A Entire State Goes "M.E." in Congressional Breakthrough


Founder of Health Rising and Phoenix Rising
Staff member
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.

Sigs 1 Nevada.JPG
[/fright]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.

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[/fright] 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

[/fright]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.
Next steps are to repeat the process with our strong leads in other states and build up to bigger state delegations. A state delegation letter means a single letter sent from every member of congress (senators and representatives) from that state.

We are truly fortunate to have so many strong advocates leading the charge and dedicated partners coming together with this strategy. I am really excited about this tactic because it effectively leverages the relationships we have built in the past year (particularly in the May ME/CFS Advocacy week actions) and it is a strategy that lends itself to our community’s strengths.

Another key advantage of this approach is the consistent pressure it will apply. State delegation letters take time to organize, so a new state delegation letter every couple of months keeps a constant awareness and pressure to act on ME/CFS. I think this is a good way to avoid the “push-crash” cycle we’ve seen in past advocacy efforts.

As for a comment to add – I’d like to send out a special thanks to Courtney and Bob Miller, Anita Patton, Annette Whittemore, and the many Nevadans who took action to make this campaign a success. This was a long-term, team effort. It’s always toughest to be first! Hopefully, we’ll have many more state delegation letters to come. Emily Taylor - SMCI

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.


  • NV Delegation Letter to NIH on ME CFS 090817 (1).pdf
    362.5 KB · Views: 11
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