NEW YORK (AP) – COVID-19 came early to Catherine Busa, and never really left.
The 54-year-old school secretary in New York had no latent health problems when she got the coronavirus in March and recovered at her home in Queens.
But some symptoms persisted: fatigue that she never experienced for years when she woke up at 5 am to work; pain, especially in the hands and wrists; an altered sense of taste and smell that made food unpleasant; and a growing depression. After eight months of suffering, she went to Jamaica Hospital Medical Center – to a specific clinic for post-COVID-19 care.
“I felt like I was in a kind of hole and I couldn’t see the bright side,” said Busa. She was not helped by visits to other doctors. But it was different at the clinic.
“They validated the way I felt,” she said. “It helped me to overcome everything I am fighting for.”
The clinic is one of dozens of such facilities that have emerged in the United States to address an intriguing aspect of COVID-19 – the effects that can doggedly afflict some people weeks or months after the infection itself has subsided.
The program’s approaches vary, but they share the goal of trying to understand, treat and give credit to patients who cannot get rid of the virus that has infected more than 24 million Americans and killed around 400,000.
“We know this is real,” said Dr. Alan Roth, who oversees the Jamaica Hospital clinic. He has struggled with body aches, fatigue and “brain fog” characterized by occasional forgetfulness since his own relatively light fight with COVID-19 in March.
Like so many other things in the pandemic, the scientific picture of so-called long-haulers is still under development. It is unclear how prevalent long-term COVID problems are or why some patients continue to suffer while others do not.
Current indications are that up to 30% of patients continue to have significant problems that intrude into daily life two to three weeks after the test is positive. Perhaps up to 10% still suffer three to six months later, according to Dr. Wesley Self, an emergency physician at Vanderbilt University and a researcher who co-wrote a July report Centers for Disease Control and Prevention.
Doctors have known for months that intensive care patients can face prolonged recoveries. However, many COVID-19 long-haulers have never been seriously ill.
At the post-COVID-19 clinic at the University of Texas Medical Branch in Clear Lake, patients range from 23 to 90 years old. Half have never been hospitalized, said the clinic’s director, Dr. Justin Seashore.
“They were told they should be feeling better, but they didn’t,” he said. Instead, they were left with fatigue, shortness of breath, anxiety, depression, difficulty concentrating or other problems they did not have before.
Some were told they would need oxygen for the rest of their lives. A highlight has been helping many of them get away with a treatment that could include respiratory physiotherapy, occupational therapy, mental health screening and more, said Seashore.
The long-term COVID-19 treatment was launched in settings ranging from large research hospitals like New York’s Mount Sinai, which has more than 1,600 patients, to St. John’s Well Child and Family Center, a network of clinics communities in southern Los Angeles.
Instead of focusing specifically on patients who still feel sick, St. John’s plans to schedule a physical exam, a behavioral health visit and monthly follow-ups with all the positive results at one of its clinics, said CEO Jim Mangia. Nearly 1,000 patients attended for exams.
Since Luciana Flores contracted the virus in June, she has struggled with back pain, stomach problems, shortness of breath and worry. The mother of three lost her job in a laundry in the midst of the pandemic and does not feel well enough to look for work.
St. John’s helped, she said, to diagnose and treat a bacterial infection in her digestive system.
“I think it is very important that other patients receive the same care,” said Flores, 38, through a Spanish interpreter. “I don’t feel the same way. I don’t think anything will be the same, but there is no other way around it: I have to move on. “
There is no proven cure for long-term COVID problems. But the clinics aim to provide relief, especially by giving patients a place to go if their regular doctor cannot help.
“We wanted to create a place where patients could get answers or feel listened to,” even though there are still unanswered questions, said Dr. Denyse Lutchmansingh, the chief medical officer of Yale Medicine’s Post-COVID Recovery Program.
In the Hospital of Jamaica program, patients receive mental health assessments, attention from a lung specialist and physical exams that further investigate their lifestyle, personal circumstances and sources of stress. Several hundred people have been treated so far, said Roth.
The idea is to help patients “build their own healing capacity,” said Dr. Wayne Jonas, former director of the Office of Alternative Medicine at the National Institutes of Health. He now works for the Samueli Foundation, a non-profit organization based in California that works with the hospital to marry alternative ideas with conventional medicine.
Long-haulers do exercise and diet plans and group or individual mental health sessions. Recommendations for supplements, breathing exercises and meditation are also likely. This in addition to any prescriptions, referrals or follow-up of primary care that are considered necessary.
“We’re not just saying, ‘It’s all in your head, and we’re going to throw herbs and spices at you,'” said Roth. Without an organized and proven response to the symptom complex, “we take a common sense approach and take advantage of the best in treating these people.”
Busa did a test that determined that she has sleep apnea, which causes people to stop breathing while sleeping and often feel tired when awake. She is receiving a device for this and is wearing bracelets and receiving injections to relieve her pain. Her program also includes psychotherapy consultations, supplements and new daily walking routines, riding an exercise bike and writing in a diary about the reasons she should be grateful.
Busa feels that she is doing well, especially in terms of humor, and gives credit to the clinic.
“There is light at the end of the tunnel,” she said, “and there are people and doctors out there who can relate to you.”