Allison Blalock was in eighth grade the first time she fainted, in a bathroom during a family vacation to Washington, D.C. Family members didn’t think much of it until it happened again during a school trip. By chance, a visiting medical student at her pediatrician’s office helped diagnose Allison with the blood circulation disorder POTS (postural orthostatic tachycardia syndrome), which contributes to dizziness and other symptoms when standing upright. A cardiologist later recommended she intake extra fluids and salt.

But her condition worsened. Toward the end of her freshman year at a New Jersey boarding school, in 2023, Allison had experienced enough episodes of lightheadedness and near fainting that she left school early, before final exams. That summer, she had consistent fainting episodes and a high heart rate, and she was placed on a heart monitor to check for other conditions.

“Every time I went to the cardiologist, they would do echocardiograms, look at my heart, and they didn’t see anything wrong,” says Allison, now 16. “It was the usual ‘fluids and salt,’ and nothing was really changing.” Her anxiety increased to the point that she thought she might be inventing her symptoms.

“POTS wasn’t that well known, so the typical recommendation was water, salt and exercise,” says Allison’s mother, Eileen. “But that wasn’t working for her … she was fainting everywhere. She was using a cane, wearing compression socks. It was crazy.”

Then, Eileen’s husband, Jamie, called Johns Hopkins and was referred to Peter Rowe, director of Johns Hopkins Children’s Center’s Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Related Disorders Program.

During a three-hour appointment, Rowe performed a comprehensive physical exam. He had Allison hold her arms up like a cactus and squeeze her hands. He measured how flexible her limbs and joints were, and he monitored Allison’s blood pressure while she lay flat on a table, and for several minutes after while standing against a wall. Rowe also took a detailed medical history, including questions the Blalocks were not asked before.

Did Allison like salt and vinegar flavored potato chips? They were her favorite! She ate them all the time — a craving she had because she lacked enough salt, Rowe explained.

How did she feel after eating pizza? She burped a lot — that, plus redness in her cheeks were symptoms of an intolerance of milk protein, Rowe explained.

In all, Rowe diagnosed Allison not only with POTS and chronic fatigue syndrome, but also companion conditions such as thoracic outlet syndrome (compression of the nerves and blood vessels between the neck and shoulder), which causes pain and numbness when lifting the arms, and hyperhidrosis (excessive sweating).

Through its conversation with Rowe, the family realized that Allison for years had been adjusting many of her actions because of these conditions without knowing what they were. She took baths in the shower to avoid standing up, turned her head upside down to blow-dry her hair, stood on a kitchen counter to get items from cabinets without lifting her arms.

Rowe assumed the role of quarterback, recommending a variety of medications and supplements to ease Allison’s various symptoms: a steroid to help retain sodium; potassium to keep the steroid effective; birth control pills to regulate her debilitating, too frequent periods; a dietary supplement to counteract the sweating. He also worked with Allison’s psychiatrist to adjust her medications for anxiety and attention-deficit/hyperactivity disorder to maximize her functioning for school.

“It was like night and day from when we walked in his office and left,” Eileen Blalock says. “We were just blown away. The guy is like a savant. There has not been one symptom of anything related to her health that he has not had an idea or a solution around. … He’s been a total game changer for us.”

Today, in 11th grade, Allison feels mostly well, and receives physical therapy for her neck. She plays volleyball and is on a ski racing team. She’s a peer tutor and a leader of two school clubs. She is trying to become certified as an emergency medical technician, and she has her sights set on college.

“She’s excelling,” her mother says. “She has close to a 4.0 average. She’s working. She’s doing sports. She’s leading a normal, healthy teenage life — at a very high level.”

Today, Allison Blalock plays volleyball and is on a ski racing team.

Getting the Story Straight

Allison Blalock is one of many success stories for Rowe, one of the world’s leading experts in chronic fatigue syndrome, and his team, which includes physical medicine and rehabilitation physician Alba Azola, nurse Renee Swope and family nurse practitioner Samantha Lemmon. He uses methods developed over decades and throws himself wholeheartedly into treating a complex, perplexing condition.

Rowe was busy managing the Pediatric Diagnostic Referral Clinic at Johns Hopkins in the mid-1990s, seeing patients with puzzling symptoms who were referred by physicians across the region, when he noticed a series of adolescents experiencing fainting back-to-back with chronic fatigue.

It was impossible not to notice that the patients developed symptoms when they were upright, especially in hot environments, Rowe recalls. So, he and Johns Hopkins cardiologist Hugh Calkins put seven such patients through a tilt-table test, during which a person lies flat on a special table and then is tilted to a 70-degree upright angle. All of the patients developed profound drops in blood pressure, making them feel faint, and proving it was a biological — not a psychological — change, known as orthostatic intolerance. Within a week of publishing their findings in The Lancet in 1995, they received thousands of requests to see patients from all over the world.

“It made me appreciate the huge unmet need, and that this would be a completely worthwhile focus for my career,” Rowe says. The Chronic Fatigue Clinic, recently renamed the ME/CFS and Related Disorders Program, opened at the Children’s Center in 1997.

Once believed to be a fabrication of stressed-out housewives, chronic fatigue syndrome — its official moniker is myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — is estimated to affect more than 3 million people in the United States. ME/CFS, which can emerge following a viral infection but has no known cause, is marked by profound fatigue that prevents people from participating in daily activities such as school, work or hobbies. Many are bedbound, barely able to lift their head.

But it’s not a solo illness. Through years of research, Rowe and colleagues have published studies describing the intersection of ME/CFS with numerous other conditions, such as joint hypermobility, vascular compression syndromes, migraines, immune dysfunction and gastrointestinal problems. Long COVID — lingering effects from a SARS-CoV-2 infection — causes similar symptoms, resulting in more interest in ME/CFS, and more demand for care.

Renee Swope, a longtime school nurse, saw Rowe’s job posting for a clinic nurse in 2020 during a visit with one of her children, and she applied immediately: “I saw it and thought, I can’t think of a better job than to go to work and help people just like me and my kids every day.”

For four years, she was present for every patient visit with Rowe and instantly felt a connection. She also writes letters to support patients’ accommodations for work and school, and handles prior authorizations with insurance companies — many of the medications the team employs are used off -label. Additionally, she and Rowe educate school nurses across Maryland about ME/CFS and how to recognize its symptoms.

“We’re seeing it more and more, especially post-COVID,” Swope says. They discuss how to explain to school administrators and guidance counselors that these children aren’t trying to skip school. “Everyone thinks they’re just being lazy, and it’s not that at all. … They want nothing more than to be in school with their peers, to be able to do what their friends are doing … and they just can’t,” says Swope.

Meghan Swope joined Rowe’s team about three years ago as coordinator for a cohort study of newly diagnosed patients with ME/CFS who are ages 13–26. This effort, which already has enrolled 50 of a planned 80 patients and 100 control subjects, will study the impacts of thoracic outlet syndrome as a contributor to ME/CFS symptoms. Results could be available within the next one to two years.

A previous cohort study that Rowe conducted, from 2008–2012, looked at health-related quality of life among patients with pediatric ME/CFS. He found that compared to healthy people, patients with ME/CFS have significantly more movement restrictions in the limbs and the spine, but they could improve with physical therapy.

“One of the most gratifying experiences is when we apply the things that we’ve learned over the last 30 years and people start functioning much better,” Rowe says. In the first cohort study, for example, many patients who rated their wellness as 50 on a 100-point scale increased that rating to 75 just 12 months into treatments. “Many people get considerably better even in the first six to 12 months with focused treatment,” he says.

Azola sees adult patients in the clinic and conducts research on the neuropsychiatric effects of long COVID. Some 65%–70% of her patients had COVID-19 as a trigger to ME/CFS, she explains, while other causes could be Lyme disease, childbirth or traumatic head injuries such as concussions.

“I like the complexity of it,” she says. “This patient population has been in some ways mistreated by the medical communities. They have a lot of mistrust initially, and that’s a challenge. They’ve been used to people telling them that their test results are normal. … Creating a safe space for the patient to be able to report their symptoms and feel heard and understood is a huge part of it.”

Rounding out the team are Lemmon, who came on board in July 2024, and nurse practitioner Sarah Frank, who will start this summer.

With Rowe turning 70 this September, he plans to shift clinical care of patients to Azola, Lemmon and Frank while he continues writing and pursuing other tasks.

Unfortunately, some patients don’t improve much or at all, even with Rowe and colleagues trying everything. With more focus on ME/CFS resulting from the COVID-19 pandemic, Azola says she hopes there will be more research dollars to identify pathological mechanisms underlying the condition.

“I tell Peter sometimes that 20 years from now, we’re gonna laugh about how we did things, because I’m so hopeful that we’re going to gain so much knowledge,” she says.