Advocating with Evidence for ME/CFS

by | Nov 1, 2015 | ME/CFS, Research News

By Suzanne D. Vernon, PhD, ME Research Czarista

Dr. Lucinda (Cindy) Bateman, Chief Medical Officer of the Bateman Horne Center; Scott Stevens, Chairman of the Board and I had the privilege of meeting with two staff aides in the office of Senator Hatch. We presented them with a folder of evidence including an overview and the physician’s guide of the Institute of Medicine Redefining ME/CFS, a 1-page summary with citations of ME/CFS disease burden and a brochure about the Bateman Horne Center.

Senator Hatch has been an ardent supporter of the Bateman Horne Center (formerly the Fatigue Consultation Clinic and OFFER) since it was established in 2001. In January 2015 Senator Hatch became President pro tempore, the second-highest-ranking official of the United States Senate. He is the Chairman of the Senate Finance Committee and serves on the Board of Directors for the United States Holocaust Memorial Museum. Senate Hatch is definitely the kind of guy you want on your side.

  • Cindy started off the meeting thanking the aides for Senator Hatch’s support over the years and introduced them to the Bateman Horne Center. She spoke about her service on the IOM committee and the extensive review of the evidence that occurred over 18 months by a panel of clinical and scientific experts. Cindy emphasized how the report served as a roadmap to get ME/CFS into the scientific and medical mainstream.
  • Scott provided prima fascia evidence on the impact of ME/CFS. He told them about his successful career as a private equity broker and how 15 years ago ME/CFS snatched that all away.
  • I told them how many people were sick with ME/CFS and the toll this has on the US economy. We ended by emphasizing the opportunity for medical and scientific discovery there is in ME/CFS. Importantly, Senator Hatch’s office had meetings with other ME/CFS patients and advocates and heard similar stories about the devastation that ME/CFS brings.

Our requests of Senator Hatch were the same as those being advocated for by others in our community, namely reinstate funding to the Centers for Disease Control and move the ME/CFS program to the National Institute of Neurological Diseases and Stroke and appropriate funding commensurate with the burden of disease. Senator Hatch’s aides were attentive, concerned and asked great questions. The asked about the CDC program and we told them that dollars specific for ME/CFS research at CDC had been included in the Appropriations bill since 1990 (Ted Van Zelst made this happen). They asked why having ME/CFS in an institute was better than having in the Office of the Director and we told them that when a disease is part of an Institute mission statement, it is more likely to have dedicated funds to research it.

We are following up with Senator Hatch and will continue to advocate with evidence so that our legislators provide the policies that will help the medical and scientific communities identify the diagnostic markers and effective treatments for ME/CFS. In my next blog I will begin to dive into the details of the ME/CFS research studies the Bateman Horne Center is gearing up for with our rock star science partners. ME/CFS evidence never looked so good!

SDV_signature
Suzanne D Vernon, PhD
Research Czarista, Bateman Horne Center

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BHC is led by Dr. Lucinda Bateman and Suzanne D. Vernon, Ph.D., who together bring more than 40 years of combined experience and leadership to treating patients and advancing research in the areas of ME/CFS and Fibromyalgia. Together with a stellar volunteer leadership team – we are working towards a world where patients with ME/CFS and Fibromyalgia are readily diagnosed, effectively treated, and widely met with empathy and understanding.

The Bateman Horne Center
Empowering Patients, Advancing Research, and Improving Clinical Care
for all those impacted by ME/CFS and Fibromyalgia

Formerly the Fatigue Consultation Clinic (FCC) and the Organization for Fatigue & Fibromyalgia Education & Research (OFFER), the Bateman Horne Center of Excellence (BHC), was formed in 2015 as a 501(c)3 nonprofit organization. Sign up for our blog updates and e-news to stay informed.

By SDVernon

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