This past May—more than three years after the COVID-19 pandemic began—the World Health Organization announced the public health emergency was over. After years of hardship and uncertainty, many breathed a collective sigh of relief. But for those struggling with long COVID—which is about 10 to 30% of people diagnosed with COVID—uncertainty remains. Crippling symptoms are affecting their quality of life and there aren’t solid treatments to rely upon.
“Those who have long COVID are a varied group: people of all ages, races, ethnicities and health backgrounds,” says Sara Santarossa, Ph.D., scientific director of Henry Ford Health’s Patient Engaged Research Center (PERC). “While some long COVID patients were hospitalized, others were not. With long COVID, it’s difficult to identify patterns.”
To better understand long COVID—and to move the needle on long COVID research—Dr. Santarossa and her team co-authored a study with several patients who have long COVID. They wrote about their experiences and pinpointed important questions they’d like answered.
“We really wanted to keep patients at the center of what we’re doing,” says Dr. Santarossa. “Instead of researchers leading the themes of the study, we wanted to collaborate with patients, because at the end of the day, we’re doing this for them.
“Patients expressed how they felt heard, how it was comforting to talk to others who understood what they were going through. Although someone’s particular story with long COVID may have been different, there were so many similarities in how long COVID has affected them.”
Life With Long COVID
An underlying theme patients discussed was life before and after COVID—how their debilitating symptoms have changed their lives. Common symptoms include:
- Fatigue. One patient in the study wrote, “I knew what tired was, but this was different.” Another said, “I have a lot of fear surrounding exercise, because it is the one thing I know consistently triggers my symptoms.” Yet another said, “I have parameters, and if I push too hard, I end up in the hospital.”
- Loss of smell and taste. One patient, who contracted COVID-19 early on in the pandemic, wrote: “My taste and smell abruptly and completely disappeared.
- Memory loss. “I have moments of total memory lapse,” another patient wrote.
- Respiratory problems. Yet another patient described a variety of symptoms: “My new ‘normal’ two years later still consists of a nightstand full of medications—several supplements, three cardiac meds, two inhalers, and meds to help the depression and anxiety this has all caused.”
- Brain fog. “I started to test my cognitive function on my own by using sudoku puzzles,” one patient wrote. “On what I would consider a ‘good day’ I would be able to do a level 3 puzzle, but on my ‘COVID days’ I wouldn’t even be able to complete a level 1 puzzle.”
- Depression and anxiety. “I have never felt exactly like my pre-COVID self,” one patient wrote. “I still experience a lot of fear and anxiety about getting COVID again.”
- Worsened comorbidities. “For some, long COVID worsened their comorbidity, or brought back issues that were previously under control, such as diabetes,” says Dr. Santarossa.
Treatments That COVID Long Haulers Are Trying
Patients involved in the study also discussed potential treatments for long COVID—what they’ve tried and what’s working for them. “Some people are very interested in more integrative and holistic approaches, such as meditation and yoga,” says Dr. Santarossa. “Others are using a supplement called D-ribose to help with fatigue. For those dealing with a loss of smell and taste, olfactory training has been helpful.”
The COVID-19 vaccines have also eased symptoms. As one patient wrote, “After that second dose I started to have more ‘good days’ than ‘COVID days.’” Before that, I was still having severe brain fog, fatigue, migraines, depression and joint pain.”
To deal with the mental health aspect of long COVID, art therapy has been a beneficial outlet. “Many people mentioned how cathartic art therapy is,” says Dr. Santarossa. “One person was initially resistant to try it because she wasn’t confident in her art skills, but she ended up loving it so much that she self-published a book with her artwork. She said art therapy completely changed the way she managed her condition.”
Questions That COVID Long Haulers Want Answered
As part of the study, COVID long-haulers put together a list of questions they want answered. For example:
- What integrative or functional medicine treatments have long COVID patients found to be successful?
- What are some treatments for long COVID that specifically target maintaining energy and consider time management/planning skills?
- How do chronic conditions or pre-existing conditions impact long COVID symptoms?
- How do supplements or medications impact long COVID symptoms?
- Does the amount and type of sleep impact long COVID symptoms?
- Has there been equitable treatment of long COVID patients?
“Our next step is to apply for more funding to disseminate research and get these questions answered,” says Dr. Santarossa. “As much as everyone is struggling, I think what’s really powerful is how hopeful everyone is.”
For some, just bringing attention to long COVID is a big step forward. As one patient wrote: “There are too many people trying to figure this out together and the strength of numbers will always make things happen quicker, but in the meantime, it will help everyone like me for the word to get out about the troubles of long COVID so family members, friends and employers can be sympathetic…so [that] it is a little less stressful.”
Reviewed by Sara Santarossa, Ph.D., an assistant scientist in the department of public health sciences at Henry Ford Health. She is the scientific director of Henry Ford Health’s Patient Engaged Research Center (PERC).