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A Entire State Goes “M.E.” in Congressional Breakthrough

September 13, 2017

Nevada Goes “M.E.”

An entire state goes “ME”. That’s never happened before. Courtney Miller of Simmaron, Emily Taylor of the Solve ME/CFS Initiative, MEAction and the USAWG worked together to enroll the entire Nevada Congressional delegation to put its total support behind increased funding for ME/CFS.

This is notable not just because it’s never been done before, but because for years patients in Northern Nevada sought help from Congressman Amodei and Senator Heller with little success. This is the story of persistence and success. Hopefully we’ll be seeing more of this as the attitude towards chronic fatigue syndrome (ME/CFS) shifts.

Courtney and Bob Miller have been advocating for ME/CFS for many years, but when Emily came up with the rather audacious plan to get the entire state delegation on board, they were energized.

Persistence Works

After the elections in Nevada, Courtney Miller and a group of patients recommitted to taking a sustained approach. Not willing to let the decisions of the past stop them, Courtney met the staff of the Congressman and her Senators after the Women’s March in Washington. At that point Amodei got interested in ways to improve the federal agencies’ response to the disease.

Then in a Spring Town Hall meeting Courtney got up to the microphone and publicly asked Sen. Catherine Cortez Masto for her support. With that Sen. Catherine Cortez Masto’s staff got involved and she joined the effort.

Next during the first Lobby Day in ten years (thanks to SolveME/CFS and MEAction) some patients from Nevada met with Cong. Amodei himself and the Senators. Emily, Sonya, Courtney and others created a draft delegation letter (see attachment). In June Courtney returned to DC and visited the office of every member of the NV delegation. This time the response was enthusiastic; Congressman Amodei agreed to sponsor the letter and set a deadline.

Finally, last week Emily from Solve ME/CFS Initiative and Courtney hit the phones, Anita – the go to person for patients in Incline Village – urged Nevada patients to send emails, and Emily set up a Solve ME/CFS Nevada action alert so that more Nevadans could urge their reps to sign on. (The SMCI has an automated and easy way to contact our reps.) By Friday, the entire Nevada delegation agreed to push Director Collins for more funding.

The State Delegation Game

The game now is to get entire state delegations to sign on. Obviously it’s going to be harder with bigger states (although in conversation Emily mentioned the “big apple”). Besides everything else, getting everyone in a state delegation on board is a great game to play. It sends a powerful message when an entire delegation comes together like that.

I asked Emily what was next.

Who’s next? Now that Nevada has proven it can be done, who’s next? If you want to your state to be the next to go all “ME” email Emily Taylor at ETaylor@solvecfs.org and let her know.

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5 Comments

  • Johanna Elik

    October 7, 2017 at 7:21 pm - Reply

    I live in the state of Virginia where there are no ME/CFS specialists, even at the University of Virginia in Charlottesville. a large teaching hospital with a reputation of the finest in the state.

    My continuing struggles to be heard, for respectful treatment by physicians and other health care providers is constant. This debilitating disease has taken my life, my good health from me. As a trained holistic health practitioner, I have over the course of this illness(8 years), tried everything, holistic treatments, supplements, nutrition, meditation,self-healing techniques. I have only gotten progressively sicker and more incapacitated.

    I cannot, on fixed income, without family to help go to centers out of state for integrative therapies. I continue to connect with online ME/CFS groups, read the research and seek for help. My experiences with physicians has been horrific, unbelievable to be treated so badly while so ill is unconscionable. Please help all of us.

    Thank you.
    Johanna Elik
    Luray, VA

    • Cort Johnson

      October 8, 2017 at 5:24 pm - Reply

      Heartbreaking stuff Johanna – and all too common. I think these advocacy efforts will pay just because of stories like yours; the losses are too great to continue to be ignored forever.

    • Alex

      October 18, 2017 at 2:39 pm - Reply

      I live in Boston. I told my pediatrician for years that my daughter was not well–too many infections, too tired, can’t focus, on and on and on. I even told him she had CFS. He said, “that’s a disease for 40 year old women.” THIS IS BOSTON-followed by a BCH physician!!! The “best of the best.” I begged him for bloodwork. He kept telling me she’s depressed. They wanted to admit her to a mental hospital (we did not). The drugs had side affects. Why? Because this is the wrong course of treatment! Finally, I lost my temper and told him to run a bleepin autoimmune profile. He ran one. The postive ANA result got me to the rhuematologist, who said “well she has ME/CFS–pretty obvious.” Now they tell me to have her do exercise and CBT. Ya, like that works. The doctors do not prepare you for what this disease really means. Try explaining to a school that your kid has CFS. The stigma is awful. Thankfully, my school officials became educated and have done everything they can. Most schools are not so great. And, thank goodness for support from the community and recent funding for research. All of us dealing with this insidious disease have similar tales of woe. We are not alone.

      • Cort Johnson

        October 18, 2017 at 9:43 pm - Reply

        Wow….It is indeed the dark ages. Thanks for sharing your story. That’s why we’re fighting….

      • deboruth

        October 28, 2017 at 12:26 am - Reply

        Gee whiz Alex, you’re in Boston! Fire your pediatrician. People need to fire their pediatricians more often. I would have died at 8 if my parents had not fired the pediatrician and switched me to an adult doctor who was a dedicated physician. Get in touch with MassCfids group. Wish I had the contact handy, but I’m sure Google will get you there. Charmian has been a key figure there. Write to Dr. Komaroff, recently retired from Brigham, to see who might have picked up his flag. I know there’s a woman specialist in Boston, but have forgotten her name. Get going. And stay away from Boston Children’s. I say so because of the nightmare story of a girl whose last name is Pelletier. Great coverage in the Boston Globe a few years back. Take out a sub to the Globe, a great newspaper, to keep up with goings on in Boston area medicine.

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