Karyn Bishof, once a Florida-based firefighter paramedic, was puzzled when her hands started shaking weeks after her bout with COVID-19.
In March 2020, she contracted COVID in the earliest days of the pandemic. Now, two years later, Bishof’s long COVID manifests in a puzzling array of symptoms, including both high and low blood pressure, high and low temperatures, constipation and diarrhea, brain fog, short-term memory loss, chronic coughing, rashes, dizziness and a pins and needles sensation, to name just a handful of her symptoms.
She has since had to quit her job and set up a GoFundMe to support herself and her teenage son.
“I hate going to doctors because we don’t check the boxes, right?” said Bishof, who founded the COVID-19 Long Hauler Advocacy Project. “When you go to doctors, (they ask) ‘How often do you experience this and what is your level of pain?’ Well, it depends on what day you ask me and what time of the day you ask me.”
Recognizing the variety of symptoms afflicting long COVID patients, the Cambridge-based corporate benefit wellness company Goodpath has designed what its founders say is the only long COVID solution on the market that’s not offered in a hospital setting.
The company offers integrative care programs for health conditions that greatly affect one’s quality of life, but “traditionally are very hard to manage in the existing health care system,” said Akl Fahed, co-founder and chief medical advisor at Goodpath and a cardiologist and scientist at MGH and Harvard Medical School.
With conditions like back pain, sleep issues and now long COVID, he said, “the condition is not going to kill them, but it affects their mental well-being, their energy, their relationships — it’s truly an issue of quality of life. And we’ve built essentially an integrative health platform that allows us to manage those conditions that affect quality of life.”
“We’re starting to see a pandemic now of long COVID,” Fahed added. “It really falls within the same group of conditions that have a major, major effect on quality of life for people.”
The long COVID program, developed over the past year and launched in March, includes a customized approach for each customer chosen after an online assessment.
“We’re not throwing the kitchen sink at everybody,” the company’s CEO and cofounder Bill Gianoukos said. “We’re saying, ‘We believe this is the best program for you.’”
Once customers enroll, either as a free corporate benefit or as an individual, they have access to a customized app, a live credentialed health coach for video chats, and a smell kit containing rose, eucalyptus, lemon and clove scents for patients who have lost their sense of smell.
Although research on long COVID is still in its earliest stages, Goodpath’s founders argue the treatments they recommend, which include exercise and physical therapy, activity planning help or “pacing” for those with brain fog, breathing training, dietary changes and smell training, are backed by the Centers for Disease Control and Prevention and research into similar chronic conditions.
“Are we 100% sure it’s going to be effective? No, because the trials are not done,” Fahed said of smell training, for example. “But the risk of harm is low, and the overall consensus, at least in the medical field now, is that this is definitely worth a try.”
The company is also sharing its growing body of research into long COVID with the medical community in Boston and beyond to try to understand the bizarre symptoms.
The founders added that the program, which has almost 200 patients enrolled in its first month, is not meant to replace medical care for people with acute symptoms.
“We’re filling that gap,” Fahed said. “You will see your doctor to get all the serious things checked, to make sure you don’t need any additional testing, but then we’re going to be here to help you improve your quality of life and get you back to normal.”
As for the body of research into long COVID as a whole, doctors are still ruling out several potential causes of the illness. Dr. George Alba, a pulmonary and critical care physician at Mass General who researches pulmonary vascular disease and lung injury, said doctors are working to classify the different patients, some of whom have lung inflammation from COVID-induced pneumonia, for example, and others who have symptoms similar to Bishof’s.
“There are no evidence-based medicinal therapies available yet for patients with long COVID,” said Dr. Bruce Levy, chief of the Division of Pulmonary and Critical Care Medicine at Brigham and Women’s Hospital in an email. “As we develop a better understanding of the disease driving mechanism(s) in an individual patient, we will be able to provide targeted therapy that accelerates the resolution of their post-acute experiences with long COVID.”
Still, he said, holistic approaches focused on wellness, lifestyle interventions and routine changes can help.
Alba added that the additional research into the long COVID symptoms, many of which overlap with other often-ignored existing syndromes like chronic fatigue syndrome, provide “an opportunity to learn a lot about what causes it and how to better treat these things,” he said. “Right now, a lot of this is just supportive care.”
“With the support of the NIH and the CDC as well as interested foundations, there are hundreds of clinical and basic science investigators that have pivoted their research programs to now address the important research questions in long COVID,” Levy added. “I am quite optimistic that those answers will start to come soon.”
