For many COVID-19 patients, including Texas woman, the road to recovery can be long
It’s been nearly two months since Lorenza Rodriguez tested positive for COVID-19, but her symptoms have not gone away.
The 48-year-old homemaker in southeast Arlington tested positive for COVID-19 on July 17. By that time, she had lost her sense of smell and was experiencing severe body aches, fatigue and gastrointestinal problems.
Two of her children, who also contracted the virus, experienced similar symptoms but in a few weeks they were back at work and feeling healthy for the most part.
Rodriguez, on the other hand, has not recovered her sense of smell and continues to struggle with chronic fatigue and brain fog.
“I don’t know why but when I’m praying, I start to count for no reason. It’s very strange because I don’t even notice when I start counting,” she said in Spanish. “I worry that my mind is still not doing well.”
For many COVID-19 patients, the road to recovery can be long. Doctors and researchers have found that a growing number of people’s symptoms can stretch for months, while others are left with serious lasting organ damage and debilitating ailments.
But a lack of testing and understanding on the lingering effects of COVID-19 could mean millions of Americans will go undiagnosed or be dismissed because of their race or access to healthcare.
Longhaulers
Fiona Lowenstein became sick on March 13. The 26-year-old writer, speaker and TV producer from New York City assumed she would recover quickly after being dismissed from the hospital for COVID-19. She never expected to remain symptomatic until early June.
In those early months there was a lack of information about how COVID-19 could attack almost every system of the body, Lowenstein said during a webinar hosted by the Center for Health Journalism earlier this month.
“I was reading the news constantly looking for stories that mirrored my experience,” she said. “I realized the mainstream media narrative of COVID-19 was neglecting the nuances of what was actually a very diverse patient experience.”
In March, Lowenstein wrote an op-ed for the New York Times about her experience and began connecting with COVID-19 patients all around the world. Later that month she launched the Body Politic COVID-19 Support Group.
The online community has provided emotional support and resources to more than 4,000 COVID-19 patients. The group aims to connect COVID-19 patients experiencing long-term symptoms and make the conversation about the health crisis more inclusive of those battling the virus, according to their website.
Many of the group members describe themselves as longhaulers. A longhauler is a COVID-19 patient who has experienced COVID-19 related symptoms for more than 30 days. The symptoms reported by longhaulers are varied and can be both physical and mental. Many in the group report brain fog, depression and anxiety while others report back pain, inflammation and chronic fatigue.
“We’ve seen this in past pandemics and in past disease outbreaks,” Lowenstein said. “The reason that we’re not as aware of it is because those people typically just get left behind and forgotten. We’re all hoping it doesn’t happen this time around.”
Post COVID-19 Syndrome
A study published in June by the School of Medicine and Manchester Academic Health Sciences Centre at Manchester University in the United Kingdom found that some COVID-19 patients are likely to experience long-term adverse effects resembling chronic fatigue syndrome that could take up to 20 months to overcome.
Chronic fatigue syndrome, also known as myalgic encephalomyelitis, is a disorder characterized by extreme fatigue or tiredness that doesn’t go away with rest and can’t be explained by an underlying medical condition.
The causes of ME/CFS aren’t fully understood, but some doctors say it could be a symptom of a post-viral infection, psychological stress or a combination of the two.
David Tuller, a senior fellow in public health and journalism at UC Berkeley’s Center for Global Public Health, has been studying ME/CFS since 2015.
“We know almost nothing about (ME/CFS) because it’s been ignored,” Tuller said. “Many of the people with ME have just been told, ‘Oh go get exercise, you’re just deconditioned, or go get psychotherapy. You think you have this illness but you don’t really.’”
He said most of the studies on ME have been done in Europe and the UK where doctors are studying what is now being called Post COVID-19 Syndrome in real time. He said he hopes U.S. doctors and researchers also step up to the challenge because if they don’t, millions of affected people could go undiagnosed.
Because COVID-19 has disproportionately affected people of color, minorities are at a higher risk of being undiagnosed, according to Tuller.
At a higher risk
Lorenza Rodriguez went out for a stroll in the park recently near her home in Southeast Arlington, but after a few minutes she started feeling dizzy and was having trouble breathing.
“I had to sit down and come back home,” she said. “I think it’s because I’ve been locked in my house for so long.”
Her doctor suggested she maintain a low-calorie diet, keep tabs on her blood-sugar levels and continue taking her diabetes medications but never mentioned anything about post viral syndrome or ME/CFS.
ME/CFS was historically thought to be most common among white women of higher socio-economic status. However, some recent studies suggest the prevalence is actually higher in some minority ethnic groups, according to a 2009 review published in the International Journal of Epidemiology.
The review found that minority ethnic groups with CFS experience more severe symptoms and may be more likely to use religion, denial and behavioral disengagement to cope with their condition compared with white people.
Haider Warraich, a cardiologist and clinical researcher at Brigham and Women’s Hospital and Harvard Medical School, said a major problem with people of color and other minorities has always been access to medical care.
Many COVID-19 patients have been experiencing heart inflammation, or myocarditis, months after they first showed symptoms, but most of the cases reported so far involve athletes.
“The reason is very simple,” said Warraich. “These are the people who have access to the greatest resources.”
He said if everyone with COVID-19 were getting MRI’s, we would see that this condition would be in fact more common. He said the research response to longhaulers during the COVID-19 pandemic has revealed that our healthcare infrastructure and systems are broken.
He said the U.S. lags behind other countries in generating knowledge about patients with COVID-19.
“Unless we follow patients and establish a system, we are at risk of missing patients, many who may be marginalized to begin with,” he warned.
This story was originally published September 14, 2020 at 5:00 AM.
