People with long COVID, ME/CFS and other chronic conditions are taking up science to find symptom relief and inspire new directions for professional scientists.
Melissa Red Hoffman was “feeling really stuck” last summer. A 50-year-old surgeon in Asheville, N.C., Hoffman had been struggling with long COVID since getting infected with the coronavirus two and a half years earlier. “Deafening fatigue” was one of her worst symptoms, she says. “I feel tired behind my eyes from the moment I get up to the moment I go to sleep.” She managed to work part time, but much of her work had shifted to administrative tasks that she did from her couch.
Early in the testing process, Hoffman’s fatigue started to lift, she says. “That’s been exciting, just to feel a little bit of a change.” “People who were ignored by the American health care system … often need to turn to each other in order to gather the data that gets the attention of the mainstream,” says health care researcher Susannah Fox, author of the new book
Progress on identifying the disease’s triggers has been slow, in part because of the wide variety of symptoms across many organ systems and in part due to relatively limited research funding. And some doctors have dismissed patients’ symptoms as all psychological — a factor that some experts connect to the disease’s higher burden on women.
Theoharis Theoharides is one of those scientists. As director of the Center of Excellence for Neuroinflammation Research at Nova Southeastern University in Clearwater, Fla., he has decades of experience studying mast cell activation syndrome, a chronic condition characterized by intense allergic reactions that is often diagnosed alongside ME/CFS and long COVID. “They’re very bright, very dedicated,” Theoharides says of Falor and Romanuk.
“There was a desperate need to validate the anecdotal stories of patients in a formalized way,” Taylor says. “He could never go to a lab” or a doctor’s office to have samples collected, Bruno says. But with Remission Biome’s remote framework and individual support, he can be a patient-researcher. In addition to flexibility in locations, each member of the cohort is going through the testing protocol at their own pace, incorporating their microbiome test results, other diagnoses and input from their physicians.
In addition, patients can help scientists design studies that are more likely to provide accurate results. For example, feedback from members of Remission Biome and other patient representatives helped David Esteban, a biologist at Vassar College in Poughkeepsie, N.Y., who was looking for people who had gotten COVID-19 but didn’t develop long COVID and could serve as control patients in a project funded by PLRC.
Internal capacity is another challenge: Chronically ill people tend to have limited energy to devote to projects; they must balance this work with managing their symptoms. Patients tend to be more ambitious than their available energy can support, Seltzer says. Sometimes a patient-researcher might have to take a break from a project to recover from a symptom flare-up. Projects like Remission Biome take these crashes into account when designing experiments and distributing tasks.
Taylor argues that data from patient-led research should be added to the types of evidence that regulatory agencies like the U.S. Food and Drug Administration consider for approving treatments. The FDA and the National Institutes of Health took one step in this direction earlier this year by soliciting data from long COVID patients and doctors about their experiences with treatments approved for other diseases.
United States Latest News, United States Headlines
Similar News:You can also read news stories similar to this one that we have collected from other news sources.
Study Reveals Biological Basis of ME/CFSResearchers have found distinct biological differences in a small group of people with ME/CFS compared to healthy controls, providing evidence that the condition is unambiguously biological.
Read more »
The “Clean Fuel Standard” is a False SolutionThe proposed “Clean” Fuel Standard (CFS) is a false solution to our fight for clean air.
Read more »
3 people arrested for smuggling 12 people in big rig found in Bexar County, sheriff saysThree people were arrested Thursday after Bexar County Sheriff’s deputies and the U.S. Border Patrol tracked down an 18-wheeler with 12 people in the trailer.
Read more »
Authorities order people to remain in homes after multiple people are shot in suburban Philadelphia townshipAuthorities order people to remain in homes after multiple people are shot in suburban Philadelphia township
Read more »
People smuggler admits using sewer pipes to take people from Mexico to U.S.Patrick Smith is a London-based editor and reporter for NBC News Digital.
Read more »
CDC simplifies COVID guidance, only 18% of people in WA up to date on vaccinesAs we march out of winter, the Centers for Disease Control and Prevention (CDC) is relaxing its federal COVID-19 recommendations.
Read more »