| As part of Advocacy Week 2024, our EmPOWER M.E. roundtable on April 19 at 9 am PT / 12 pm ET will feature panels of patient advocates, professionals, and scientists who share their expertise on topics relevant to the quality of life for people with ME/CFS, Long Covid, and their caregivers. The EmPOWER M.E. topic this year is “How to Build and Work with Your Care Team.”
Susannah Fox, author of Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care (MIT Press, 2024), will be the keynote speaker. In Rebel Health, Fox draws on twenty years of tracking the expert networks of patients, survivors, and caregivers who have come of age between the cracks of the healthcare system to offer a way forward. Panelists Include: Ashanti Daniel, Registered Nurse, Chronic Illness Advocate Dale Bolger, Clinical Social Worker/Therapist Amy Mooney, Occupational Therapist Sanna Stella, Behavioral Health Specialist Emily Taylor, Solve M.E. President and CEO
Event Agenda: 9:00 am PT/12:00 pm ET – EmPOWER M.E. Main Session 10:30 am PT/1:30 pm ET – 30-minute Break 11:00 am PT/2:00 pm ET – Panel 1 – What it’s like to be part of a care team (Care Team Perspective) 11:45 am PT/2:45 pm ET – 15-minute Break 12:00 pm PT/3:00 pm ET – Panel 2 – How to work with your care team (Patient & Caregiver Perspective) 12:45 pm PT/3:45 pm ET – End of event
Pre-registration is required. Register here for EmPower M.E. on April 19! Learn more about Advocacy Week 2024 here. |
Susannah Fox (Keynote Speaker)
Susannah Fox, the author of Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care (MIT Press, 2024), helps people navigate health and technology. She served as Chief Technology Officer for the US Department of Health and Human Services, where she led an open data and innovation lab. Prior to that, she was the entrepreneur-in-residence at the Robert Wood Johnson Foundation and directed the health portfolio at the Pew Research Center’s Internet Project.
Ashanti Daniel
Ashanti Daniel, BSN, RN has been an advocate with several chronic illness non-profit organizations, and has shared her story in their events, the national press, and to congress. Ashanti is a Black woman, a disabled RN, and single mother living with ME in Southern California. She speaks powerfully not just to what it is to live with a chronic illness like ME, but what it is like to try to get appropriate care as a Black woman navigating the structural racism of our health care system. Furthermore, Ashanti recently spoke at an ME Conference held at the National Institutes of Health (NIH). As a former healthcare professional and patient advocate, Ashanti has been educating women of color about ME/CFS and Long COVID—while working to secure recognition and better research as well as care for patients.
Amy Mooney
Amy is a private practice Occupational Therapist (OT) who specializes in providing therapeutic care via telehealth to individuals with chronic conditions involving post-exertional malaise/post exertion symptom exacerbation (PEM/PESE). Amy’s Pacing for PEM guidelines and therapeutic strategies have been featured presentations at national and international conferences, continuing education programs for medical professionals, and patient advocacy webinars. As caregiver for a loved one with ME/CFS, Amy understands first-hand the challenges individuals and families experience seeking appropriate care. Amy has a bachelor’s degree from Loyola University Chicago, a master’s degree in occupational therapy from Rush University Chicago and is a returned Peace Corp volunteer. Amy calls Chicago home.
Dale Bolger
As an openly polyamorous-queer-gender nonconforming person, they’ve spent most of their life experiencing microaggressions & unlearning the cisnormative & hetronormative messages that they feel constantly tell us we are defective, broken, or unwanted. They believe that we are all “fabulous, vibrant & deserving, of all the gifts the world has to offer.” They became a therapist to share what they’ve learned, bring healing, & advocate for queer/trans youth, young adults & their families while working for social justice & full inclusion into society. They pride themselves in providing a safe, affirming space so everyone can collaborate to create & implement a road map to recovery.
Sanna Stella
I was diagnosed with a bacterial bronchitis in 2014, which turned into debilitating fatigue within one month and led to seeing all kinds of specialists at Northwestern Memorial Hospital in Chicago. I was unusually lucky to get a diagnosis after five months since my internist presented my case at a conference where they consulted each other on their puzzling medical cases, and a retired rheumatologist diagnosed it as ME/CFS, though the hospital could provide no treatments of course. Since I then moved to Germany for a year, I was able to see another internist there who was mentored by the first physician to write a book about CFS in Germany. After returning to Chicago, I started to see a primary care physician who would prescribe LDN off-label since I wanted to continue that after starting it in Germany. I tried various supplements, IV ozone therapy, and participated in five clinical studies at Stanford University, DePaul University, and the post-infectious intramural NIH study. Over the last 9 years I slowly but steadily improved, completed two online degrees mostly reclined in bed or on the sofa, and am now able to work full-time as a therapist in Chicago. My husband and I are empty-nesters since the fall after raising our three children, who were between 9 through 13 when I got sick and are now between 19 and 23 years old.
Emily Taylor
Emily Taylor brings over two decades of unwavering commitment and expertise to her role as CEO of Solve M.E. With a career deeply rooted in health policy, grassroots advocacy, and community empowerment, Emily has dedicated herself to advancing medical research and patient voices in the realm of ME/CFS, Long Covid, and other infection-associated chronic conditions and illnesses.
A key member of Solve’s leadership team since 2016, most recently as Vice President of Advocacy and Engagement, Emily has been instrumental in driving impactful change, including the publication of pivotal white papers, advocating for increased NIH research funding, and successfully securing $1.25 billion for Long Covid research. She serves as a policy and advocacy advisor, fostering critical partnerships with Members of Congress and federal agencies to amplify the voice of those with ME/CFS, Long Covid, and infection-associated chronic conditions on Capitol Hill.
