“I’m staying alive, but it’s not life”: active or on sick leave … they tell the galley about the long Covid

Three years after the appearance of the first official cases of Covid, on January 24, 2020, in Paris and Bordeaux, the epidemic has moved into the background of the news. Not for those suffering from a severe form of prolonged Covid. Like Claire, 43, headteacher in western Occitanie and Sylvie, 58, carer at the Pic-Saint-Loup clinic in Hérault, two of the long-term victims of the disease. They are 400 in the region: mainly women (70%), 47 years old on average, active for 70% of them and still on sick leave for 45%, or reduced (27%).

“I feel like I’m in an 80-year-old woman’s body” : For Sylvie C. still available for Midi Libre, nothing has really changed since October 2020, the side effects of Covid then receded. Two years in which the 58-year-old carer, stationed at the Pic Saint-Loup clinic in Hérault, has not worked.

“February 1 will be my year-long Covid ‘birthday'”also says Claire, who confided her despair last November: “Nothing Says It Ends One Day”.

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The two women are the face of the 400 victims of severe forms of Covid long. The figure is the result of a patient survey in Occitanie, the fruit of care coordination work with 24 care institutions marked for one year. He delivers his first lessons as France enters its fourth year of living with the epidemic: the first cases of the “Chinese virus”, as it was then called, were officially reported on January 24, 2020 at Bordeaux University Hospital and in Paris.

Today the epidemic is not over, the acute crisis, yes. The time for chronic illness drags on.

“I’m staying alive, but that’s not how life is”

“It is estimated that every tenth patient has a long Covid, i.e. two million French people. In Occitanie, 1000 people have contacted the network, 400 patients suffering from a complex form of long Covid are now listed”indicates Dr. Jérôme Larché, coordinator of the regional system and referent Covid long, a problem “rather inconspicuous, the ‘north side’ of the mountain” when the peak of the epidemic has passed, with an impact “medical, societal, social”.

Figures, perspective… where is the epidemic?

Every day 50 people still die from Covid in hospital in France. Epidemic numbers are falling: In France, the incidence rate (number of cases per week per 100,000 inhabitants) is now 56, just above the alert threshold (50), and 59 in France, Occitanie. In the region, only Lozère (35) and Hérault (47) show a figure of less than 50. The test positivity rate is 6.8, “R”, the marker of the dynamics of the epidemic, is at 0.54. Hospital tension has fallen by 20.7%.

A profile of the most affected people can now be established: “They are mostly women. They have an average age of 47, 70% are active. When they enter the system, 45% have time off from work, 27% say they are reduced to exercising their profession”.

out of 200 listed symptoms, each of the patients presenting about ten, with a trio of headache, fatigue, dyspnoea (shortness of breath), neuro-cognitive disorders.

“I’m staying alive, but that’s not how life is”testifies Claire, school principal, married and mother of two teenagers aged 14 and 17, who saw the first symptoms appear after a second Covid infection in January 2022. After following a classic rehabilitation, from rehabilitation to intervention, and exploring many parallel paths, she has followed a new trail for five weeks, the “aggressive rest”in the dark, without reading or a screen, as soon as she feels she is weakening: “I had a lot of discomfort after training, “crashes” that made me dizzy for several days. Today, as soon as I get tired, I stop everything.”. A walk, a meal, cleaning…

Result : “If I can’t go up the slope, I won’t go down it again”notes the fortysomethings who have not found a social or family life. “At Christmas I went to bed between all the courses and I kept the mask on at the table, I was so scared at the thought of catching Covid again”she remembers.

Irritation can trigger discomfort, “my breathing stops when I hear bad news”. She does not miss it: the recognition of a long-standing devotion has already been denied to her: “There is not much in your file“, the expert doctor told him.

“You know ma’am, fatigue is everyone”

“Fortunately, my children are adults”, breathes Sylvie Cenatiempo, caregiver, stopped for two years. Two long years marked by several health problems, her back is blocked, her memory fails, her body itches, headaches invade her, she comes out of serious intestinal problems… “I don’t go and see my colleagues anymore, it’s heartbreaking. I don’t want to end my career like that. But today I’m exhausted when I do a little housework or when I throw the ball to my dog. I loved to sing, laugh , silly, it’s over”.

To those who blame him “to do nothing, to let myself go through the motions”, she now replies that she is ready to “switch bodies”. The other day, her doctor’s replacement told her, “You know ma’am, fatigue is all…”

Sylvie Cenatiempo is in long-term love until March.

“Long Covid is not yet recognized as a chronic disease, there is no specific long-term condition… it is possible to get recognition, but complicated”says Jérôme Larché.

“The regional study will continue until May 2023. The follow-up should make it possible to refine the results and assess in particular the effect of rehabilitation”, says the doctor. Knowing that between the first symptoms and the care it is necessary to wait six to nine months and the demand does not weaken: “It feels like there are less long Covids with the Omicron variant than with Delta, but you have to remember that there are more people who are vaccinated, that vaccination makes the probability of having a long Covid decrease by 20% , but at the same time Omicron. has mutated a lot, there are cases of re-infection… the situations, the doctor concludes, become more and more complex. The challenge is the same, it’s a matter of not getting polluted even today, because reality doesn’t disappear when you’re no longer in the headlines.

Mircea Sofonea, epidemiologist: “I’m afraid we’re missing the opportunity to put things in place”

Mircea Sofonea is a lecturer in epidemiology and evolution of infectious diseases at the University of Montpellier.

You have followed the Covid epidemic step by step for three years, where are we today?

We try to use this experience to prepare for the future, for new pandemics. But I have the fear that we will move on and miss the opportunity to put things in place.

Regarding Covid, is it time to move on?

The issue of variants is still relevant, we know today that there will be several waves of Covid per year. Hospital indicators are no longer worrying. And we no longer have any reason to focus on the question of, for example, the health card. But we could have planned for the long term because we know the inertia of organizations in a crisis situation.

The question could have been a main theme for the presidential election, for the parliamentary election. But there was the war in Ukraine… We had the opportunity to make a deal with the future, to initiate restructuring to avoid making the same mistakes. What to do with the screening strategy, for example in France? We no longer look at waste water, we no longer shield… the longer time goes by, the more diffuse it becomes. Are we ready to redistribute masks tomorrow? To impose distance, close borders?

We have seen, with the monkeypox crisis, which fortunately turned out to be less worrying than it might have been, that things could still be improved

We have not learned the lesson of this crisis until the end, will we make the same mistakes again in the event of a new pandemic?

Covars (the Committee for the Monitoring and Anticipation of Health Risks) has nevertheless been set up. Its calling is to anticipate, it should not just be a selection, it should be part of a dynamic.

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