The Story Behind “Life with a Low Battery: Living with ME/CFS”
The Story Behind “Life with a Low Battery: Living with ME/CFS”I am thrilled to announce the release of our latest educational video, Life with a Low Battery: Living with ME/CFS. This video was created not just to educate, but to amplify the voices of those living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID, and to help patients convey what it’s truly like to navigate life with a low energy supply. It’s intended as a tool to share with loved ones, friends, care partners, and other support networks—giving voice to the often invisible struggles of ME/CFS while helping those around them understand the complexities of energy conservation and pacing.
This project holds a deep personal significance for me. My journey into ME/CFS education began with my sister’s experience with the illness. Looking back, I wish we had understood the importance of not pushing beyond limits and of “closing down apps” whenever possible. That’s why, when Dr. Lucinda Bateman, the founder and Chief Medical Officer of the Bateman Horne Center (BHC), entered my life, I knew I had to help share her invaluable wisdom. Dr. Bateman has been more than just a mentor—she’s been a tireless advocate and an exceptional teacher, guiding both clinicians and patients. Like Mito, the character in the video, she has taught so many how to live with this illness. (And if you catch a glimpse of Mito’s socks, they’re a fun nod to Dr. Bateman’s signature “crazy socks”!)
It is now my privilege to lead educational initiatives at BHC, and this video is part of a broader mission to help patients and their families better understand and navigate the daily challenges of living with ME/CFS and Long COVID.
Why This Video?
One of the most debilitating symptoms of ME/CFS is post-exertional malaise (PEM). Even minor activities can trigger a significant worsening of symptoms and decreased function, making energy management critical for anyone living with this illness.
An analogy that resonates deeply with many patients is comparing the body’s systems to apps running on a smartphone. In a healthy body, much like a phone, you expect your battery to recharge after rest. But for someone with ME/CFS, the battery is constantly running low, and rest doesn’t fully replenish it.
Everyday activities—whether it’s walking, thinking, or even digesting food—drain energy. Patients must make difficult decisions about which “apps” or activities to run and which to close to conserve energy for the essentials. Life with a Low Battery: Living with ME/CFS brings this analogy to life, helping patients visualize their energy use and identify areas in their lives where they can “close down” unnecessary apps.
This video aims to give patients a voice to share with their loved ones what it’s like to manage their energy to reduce the frequency and severity of PEM.
A Tool for Patients and Their Support Networks
Living with ME/CFS is unpredictable. PEM doesn’t always follow a pattern, and what works to avoid it one week may not work the next. This video encourages patients and their support networks to adapt and be flexible, recognizing that conserving energy is key to managing life with this condition.
For patients, this means finding ways to “close” certain apps or activities so they can spend energy on the tasks that matter most—whether it’s sharing time with loved ones, reading a nourishing book, or simply eating and showering.
We hope this video will not only offer a new way to understand your body’s energy limitations but also help your loved ones provide the support you need. If this message resonates with you, I encourage you to share it and continue supporting our mission to provide education and resources for those living with ME/CFS and Long COVID.
Video Accommodations Life with a Low Battery: Living with ME/CFS
We appreciate your feedback and have created a few versions of Life with a Low Battery: Living with ME/CFS to accommodate the sensory needs of our community. On the homepage of our website you will find links to the following:
- A transcript for those who prefer to only read the content
- A version that has dialogue audio only
- A low sensory video with muted colors and no background music
- One with full color and no background music
- And finally, a full sensory version that includes full color and background music. This is one you may want to share with people in your life who do not have sensory sensitivities because it is the most engaging version.
You can find links to all of these in the YouTube descriptions and on the homepage at batemanhornecenter.org. Help make ME/CFS common knowledge by liking and sharing!
I want to extend my heartfelt thanks to everyone who worked tirelessly behind the scenes to help bring this video to life. Your dedication, creativity, and passion have made this project possible, and I am deeply grateful for your contributions. A special thank you as well to the Open Medicine Foundation and the Whittemore Peterson Institute for their unwavering support. Your commitment to advancing education and research has been invaluable, and this resource would not have been possible without you.
Together, we’ve created something that I hope will make a lasting difference in the lives of those living with ME/CFS and Long COVID.
Lucinda Bateman, MD, is a renowned clinician, researcher, and educator. Her Johns Hopkins University Medical School training instilled an approach to care that she has employed throughout her career - the patient comes first and the unknown or unexplained does not equate to a lack of proper and compassionate care. Since starting her own practice in 2000, she has served on six boards or committees, been the principal investigator for 45 studies, authored/coauthored 40 journal articles, served as adjunct instructor and adjunct assistant professor in the University of Utah Departments of Preventative Medicine, Internal Medicine, and Anesthesiology, and lectured around the world.