-science/with-his-son-terribly-ill-a-top-scientist-takes-on-chronic-fatigue-syndrome/2015/10/05/c5d6189c-4041-11e5-8d45-d815146f81fa_story.html

[2] http://www.nap.edu/read/19012/  (page 31)

[3] https://report.nih.gov/categorical_spending.aspx

[4] http://www.nap.edu/read/19012/  (page 9)

[5] http://www.nap.edu/read/19012/   (page 16, 29)