For Jocelyne, the “descent into hell” happened in two stages. After initially getting the Sars-CoV-2 in December 2020, she spent an “exhausting” year. “I was very tired, I had trouble concentrating. Although I’m usually a positive, cheerful, dynamic, hyperactive person, I didn’t feel like anything anymore. It was impossible for me to do sports again, even though I used to do it for six hours a week,” she explains.
Difficult to diagnose
In spite of it all, she was still working, saw doctors who wrongly put her condition down to perimenopause. She started 2022 hopeful she would get better, but she got COVID a second time in January, despite two doses of the vaccine.
“I spent four awful days, and on the fifth, when I woke up, my mind went blank. I couldn’t speak, I couldn’t stand up, every nerve in my body was burning,” she says. She urgently got an appointment with a neuropsychiatrist. “She told me that a viral infection could cause neurological problems and that since I had had COVID twice, it was probably a long one.”
The diagnosis was later confirmed by an infectious disease specialist. “I did a lot of exams that showed that the virus had activated or reactivated several past infections, such as the Epstein-Barr virus, the dengue fever, and the Lyme disease, she adds. For the past three weeks, I have been taking a neuroleptic and a nerve medication usually given to patients suffering severe burns. I’m only able to speak to you thanks to this treatment.”
More than 200 possible symptoms
Doctor Yasmina Bensahli regularly faces such complex clinical cases since the opening of long COVID appointments in her clinic, in early 2022. With vaccines and emergency treatment helping to bring down the death rate, it is the effects of long COVID that is increasingly the focus of the medical community — and the patients, of course.
It is my only lingering symptom, but it is really crippling.
Specialized in internal medicine, Bensahli explains that “they are often desperate people, who have not been heard by their referring doctor and that have a range of symptoms altering their quality of life. Last week, I saw a 17-year-old girl who is in intensive foundation degree but can no longer study. She was very tired and had trouble concentrating.”
Doctor Bensahli also faces less complex cases. A 23-year-old patient’s sense of smell never returned after getting tested positive for coronavirus more than a year ago. “It is my only lingering symptom, but it is really crippling.”
The French National Authority for Health made the list of the most common long COVID symptoms: extreme tiredness, neurological disorders (cognitive, sensorial, headache), cardiac-chest problems (chest pain and tightness, tachycardia, dyspnea, cough), loss of smell or taste, as well as stomach pain and issues. But so far, more than 200 lingering symptoms have been listed, making diagnosis and care particularly complex. Doctor Bensahli explains, “It is a new disease for which we make a diagnosis of exclusion: We rule out all other options that could explain the symptoms before concluding it is a long COVID."
Painful and prolonged
Therefore, most of the people coming to the clinic for a consultation are then treated for one or two days as day patients. "The clinic has a very large technical platform with a lot of specialists, meaning that all the necessary examinations can be carried out in one place. The patients then see the referring doctor again for a report. This is a major step because they finally feel like they have been heard," emphasizes Director of Care Cathy Christmann.
Another pathology, like cancer, is sometimes detected. If the diagnosis of long Covid is finally established, patients are redirected, depending on the complexity of their condition, to their doctor, to specialists or to a specialized care center.
In Occitania, in the South of France, one of the three pioneering regions along with Ile-de-France and Brittany, 18 specialized centers have been accredited by the French regional health agency (ARS) for the management of long COVID, as well as six medical centers. Each department also has a post-COVID unit. "The objective is to improve the supply of care, quantitatively and qualitatively, for these patients whose journey has been painful and prolonged until now," explains Dr. Jérôme Larché, charged by the ARS to coordinate this action.
The long COVID's many symptoms can leave patients incacipated.
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Phantosmia rehab
The most important thing in structuring care is the training of primary care health care professionals. "The training of attending physicians in this new unknown pathology is essential. Many people suffering from post-COVID syndrome have suffered long months of imprecise diagnosis because they were not heard by their GP or by the occupational medicine. "If I agree to testify, confides Jocelyne, it is because there are many people who suffer and who are told that it is in their head. But it's not an invented disease!"
Doctors are helpless in front of this “unsettling” disease. “My doctor couldn’t do anything except telling me to take paracetamol. The last time I went to see her, she told me ‘Listen, you have long COVID, but I don’t know how to help,” Anik recalls.
The 42-year-old press secretary got COVID in October 2020. “I was weak, but not as if I had the flu. I recovered in ten days, and I didn't think I would suffer from any after-effects. But my smell didn't return and at Christmas, I started to detect very strong smells of rotten garlic, garbage, and tailpipes. I consulted an ENT specialist who confirmed that I was not hallucinating, that it was phantosmia. He prescribed olfactory rehabilitation."
A chronic illness
For Anik, phantosmia also marked the beginning of what she calls “COVID comebacks.” “Every two or three weeks, it was as if I got COVID again. I had stomach issues, chest tightness, joint pain, I had to take naps and go to bed at 8 p.m. with my son because I was so exhausted. My whole body was affected, as if I had been hit by a truck," she recalls. In between these episodes, Anik regained her shape and abilities, slept well, and was hopeful that she had put the disease behind her. "When it came back overnight, I was down, even morally, because I knew I had 10 days of fighting ahead of me."
There are many people who suffer and who are told that it is in their head.
Eventually, her "COVID comebacks" spaced out until July 2021. "In August, I met a woman in the Alps who gave me a traditional Chinese belly massage for almost two hours. It was as if she had freed me from all the pain with a deep cleansing and that was the end of the long COVID for me. Anyway, I haven't had COVID symptoms ever since. The only thing left is my smell, which I think I recovered at 70%," says Anik. "COVID took a year off my life," she retrospectively says. "Now that I'm better, I'm so happy to be able to wake up in the morning without any pain. I realized how valuable it is to be in good health."
Unfortunately, Dr. Larché has not seen many healings among his patients. "This is just my experience, but a study recently published in Nature Communications shows that after one year of follow-up, only 15% of patients are symptom-free. I think we're facing a new chronic disease," he laments. "But my experience also shows that an adapted treatment in a specialized center allows an improvement of the symptoms, a reduction of their intensity and a beginning of professional reintegration," he adds.
Rollercoaster ride
But she was deterred by the intensity of the program. "The days start with a one-hour walk, that's barely what I do in a week," she sighs. " Long COVID patients are on a rollercoaster ride, they can be off for two weeks, three weeks, a month … Every time, exhaustion is the issue. In this center, the program includes an hour of outdoor walking, exercise training, relaxation, pool activity and stretching, all interspersed with rest periods, check-ups with the nurses and lunch. This is obviously the theory, in practice everyone does its best," says Gilles Vallat, head of the rehabilitation staff.
"Each patient is different, and we always have to adapt, but with these long COVID, this is even more so. There is no norm, no standard protocol, it is a very complicated care," underlines Gilles Vallat. At the Pic Saint-Loup clinic, the composition of the team (pneumologist, cardiologist, physiotherapist, psychiatrist, psychologist, occupational therapist, dietician …) enables to take care of the patient "in his or her entirety," he insists. More than any other pathology, long COVID requires this multidisciplinary approach, due to its various symptoms.
This journalist, himself infected with long COVID for 18 months, laments the "persistent gap between theory and practice" while a bill was passed on Jan. 13, 2022 and a road map was launched on March 17, 2022. "France is one of the last countries not to have identified the long COVID patients. England has done it: 1,300,000 are recognized, classified according to their symptoms, taken care of … Between 10% and 30% of people who have had COVID are likely to develop a long one, but we want to stop with the statistics.”
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