#MillionsMissing Meets With Government Officials

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In late May, protesters all over the world met with their government representatives to discuss the #MillionsMissing demands:  better research funding, better physician training, and government oversight for ME/CFS.
In Washington, DC, nine #MillionsMissing protesters met with 17 U.S. Congressional offices:

  • 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)

Sonya met with Senator McCain’s aide for an hour, and McCain joined Irey for part of the meeting.  The staffer began to explain ME/CFS to the Senator, vividly describing the effort it was taking for the protestor to stay seated in her chair as “a marathon”.  The meeting ended with a promise from McCain to take steps to raise awareness and to support more research funding for ME.  Part of the success of Sonya’s meeting may be in that she exchanged many friendly calls before the meeting.  “Establishing that connection is crucial,” Jen Brea said.
Laura Benton’s meeting with Senator Lindsey Graham’s office was also very promising.  Senator Graham’s staffer committed to work actively on concrete actions to support ME patients and research.  Stacy Hodges and Jen Brea also met with their senators’ staffs and reported positive results. Over the coming weeks, #MEAction will coordinate with these protesters to follow up on these and the other productive meetings, as well as arrange new Congressional meetings for additional ME Action members.

Stacy Hodges and her husband William after their meeting with NC Senator Richard Burr.
At the San Francisco protest, Jane Pannell and three others met with Department of Health and Human Services (HHS) officials.  “We had a good meeting,” Pannell said.  “We presented her [the HHS official] with the demands; we sat with the poster of Whitney.  The woman was clearly shocked to see how [ill] someone with this disease could be.  We hammered in the fact that what HHS has done is way too little and far too slow.”  The local official promised to do what she could to get the protesters a meeting in Secretary Burwell’s office.  “She knows I will follow up within a week,” Pannell added.  Boston and San Francisco HHS representatives also told ME advocates that they would be willing to help get meetings with other HHS representatives across the U.S.
The HHS office in Washington D.C. has promised ME Action a meeting with Karen DeSalvo, the Acting Assistant Secretary for Health. The date for the meeting has not yet been determined.
Atlanta protestors have scheduled a meeting to speak with officials at the Centers for Disease Control (CDC); and in Dallas, Kellyanne Wargo and Karena Branham spoke to the Deputy Regional Administrator at HHS.
Elizabeth Burlingame and Ryan Prior in Atlanta 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 Forgotten Plague for the entire Division of High Consequence Pathogens.
Prior kept busy, also meeting with Louisiana Senator Bill Cassidy and Georgia Representative Barry Loudermilk, which resulted in promising support from their offices.
Representative Barry Loudermilk’s staffer Colin Carr pictured with Ryan Prior during their meeting.
In Canada, virtual protesters asked for a meeting with Jane Philpott, the Health Minister.
London received some governmental attention as well.  “A former MP-turned-academic stopped to speak with us,” L.A. Cooper said.  “Yvette Cooper [an MP] also stopped by.”
Greens MP Colleen Hartland in Australia invited Karyn Adams and Anna Kennedy to brief her about #MillionsMissing Melbourne.  Also invited to the meeting are Elizabeth Logan, the CEO of Emerge, and Professor Sonya Marshall-Gradisnik, the lead researcher from the National Centre for Neuroimmunology and Emerging Diseases.  “It’s encouraging to have a politician showing an interest and wanting to learn more,” Kennedy said.  “We will let you know how it goes!”

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5 thoughts on “#MillionsMissing Meets With Government Officials”

  1. I must say thank you to all of you for speaking on my behalf! I have been one of the millions missing since 1993 and feel that through your voices and efforts to show up, I now have Hope! My shoes were in D.C. but you added my voice.
    Again, my gratitude to all of you is boundless!!!

    1. Thank you, Frieda! It’s been humbling and amazing to connect to the #MillionsMissing out there. The experience and feeling is hard to describe.

  2. Thank you all for the work that you volunteers are doing for people with ME/CFS. You are making a difference… and you are making history! #millionsmissing but maybe we can make a come back!

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