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
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!
Episode 9: The Pillow Writers
The Pillow Writers are an international ME/CFS writing group. They are a very friendly online group that meets to share thoughts and feelings on any topic, including, but not limited to, experience of chronic illness. They encourage a wide range of writing and have several different types of meeting each with a different emphasis. Meetings take place on Sundays, Mondays, Thursdays and Wednesdays. Click here for more details.
Steven and Jaime sit down with Pillow Writers, Bobbi Ausubel, Ann Greenberger, and Laila Solaris to discuss the group’s first anthology, Near-Life Experiences. This episode also includes readings by the guests, information on how to get involved with the group, their process as writers, and so much more.
Pillow Writers Anthology 1: Near-Life Experiences is available now at Amazon in e-book, print, and audiobook formats. All proceeds from the sale of this book go to #MEAction.
Free Giveaway!
One lucky winner will receive a free paperback copy of the book (limited to US, UK, Germany, France, Japan, Canada, and Italy), and another winner will receive a free copy of the audiobook (limited to US & UK).
To enter:
- Listen to the episode
- Email [email protected] by December 15th with “Pillow Writers Giveaway” as the subject heading.
- Please indicate whether you’d prefer the audiobook, paperback, or either version.
- Please include your name, and if your preference is for the paperback, please list your home address as well so we can have it delivered to the winner.
PAST EPISODES
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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 Halflife, The Long Goodbye, Once, Sun in Days, and most recently, she’s put out her brand new book, The Invisible Kingdom: Reimagining Chronic Illness. Steven and Jaime discuss her latest book as well as her experience as a mother and accomplished writer living with chronic illness.
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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 @fi_lowenstein.
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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.
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#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.
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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!
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Steven and Jaime sit down with #MEAction’s executive director, Laurie Jones, as the end-of-year fundraiser winds down to a close. Laurie has years of experience working in non-profits and in the arts. Prior to joining the #MEAction team, Laurie was the Director of Impact for Unrest, using the film to educate and advocate for those in the ME community. She has served as Programs Director at Brave New Films, worked on the Why Poverty? film campaign and fundraised for United Way of Metropolitan Chicago. She has a BA in Production Studies in Performing Arts from Clemson University, and an MA in Applied Human Rights from the University of York. If you’d like to donate to #MEAction, you can do so here.
As was mentioned in the episode, you can sign up for the Chronic Illness Survey Adventure here.
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David Tuller obtained his Doctorate in public health from UC Berkeley. He is a senior fellow in public health and journalism at UC Berkeley’s Center for Global Public Health. He was a reporter and editor for ten years at The San Francisco Chronicle, and served as health editor at Salon. He has also written articles about public health and medical issues for The New York Times and the policy journal Health Affairs. Since 2015, he has been investigating scientific, methodological, and ethical problems with research on myalgic encephalomyelitis/chronic fatigue syndrome. His ongoing series on this issue, Trial By Error, can be found on Virology Blog, the science site hosted by Vincent Racaniello, a microbiology professor at Columbia University. This episode concludes season one of Chronically Complex. We’ll be off in the month of February while we make some improvements to the show. If you have any suggestions you’d like us to consider, send us an email at [email protected]. We look forward to continuing the conversation in March!
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Cynthia Adinig is a marketing specialist turned Long COVID advocate. She is the co-founder of BIPOC Equity Agency which is a diversity, equity, and inclusion agency with a focus on healthcare, policy, and research. She is a board member of SolveME, and a steering member of the Long COVID Alliance. She has testified on Capitol Hill on Long COVID and racism, and has been featured in TIME, The Washington Post, USA Today, and NBC News among others. Cynthia discusses her journey with Long COVID, her life in advocacy, and the work she’s doing with BIPOC Equity Agency.
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!