#MEAction State Chapters have been busy this year working to expand awareness, build support for House Bill H.R. 7057, and contribute to the Stop. Rest. and Pace. campaign, and provide much needed support to their communities during this unpredictable time. We are excited to share what they have been working on and remind those reading or listening to this article that these volunteers are fighting all year long.
Here are some highlights of what our State Groups have been up to!
#MEAction California had a very successful meeting with the Surgeon General of California, where they asked for information about ME to be added to their website. So far this State Chapter team has met roughly 30 representatives with the hope of ME legislation will be enacted. #MEAction California met with University of California officials and physicians to discuss their treatment of people with ME and asked them to include ME in their medical school curricula.
#MEAction Georgia continues to build their community with 2 monthly meetings that focus on Advocacy and Support. A member of #MEAction Georgia, Wilhelmina Jenkins, continues her decades of advocacy by representing #MEAction at the NIH Working Group meeting in August and she participated with the #MEAction team during a call with the CDC in October. Another member of the #MEAction Georgia, Timbre Livesay, has been providing valuable support with #MEAction’s press outreach and educational work. In regards to H.R. 7057, #MEAction Georgia, advocates have spoken by phone with representatives in 8 GA congressional districts. #MEAction Georgia member, Liz Burlingame, can be seen in the powerful video for Stop. Rest. Pace.
#MEAction Tennessee is preparing to do a Postcards for Doctors party when we relaunch the program this fall! We can’t wait to see the latest postcards! The announcement for this will be soon! Read all about last year’s success here!
#MEAction New York
#MEAction New York co-sponsored an impactful CME event w/ Mt. Sinai, and NYS DOH Clinical Education Initiativeon September 30th, which featured Dr. Kaufman. It is now online at www.ceitraining.org. Coming this month, #MEAction New York State Chapter Leader, Terri Wilder, worked with the NYS DOH AIDS Institute Office of the Medical Director to produce a ME scientific webinar and additionally worked with the National Black Leadership on Health to produce a webinar about COVID-19 Long Haulers. And we can’t forget that Terri Wilder was the one who got Dr. Fauci to discuss the relationship between COVID-19 and ME and was interviewed by Ed Yong of The Atlantic in an article about COVID-19 Long Haulers.
#MEAction Florida has been busy working with Dr. Nancy Klimas to support research, legislation and clinic needs. Working with a local physician with so much experience, like Dr. Klimas, is an opportunity to have a lasting impact! On the federal level, #MEAction Florida has been rocking congressional advocacy for H.R.7057, with the most cosponsors of any state, including one of the few Republicans cosponsors! And on the state level, #MEAction Florida is looking to have a state resolution.
#MEAction Arizona has been very busy working to gain co-signers of H.R. 7057. They currently have more than half of Arizona Representatives as co-sponsors! #MEAction Arizona is also working on an effort to get the Arizona Department of Health to send a letter to all Arizona medical providers about COVID-19 and ME and ask for them to create a ME/CFS webpage (this follows the similar model done within New York).
#MEAction Texas has an engaged Facebook page and are working on various initiatives where they are able!
Welcome to our newest chapter! They are already busy planning an Unrest Screening and a congressional event. #MEAction co-chair, Melinda Lipscomb was a part of the launch video for the Stop. Rest. Pace campaign! We are thrilled this new chapter is already working on so much.
#MEAction Colorado will be launching a new support fund soon! We will be updating you shortly on the details. They remain focused on compassionately supporting individuals locally. On the state advocacy side, #MEAction Colorado held a town hall with a State House Candidate to discuss ME and lack of awareness within the Colorado medical system.
While we have official state chapters, we also have Facebook Groups in all 50 states! You can find your #MEAction State Facebook Group here.
One amazing local advocacy highlight we would like to share is from Alaska:
A few members of the #MEAction’s Alaska Facebook Group had a fantastic phone call with Senator Lisa Murkowski, Alaska’s senior Senator. Senator Murkowski was incredibly interested and concerned to hear about the millions of Americans — including thousands of Alaskans — disabled by the severe neuro-immune disease ME/CFS, as well as the millions more Americans — again, including thousands of Alaskans — suffering prolonged symptoms from COVID-19.
Thank you to our wonderful state chapters and groups! Thank you for doing all you do in the fight for equity for all people with ME!
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the