Celebrating #MEAction’s State Chapter’s wins

#MEAction State Chapters have been busy both locally and federally to continue the fight for ME & Long COVID recognition and awareness. While the road is long and often times filled with delays and detours, #MEAction State Chapters continue to drive forward and make inroads. #MEAction is beyond grateful and very thankful for the work that they do in their communities. We are excited to share and celebrate their wins with you!

Read below to see what #MEAction State Chapters have accomplished in the first half of the year:

Medical Board of California will be publishing an article (written by #MEAction CA and Dr. Jennifer Curtin of the Clinician Coalition) on ME and Long COVID in their spring newsletter. This will be side-by-side with an interview of Jen M, long-hauler with ME. #MEAction CA, with Dr. Curtin, met with physicians at several of the University of California campuses to discuss ME and Long COVID and urge Univeristy of California schools to treat people with ME. Discussions are ongoing. #MEAction CA had met with the California Department of Public Health (CDPH) in effort to get them to create entry for ME on their diseases and conditions webpage; we have provided draft material; we are still working that issue and soliciting legislators to write supportive letter to CDPH, a couple of whom have agreed. Art Mirin has written revised Centers of Excellence proposal that will be released imminently; it will of course bring in long COVID and be under the auspices of MEAction.

A Tribute to people with ME and people with Long COVID was read on the House floor during #MillionsMissing week. The Governor signed a proclamation again this year declaring May 12th to be ME Awareness Day. We’ve had meetings with senior leadership at the Colorado Department of Healthcare Policy and Finance, and the Colorado Department of Public Health and Environment to discuss forming a Long COVID and ME task force and how to track and identify long haulers. We now have time for support as well as advocacy planning in our monthly meetings. We joined Colorado for Health Progress.

Wilhelmina Jenkins was interviewed along with Ashanti Daniel and 2 long haulers in a report for TIME. Timbre Livesay volunteers with Adriane Tillman for daily outreach to the press. Georgia advocates have sent out over 250 postcards to doctors. #MEAction GA continues to build community with two meetings every month for support and advocacy.

Resolution was read in the Florida State House!

Proclamations completed: ME Awareness Month for State of MD; May 12th ME Awareness Day for Anne Arundel Co, Baltimore City, Baltimore Co, Harford Co, Montgomery Co, Takoma Park City. Additional year one accomplishments.

New York:
#MEAction NY has been working with New York State Assembly Member (and Health Chair) Richard Gottfried’s office and New York State Senator (and Health Chair)
Gustavo Rivera’s office on an important piece of legislation. The bill is an ACT to amend public  health law to include a myalgic encephalomyelitis/chronic fatigue syndrome  education and outreach program. It recently passed the Assembly Health Cmte and activists are working hard to make this dream a reality before the end of the legislative session. This is HUGE!! Read more here!

Also, #MEAction NY is working on a postcard to medical providers campaign, and COVID19 Long Hauler awareness. Senator Brad Hoylman is introducing legislation to create a Long COVID19 registry and #MEAction NY recently had a phone call with that office to talk about adding ME to the registry as a potential co-morbidity. Terri is still trying to get the NYS Health Commissioner’s office to release a letter as part of his monthly letter to over 85k physicians on Long COVID and the connection to ME, etc. This conversation has been happening for over a year. 

In the past few months #MEAction NY has co-sponsored two COVID-19 Long Hauler webinars with the AVAC International COVID19 CAAB. One webinar highlighted the lived experiences of two long haulers. They told their stories and took questions from the audience.  The other webinar highlighted scientific research conducted by Dr. Avi Nath of the NIH and Dr. Mady Hornig of Columbia University. Dr. Nath and Dr. Hornig presented a short powerpoint on their research and took questions from the audience. The CAAB would like to have another one since there was so much interest.  #MEAction NY is also working with Survivor Corps and Savvy Cooperative to host a COVID-19 Long Hauler + ME webinar. Stay tuned! 

#MEAction NY is having more regularly scheduled meetings as a result of bringing on the amazing Lynn Esteban as co-chair of the chapter.

#MEAction Tennessee members were excited to offer support to one another as we participated in Advocacy Day. The first two meetings of the day were handled with just two #MEAction TN members and then we divided and conquered with the three of us handling the rest of the meetings together with support from one advocate in South Carolina for one meeting and one Solve ME employee for the final meeting. It was a great way to get to know one another a bit more and hone our advocacy skills.

#MEAction Texas participated in Advocacy Day including meetings with both Senators Cruz and Cornyn and several House Representative offices.

#MEAction PA chair, Carly Goldberg, held a fundraiser for #MEAction in honor of her birthday and ME Awareness Month. Carly’s family and friends raised $1220 to ensure voices of ME patients, caregivers, and allies continued to be heard!



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