By Brian Vastag
Beth Anne Mazur, a fierce but unassuming advocate for people with a devastating — and devastatingly neglected — chronic illness, died on Dec. 21, 2023, in the mountains above Santa Fe, N.M. She was 47 years old.
Beth leaves behind a wide circle of dear friends; many partners in patient advocacy; a brother, Steve, and his family; and her mother Adrienne. She also leaves in her wake countless chronically ill people whose lives were improved by Beth’s selfless and innovative advocacy, which leveraged technology to build a movement and a community around the largely misunderstood but often-disabling illness known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Beth was in many ways the glue of this community, mostly invisible but essential for holding together far-flung sick and disabled people and their allies in research and government. Her legacy is a world where every sick person is more believed, better supported, and more included in the push for effective treatments.
Beth was born on Aug. 25, 1976, in Arlington Heights, Ill., to Paul and Adrienne Mazur. By age 4, a teacher identified her as mathematically gifted. “‘You’re going to have a real smart daughter on your hands,’” Adrienne recalls hearing.
Beth was a screaming infant but a quiet child, reading mysteries at an early age and taking additional math, logic and other gifted classes beyond regular school hours. “They couldn’t give her enough math,” Adrienne says.
Beth’s family moved to south Florida when she was 7. They visited the beach and took trips to Disney World. “She liked Epcot the best,” Adrienne says. “Maybe that’s how she got into travel.” As an adult, Beth visited more than two dozen countries on four continents for work and for fun, often bringing her mother, brother, and friends.
Beth attended Hebrew school — forgoing her Bat Mitzvah because she didn’t want to be the focus of a party — and the science and math magnet Suncoast High School in Riviera Beach, Fla. There she competed in academic contests, winning awards and trophies. “So many trophies,” says her mom.
When Beth was 11 years old, her family bought an Apple IIGS computer. She spent countless hours with it, learning to program while igniting her lifelong passion for applying technology to improve lives.
Beth was also athletic: She launched a high school tennis team, giving her quiet competitiveness room to blossom. “She wouldn’t hit the hardest, fastest shot, but she always hit the most strategic shot,” says Grace Shih, Beth’s friend and tennis partner. “We’d play these kids who had been playing tennis their whole lives. She’d place the ball exactly where they didn’t want it to be, over and over. They’d get outraged. It was so fun.”
Shih says Beth was quiet in public but constantly funny with her friends: “She was just silly, goofy, could always make people laugh, just like in adulthood.”
After high school, Beth attended the Massachusetts Institute of Technology while taking humanities courses at nearby Harvard University, graduating with a Bachelor of Science degree in electrical engineering and computer science in 1999.
College friend Lydia Musher says the dorm lounge outside Beth’s room became a social hub of Next House on the Cambridge, Mass., campus, hosting political debates, drinking contests, and constant spades and hearts card tournaments, where “Beth exerted her dominance, which would continue for 20 years,” as friends Beth made in college kept in close touch. Another dorm friend, Shirley Hung, added: “She was one of those people who could skip class, study the littlest bit while heavily caffeinated, and have natural intuition for the material.”
Beth helped lead a freshman spring break trip to the Bahamas; various road trips, including an ill-fated jaunt to Montreal where too many people packed into a car that got a flat tire; and a Caribbean cruise. Beth played intramural soccer and ice hockey and screamed at opposing players during MIT basketball games.
After graduation, Beth moved to San Francisco and launched her career in the tech industry, working for consulting firm Sapient and various startup companies. She developed expertise in banking software, consulted for Goldman Sachs, programmed early chatbots for Ford Motor Company, and designed the first website for Sallie Mae, the student loan giant.
But Beth wanted more purpose in her work, so in 2007 she moved to the Grameen Foundation, a nonprofit that pioneered microloans to entrepreneurs in the developing world. As a volunteer, Beth also worked on secure voting systems for the City of San Francisco and canvassed voters for the 2008 presidential campaign of Barack Obama.
During her 15 years in San Francisco, Beth built a large and close circle of friends who remember her as always ready for adventure. “She had this way of encouraging you to cut loose, take some healthy risks, and have fun,” says friend Susanna Kittredge.
“She was the funniest of us,” says friend Doug Lee. Her fast wit and dry humor kept groups entertained, whether Beth was leading winter trips to the Lake Tahoe region with her pink snowboard and helmet, racing Big Wheels down Lombard Street, dancing at the Burning Man festival, or attending seemingly endless theme parties, often hosted by her.
Beth later thought that her first apartment in San Francisco helped trigger her descent into chronic illness and disability. Beth and Hung lived in that apartment for a year, spending the first weeks sleeping on a moldy floor. “The mold was always there,” says Hung. Some research and much patient experience has linked mold exposure to the development of ME/CFS.
Beth was also flattened by a bad stomach bug on a trip to India for Grameen; and in 2009, she was infected with suspected H1N1 influenza. She became progressively sicker after each insult. In the multiple-hit hypothesis of ME/CFS, attacks on the immune and nervous systems accumulate, eventually devolving into lifelong illness. Beth strongly felt this is what happened to her.
In 2009, at age 32, Beth became too sick to work full-time. She spent the rest of her life physically and cognitively disabled and desperate to regain her health. For the first few years of her illness, Beth was mostly bedbound and feverish, too weak to take out the trash, hyper-sensitive to sound and light, and dealing with a near-constant pressure headache. In the last few years of her life, Beth often remarked that she felt like she always had a concussion.
Early on, a physician told Beth that she was just anxious, a common experience for people with ME/CFS, especially women.
Dismissed by doctors, Beth began reading medical textbooks, teaching herself large swaths of biochemistry, physiology, biostatistics, neuroscience, immunology and clinical trial design. Beth developed into one of the world’s top experts in the science and medicine of ME/CFS. She did this while experiencing severe cognitive dysfunction, as confirmed by repeated testing.
“Ten percent of Beth’s brain was better and smarter than 100 percent of a lot of other brains,” says a long-time friend.
Turning her technologist skills to her own health problems, while seeking to aid a wider community, in 2011 Beth and two friends launched a website they dubbed “Yelp for treatments,” later named HealClick. It was an innovative gathering place where patients with many different chronic illnesses could track symptoms as they experimented on themselves with drugs and other interventions. Their pitch: “Find your patient match, share what treatments work.” The site presaged by several years the health tracker apps and devices that are now hugely popular.
“The HealClick site saved my life,” says Hannah Tsui, a friend and fellow patient. It was also where Beth first interacted with her future husband, Brian Vastag, in online messages, although it took several years after they met for them to realize they had made this early connection.
In 2014, Beth and Jennifer Brea, a filmmaker and ME/CFS patient advocate, brainstormed a movement that transformed the patient community, reverberating today. “She had a vision,” says Brea. “And she had this way of seeing what was possible.” Together, they launched a network of advocacy groups, joined by technology, where anyone, anywhere could organize local groups, protests, lobbying campaigns and other advocacy. They named it the #MEAction Network, and in 2024 it is a self-sustaining non-profit organization with chapters in 12 states and, soon, the United Kingdom.
By 2023, #MEAction had recruited over 100,000 participants for its campaigns and programs. Their annual Millions Missing protests, which Beth helped organize, began in 2016 and have reached 90 cities in 20 countries. Events have been staged at the U.S. Capitol building, the U.S. Department of Health and Human Services, and other state and national capitals.
“She was entrenched in the community and always fought hard for the community’s needs,” says Laurie Jones, executive director of #MEAction.
Beth wrote dozens of articles, pages, and press releases for #MEAction; convinced a friend at Google to update the tech giant’s ME/CFS pages with more-accurate information; lobbied U.S. officials to fund Collaborative Research Centers for ME/CFS, which they did; helped build a physician-awareness campaign around Brea’s film UNREST; secured funding for MEpedia, a Wikipedia-style site that annually reaches two million readers; and was instrumental in starting Canary Corps, a peer-run movement for patients seeking financial and other support.
“Beth had a vision of what needed to happen and did everything in her power to move the world in that direction. She understood the obstacles and confronted them squarely … inspiring a great many others with her courage, kindness, compassion and humor,” says academic and journalist David M. Tuller, who has written extensively on ME/CFS.
Beth rarely sought recognition for her advocacy and instead worked in the background by generating ideas, recruiting advocates, and connecting her community to scientists, physicians, and government officials. She also used her limited energy to directly aid desperate patients: Helping to find them physicians, get admitted to hospitals, get removed from hospitals if they were being neglected, and aiding them in obtaining housing, disability insurance, and other support.
Steve Mazur, Beth’s brother, says, “If she hadn’t been sick, she would have fought against some other injustice. It was just who she was.”
During her 15 years as a patient and advocate, Beth watched friend after friend with ME/CFS succumb to their persistent ailments — for which no FDA-approved treatment exists — and die. “Chronic illness is a tragedy, and there was an emotional toll of taking in all these tragedies,” says Hung of Beth’s seemingly endless empathy.
In 2013, Beth moved to Kaua’i, Hawai’i, with friend Samuel Birney. There, Beth built a small community of people with ME/CFS and related complex chronic illnesses whom she invited to the island. For several years, Birney’s house became a gathering place for a half-dozen or more chronically ill people. Her invitations led to deep relationships, including with her future life partner, Brian Vastag. Beth invited him to Kaua’i in the summer of 2014. They began dating almost immediately and married in 2019. They divorced in 2023 but remained close.
As partners, Beth and Vastag supported each others’ advocacy work. They also traveled to five Hawaiian islands; Glacier National Park by train for their honeymoon; Wyoming for a solar eclipse in 2017; and Costa Rica and Belize in 2019. Beth often used wheelchairs in airports and carried a portable folding chair, resting in bed frequently and unable to participate in activities like hiking and swimming.
In 2015, Beth and Steve moved their mother to Kaua’i, where Beth could visit Adrienne often and assist with daily tasks.
Beth constantly worked to improve her health, trying literally hundreds of treatments and other interventions. Thousands of dollars of supplements and prescription drugs filled bins in her home. She used myriad medical devices, injected herself with experimental medicines, regularly meditated and did other calming exercises, worked with researchers to obtain a hyperbaric oxygen chamber, bought an infrared sauna, and scanned the scientific and so-called gray literature of internet forums for leads.
Any improvements were brief.
In May of 2020, Beth and Vastag warned in The Washington Post that the evolving coronavirus pandemic would unleash a devastating wave of disabling ME/CFS. The article proved prescient, as close to half of all people with persistent symptoms after infection with the SARS-CoV2 virus qualify for a diagnosis of ME/CFS. In other words, much of “long covid” is really ME/CFS, just as Beth and Vastag predicted.
Watching the ranks of long-term ill and disabled people explode in the wake of ineffectual government and public response to the covid-19 pandemic distressed Beth. She wanted the world to know that “mild” infections can cause years-long disability in the unlucky, a message she felt the public, researchers and government leaders largely ignored. Research funding continues to lag far behind need. A new generation of long covid activists appeared, and Beth informally advised them while working to integrate their networks with hers.
In 2017 and 2018, Beth accompanied Vastag to the National Institutes of Health in Maryland, where he was participating in the first ME/CFS inpatient study at the government’s biomedical research agency in decades. There, Beth pushed researchers to accelerate their work and met with then-NIH Director Francis Collins. She told the scientists that their plan to intensively study a small number of patients would take at least five years — far too long. Beth proved prescient once again; she died before the results of that research were published.
More privately, Beth also experienced bouts of depression, an illness that she, like many coping with it, kept largely hidden from friends and the larger world. These episodes deepened and darkened after she fell ill with ME/CFS.
Many of Beth’s extended family were victims of Nazis in World War II. Her beloved grandmother, Stella Mazur, escaped from Warsaw and was later moved to a Soviet work camp in Siberia; she and Beth’s grandfather Sigmund survived the Holocaust. Many other relatives did not, including Stella’s brothers, who were murdered by German soldiers in the Warsaw Ghetto. Beth’s father Paul was born in a resettlement camp in Poland shortly before the war ended in Europe, marking him as a Holocaust survivor as well.
Beth researched the emerging science of epigenetics — in which extreme stress may be heritable from mother to child — and suspected epigenetic imprinting from the deprivations of her grandparents’ lives had passed from them to her father to her, possibly making her more susceptible to chronic illness.
Beth’s father Paul Mazur died in 2003 at age 57. Beth, then 27 years old, was traumatized by his sudden and premature death.
In her final years, Beth explored her Jewish heritage more and more, attending holiday services with her mother and connecting with distant cousins on genetic testing site 23andMe, which reported Beth as 99.8% Ashkenazi Jewish. The terrorist attacks that killed 1,200 Israelis on Oct. 7, 2023, greatly affected her, as did the growing global wave of antisemitism.
Beth dreamed of one day being well enough to hike the grueling 11-mile Kalalau Trail on Kaua’i; she never did.
Beth died in the early hours of Dec. 21, 2023, next to the Rio en Medio, a stream running through the property of her dear friends Julie Rehmeyer and John Kadlecek. Beth had spent the final two weeks of her life in their casita and wrapped in their love. In a small notebook she had written, “I feel at peace. It is a powerful feeling.”
A memorial rests next to the stream, where all who loved and knew her are welcome to visit.