Millions Missing 2023: Virtual Event

We were honored to have two amazing speakers this year. Billy Hanlon, Director of Advocacy for the Minnesota ME/CFS Alliance opened the event with an advocacy update in Minnesota.

(14:04) Terri Wilder, Chair, ME Action MN shared her personal journey with ME/CFS. When she was first diagnosed, she was scared about what this diagnosis meant for her. Then a colleague connected her with ME Action and the brilliant team in place at that organization. Fighting for marginalized communities and persons with ME/CFS is one of her passions. She says, “I’m fighting for you.” She is fighting to make the state of MN recognize that people with ME are part of our community. We need resources free of stigma and discrimination. She informed us about her ME Action MN meetings each month and explained that all are welcome to join. Terri asked us, “Why is local activism so important?” She stated that local activism is important as it is where we live, where we are sick and where we can have a better quality of life. She reminded us, “The power of collective action is extraordinary. When we come together as a community, united in our mission for change, we become a force to be reckoned with. Each and every one of you has the power to make a difference. Imagine a future where persons with ME are no longer dismissed, set aside, left to suffer in silence.” Listen below to Terri’s powerful words.

https://www.dropbox.com/s/shef29bajq1nkvu/Millions%20Missing%20Minnesota.mp4?dl=0

Dr. Stephanie Grach, MAYO Clinic (29:13) We are honored to have Dr. Stephanie Grach speak to us today about her journey into Fibromyalgia, Long COVID & ME/CFS patient care. She admitted that there was little education about these illnesses in medical school and she told a story about her first encounter with a Fibromyalgia patient. The “hidden curriculum” is notoriously powerful (and not in a good way) but you rotate with different providers with different styles. When she saw a diagnosis of Fibromyalgia, it became automatic dread because you knew they were in constant pain and thought there was nothing one could do to help. Hearing another attendee tell her that there was nothing to do was difficult. This meeting with a patient was different though as the attending discussed promising treatment options and established therapies. It sparked an interest in her to learn more about treatment options for this illness. The attendee was from the department of General Internal Medicine (GIM) and GIM houses the consultative medicine clinic which is often the starting point for patients who need help to diagnose rare diseases and the Integrative Medicine Clinic which includes clinics for Fibromyalgia, ME/CFS & POTS. Dr. Grach stated that she was fortunate to get specialized training for ME/CFS from the Bateman Horne Center and we are fortunate to have herexpertise in our community. To get evaluated, submit a request online but if you are coming from outside of Mayo, one generally needs to be seen by a general internist first.