Patients with long-term coronavirus symptoms join advocacy groups to campaign for more research
Karen Callan, 75, a jewelry designer with an online store, has always been known as a spark plug, full of energy and very socially active in her Palm Springs, Calif., desert community. In March last year, she experienced an intense sore throat and a 103° temperature and feared she might have been infected by the newly reported coronavirus. She was right. After testing positive for the virus, Callan has spent the entire last year trying to recover from her ongoing health issues caused by COVID-19.
At first, she had intense headaches and a lack of energy and oxygen just to make it to the kitchen or bathroom. Since Callan lives alone, friends stepped in to deliver meals and keep her socially connected, all from a distance.
One year later, she is only back to about 75% of her normal energy level. She has not recovered her senses of taste and smell and continues to suffer from fatigue, dizzy spells, recurring bizarre dreams and throbbing headaches that last for five to seven minutes at a time.
“I had a few weeks where I was too weak and fatigued to take a shower or wash my hair,” Callan said. “I used to be a multitasker, but I just can’t do it all anymore.”
“Some days it is so bad I can’t remember what I have done for the last four hours – I’m missing chunks of time in my days.”
Callan and others who experience chronic, long-term symptoms from COVID-19 are known as “long-haulers.” Their persistent health ailments include extreme fatigue, cognitive issues many describe as “brain fog,” blurred vision, muscle and joint aches, headaches, sleep problems, gastrointestinal issues and anxiety and depression.
There’s still a lot that doctors and researchers don’t know about the condition and long-haulers are pushing for answers.
Long-haul COVID-19 symptoms appear to affect women more than men. Patients are often in their mid-20s to 40s, but a Lancet study found that three-quarters of older patients who had been discharged from the hospital still experienced debilitating effects six months later.
“In my practice, it seems about ten percent of folks have significant symptoms at two months after onset,” said Dr. Charles Vega, a family practice physician with the UC Irvine Family Health Center in Santa Ana, Calif., who also serves as director of the UC Irvine Program in Medical Education for the Latino Community.
Feeling Overlooked, Long-Haulers Demand More Research
With few answers or treatments in the pipeline, many long-haulers are feeling neglected by the health care system, which is why some have created their own support networks to advocate for more research.
One of the first long-hauler online support and advocacy groups, Body Politic, has grown to more than 18,000 members. Other online support groups include the 162,000-member Survivor Corps Facebook page, C19 Recovery and Awareness, COVID Boot Camp and the Facebook Long COVID Support Group.
While many of the groups created are searching for answers from researchers and medical experts, most join the groups to be part of a community where they feel supported.
Body Politic has joined with the Massachusetts Institute of Technology and other researchers to create a COVID Long-Haulers’ Patient-Led Research Collaborative. Last December, the group issued a report surveying more than 3,700 patients in 56 countries. More than half of those surveyed reported cognitive dysfunction; 26% of them were ages 50-59.
While many of these groups are searching for answers from researchers and medical experts, most long-haulers join the groups to be part of a community where they feel supported by others suffering from chronic COVID-19 symptoms.
One long-hauler, Angela Aston, 50, of San Marcos, Texas, told The New York Times that the stigma she felt after explaining her illness to colleagues, friends and family motivated her to seek out an online support group.
“People would say to my husband, ʻShe’s not better yet?’ They start to think you’re making it up,” Aston said.
‘I Just Don’t Remember Any of It‘
Tess Fraser, 57, a freelance accountant with long-haul COVID-19 who works out of her home in Wichita Falls, Texas, has lapses in her memory and suffers ongoing fatigue. Last summer, Fraser lost her sense of smell;even her asthma inhalers gave her no relief from her intensifying episodes of shortness of breath.
Thirty-six hours after testing positive for COVID-19, she was driven by her husband an hour and a half away to the nearest Fort Worth hospital where Fraser was immediately checked into the intensive care unit.
Karen Callan has been trying to recover from COVID-19 symptoms for a year | Credit: courtesy of Karen Callan
“I had to sit in my truck in the hospital parking lot because I couldn’t go in with Tess,” said Michael Fraser. “All I could think about was, ‘Am I ever going to see her again?'”
Even though she was able to go home after three weeks in the hospital, Tess says, “One year later, everything about that first week in the ICU is wiped clean from my brain’s memory. I wasn’t in a coma or unconscious, I just don’t remember any of it.”
While the biggest long-hauler complaint is fatigue, the second is often “brain fog” and neurocognitive issues. The most popular search topic among Body Politic members is “neurological problems.”
“I have a lack of concentration and I sometimes I have to re-read pages in a book or rewind a TV show I am watching,” said Callan, the jewelry designer.
“I’m definitely not as fast as I used to be and I’m not able to multitask like I used to, which is not good for my business. Some days it is so bad I can’t remember what I have done for the last four hours. I’m missing chunks of time in my days,” she said.
Could COVID-19 Increase the Risk of Dementia?
Researchers recently launched a two-year global study to understand the short- and long-term effects of COVID-19 on memory and mood disturbances, including how the infection may contribute to Alzheimer’s disease and other dementias.
Whether long-haul COVID cases will result in later-life cognitive decline is unknown and should be investigated, according to a report by the Global Council on Brain Health.
“I never would have guessed how much damage COVID could do to me … I think this virus has physically and mentally aged me more than 10 years.”
Dr. Rudy Tanzi, vice-chair of neurology and director of the Genetics and Aging Research Unit at Massachusetts General Hospital and an authority on brain health and Alzheimer’s (also a Next Avenue Influencer in Aging), recently published a paper looking at blood biomarkers from COVID-19’s impact on brain health. The research found as many as 55% of hospitalized COVID-19 patients have neurological disturbances three months after infection.
The findings “highlight the urgency of developing technology to diagnose, manage, and treat brain injury in COVID-19 patients,” the paper’s authors wrote.
Understanding the long-term consequences of COVID-19 on brain health will take time – likely years.
For many long-haulers, the more immediate concern is how they feel now. After a long, hard winter Callan is hoping for a spring awakening where debilitating symptoms of COVID-19 melt away.
“I never would have guessed how much damage COVID could do to me since I was pretty healthy before this happened,” she said. “I think this virus has physically and mentally aged me more than ten years.”
Sherri Snelling is a gerontologist, consultant and national speaker specializing in caregiver wellness. She is CEO and founder of Caregiving Club and author of A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care. Read More