Paris – They call themselves “long hauliers,” “long smugglers,” or simply survivors.
Some have been ill almost as long as the new coronavirus is known to have existed.
Six months after the virus began to burn worldwide, it becomes clear that COVID-19 causes far more symptoms than previously suspected.
Thousands of people of all ages have been sick for weeks or even months.
British forensic psychiatrist Jenny Judge began a disease odyssey in March with fever, cough, headache, and respiratory problems.
Since then, he has experienced waves of other symptoms including a racing heart, rashes, and “COVID toes” that itchy and ulcerated.
At one point he was so delusional that he heard his dogs speak, and was not particularly surprised.
“Now I’m going through an abdominal phase,” he said on day 111 of his ordeal.
More than 12 million cases of COVID-19 have been recorded worldwide with more than 550,000 deaths. Some six million people are listed as “recovered.”
But these figures do not tell the full story. A study of 143 recovered hospitalized patients in Italy, recently published in the JAMA Network, found that 87 percent still suffered from at least one symptom 60 days after getting sick.
Fatigue and respiratory difficulties were the most common.
The study follows research from the U.S. Centers for Disease Control and Prevention (CDC), which found that of 350 people surveyed about 60 percent of hospitalized patients and about a third of outpatients. they did not return to health 14 to 21 days after testing positive.
People leaving the hospital may need ongoing care for organ damage, injuries sustained during invasive oxygen therapy, or post-traumatic stress.
But those who have dealt with their illness at home often don’t have an explanation for their ongoing symptoms, and may face skepticism or disbelief from employers and doctors.
“I think these people feel very excluded and no one is taking care of them,” said Tim Spector, professor of genetic epidemiology at King’s College London, who is behind a large-scale symptom monitoring project.
“Some of them can have really debilitating fatigue.”
Some 3.8 million people in the UK have logged into the project app since its launch in March, while it also has more than 300,000 users in the United States and 186,000 in Sweden.
The researchers think that up to one in 10 of them still have symptoms after 30 days and some remain bad for months.
Spector, who estimates that there may be a quarter of a million people in the UK with a long-term illness, receives around 10 emails a day from people who are still sick and who feel that “no one is listening.”
Part of the problem is the wide variety of symptoms, many of which do not appear in official health advice.
“I used to be a rheumatologist and study very rare autoimmune diseases like lupus, which can affect any part of the body and can present themselves in different ways, but this is even weirder,” he said, adding that the app has identified 19 symptoms. up to this point.
“You can have people with skin problems. You can probably have people with diarrhea and chest pain. It’s really very unusual.”
COVID support groups are attracting thousands of members on social media and hashtags are trending in languages including Japanese, French, English, and German.
Many people who post to these groups say they have experienced disbelief from doctors or employers.
Those who got sick in March may face particular problems since the tests were scarce and they may not have clear evidence that they were ever infected.
Judge said that despite being a doctor, she has faced skepticism from her local hospital staff, and a doctor suggested her high heart rate could be anxiety.
She believes this is in part because hospital doctors are only coming into contact with patients whose initial symptoms were not deemed severe enough for emergency treatment.
But the 48-year-old man, who had no pre-existing conditions, said there could also be an element of denial at play.
“If you accept the person who looks like you, who is a doctor, who was taking every precaution, is ill for more than a hundred days in the future, that could be you,” he said.
The situation is improving, with new studies launched and an increasing number of people sharing their stories.
Paul Garner, professor of infectious diseases at the Liverpool School of Tropical Medicine, started a blog in the British Medical Journal out of frustration.
He had been sick for a month, but the health advice he had read online said the illness lasted only two weeks.
The 64-year-old man, who was previously fit and healthy, was tormented with headache headaches, shortness of breath, and a strange tingling in his arms and legs that he says is like the “fizz” of Sichuan peppercorns. .
At one point he thought he was losing consciousness: “I thought I was dying, that’s how scary it was.”
Garner said that one of the most difficult things about his illness has been “confusion” in his head and mood swings.
“This doesn’t happen to me, I don’t get depressed,” he said, adding that he had sought advice from a rehabilitation consultant, who said depression was a possible side effect.
“I was crying, but it helped me understand what was going on.”
Endured several false dawns. On day 45, after feeling better for a few days, Garner decided that he had finally removed the virus and examined the waters with a workout in his front room.
“Then bang! Monday: ‘I felt rotten all day as a result of exercise,'” he said, reading his journal. “It delayed me a week.”
With the help of the literature on MS (myalgic encephalomyelitis) and chronic fatigue, he devised a routine of physical or mental exercise interspersed with rest periods.
Speaking on the 96th day of his illness, Garner said he was gradually seeing improvement.
But she is concerned that vulnerable people may be pressured to try to return to work before they are ready.
“Everyone is obsessed with monitoring public health. But what about people who are sick and struggling and who don’t know what is going on?” he said.
It is still unclear whether the long-lasting symptoms are caused by the virus itself or by the body’s overly jealous immune reaction.
Spector said some of the long-distance carriers may still have traces of the virus in their systems, although it is not clear if they could still be infectious.
“There will be rapid tests soon at airports, does that mean they will never be able to travel, because they will be positive all the time?” he said.
Other diseases can also cause prolonged “post-viral” effects.
A 2009 study of 233 people who had been treated in the hospital for SARS, another coronavirus, found that four years after their illness, 40 percent reported suffering from depression or chronic fatigue.
“The implication for rehabilitation and adequate support for SARS / COVID-19 victims is obvious,” said Yun Kwok Wing, a professor at the Chinese University of Hong Kong, one of the authors of that study.
As we learn more about the new coronavirus, our perception of the risks of the disease may need to extend beyond the probability of dying.
Young people are even more likely to have a mild version of the disease, but Judge said they should also be aware that if they capture COVID-19 there is a possibility that they could be ill for months.
“It seems to be a kind of Russian roulette, we still don’t know what causes some people to get a longer illness,” he said.
“There is still a lot to learn.”
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