“We live with inhuman pain.” Nora, 44, has been suffering for thirteen months from a “long Covid”, as the patients themselves call it. “We are abandoned on all sides, doctors, public health… It’s as if we don’t exist!” exclaims this medico-psychological aid, contaminated in August 2020 during the second wave of Covid-19.
Currently, there is no official figure in France that lists people like Nora. Invisible in Covid dashboards of Public Health France, “between 10% and 15%” of people who have contracted Covid-19 have “persistent troubles three months later”, explains Professor Eric Guedj to franceinfo, adding that these patients, “in majority” women are “all on average around 45 years old”. This department head at Marseille Public Assistance-Hospitals (AP-HM) follows hundreds of patients suffering from this pathology. Like Nora, these patients endure multiple, often disabling symptoms on a daily basis and fight for recognition of their disease.
“If I force too much while walking my two kilometers, it’s total loss of consciousness”, comments, short of breath, Matthieu, 43, weakened by a long Covid for eleven months. On the phone, he constantly apologizes when a dry cough interrupts him. He had to adapt his daily activities to his phases of 45 minutes of autonomy. “If I transgress, I pick up”, assures the forties, who comes out of three weeks of relapse of an overwhelming fatigue. This former army instructor in physics “set like a machine” no longer has control of his body: “It’s the Covid that dictates my life”, he observes.
Today, Matthieu is the spokesperson for the Après J20 association, which brings together “1,123 members” who could not recover from Covid-19 in 20 days. With its scientific committee, chaired by infectious disease specialist Dominique Salmon, the association, which is in contact with the Ministry of Health, has a support role and defends four objectives.
“We ask for the recognition of the long Covid, the multidisciplinary management of care, better communication with the general public and the medical profession and the funding of research on this disease.”Matthieu, spokesperson for the Après J20 association
Pulsating heart, pain in legs or arms, itching, tinnitus, visual hallucinations, insomnia, difficulty to walk, to breathe, to concentrate… More than 200 symptoms have been identified by an international study, published in July 2021 in The Lancet. The most common are fatigue, post-exercise discomfort, as for Matthieu, and the brain fog in which Nathalie wanders.
Since March 2020, when the virus entered her life, the state of this mother “degrades slowly but surely”. This 55-year-old woman is no longer counting her symptoms. But the one that anguishes him the most are his immediate memory loss. Unable to do two things at the same time, she can sit for hours in a chair, not knowing why she should get up. Often, her three sons finish her unanswered sentences or tease her because she offers to see the film seen the day before. “It’s like I’ve become an idiot”, sums up Nathalie, who speaks quickly so as not to lose her thread.
Neither Matthew, nor Nathalie, nor Nora know when their symptoms will end or when the next one (s) will appear. This disease is “physical and psychological suffering”Nora insists.
“How do we manage to hold on? I have 20 to 30 acute symptoms, others up to 50, and people are left like that, with no response or treatment.”Nora, sick with Covid-19 for thirteen months
Because if the Covid-19 is a disease that medicine identifies better and better, its long-term consequences are only starting to be documented and the management of symptoms is not yet systematic. For Professor Eric Guedj, the lack of consensus around the definition of long Covid complicates its diagnosis. “The easiest way is to rely on the definition of the High Authority of Health (HAS), which speaks of persistent or recurring symptoms at least four weeks after an infection demonstrated with biological evidence (PCR test or serology) or suspected” , specifies the head of department.
He also recognizes that “the very great disorganization of the health system” prevents the information on the identification of the long Covid from passing “clearly” in the field.
“There is a wandering in the management of this disease. We have fallen behind for lack of funded studies on the subject.”Eric Guedj, head of the nuclear medicine department at AP-HM
Infectious disease specialist, pulmonologist, neurologist… Stéphanie, 42, has never seen as many doctors as since May 30, 2020, when severe chest pain and difficulty breathing brought her to the emergency room. At the time, the doctor on duty explained to him that it was due “to stress”. Since then, this architect has had a series of disappointments. During his second visit to the emergency room for severe stomach aches, he was told that the long Covid does not exist. When she remains 48 hours without being able to move her upper body, the doctor on duty prescribes Doliprane. By viewing his x-rays of the lungs, the pulmonologist his “shout at it” because she failed to tell him that she was a smoker. However, Stéphanie has never smoked.
After months of battle with the medical profession, she no longer feels confident, considering herself “mistreated for sixteen months”. However, in February 2021, the HAS published a guide on the long Covid in which it invites “doctors to listen and empathize with their patients suffering from prolonged symptoms, and reassure them about the possibilities of management and the temporary and reversible nature of their situation”.
Another difficulty complicates the care process for patients infected during the first wave: the absence of irrefutable proof of their infection. At the time, there was little to no PCR testing done. However, without a positive test or serology, access to a service specializing in the rehabilitation of a long Covid becomes almost impossible. Like Paule *, 44, infected at her workplace on March 30, 2020. Although she occupies a high-ranking position in the hospital environment, she is unable to secure a place in the Covid unit of the Hôtel-Dieu or in that of the Foch hospital, in Suresnes. “Places are very, very expensive”, she assures. In the meantime, she multiplies the emails to the directors of health establishments that she knows in order to win the Grail.
The procedures are also complicated to have the long Covid recognized as an occupational disease. However, this is what Nadia, a 53-year-old nursing assistant, who has been on sick leave since her infection in October, wishes. 2020. “I live with 600 euros, I no longer have an activity bonus, I am not entitled to any help “, laments this mother who is raising her 12-year-old daughter alone years. “This is my son of 27 years old who helps me financially but it’s not normal, she protests. I am dismissed from service to service on the pretext that each time a document is missing. There is always something wrong. “
For its part, Health Insurance does not recognize persistent symptoms of Covid-19 as a long-term condition (ALD), with rare exceptions. As for the government, since the unanimous adoption of a text on the recognition and management of the long Covid in the National Assembly on February 17, 2021, it is radio silence.
“We take this pathology for a depressive state, states Nadia. But we end up becoming it in the face of all this incomprehension and these interminable steps. ” Because to the ignorance of the medical profession is often added the skepticism of the families of the patients. Contaminated on March 16, 2020, Maureen, 67 years old, lost 28 kilos and continues the exams. It is his son who accompanies him most often. But initially he didn’t support her at all. “He thought I was adding more, laments the retiree. Now that we are starting to talk a little more about the long Covid, he realizes that I am not pretending. What happens to us is not in the head, as those around us like to tell us. ” An indisputable fact for Professor Eric Guedj, who has demonstrated the cerebral origin of the disorders from which patients suffer.
“The long Covid is a real multi-organ disease. It is not a psychiatric pathology, there is a biological explanation for the many symptoms identified.”Eric Guedj, head of the nuclear medicine department at AP-HM
Isolated, misunderstood, crippled by pain, more and more patients are turning to social networks like Facebook, where Covid-19 groups are flourishing. They come looking for answers, listening and support. “When I read the same routes as me, it scares me and it reassures me at the same time”, confides Laurence, 46, infected in March 2020 and who recently discovered these groups. This school teacher is shutting down all scientific publications in the hope of alleviating her symptoms. “We have to look for solutions ourselves. But when we talk to doctors about it, they don’t listen to us”, deplores the one who has just shared in a group a discovery based on marine collagen. Self-medication not recommended by Health Insurance, which instead invites patients to adapt their daily lives (diet, sleep, physical activity and rest) and to arm themselves with patience for their recovery.
Today, no one can say when remission will come. But for Professor Eric Guedj, this brain dysfunction is “without lesion”. “With time and a supervised and controlled physical rehabilitation, the majority of patients should recover, he assures. Unfortunately, some patients, after eighteen months, can develop chronic forms and remain disabled. “ Which makes Matthew fear the worst. “We are heading towards a sad reality which is suicide”, is he worried about the upsurge in calls? “very alarming” at the psy service of the association After D20.
* The first name has been changed at the request of the person concerned.