Trump meets with COVID-19 survivors, an overlooked group

President Trump on Tuesday met coronavirus survivors who counted their blessings and thanked the president for pushing an investigational drug for the virus, though scientists say it could be a tough road to full recovery for many patients who make it through a nasty bout of the new disease.

Even the people with success stories who trekked to the White House said they weren’t fully fit, with one former NFL player complaining of diminished lung capacity and one Arkansas woman saying she tested negative five days ago but is still only “85%” well.

“Stay away from me, please,” Mr. Trump said to laughter in the Cabinet Room.

Much of the public focus on COVID-19 has been on the awful death toll and the frantic scramble to test for the virus and provide acute care. But 465,000 people have officially recovered from COVID-19 worldwide, including more than 45,000 in the U.S., according to a Johns Hopkins University tracker.

For these survivors, there’s the upside of full or partial immunity to future infection. Yet patients who have made it out alive are writing op-eds and Twitter posts that suggest the road back to health is a rocky one fraught with breathing problems, anxiety and a struggle to regain their senses of smell and taste.

The pandemic could cause lifelong problems for those were vulnerable from the start.

“It’s not fun being in an intensive care unit. You lose muscle mass,” said Dr. William Schaffner, an infectious disease specialist at Vanderbilt University. “There are people, particularly older people or those who are particularly frail, who may not ever make it back to that same level of function of daily living in our society.”

While COVID-19 is new, the disease can lead to a well-documented condition known as acute respiratory distress syndrome (ARDS).

“We know a lot about the outcomes from that particular syndrome, which can be caused by COVID-19,” said Dr. Russell Buhr, a pulmonary and critical care doctor at UCLA Health. “We know the long-term survival from that can be lower.”

About 3% to 10% of COVID-19 patients appear to develop the syndrome, as the virus causes a profound immune response resulting in damaging inflammation. Typically about half of those who develop ARDS from any cause survive, but those people often require longer hospital stays or supplemental oxygen or even become candidates for lung transplants.

It’s not just the lungs, either. Viral infections can attack muscle cells in the heart, resulting in damaging inflammation.

A recent study of blood tests among 34 patients in Wuhan, China, where the pandemic started, found evidence that the new coronavirus attacks the liver, muscles, the gastrointestinal tract and lymph nodes.

Even among patients who survived, were discharged and tested negative twice, there were signs that certain physiological measures had “failed to return to normal” compared to healthy volunteers in the study.

“This finding indicates that these discharged patients, regardless of the severity of their previous symptoms, had not been fully recovered from the disease in the aspect of metabolism,” particularly liver function.

The authors said those patients will “still need better nutrition and care that would be very helpful for their faster and full recovery from the disease.”

The new coronavirus has genetic similarities to the Severe Acute Respiratory Syndrome (SARS) outbreak that devastated parts of Asia in 2002-2003. Experts say the research may offer clues to the post-COVID-19 world.

A study from 2009 found that nearly a quarter of former SARS patients had problems with lung capacity well after they got sick.

“Exercise capacity and health status were markedly lower than the general population at one year after illness onset,” according to the Research Fund for the Control of Infectious Diseases in Hong Kong.

COVID-19 survivors’ struggle to get back to 100% will be a factor that business owners and policymakers will confront as they try to get life back to normal.

“It’s not as simple as just trying to get people back to work quickly. You have to account for people who’ve gotten sick. Trying to get them back to work is going to be a challenge, too,” Dr. Buhr said.

A recent New York Times op-ed by Fiona Lowenstein — a writer, producer and yoga teacher — says that’s already a problem for those locked in the unseen struggle to recover.

“Some of the young people in my online support group are struggling to get more time off from work — they are, after all, supposedly recovered,” she wrote. “Almost all are experiencing mental health problems, including severe anxiety, panic attacks and depression, as they struggle to understand what’s next for them. In addition to the physical symptoms that still keep me up at night, I have frequent nightmares in which I am once again gasping for breath.”

She wrote that the news “is filled with uplifting stories of patients who have survived COVID-19 — including my own — but rarely do these narratives cover the long and jagged road to recovery that follows.”

Mr. Trump asked his guests Tuesday whether they felt back up to speed and, while many did, ex-NFL tight end Mark Campbell said he’s still about “95%.”

“The only thing is my lung capacity isn’t quite where it was,” Mr. Campbell said, saying it is harder to go for a jog.

Mr. Campbell and Democratic state Rep. Karen Whitsett of Michigan both said they recovered after taking hydroxychloroquine, a malaria drug that Mr. Trump has promoted as a potential game-changer in the COVID-19 fight.

“Had you not brought this to the forefront … I wouldn’t be here today to even have this conversation with you and talk about the needs of Detroit and talk about the people who really need this,” Mrs. Whitsett said.

Mr. Trump, who won Michigan in 2016 and is hoping to nab the state in November, joked there may be a political upside to the legislator’s story.

“I don’t see her voting for Sleepy Joe Biden,” Mr. Trump said.

Medical experts have said they would like to see more clinical trials of the drug to understand its impact on COVID-19 and possible side effects before declaring it a success story.

Hydroxychloroquine is part of a long list of investigation drugs being used across the country. Mr. Trump also has cited one by Gilead Sciences, remdesivir, as a promising treatment to get patients out of the hospital and back to full health.

“There’s a lot of science happening right now,” Dr. Buhr said. “A lot of studies on treatment and outcomes and we’re going to know a lot more a few months from now, just like we know a lot more now than we did in January.”