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.
We're your hosts, Steven Molony and Jaime Seltzer. Steven is an actor, writer, and filmmaker who makes all of #MEAction's videos and provides lots of voiceover as well. He is an ally to people with ME, Long COVID, and other chronic illnesses. Jaime is #MEAction's director of scientific and medical outreach, and she does research at 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.
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.
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 firstname.lastname@example.org. We look forward to continuing the conversation in March!
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: https://www.meaction.net/donate
As was mentioned in the episode, you can sign up for the Chronic Illness Survey Adventure here: https://www.meaction.net/epi
Ryan Prior and The Long Haul
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!
#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.
#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.
Fascinating and timely
We need so much more of this conversation around being chronically ill. Really thought provoking episode! Looking forward to the next one.
Great Podcast for People With ME
As a person with ME, I long for safe spaces that discuss chronic illness with respect, insight and nuance. Chronically Complex hits all the marks. I really appreciate that the hosts and the guest only used the terms “M.E.” and “ME/CFS” instead of the other less fortunate term that is more often used. Jamie and Steven did a great job and I look forward to hearing more in the future.
A great start!
Finally - a podcast devoted to this invisible, unexplained illness! The first episode is a promising start - with a knowledgeable guest and perceptive hosts asking intelligent questions and follow-up. I’ve lived with ME/CFS since 2011 and it’s heartening to know that the CC podcast is working to get the word out. Thank you ME Action!