They call themselves “long-haulers”, “long-tailers” or simply survivors.
Some have been sick for almost as long as the new coronavirus has existed.
Six months after the virus began to make its way across the planet, it becomes clear that COVID-19 is causing far more symptoms than previously thought.
Thousands of people of all ages stay sick for weeks or even months.
British forensic psychiatrist Jenny Judge started an illness odyssey in March with fever, cough, headache and respiratory problems.
Since then, she has had waves of other symptoms, including a heartbeat, burning rashes, and “COVID toes”, which were itchy and sore.
At one point, she was so delusional that she heard her dogs talking and was not particularly surprised.
“Now I’m going through an abdominal phase,” she told AFP on day 111 of her 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 numbers don’t tell the whole story.
“They feel excluded”
A study of 143 hospitalized patients recovered in Italy, published in the journal JAMA Network on Thursday, found that 87% still suffered from at least one symptom 60 days after falling ill.
Fatigue and difficulty breathing were the most common.
This follows research published last week by the United States Centers for Disease Control and Prevention which found that of the 350 people surveyed, about 60% of hospital patients and about one-third of outpatients had not returned to health 14-21 days after being tested positive.
People leaving hospital may need ongoing care for organ damage, injuries from invasive oxygen therapy or post-traumatic stress.
But those who have coped with their illness at home often have no explanation for their persistent symptoms and may face skepticism or outright disbelief from employers and doctors.
“I think these people feel very excluded and no one is looking after them,” said Tim Spector, professor of genetic epidemiology at King’s College London, who is behind a follow-up project. large-scale symptoms.
“Some of them can have really debilitating fatigue.”
About 3.8 million people in the UK have signed in to the app since its launch in March, while it also has more than 300,000 users in the United States and 186,000 in Sweden.
Researchers believe that up to one in ten of them still show symptoms after 30 days and some remain ill for months.
Spector, who estimates that a quarter of a million people in the UK suffer from a long-term illness, receives around 10 emails a day from people who are still sick and who feel “no one is listening to them”.
Part of the problem is the wide variety of symptoms, many of which do not appear in official health advice.
“I was a rheumatologist and I studied very rare autoimmune diseases like lupus which can affect any part of the body and can present themselves in different ways – but it’s even more bizarre,” he said. he said, adding that the app has identified 19 symptoms so far.
“You can have people who just have skin problems. You can probably have people who just have diarrhea and chest pain. It’s really very unusual.”
COVID support groups attract thousands of members to social media and hashtags are popular in languages such as Japanese, French, English and German.
Many people posting to these groups say they have been incredulous on the part of doctors or employers.
Those who fell ill in March may face particular problems as tests were scarce and they may have no clear evidence that they have already been infected.
The judge said that even though she is a doctor, she faced skepticism from staff at her local hospital, with a doctor suggesting that her high heart rate could be anxiety.
She believes that this is partly due to the fact that hospital doctors have only just come into contact with patients whose first symptoms were not considered serious enough for emergency treatment.
But the 48-year-old, who had no pre-existing conditions, said there may also be an element of denial at play.
“If you accept the person who looks like you, who is a doctor, who took all the precautions, who is sick for more than a hundred days – it may be you,” she said.
“Sick and in trouble”
The situation is improving with the launch of new studies 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 indicated that the illness had only lasted two weeks.
The young 64-year-old man, in good physical shape and in good health, was tormented by blinding headaches, shortness of breath and a strange tingling in the arms and legs which, according to him, resemble the “fizziness” of grains of Sichuan pepper.
At one point, he thought he was losing consciousness: “I thought I was dying, that was how scary.”
Garner said one of the most difficult things about his illness was the confusion in his head and his mood swings.
“It doesn’t happen to me, I’m not depressed,” he said, adding that he sought advice from a rehabilitation consultant, who said that depression was a possible side effect.
“I was just in tears, but it helped me understand what was going on.”
He endured several false dawns. On day 45, after feeling better for a few days, Garner decided that he had finally cleared the virus and tested the waters with a workout in his front room.
“So bang! Monday: ‘I felt rotten all day as a result of the exercise,'” he said while reading his newspaper.
“It made me go back a week.”
With the help of the literature on ME (myalgic encephalomyelitis) and chronic fatigue, he designed a routine interspersed with light physical or mental effort with periods of rest.
Speaking to AFP on the 96th day of his illness, Garner said he was gradually seeing improvement.
But he is concerned that vulnerable people may be forced to try to return to work before they are ready.
“Everyone is obsessed with controlling public health. But what about sick and troubled people who don’t know what’s going on?” he said.
It is not yet clear whether the lasting symptoms are caused by the virus itself or by the body’s excessive immune response.
Spector said some of the long-haul flights may still have traces of viruses in their systems, although it is unclear whether they could still be infectious.
“There will soon be these rapid tests at airports, does that mean that they will never be able to travel, because they will be positive all the time?” he said.
Other diseases can cause prolonged “post-viral” effects.
A 2009 study of 233 people who had been treated in 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 appropriate support for the victims of SARS / COVID-19 is obvious,” said Yun Kwok Wing, a professor at the Chinese University of Hong Kong who was one of the authors of this 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 the judge said that they should also be aware that if they get COVID-19, there is a chance that they may be sick during months.
“It seems to be some sort of Russian roulette type thing, we don’t know yet what makes some people have a longer illness,” she said.
“There is still a lot to learn.”
(With the exception of the title, this story was not edited by GalacticGaming staff and is published from a syndicated feed.)