Welcome to the MEAction Florida group! We’ve been an active and growing group for a little over two years, with upwards of 200 members. We are here for support and advocacy alike.
For new members: please know that we are one of the few lucky states to have a ME/cfs specialist right in our backyard: the Institute of Neuroimmune Medicine (INIM) in Davie, ran by Dr. Nancy Klimas. Unfortunately, it is hard to get on their waiting list. In fact, one of our major advocacy efforts will be to find the funding necessary to open an additional facility to support our Florida’s needs.
A note from Laura Bucholtz, the Florida State Chair: “I am a graphic designer living in Sarasota with my son and husband. My husband has had moderate ME/cfs since 2013. When I finally understood what this disease really was (by stumbling upon Jen Brea’s TedTalk!), I happily took the reigns for action in Florida. I love this group. It makes me feel less isolated just knowing you all are here. I gladly dedicate all my extra band-width to figuring out how to make Florida a better place for patients with ME/cfs. I just wish I didn’t have to work for a living! No matter your level of involvement, I’m so happy you’re here! I hope you find some support in the group, as well as great ways to advocate for health equality for ME/cfs. There is strength in numbers! Welcome to the group!”
In 2018 and 2019 we hosted a large Millions Missing in Orlando and next year we hope to host more! Since our last Millions Missing, we’ve been sending Unrest postcards to our Senators (Marco Rubio and Rick Scott) as well as to our doctors! They help keep our group at the top of their mind, and we will eventually wear them down! This year we’ve gotten a few (Florida specific) legislative projects rolling with a small and dedicated political advocacy team. The team is focusing on two measures that have been successfully passed in Nevada. One is a letter to the NIH from our federal level congressman. The other is on a state level, where we’re researching how to get ME/cfs clinical trials covered by insurance (which will incentivize ME/cfs research in our state).
We are also in the process of helping Dr. Klimas at INIM find funding for a second facility. This is a difficult undertaking that will be, at best, years in the making, but we are pouring our hearts into it.
A small ‘Medical Education’ team has just begun meeting, too, and we’re probing at different strategies for how best to reach the widest number of doctors across Florida.
If you’d like to join in any efforts, or have any ideas for other advocacy projects, please reach out to firstname.lastname@example.org
Check our Facebook group for in-person and online support group meetings:
Southeast: Monthly Broward CFS/ME/FM Empowerment Group (Contact: Dawn Holt)
N Orlando: Sporadic in-person support meetings (Contact: Anita Nimmo)
Online: Sporadic group video chat for newcomers