As we enter into 2020, we want to take a moment to recognize all the hard work our State Chapters accomplished in 2019 for myalgic encephalomyelitis (ME).
The tenacity and commitment of our state leaders and members is awe-inspiring. #MEAction Colorado introduced a resolution for ME before the Rotary Club that got passed locally and at the district level before being turned down internationally. #MEAction Georgia held an “Improv for ME” night. New York State #MEAction member, David Esteban, created a course on ME to be taught at Vassar College where he teaches.
#MEAction Arizona achieved bi-partisan support from two Republicans and two Democrats in Congress for Resolution 399 that affirms the U.S. commitment to ME/CFS research and clinical care. The #MEAction Florida folks who advocated in Washington, D.C. for ME/CFS Advocacy Day last April continued working together throughout the year to build legislative support for ME/CFS in Congress.
#MEAction California is working to gain state legislative support for a created Centers of Excellence program for ME in California, which would involve training specialists, clinical care, and closely coupled research. #MEAction CA has met with roughly 24 state legislative offices to build support for this program.
#MEAction State Chapters covered new territory and made sure their communities felt connected and supported throughout the year. Read the full highlights from six of our State Chapters:
Colorado had an active year. We expanded our community support by growing our Facebook group to 180 members and started two support groups, one for people with ME and one for caregivers. We have monthly planning meetings, launched a newsletter which can be found at meactionco.net, and organized along the State Charter guidelines with 5 people on our steering committee.
We had several major advocacy pushes, including being on local TV the night before we participated in the Women’s March, a screening of Unrest, and our second annual #MillionsMissing at the state capitol building.
One of our members introduced a resolution to his Rotary Club and helped steer it to a vote at Rotary International, which unfortunately voted it and most other resolutions down.
During Advocacy Day in Washington, DC, four people represented Colorado and we had meetings in all our Congress offices except one, and met with Representative Crow in person. Our Senators both contacted the Appropriations committees on our behalf. We had representatives who contacted the committee also, posted on Twitter on MEAwareness Day, and have had two co-sponsors of the House Resolution.
We’ve worked this year at deepening our connection to allied groups. At #MillionsMissing, we had speakers from the Invisible Disease Association (IDA), Don’t Punish Pain, and had a couple ME expert doctors speak. We had a table at the IDA Awards Gala where Jen Brea was awarded their Media Impact Award, and the trailer to Unrest was shown to hundreds of disability advocates. We are members of Colorado’s Chronic Care Coalition and Center for Health Progress to collectively work for improved health care in Colorado. We had someone attend Chronic Care Coalition’s day of disability advocacy in the Colorado state legislature.
In 2019, #MEAction Georgia focused our energies on grassroots efforts. Jes Gordon and family led the way, hosting an “Improv for ME” event to raise funding, awareness and spirits. She also organized an educational/art event at her son’s high school. His art class created pieces to visually represent the ME experience. These projects were proudly on display at one of Georgia’s two #MillionsMissing events. Jes’s son, Everett, also filmed and edited an interview-based project, “How ME has affected my family,” featuring several #MEAction GA members.
Wilhelmina Jenkins published two #MEAction essays and appeared on the Canary podcast, all exploring different aspects of diversity in ME advocacy. She also provided historical perspective on ME in a Facebook Live event and in a text interview recognizing her as #MEAction’s Volunteer of the Month for September 2019. Elizabeth Burlingame educated healthcare providers one-on-one in several Walk-with-a-Doc events throughout the fall with plans to recruit more allies to participate in the spring. She also attended a Statewide Independent Living Council event, linking #MEAction GA with other advocates and disability programs.
GA advocates, too unwell to travel this year, arranged for a proxy to meet with Congressional representatives during ME/CFS Advocacy Day.
#MEAction GA continued to host monthly support and advocacy calls, and maintained an active social media presence on Facebook, Instagram and Twitter. This year, GA advocates created several Facebook fundraisers raising over $4000.
This year, Dr. Nancy Klimas, director of the Institute for Neuro-Immune Medicine (INIM), which focuses on ME/CFS research, helped spread awareness in Sarasota when she met with Florida State Representative, Margaret Good, and gave a Grand Rounds presentation at Sarasota Memorial Hospital in April!
Dr. Nancy Klimas, director of the Institute for Neuro-Immune Medicine (INIM), which focuses on ME/CFS research, helped spread awareness in Sarasota when she met with Florida State Representative, Margaret Good,
Collaborations between INIM and the Florida group are ongoing, and we hope to build on our successes in 2020. The dedicated political advocacy team that met in Washington, D.C. stayed together and met all throughout the year! They conquered challenging preparatory work for legislation that will help support INIM and ME/CFS in 2020. (A big thank you for the ongoing enthusiasm of the political advocacy team, and thank you to everyone in Florida who submitted your district information!)
Florida now has a small ‘Medical Education’ group which continues to meet regularly, brainstorming a path for Florida-wide outreach. They are in the research phase for outreach to the Florida Medical Association and other groups in 2020. (A big thank you to that group for the energy that takes!)
Floridians also sent thousands of postcards to our doctors and others, and hosted a great #MillionsMissing demonstration in Orlando. There are big plans for multiple Florida rallies in 2020!
Approximately 50 people attended #MillionsMissing 2019 at Central Park. We had speakers and passed out information about ME to people coming in and out of the park. We also conducted #MillionsMissing medical outreach (had signs and passed out literature) at the New York Academy of Medicine during the same week.
A few members of NY #MEAction attended the two-day NIH conference on ME/CFS. Terri Wilder gave closing remarks on Day 1 of the conference focusing on the reality of ME-related stigma and how it impacts our lives. She also served on the conference planning committee.
NY #MEAction met with New York State Senator Rivera (Health Chair of NYS Senate) office to discuss legislation and funding for ME.
NY #MEAction member Lynn Esteban spoke at a public hearing regarding the New York Health Act. She told her story about living with ME and the challenges of getting insurance to pay for her care. After she gave her testimony, the crowd broke out in applause! Afterwards, her own NY Senator came up to her to talk, and a reporter quoted her story, another reporter wrote about it. Additionally, several people tweeted about her testimony, including New York State Senator Health Chair Senator Rivera! It was an overwhelmingly positive situation for our community.
NY MEAction member Eddie reached out to his congressional representative, and they signed onto the House Resolution in recognition of ME.
We have seen an increase in members joining our NY #MEAction facebook page this year.
The New York State Department of Health AIDS Institute Clinical Education Initiative (CEI) posted about ME awareness day on its Facebook page. CEI trains medical providers across New York State.
NY #MEAction member Terri Wilder secured funding so that a few medical students and medical providers could receive scholarships to attend the NIH 2-day conference.
NYS Senator Brad Hoylman posted about ME awareness day on his social media. This was his post: “We need more research, better care, & better treatments for New Yorkers suffering from myalgic encephalomyelitis (ME). When patients speak together, they have power — and New Yorkers with ME are building that power today.”
NYS #MEAction member David Esteban created a course on ME to be taught at Vassar where he teaches.
In 2019, #MEAction Arizona hosted our annual #MillionsMissing event in Tucson, featuring speakers from within our community, local musicians, stand-up comedians, city & state government representatives, artists hosting our silent auction, and booths where attendees participated in current petitions.
We are also celebrating our ongoing congressional advocacy. Throughout 2019, we contacted our representatives in the House to support HRes 399. Our emails, phone calls, and face-to-face meetings resulted in bi-partisan support for ME awareness, from two Republicans and two democrats! Representatives Kirkpatrick, Lesko, Schweikert, and Stanton signed on as co-sponsors.
#MEAction California had a busy year and a new group. Beverly Weiss and Art Mirin were very busy as state advocacy chairs all year long. Art created a plan for a Centers of Excellence program in California, which would involve the training of specialists, clinical care, and closely coupled research. #MEAction CA has met with roughly 24 state legislative offices and are gaining support. Many different members of #MEAction CA and allies have taken the time to get in contact and take meetings with their local offices.
In both Northern and Southern CA, #MEAction California members spoke at the University of California Regents meetings (the board that oversees the University of Californias), gaining more and more attention and advocating for concrete action at all UC schools for ME. Showing up meeting after meeting can be trying but we are very grateful for everyone who speaks!
Small events took place across CA and members meet virtually for meetings. There was a small but mighty postcards to doctors party in CA, sending postcards to hundreds of doctors to take the CME on ME.
We hope that CA will grow to have more and more events and activists state-wide!
#MEAction started with the purpose of uniting the community to take action for ME across the United States, and that is just what our State Chapters have done through the past few years. We are excited to see what they can accomplish in this new year!