Millions Missing Protest Brings ME/CFS into the Political Spotlight

On May 25, 2016, a sea of empty shoes lined the pavement in front of the Health and Human Services Headquarters in Washington D.C. to highlight the plight of ME/CFS sufferers during the “Millions Missing” international day of action.

Sponsored by the patient advocate group, MEAction, the Millions Missing global day of protest raised awareness of the millions of patients around the world who are considered to be “missing” from their careers, schools, families, and social lives due to the debilitating effects of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS).

ME/CFS is an incapacitating disease that is characterized by extreme fatigue and decreased mental alertness that does not improve with rest and is not explained by an underlying medical condition. The impact on a patients’ quality of life can be so severe as to render them unable to care for themselves or even to become bedbound. The cost of ME/CFS to society in the United States has been estimated at over $20 billion per year in lost wages and medical care.

For decades, physicians and scientists have dismissed what’s now typically called ME/CFS or by its more recent name, Systemic Exertion Intolerance Disease (SEID), as trivial or psychosomatic, a fact not helped by its unknown cause and broad set of associated symptoms. Meanwhile, diagnostic tests and effective treatments have remained elusive.

MEAction Gains Political Footing

The Millions Missing protest aimed at shining a spotlight on the need for better research funding, better physician training, and government oversight for ME/CFS. In late May, protestors around the globe met with their representatives to demand action.  

Last month in Washington D.C., Millions Missing protesters met with 17 U.S. Congressional offices, including:

  • Senator McCain (AZ-R)
  • Lindsey Graham SC-R)
  • Dianne Feinstein (CA-D)
  • Tammy Baldwin (WI-D)
  • Cory Booker (NJ-D)
  • John Isakson (GA-R)
  • Kirsten Gillibrand (NY-D)
  • Tim Kaine (VA-D)
  • Mark Warner (VA-D)
  • Barbara Boxer (CA-D)
  • John Tester (MT-D)
  • Patty Murray (WA-D)
  • Tim Scott (SC-R)
  • Richard Burr (NC-R)
  • Bill Cassidy (LA-R)

The Health and Human Services (HHS) office in Washington D.C. agreed to set up a meeting between MEAction representatives and Karen DeSalvo, the Acting Assistant Secretary of Health.

In San Francisco, advocates met with Department of HHS officials to request a meeting with Secretary Burwell. HHS representatives in Boston and San Francisco also told ME advocates that they would help arrange meetings with other HHS representatives.

  Ryan Prior meets with Senator Bill Cassidy

Atlanta protestors scheduled a meeting to speak with officials at the Centers for Disease Control (CDC). Also in Atlanta, Ryan Prior, director and producer of the recently released ME/CFS documentary, Forgotten Plague, and Elizabeth Burlingame (organizer of the Atlanta Millions Missing protest) met with Dr. McQuiston, the Deputy Director of the Division of High Consequence Pathogens at the CDC, which oversees six branches, including the Chronic Viral Disease branch, headed by Beth Unger. Prior and Burlingame discussed the controversial recommendation for graded exercise in ME/CFS; McQuiston promised to do a screening of The Forgotten Plague for the entire Division of High Consequence Pathogens. Ryan Prior also met with Louisiana Senator, Bill Cassidy, and Georgia Representative, Barry Loudermilk, resulting in a promise of support from their offices.

Internationally, protestors in Canada, London, and Australia met with Department of Health and other government officials to raise awareness for ME/CFS research and funding.

Over the coming weeks, MEAction will be coordinating with protesters to follow up on these and the other productive meetings, as well as to arrange new Congressional meetings for additional MEAction members.