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If you’re new to myalgic encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome (CFS), we’re here to tell you that you are not alone. There are millions of others like you. At #MEAction, our mission is to advocate for people with ME to raise awareness, educate, and fight for better access, better treatments, and ultimately a cure. Whether you’re new to this disease or you’ve been living with it for decades, there’s something here for you.

Your Hosts

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Steven Molony is an actor, writer, and filmmaker who makes all of #MEAction’s videos in addition to supplying voiceover. He is an ally to people with myalgic encephalomyelitis, Long COVID, and other chronic illnesses. 

Jaime Seltzer is #MEAction’s director of scientific and medical outreach and she does research for Stanford University on ME and other complex chronic diseases. She is a person living with ME, and ME runs in her family with both her mother and sister affected.

We’ll be interviewing some of the most influential voices in ME/CFS and Long COVID, discussing books and articles on complex chronic disease, having candid chats about life with ME, #MillionsMissing and what it means to #StopRestPace, disability activism and advocacy, art and music from disabled artists you love, and so much more.

If you’re looking for an outlet on the road of chronic illness, you’ve come to the right place. This podcast is available on Apple Podcasts, Spotify, Audible, or wherever you prefer to listen to podcasts. If you like what you hear, please leave us a rating and a review as this will help to extend our reach. Thank you, as always, for your support!

Episodes

Episode 1: Meghan O’Rourke and the Invisible Kingdom

#1 Meghan O'Rourke (Square)

Meghan is a graduate of Yale University, a New York Times bestselling author, a poet, essayist, and memoirist. She worked as an editor at The New Yorker, Slate, and The Paris Review. Her work has been featured in The Atlantic, The New York Times, Harvard Radcliffe Institute, The New Yorker, Scientific American, and The Wall Street Journal. Her written works include HalflifeThe Long GoodbyeOnceSun in Days, and most recently, she’s put out her brand new book, The Invisible Kingdom: Reimagining Chronic Illness. We discuss her latest book as well as her experience as a mother and accomplished writer living with chronic illness.

Episode 2: Fiona Lowenstein

#2 Fiona Lowenstein

Fiona is an award-winning independent journalist whose works have been published in The New York Times, Vox, The Guardian, and many other publications. In 2018, they founded Body Politic, a queer feminist wellness collective and events series, which has become a grassroots patient-led health justice organization. Then in 2020, They co-founded Body Politic’s COVID-19 support group which serves over 11,000 COVID-19 patients. Most recently, Fiona embarked on a book project — The Long COVID Survival Guide — now available for pre-order. Follow their incredible work on Instagram and Twitter.

Episode 3: #MillionsMissing 2022

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#MillionsMissing is a global campaign for myalgic encephalomyelitis (ME) health equality. We demonstrate around the world for equitable research funding, clinical trials, medical education and public awareness for ME. With this annual demonstration just around the corner, rather than having one guest, you’ll be hearing from several of the fine people at #MEAction as we prepare for our protest in Washington, DC on September 19th, 2022. In this episode, you’ll be hearing from co-host and Director of Scientific and Medical Outreach Jaime Seltzer, US Advocacy Director Ben HsuBorger, activist and consultant Terri Wilder, Social Media Manager Holly Latham, and Interim Executive Director Laurie Jones.

Episode 4: Mayo Clinic

#4 Mayo Clinic

#MEAction has partnered with the Mayo Clinic to discuss treatment, research, and improved community engagement for people with ME, so for this month’s episode, we sat down with Mayo Clinic doctors Ravindra Ganesh and Stephanie Grach.

Dr. Ganesh serves as the practice chair of Integrative Medicine and Health and Medical Director for the Post COVID Care Clinic, as well as on the General Internal Medicine Research Committee. His research is in Post COVID syndrome, treatment of COVID infection, and fibromyalgia, ME/CFS, and POTS. He is involved in education both as a preceptor for the Mayo Alix School of Medicine and for the Mayo Clinic Internal Medicine residency program, and has extensive experience in continuing medical education.

Dr. Grach is completing her Internal Medicine residency at the Mayo Clinic in Rochester, MN. She joined the Mayo Clinic as a Senior Associate Consultant in the Division of General Internal Medicine in July of 2022. Dr. Grach has a career interest in post-viral diseases and is dedicated to improving clinical, research, and educational aspects surrounding post-viral disease through her work in Mayo’s respective clinics in the General Internal Medicine division.

Still buzzing from last month’s #MillionsMissing protest in Washington, DC? Catch the replay of the event on our Twitter feed. To view the post-protest discussion, click here.

Episode 5: Ryan Prior and The Long Haul

#5 Ryan Prior (Square)

Ryan Prior sits on #MEAction’s board of directors. He is a journalist for CNN, a filmmaker who co-directed the documentary Forgotten Plague, and author of the newly released book, The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers and How They Are Changing Healthcare Forever. He founded the Blue Ribbon Foundation to raise awareness for ME/CFS, and was recognized as ProHealth’s Advocate of the Year in 2014. He is a five-time Stanford Medicine X ePatient Scholar, and in 2021, he was named a Journalist Law School Fellow. We discuss The Long Haul, now available for purchase, and many topics spanning Ryan’s career and life with ME. Want a chance to win a free copy of Ryan’s book? Check our post wherever you follow us on social media to see how to enter the giveaway. Once a winner has been selected, we’ll get in touch and ship a copy to your front door!

Special Thanks to Our Sponsors

Outside In is an evolving force in equitable and transformative storytelling. Through multi-platform theatrical experiences, Outside In produces daring, dynamic, and authentic work that speaks to intersectional communities and amplifies content created by and for underrepresented voices. You can find more information on their website at outsideintheatre.org, or follow them on social media at @OutsideInTHTR.

The Goodman Center is devoted to helping your organization reach more people with more impact. Known for their workshops in storytelling, presenting, and strategic communications, they’ve been helping good causes large and small since 1998. #MEAction had the pleasure of working with The Goodman Center for our #MillionsMissing 2022 storytelling campaign and we know the value of their work firsthand. Check them out at thegoodmancenter.com.

Get in Touch

Do you have a guest you’d like to suggest we invite on the podcast? We’d love to hear from you! Your contribution will help us to continue the work we do here at #MEAction, and we will advertise your business on the podcast, social media, and here on our site. Drop us a line below, and we will get back to you with more details!

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