Six months after its onset in China, the list of symptoms caused by COVID-19 continues to grow and thousands of people of all ages still feel its effects after weeks or even months.
For Jenny Judge, a forensic psychiatrist in London, it all started in March, with fever, cough, headache and difficulty breathing.
To these “classic” symptoms were gradually added, in waves, heart palpitations, rashes with a burning sensation, auditory hallucinations and “Covid toes”, with lesions and itching.
“Now I’m in a digestive phase,” she explains to AFP, on the 111th day of her odyssey.
More than 12 million cases of COVID-19 have been recorded worldwide, resulting in approximately 550,000 deaths. Six million patients are listed as “cured”.
But that does not completely reflect reality.
According to a study of 143 Italian patients discharged from the hospital, published Thursday in the medical journal Jama Network, 87% still suffered from at least one symptom 60 days after the onset of the disease. Fatigue and difficulty breathing most frequently.
Another study published last week by the United States public health agency showed that of 350 people questioned two to three weeks after having tested positive, approximately 60% of the hospitalized patients and a third of the patients at home were not healed.
Organ damage in severe forms of COVID-19 or the sequelae of ICU stays may explain why people in hospital still need care.
However, patients who remain at home often have no explanation for these persistent symptoms and sometimes face the disbelief of their employers and doctors, particularly in the absence of a positive diagnostic test or if their symptoms do not come back. not in the official description of the health authorities.
“These people really feel neglected. Some people may feel very debilitating fatigue, ”observes Tim Spector, professor of genetic epidemiology at King’s College London, who is behind a large project to monitor COVID-19 symptoms.
3.8 million Britons downloaded the application launched in March, but also more than 300,000 in the United States and 186,000 in Sweden.
19 symptoms have been identified and up to 1 in 10 patients still have symptoms after 30 days.
Tim Spector estimates that 250,000 Britons could suffer from persistent COVID. He considers this disease “even more bizarre” than rare autoimmune diseases like lupus, which presents a wide variety of manifestations, which he studied when he was a rheumatologist.
“Some people just have skin problems, others have diarrhea and chest pain, it’s really very unusual.”
“It could be you”
Support groups bring together thousands of people on social networks and keywords have emerged in several languages, such as # apresJ20 and # apresJ60 in French.
Many say that it is difficult to be heard by the medical profession, in particular those who fell ill at the start of the epidemic, when few tests were carried out, and who therefore have no medical proof of their infection.
Even as a doctor, Jenny Judge says she faced skepticism at the hospital. A doctor suggested to her that her high heart rate could be due to anxiety.
She explains this in part by the fact that hospital doctors are only starting to see these patients arriving, whose symptoms have not hitherto been considered serious enough to justify follow-up in the hospital.
But this 48-year-old woman, with no medical history, also sees it as a part of denial.
“If you accept that a person who looks like you, who is a doctor, who has taken all the precautions, is still sick after more than 100 days, then it could be you,” she points out.
The situation is improving, however, as more studies are done on the subject and an increasing number of people share their stories.
Paul Garner, professor of infectious diseases at the Liverpool School of Tropical Medicine, started writing a blog in the British Medical Journal, frustrated that he was still sick after a month, when official reports said symptoms for two weeks.
He suffered from excruciating headaches, shortness of breath, tingling in the limbs and once thought he lost consciousness: “I thought I was dying, it was so scary”.
The hardest part was the confusion and the mood swings, says the 64-year-old doctor, who has been healthy so far.
He had false hopes several times, as on day 45 of his illness where, feeling better for a few days, he decided to play sports at home.
“Patatras! Monday: “I felt bad for the whole day as a result of training,” “he said in his diary.
Drawing on the scientific literature dealing with chronic fatigue syndrome, he developed a routine alternating light effort and rest.
Asked on day 96 of his illness, he spoke of a gradual improvement, but worried that vulnerable people could be under pressure to return to work before being ready for it.
It is not yet known whether these persistent symptoms are caused by the virus itself or by the body’s exaggerated immune response.
According to Tim Spector, some long-term patients still have traces of the virus in the body, but it is not known if this means that they are still contagious.
“There will soon be rapid tests at airports, does that mean that they will never be able to travel because they remain positive?”, He wonders.
A study published in 2009 on 233 patients with SARS, another coronavirus, showed that four years later, 40% of patients reported suffering from depression or chronic fatigue.
“The implications for rehabilitation and support tailored to victims of SARS or COVID-19 are obvious,” said Yun Kwok Wing, professor at Chinese University in Hong Kong, one of the authors of this study.
Young people, who are less at risk of developing or dying from a serious form of COVID-19, should be warned that the disease can also weaken them for months, says Jenny Judge.
“It is a kind of Russian roulette, we do not yet know what causes some people to have a longer illness,” she said.