By Erica Verrillo
On Tuesday, December 10th, Susan Kreutzer continued her campaign to draw attention to the plight of nearly one million ME/CFS patients in the US, by taking her cause to the nation’s capital. As fate would have it, December 10th was the day Washington experienced one of its rare snow storms. Federal offices were shut down, but that did not prevent Susan from following her plan.
The timing of Susan’s visit was crucial. December 10th and 11th were the days scheduled for the semi-annual meeting of the CFS Advisory Committee (CFSAC – pronounced “sieve-sack”). This year, for the first time since its inception in 2003, the meeting was to be held as a webinar.
In spite of the fact that the CFSAC meeting was canceled that day due to the weather, Susan set up her table at the entrance to HHS headquarters and displayed a scroll with 3,000 signatures from a petition demanding the cancelation of the IOM contract. Nigel Lyons, a capital area cinematographer, was the only person to accompany Susan. The snow was falling heavily, but Nigel filmed until he could “no longer hold the camera.”
After submitting two petitions totaling 6,000 signatures for delivery to Secretary Sebelius, Susan tried to set up appointments with representatives on the Hill. Only one, Congressman John Garamendi (D-CA), had an opening.
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Wednesday found Susan at the Rayburn House Office Building, where she met with Emily Burns, Legislative Correspondent and assistant to Representative Garamendi. There, Susan made the case for increased funding for researching ME/CFS.
“Male pattern baldness gets $16 million a year in federal funding,” she said, “while ME/CFS gets only $6 million.” The contrast between an illness that leaves people confined to their beds with one merely affecting vanity could not have been made more succinctly. Nor could the pleas of the ME/CFS community to “take us seriously” have been more concrete than the two petitions Susan handed to Ms. Burns that morning.
Susan intends to make another trip to Washington on January 26, during the week of the State of the Union Address, to finish what she started – handing the two petitions to 20 additional representatives.
In a final statement, Nigel filmed Susan in front of the White House, where she made her purpose clear. “For people who are in bed, and who can’t get out here, we are going to find a way for you to have a voice.”
“We will speak our truth.”
Erica Verrillo is the author of Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition, available as an electronic book on Amazon, Barnes & Noble, Kobo and Payhip (PDF file). Her website,CFSTreatmentGuide.com, provides practical resources for patients with ME/CFS. She also writes a blog, Onward Through the Fog, with up-to-date news and information about the illness, as well as the full text of CFS: A Treatment Guide, 1st Edition (available in translation). Ms. Verrillo has been the editor of ProHealth’s ME/CFS HealthWatch and Natural Wellness HealthWatch since February 2013.