I’m a doctor studying devastating effects of long Covid. Now it’s ruining my life too
When Dr Allison Cohen began studying a new and mysterious illness in 2021, she never thought it would come after her.
But three years later, long Covid has upended her life so much that even a run or long drives make her ill.
Dr Cohen, an epidemiologist and long Covid researcher at the University of California San Francisco, said: ‘Long Covid for many, including me, is an energy limiting condition. That means that there are fewer hours in the day to do things, and there are more activities that are off limits.
‘I am restricted to doing things, socializing or meeting with folks.’
Her work and knowledge of long Covid is both a blessing and a curse.
On one hand, it helped her get diagnosed quickly, sparing her the confusion and repeated hospital trips so many patients have to suffer on their road to a diagnosis.
On the other hand, as an expert in the field she knows she’ll probably never get treated properly.
Fatigue among the public about the pandemic means research into long Covid is moving at a glacial pace and funding has dried up.
Yet for Dr Cohen and up to 17million Americans with the condition, every task—showering, chores, work, socializing—drains energy.
Dr Allison Cohen, an epidemiologist and long Covid researcher at the University of California San Francisco, never imagined Long Covid would upend her life, but three years later, even a run or long drives make her ill.
Dr Cohen says there’s often not enough energy to get through the day, making careful rationing essential. Some days, even one task feels impossible.
Long Covid has forced one in 10 Americans to stop working or reduce their hours, leading to higher rates of people with the condition being unable to pay their mortgage, buy food, and keep up with doctor visits.
Chronic fatigue is one of the most common symptoms of long Covid. About half of people with the wide-reaching condition meet the diagnostic criteria for chronic fatigue syndrome, according to researchers at Yale University.
It has severely limited Dr Cohen’s life, as it has millions of other former Covid patients. People have been made to put off social activities – jeopardizing friendships – and leave their jobs.
The fatigue made her ‘bone tired all the time… even after sleeping solidly through the night.’
Dizziness and brain fog are also common complaints.
Trouble finding words, remembering facts, difficulty concentrating, and following conversions are some effects of brain fog.
Between 20 and 30 percent of long Covid sufferers have reported brain fog as a symptom.
‘That can be described as the cognitive equivalent of trying to wade through shoulder-high mud,’ Dr Cohen said.
Long Covid can also affect the heart and lungs in the long term.
Many people with Covid, a respiratory disease, suffer long-lasting scarring that stiffens the lungs.
Scarring can make it harder to breathe, caused by inflammation that strikes healthy tissue and impairs the lungs’ ability to circulate oxygen throughout the body.
The lasting inflammation caused by long Covid also puts extra strain on the heart. It can exacerbate issues that people already have in their cardiovascular system.
For instance, scarring can cause arteries to stiffen even more than plaque build-up already has.
Among the most typical effects of Covid on the heart is postural orthostatic tachycardia syndrome (POTS). It causes the heart to beat abnormally fast, with many having a heartbeat of 120 beats per minute.
Inflammation damages small nerve fibers that dictate when blood vessels widen or constrict.
The blood vessels may not constrict properly in people with POTS. Instead, the heart rate increases even more than usual to compensate for these lazy blood vessels.
There have been millions of Americans diagnosed with long Covid, which causes symptoms that last for months or even years.
Long-term Covid can cause lasting changes to the immune system, making it weaker and making typical infections like Covid reinfection and flu more severe.
Long Covid has forced one in 10 Americans to cut work hours or stop working, leaving many unable to afford housing, food, or medical care
Dr Cohen said: ‘The only thing we know that makes long COVID worse is getting re-infected.
‘That means I work very hard to avoid reinfection. Since I was infected while wearing an N95 mask and being vaccinated, I know that one-way masking is insufficient protection for me.’
Given the general negative attitude toward masking, Dr Cohen does not feel entirely comfortable going out in public.
The latest research by Dr Cohen and her team on the antiviral Paxlovid, has yielded mixed results.
Five of the 13 people in the clinical trial experienced symptom relief, such as reduced brain fog after 15 days on the drug, whereas the rest didn’t see any lasting improvements.
Dr Cohen said: ‘We are about 5 years into the pandemic, and there are not yet any federally approved treatments for long Covid.
‘This is not a silver bullet, but it may help a lot of people in a meaningful way.’
With over 200 symptoms—ranging from dizziness to severe fatigue leaving people bed-bound — long Covid lacks a standard test or treatment, leading doctors to misdiagnose it as conditions like depression or asthma.
