ORLANDO, Fla. — On the rare occasions when Vero Beach resident Neal Passmore appears in public, he’s often the only person wearing a mask.
When are Passmore contracted COVID-19 in June 2020, and the virus took a toll on him: He was shivering, struggling to breathe, having palpitations and struggling to regulate his body temperature. He also experienced dissociation and memory loss, among other symptoms.
In the weeks and months following her infection, she noticed that some symptoms did not go away and some worsened. After five weeks, he was often disoriented, stuttering, and calling things by the wrong name: mailboxes became post offices, coconuts became pines, palm trees became pines.
Doctors eventually diagnosed damage to the optic nerve and brain.
His second round of COVID-19 in August 2021 worsened all his symptoms, especially his heart symptoms.
More than two years later, she still struggles with temperature regulation, rapid heart rate, ringing in the ears, dizziness and neurological symptoms. His ongoing cognitive issues made it impossible for him to return to his job as a Walgreens pharmacist. He is afraid of getting COVID-19 again.
“I had a very good job, lived as you would imagine, worked hard, worked for months and months, helping sick people every day,” he said. “Then I will be sick and blame!” That’s it. You don’t know if you can keep your… home and cars. Your life has definitely changed.’
Passmore’s COVID-19 is also known as prolonged COVID-19 or Post COVID condition.
The CDC estimates that one in five adults who become infected with COVID-19 may develop prolonged COVID-19, defined by the World Health Organization as having symptoms that last at least two months and are not associated with anything else in previously infected individuals. Common symptoms include fatigue, shortness of breath, and cognitive dysfunction, but the range is wide.
Now, as new, ultra-infectious subvariants of the omicron variant of COVID-19 are driving up the number of cases of COVID-19, advocates say it’s more important than ever to accelerate awareness and research into the cause and treatment of the condition.
“If in the future a significant portion of the population is suffering from long-term COVID at the same time, 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 are currently experiencing long-term symptoms of COVID-19, based on the 2022 Summer Household Pulse Survey and the U.S. Census Bureau’s 2020 population projections.
Other viruses can also cause symptoms that vary in severity or duration after people recover, Cyrus said.
“The only difference is that because of the scale of COVID, we’re looking at it closely because the impact is huge,” he wrote in an email.
Two years later, there are more questions than answers about the cause of the disease: Could a blood clot be cutting off blood flow to certain parts of the body? Does the coronavirus sometimes stick in certain areas? Could COVID cause chronic inflammation in some people’s immune systems? These are the three leading theories, researchers wrote in a June article in Science Magazine. Perhaps there is no single cause, but rather several factors working together.
There are also no proven treatments, said Dr. Irene Estores opened the UF Health COVID RESTORE (Recovery, Support, Education, Outreach and Research) Treatment Program in Gainesville in July 2021. This is one of the post-Covid care centers listed by Survivors Corp. (Washington State has options listed.)
Blinds attempts to treat conditions with similar symptoms.
He noted that the long-running COVID study is moving forward, albeit slowly.
“We know more about long-term COVID – about mechanisms and treatments – than two years ago. So we will continue to work,” Estores said.
It has a long waiting list. It takes a lot of time to see patients and also help them get disability insurance benefits.
“Patients need to understand that we want to help, but doctors need resources to be able to help,” Estores said. “It only requires commitment from physicians … It requires a concerted effort from health systems and governments.”
The National Institutes of Health announced a $1.15 billion RECOVER initiative in February 2021 to fund research into the condition, but the initiative has since been criticized for its slow pace and lack of transparency, according to a June Science article.
Many Blinds have had success and he highlights that. But he admits it’s easy to give up.
“I can understand why … they feel that way. My patients tell me how hard it is. I can see it,” Estores said. “… I can tell you, my patients who work with me on this, we’re going somewhere.”
Fear of re-infection
Danielle Jordan, 21, of Coral Gables, said the chronic, often unexplained symptoms and lack of proven treatment for COVID-19 can make the long haul seem hopeless.
Jordan contracted COVID-19 at a healthy 19-year-old. For the next three months, he could not walk without pain, could not taste or smell clearly, and could not regulate his rapid heart rate. Although many of the symptoms have disappeared, he still suffers from parosmia and dysgeusia: smell and taste are impaired.
Jordan’s mental state is also recovering.
“I wanted people to be aware of the long term covid and its impact on a person’s mental health. It’s a very lonely place if no one is around you going through what you’re going through,” Jordan wrote in an email. “… It was horrible.”
When the University of Miami student contracted the virus again in September 2021, she panicked several times a day for fear of testing positive again.
Brian Hartin, who suffered from low energy, brain fog and depression, said he was 80% cured of his long-lasting COVID after two years. He is working again, although in a lower position than before, because his health is still uncertain.
The 37-year-old Lakeland resident, like Jordan, wants to get better and fears contracting COVID again.
Their fears are not unfounded.
The longer a person contracts COVID-19, the more likely they are to develop new health problems, St. Louis Health System researchers said in a draft study involving more than 5.6 million people. It is currently awaiting peer review.
Others have moved away
However, Hartin doesn’t share the concerns others have about COVID-19.
A few weeks ago, he overheard colleagues joking that they were so burned out that they wanted to catch COVID as an excuse to take time off.
“I was like, really? You don’t want to put what happened to me in your head and you’re just talking about it,” Hartin said.
Doctors also dismissed Hartin because there was no clear cause for his symptoms.
“A lot of times you go to the doctor or the emergency room and they tell you everything’s fine, you know, there’s nothing wrong with you, and of course that’s not true because I wouldn’t feel it. If something’s wrong, I feel the same way.” , – he said.
Some doubt that COVID has been around that long. Jeremy Devine, a resident psychiatrist at McMaster University in Hamilton, Ontario, wrote in an article for the Wall Street Journal that prolonged COVID-19 is often attributed to mental health problems.
Jeremy Redfern, a spokesman for the Florida Department of Health, tweeted. “Prolonged COVID = Anxiety” In June, from his private office to the House subcommittee on the coronavirus crisis.
Both faced swift backlash from doctors, psychiatrists, other mental health professionals and activists.
Passmore said that for their sake and his own, he hopes the general public takes the long run of COVID and the current wave seriously.
“Maybe the new options won’t kill as many people, but they still have a lot of risks,” he said.
Resources are growing
In the meantime, there are resources for those already struggling, many of whom are long-term COVID-19 patients.
The Estores program is accepting new patients who can call 352-265-9355 to indicate they are seeking long-term treatment for COVID-19. He said patients have to wait on waiting lists at his clinic and others.
Other post-COVID-19 care centers and contact information can be found on the Survivors Corps website, a patient advocacy effort.
Support groups have also sprung up, such as Long Haulers Support on COVID-19 Facebook.
The Patient-Led Research Collaborative, a group of long-standing COVID-19 researchers, also has resources.