Public Figures and celebrities living with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) serve as powerful advocates for raising awareness about this often misunderstood condition. By sharing their experiences, they shine a light on the challenges of living with ME/CFS, inspiring others in similar situations and reducing the stigma associated with the illness. Their visibility also encourages public discussions, drives support for ongoing research, and highlights the need for better understanding and treatments. Through their platforms, these public figures play a crucial role in fostering change and hope for the millions affected worldwide.
Understanding ME/CFS
ME/CFS is a complex and debilitating condition characterized by extreme fatigue, cognitive dysfunction (often referred to as “brain fog”), unrefreshing sleep, and a range of other debilitating symptoms. This chronic illness significantly impacts daily life, often leaving individuals unable to work, attend school, or participate in routine activities.
The lack of a definitive diagnostic test and limited public awareness have historically contributed to misconceptions about ME/CFS, often causing patients to feel dismissed or misunderstood. Raising awareness is critical for increasing funding for research, improving diagnostic tools, and developing effective treatments. By amplifying the voices of those affected, including public figures, we can foster empathy, understanding, and meaningful change.
ME/CFS and Long COVID
The connection between ME/CFS and Long COVID has become increasingly evident as more people experience prolonged symptoms following COVID-19 infections. Long COVID shares several key characteristics with ME/CFS, including persistent fatigue, cognitive impairment, and post-exertional malaise (PEM).
The pandemic has inadvertently amplified awareness of ME/CFS, as many Long COVID patients face similar struggles. Several public figures and celebrities have publicly shared their experiences, drawing parallels between their Long COVID symptoms and ME/CFS, further highlighting the urgent need for research and effective treatments.
Public Figures and Celebrities Living with ME/CFS
Famous people with ME/CFS who have publicly shared their experiences play an instrumental role in raising awareness about this often misunderstood condition. At Open Medicine Foundation (OMF), many of these individuals also serve as our OMF Ambassadors, using their platforms to advocate for research, share their personal stories, and inspire hope among those affected.
Laura Hillenbrand
Laura Hillenbrand, the acclaimed author of Seabiscuit and Unbroken, has not only achieved literary success but has done so while battling the debilitating effects of ME/CFS. Diagnosed in her early twenties, Hillenbrand’s journey with ME/CFS has profoundly influenced her writing style and process. Writing became her refuge when her body couldn’t keep up with her ambitions, allowing her to immerse herself in historical stories from the confines of her home.
Despite living with extreme fatigue, vertigo, and periods of being bedridden, Hillenbrand meticulously researched and wrote her best-selling books, which went on to become major motion pictures. Her dedication to her craft while managing the limitations of ME/CFS showcases an extraordinary level of resilience.
In interviews, Hillenbrand has been candid about her struggles, emphasizing how misunderstood ME/CFS is, even among healthcare professionals.
“Fatigue is what we experience, but it is what a match is to an atomic bomb. This disease leaves people bedridden. I’ve gone through phases where I couldn’t roll over in bed. I couldn’t speak. To have it called ‘fatigue’ is a gross misnomer.”
— Virology Blog
Hillenbrand’s story continues to inspire people around the world, demonstrating the power of perseverance and the importance of advocacy for increased ME/CFS research.
Karin Alvtegen
Karin Alvtegen, one of Scandinavia’s most widely celebrated authors, is best known for her gripping psychological thrillers. Titles such as Missing and Betrayal have earned her critical acclaim and a dedicated readership. However, behind her success lies a personal battle with ME/CFS that has significantly shaped her life and career.
The lack of awareness and understanding about ME/CFS in the medical community led to delays in her diagnosis, leaving her without proper guidance during the critical early stages of the illness.
“Since doctors are so poorly informed about ME, it took four years until I got the correct diagnosis. I wish I had got the correct advice from the beginning on how to handle this disease.”
Today, Alvtegen uses her platform as an OMF Ambassador to amplify awareness about ME/CFS. Through interviews, public appearances, and her written work, she emphasizes the need for more research funding and medical education.
Award-Winning Swedish Author Karin Alvtegen Makes a ME/CFS Announcement
Jennie Jacques
Jennie Jacques, best known for her role as Queen Judith in the historical drama Vikings, has become a vocal advocate for ME/CFS awareness. After her diagnosis, Jennie has used her platform to shed light on the struggles of living with this debilitating condition while managing the demands of an acting career.
In her candid interview with Open Medicine Foundation, Jennie opens up about her experience with ME/CFS and the challenges she faces daily. She shares insights into how the illness has reshaped her life, affecting her energy levels, causing brain fog, and emotional well-being.
“It’s a light-hearted effort to raise awareness and funds for Long COVID and ME/CFS.”
Jennie emphasizes the importance of raising awareness and funding research, knowing that increased visibility can lead to better support systems and, ultimately, a cure. Her efforts include participating in awareness campaigns, engaging with her fans on social media, and collaborating with us at OMF to make a meaningful impact.
Through her advocacy, Jennie has become not only a voice for those with ME/CFS but also an inspiration to others navigating chronic illnesses.
Physics Girl (Dianna Cowern)
Dianna Cowern, widely known as Physics Girl, is a science educator and YouTube creator with over 2.8 million subscribers. After contracting COVID-19, Dianna developed Long COVID, which shares many symptoms with ME/CFS, including debilitating fatigue, brain fog, and post-exertional malaise.
Her journey with Long COVID has been raw and public, as she’s documented her struggles through social media and dedicated livestreams. In a livestream to raise funds for the Open Medicine Foundation, Dianna shared her experience while advocating for more research into ME/CFS and Long COVID.
“All symptoms get worse, headache increases, flushing, reaction to food increase, stomach cramps, nausea, energy level completely tanks, can tolerate sensory stimulation much less. It can take days, weeks, even months to improve.”
Dianna continues to use her platform to educate her audience not just about science but also about the realities of living with Long COVID. Through her openness, she brings visibility to an invisible illness and helps foster empathy and understanding.
Matt McGorry
Matt McGorry, best known for his roles in Orange Is the New Black and How to Get Away with Murder, has been open about his struggles with Long COVID. After contracting COVID-19, Matt developed persistent symptoms, including overwhelming fatigue, cognitive dysfunction, and physical limitations that have impacted his professional and personal life.
In an interview with The Guardian, Matt shared the emotional toll of living with a condition that remains poorly understood by much of the medical community:
“Long COVID has fundamentally changed how I experience my body, my work, and my relationships. It’s a daily struggle, but I’m determined to use my voice to raise awareness and advocate for better research and care.”
Matt’s candidness about his health challenges has helped shed light on the overlaps between Long COVID and ME/CFS, highlighting the urgent need for continued research and improved treatment options.
Through his platform, Matt amplifies the voices of others affected by Long COVID, contributing to a growing movement for visibility and change.
Amy Carlson
Amy Carlson, well-known for her role as Linda Reagan on Blue Bloods, has used her platform to advocate for ME/CFS awareness. While Amy does not have ME/CFS herself, her role as an OMF Ambassador reflects her deep commitment to the cause.
Amy actively supports research initiatives, raises funds, and participates in public campaigns to drive awareness. Through interviews and social media posts, she emphasizes the importance of understanding ME/CFS and supporting those who live with the condition every day.
Her involvement brings celebrity visibility to a condition that remains largely misunderstood, helping bridge the gap between scientific research and public awareness.
Jacqueline Ko
Jacqueline Ko, a celebrated Canadian opera singer and artistic director of Opera Mariposa, was just ten years old when her health began to decline drastically. Diagnosed with ME/CFS, Jacqueline faced immense physical challenges that threatened her ability to pursue her passion for singing.
“I was ten years old, and my health completely collapsed.”
Her performances have inspired audiences around the world, and her advocacy has played a crucial role in increasing visibility for ME/CFS.
Performer Jacqueline Ko Shares her Story: “I was ten years old, and my health completely collapsed”
Michelle Akers
Michelle Akers, a legendary soccer player and World Cup champion is widely recognized as one of the greatest female soccer players of all time. Known for her unparalleled dedication and resilience on the field, Michelle faced an unexpected challenge when she was diagnosed with ME/CFS at the peak of her career.
The illness forced Michelle to confront debilitating fatigue, cognitive difficulties, and physical weakness—symptoms that sharply contrasted with her reputation as an elite athlete. Despite these challenges, Michelle continued to advocate for awareness and research into ME/CFS, sharing her personal experiences with the world.
Michelle described the paradox of living with ME/CFS:
“The irony of the illness [is], the harder you work, the more it drags you down, the more it disables you.”
Through her advocacy, Michelle has brought ME/CFS into the global spotlight, showing that even world-class athletes are not immune to its impact.
Stuart Murdoch
Stuart Murdoch, the lead singer of the indie-pop band Belle and Sebastian, has been open about his struggles with ME/CFS. Through his music and public speaking, he has brought attention to the daily challenges of living with this illness. Stuart has shared how ME/CFS influenced his creative process and has used his music to express his journey with the condition.
However, rather than being silenced by the condition, Stuart channeled his struggles into his music. Many of Belle and Sebastian’s songs subtly reference his experiences with illness, reflecting themes of isolation, resilience, and hope.
Stuart actively supports initiatives to advance ME/CFS research and advocates for a better understanding of the condition. His openness about living with ME/CFS has not only helped to reduce stigma but has also inspired fans worldwide to rally behind the cause.
Stuart Murdoch of Belle and Sebastian on ME/CFS: “This is a real thing – let’s fix it.”
Jack Emmett
Jack Emmett, a professional soccer player formerly with Harrogate Town AFC, is another prominent figure who has spoken publicly about his experiences with ME/CFS. Diagnosed after experiencing persistent symptoms that interfered with his athletic performance, Jack has been transparent about the challenges he faces both on and off the field.
In an OMF interview, Jack shared his frustrations and hopes regarding the lack of awareness and research funding for ME/CFS:
“Having only recently been diagnosed, I am still learning about the world of ME/CFS, and it is hard to find clear, detailed information about the illness. It is clearly a condition that affects many people; however, it is something that most people have never heard of, and this seems to be reflected by the lack of medical research.”
Jack’s courage in sharing his story has brought much-needed visibility to ME/CFS within the professional sports world. His advocacy highlights the urgent need for increased funding, better resources, and a deeper understanding of the condition.
Join Public Figures and Celebrities in Supporting ME/CFS Research
Public figures and celebrities with ME/CFS and Long COVID have played a vital role in raising awareness, breaking stigma, and driving research funding. Their stories not only inspire but also spotlight the urgent need for better understanding and treatments.
Through their advocacy, they’ve helped OMF to continue groundbreaking research into the causes, treatments, and potential cures for these conditions.
But progress depends on all of us. Whether through donations, sharing stories, or raising awareness, every action helps create change.
Join the Movement Today:
Together, we can bring hope and make a difference for millions living with ME/CFS and Long COVID.
