ORLANDO, Fla. — On the rare occasions that Vero Beach resident Neil Passmore goes out in public, he’s often the only one wearing a mask.
When Passmore caught COVID-19 in June 2020, the virus hit him hard: he was shaking with chills, struggling to breathe, his heart was racing and he was struggling to regulate his body temperature. He also suffered dissociation and memory loss, among other symptoms.
In the weeks and months following his infection, he noticed that some symptoms did not go away and some worsened. After five weeks, he was often confused, stuttering and calling things by the wrong name: mailboxes became post offices, coconuts became pine cones, palm trees became pines.
Doctors eventually found damage to the optic nerve and brainstem.
Her second round of COVID-19 in August 2021 made all of her symptoms worse, especially her heart symptoms.
More than two years later, he still has trouble regulating his body temperature, rapid heartbeat, tinnitus, dizziness and neurological symptoms. His persistent cognitive problems prevent him from returning to work as a pharmacist at Walgreens. He is terrified of contracting COVID-19 again.
“I went from having a really good job, living like you’re supposed to, working hard…for months and months, helping sick people every day,” he said. “So I get sick, and blam! That’s it. You don’t know… if you’re going to be able to keep your house and your vehicles. Your lifestyle has definitely changed.
Passmore has a long COVID, also known as long-haul COVID-19 or post-COVID condition.
The CDC estimates that up to one in five adults who catch COVID-19 may develop long COVID, defined by the World Health Organization as symptoms in previously infected people that last at least two months and cannot be attributed to nothing else. Common symptoms include fatigue, shortness of breath, and cognitive dysfunction, but the range is wide.
Now, as new ultra-infectious subvariants of the COVID-19 omicron variant increase COVID-19 cases, proponents say it’s more important than ever to ramp up awareness and research the origins and the disease treatment.
“If in the future a significant portion of the population suffers from COVID and long-distance COVID simultaneously, it will be an extraordinary financial burden for everyone,” said Elena Cyrus, an infectious disease epidemiologist and assistant professor at the University. of Central Florida. .
More questions than answers
An estimated 1.5 million adults in Florida currently have symptoms of long-term COVID-19, based on a Summer 2022 Household Pulse Survey and 2020 population estimates from the US Census Bureau. .
Other viruses can also cause symptoms that persist after people recover, varying in severity or duration, Cyrus said.
“The only difference is that due to the scale of COVID, we are looking at it more closely, due to the massive impact it can have,” she wrote in an email.
Two years later, there are still more questions than answers about the origins of the disease: Could tiny blood clots cut off blood flow to certain parts of the body? Does the coronavirus sometimes persist in certain regions? Could COVID throw some people’s immune systems out of whack, causing chronic inflammation? Those are three main theories, researchers told Science Magazine in a June article. In all likelihood, there is no single cause, but rather several factors working together.
There are also no proven treatments, said Dr. Irene Estores, who opened the UF Health COVID RESTORE (rehabilitation, support, training, outreach, and research) treatment program in Gainesville in July 2021. That’s among post-COVID care centers listed by Survivors Corp, a grassroots patient advocacy effort. (Washington State has options included in the list.)
Estores is trying treatments for conditions with similar symptoms.
She points out that the long COVID research is progressing, albeit slowly.
“We know more about long COVID – both the mechanisms and the treatments – now than two years ago. So we keep working,” Estores said.
She has a long waiting list. Seeing patients takes time, as does helping them apply for disability benefits.
“Patients need to recognize that we want to help, but doctors need resources to be able to help,” Estores said. “It will take more than just a commitment from physicians… It requires a concerted effort from health systems and government.
The National Institutes of Health announced a $1.15 billion initiative, RECOVER, in February 2021 to fund investigations into the disease, although since then the initiative has been criticized for being slow and lacking in transparency, reports an article from June Science Magazine.
Many of Estores’ patients have made progress, and she points that out. But she acknowledges that it can be easy to give up.
“I can understand why… they feel like that. My patients tell me how difficult it is. And I can see it,” Estores said. “…I can tell you that my patients who continue to work with me on this, we’re going somewhere.”
Terrified of reinfection
Faced with often inexplicable chronic symptoms and no proven treatment, having COVID-19 for a long time can feel hopeless, said Danielle Jordan, 21, of Coral Gables.
Jordan caught COVID-19 at the healthy age of 19. She couldn’t walk without pain, taste or smell accurately, or regulate her rapid heart rate for the next three months. Although many symptoms have subsided, she still suffers from parosmia and dysgeusia: distorted smell and taste.
Jordan’s mental state is also on the mend.
“What I would like people to know about long covid is the effects it can have on mental health. It’s a very lonely place if no one around you is going through what you’re going through,” Jordan wrote in an email. “…It was awful.”
When the University of Miami student was exposed to the virus again in September 2021, she had panic attacks several times a day for fear of testing positive again.
Brian Hartin, who suffered from low energy, brain fog and depression, says he recovered to about 80% from a long COVID after about two years. He is working again, but in a lower position than the one he held before because his state of health is still unpredictable.
The 37-year-old Lakeland resident, like Jordan, is desperate to get better and is afraid of catching COVID again.
Their fears are not unfounded.
Saint Louis Health Care System researchers have found that each time someone catches COVID-19, their risk of new health problems may increase, according to a study project of more than 5.6 million people. It is currently awaiting peer review.
Others have moved on
However, Hartin doesn’t feel the same concern he has about COVID-19 in others.
A few weeks ago, he overheard co-workers joke that they were so exhausted they wanted to catch COVID just as an excuse to take time off.
“I was like, really? You don’t want what happened to me to happen to you, and you talk about it so casually,” Hartin said.
Doctors also discharged Hartin because there is no clear cause for his symptoms.
“There’s only so many times you can go to the doctor or go to the ER and they tell you it’s fine, you know, and there’s nothing wrong with you, and obviously that’s not true, because I wouldn’t feel the way I feel if there wasn’t something wrong,” he said.
Some doubt the long existence of COVID. Jeremy Devine, a resident psychiatrist at McMaster University in Hamilton, Ont., wrote a Wall Street Journal op-ed suggesting that the long COVID-19 can be explained in most cases by underlying mental health issues.
Florida Department of Health spokesperson Jeremy Redfern tweeted: “long COVID = anxiety” from his personal account to the House Special Subcommittee on the Coronavirus Crisis in June.
Both faced swift reactions from doctors, psychiatrists, other mental health professionals and activists.
Passmore says that for their sake and his own, he hopes the general public will take the long COVID and current wave seriously.
“Maybe the newer variants don’t kill as many people, but they still carry a lot of risk,” he said.
In the meantime, for those already struggling, there are resources, many of which have been established by long COVID-19 patients themselves.
Estores’ program is accepting new patients, who can call 352-265-9355 and specify that they are seeking long-term COVID-19 treatment. She said patients should expect a waiting list at her clinic and others.
Other post-COVID-19 care centers and their contact details can be found on the website of Survivors Corps, a grassroots patient advocacy effort.
Support groups have also sprung up, such as COVID-19 Long Haulers Support on Facebook.
The Patient-Led Research Collaborative, a group of researchers with a long history of COVID-19, also has resources.