“To sum up it’s walking difficulties, inability to run, brain fog, tremors. It’s a destroyed life.” Contaminated since October 2020, Matthieu Lestage has been suffering from the symptoms of a long Covid for two and a half years. Described by doctors as a syndrome and not as a disease, long Covid is a set of symptoms linked to the Covid-19 virus, which persist after several weeks of contamination.
“After three weeks, I went to the hospital for a suspected pulmonary embolism, because of which I almost died in my car. But in fact, the same evening, the doctor was going to send me away. For the simple and good reason that I was 42 years old, I was athletic, I had no medical history, in short, there was nothing. And in November 2020, the hospitals were saturated, I did not check any box for to be hospitalized. And so the same evening, I was let go”, says this father of two children.
Disabling symptoms on a daily basis
It was ultimately not a pulmonary embolism but what is called a “cytokine shock”, an explosion of the body’s immune response. And since then, Matthieu has been fighting with the scars left by the virus and this reaction. He describes very disabling symptoms on a daily basis: extreme fatigue, shortness of breath at the slightest action and trouble concentrating. Faced with medical wandering, Matthieu Lestage joined the association of patients with long Covid, After J20, of which he became the spokesperson. He is now fighting for better care and better recognition of the syndrome.
According to Public Health France, the long Covid would affect nearly two million French adults, without specifying the number of children potentially affected. A A report from the Ministry of Health dating from the beginning of 2022 estimated that of all the people identified who had contracted Covid-19, 10% would present persistent symptoms more than three months after their contamination. And for three years, this unpredictable syndrome has ravaged the lives of thousands of people.
“I thought it was a formality”
This is also the case of Adèle, 38 years old. Despite a vaccination, she contracted Covid-19 in March 2022. “I thought it was a formality, that I was going to have a kind of cold like my friends. But in fact it put me completely on the ground” , she describes. “I was unable to stand up, I couldn’t carry my children and I had vision problems.” The weeks pass and Adèle’s condition does not improve. The diagnosis is difficult, it takes several months to decide to make an appointment with her doctor. He prescribed corticosteroids to help him with his fatigue and shortness of breath, without offering him extensive support at the time.
Since this treatment is no longer enough for her, she ends up applying for treatment, with the help of her doctor. But faced with too much demand, his file was refused at the Foch Hospital, then at the Raymond-Poincaré Hospital, this time because his condition was “too advanced” to be able to follow the support program. She will finally get a place at the end of February 2023, one year after her contamination.
Post-Covid support cells, a solution?
Also according to the same report from the Ministry of Health, it has existed since January 2022 at least 130 post-Covid coordination cells. These are accessible by patients thanks to a first favorable medical opinion, via the networks set up by the regional health agencies (ARS) or directly by contacting the hospitals which organize them.
These support programs consist of physiotherapy exercises, adapted physical activities and neuropsychological follow-up over six weeks. “The device offers patients a week of initial multidisciplinary assessment to take stock of their walking ability, their respiratory capacity, their level of endurance. Added to this is a cognitive and neuropsychological assessment, before starting rehabilitation This is only done over three half days a week, so as not to tire the patients”, explains Doctor Clémence Lefèvre-Dognin, who officiates in the rehabilitation department of the Raymond-Poincaré AP-HP Hospital in Garches, in the Paris region.
“Learning to live with the disease”
The follow-up is carried out in groups of four people simultaneously, so that they can exchange their experiences and, if necessary, their respective progress. Note that this is an adaptation program, to “learn to live with the disease” because there is no cure.
Doctor Clémence Lefèvre-Dognin specifies that patients must be physically fit enough to integrate the cell because it is necessary “to support the program”: to be able to hold the exercises, but also to have enough energy for the journeys by car or in transport which surround treatment sessions. “Then, the objective is to define their needs and to direct them towards a continuation of physical and cognitive stimulation, which can be associated with psychological follow-up”, she adds.
However, accessing this follow-up may have been difficult, as for Adèle or for Matthieu, whose long Covid broke out in the heart of the epidemic in France. He was able to join one of the first support cells in December 2020, coordinated by infectious disease specialist Dominique Salmon-Ceron, at the Hôtel-Dieu hospital. And some are still awaiting assignments. According to the spokesperson for the After J20 association, for Dr. Salmon-Ceron’s unit, 650 people with long Covid are waiting for an answer.
“We need to communicate a lot more about the existence of these care networks because some patients arrive in the circuit arrive very or too late, even though they are suffering from extreme fatigue”, notes Doctor Lefèvre-Dognin. “Their complaint is to have wandered in the system, not to have known who to contact. So when they arrive here it is a deliverance. Now we are managing cases of Covid long from 2022, so it’s getting better and better. The earlier the treatment, the better the support.”
Patients who arrive too late in the circuit
She regrets a general lack of information which delays patient care. “General practitioners are also often in difficulty because they do not know how to take care of them. They listen, but do not necessarily know how to guide and have difficulty in identifying and explaining certain symptoms”, notes the doctor.
A law not enforced?
This law was to set up a platform for monitoring chronic patients with Covid-19, like TousAntiCovid. But this one, a year later, is still absent according to Matthieu Lestage. Only a questionnaire and the contacts of the support units are available on the sites of the various ARS.
It is indicated that “a decree, taken after the opinion of the National Commission for Computing and Liberties (Cnil), must define the implementation of this new platform”, without further details. “This law is completely obsolete as long as the decrees are not implemented,” said the spokesman. “It is true that things are not going as fast as one might imagine”, answers Laurence Cristol, Renaissance MP and doctor, at the origin of a question to the government on the management of long Covids last December.
“But there are still things that have been put in place, which are consensual and which have allowed an overall improvement of this problem, which by its definition is extremely complex,” she adds. According to the MP, medical wandering is linked to ignorance of the syndrome and the absence of curative treatment, which only medical research could solve.
Very attentive to this subject, I will see to the continuation of this work.#CovidLongpic.twitter.com/mlj6YacvUw
—Laurence Cristol (@LaurenceCristol) February 7, 2023
An ongoing clinical study
“In Occitania, where I come from, we are really a promising region on this. We have a clinical study currently in progress which will end at the end of 2023. We hope for more than 9,000 participating patients, which will allow us to make progress in ‘an epidemiological point of view and a more precise knowledge of the disease itself”, explains Laurence Cristol.
This ignorance is the main obstacle to the hope of a cure for patients, and even, more sadly, of an administrative recognition of the syndrome. Very few long-term assignments (ALD) are issued by health insurance.
Get an ALD, another fight
These ALDs are nevertheless essential in the course of the patients. They allow compensation, when often people with severe long Covid extend their sick leave and only receive part of their initial salary. Matthieu Lestage was able to obtain his after extensive neurological examinations, which detected failures in his nervous system, in particular causing tremors. Adele, she was refused hers.
The long Covid being identified as a syndrome, it “is not recognized today in ALD in a specific and identified way”, recognizes Laurence Cristol. However, it is possible to obtain an ALD on a consequence of the long Covid, as in the case of Matthieu Lestage. “It is possible to request an increase in an ALD already present, to request an ALD on a secondary disease or in certain cases make a request for an off-list ALD”, she adds.
If adaptation solutions exist, getting out of it with a long Covid is an obstacle course. And, faced with the slowness of the search and thecessation of certain measures to fight the epidemic, many patients fear new cases of long Covid caused by a relaxation of the population.