Covid long: “It’s as if I were carrying a 20-kilogram backpack all the time”

Between her position as secretary and her function as union representative, Laurence, in her fifties, had an active professional life. His existence changed in October 2020, after a Covid-19 infection. She avoids hospitalization, but the symptoms are numerous and lasting: loss of taste and smell, muscle pain, insomnia, breathing problems, attention, concentration and total exhaustion. “I was completely broken for two months,” she sums up. Despite a sick leave, his body does not regain the upper hand. In April 2021, her godson advised her to go to the “Covid long” department of the hospital center (CH) in Tourcoing, where Dr Olivier Robineau, specialist in infectious diseases, takes care of her.

Today, Laurence has still not regained all of her abilities. The salad always has “this revolting, metallic taste”. Above all, she suffers from almost permanent headaches, “a chic word to say that I have an extremely bad headache, she slips, trying to smile. Before, I went to the swimming pool once a week, 1,500 meters in an hour. Now even climbing stairs is a challenge, like carrying a 20-kilo backpack on my back.”

The impossible prescription of specific treatments

“We know that these persistent symptoms are linked to the Covid-19 event, but we do not understand the physiopathological mechanisms that could explain them, indicates Olivier Robineau. The notion of ‘event’ is important, because functional disorders and the pandemic context, are among the hypotheses which would explain the symptoms, or which could aggravate them”. The whole difficulty is to be able to explain to patients that if certain symptoms could be linked to inflammatory reactions, to autoimmune phenomena, even to the persistence of the virus in the body, or to microthrombi – damage to the blood vessels – , there is probably a functional (somatic) part to these persistent symptoms, as is often observed in chronic diseases.

Sitting opposite him in the consultation room, Laurence listens attentively, unable to hide her resignation. If scientific studies begin to flourish, no certainty emerges. Hence the impossibility of prescribing specific treatments (which cure the disease), but only symptomatic treatments (which alleviate the symptoms), such as physiotherapy sessions for rehabilitation of effort and breathing, painkillers and psychological support. The care is not in vain, however: Laurence’s state of health is improving little by little, while a disability status 2 has been recognized; enough to guarantee him a pension equivalent to 50% of his salary – 785 euros net – but prevents him from working more than five hours a week, which earned him a … dismissal procedure.

The story and profile of Hélène, who sets up a few minutes after Laurence facing Dr. Robineau, are hardly different. In her fifties, an accountant, a busy family life, she fell ill at the end of 2020. Bedridden for four weeks, she suffered from violent headaches, muscle pain and diarrhea. Until curling the hospitalization. “One night, I thought I was going to drown, she remembers. Taking a shower or filling a dishwasher exhausted me.” Finally, she joined the CH de Tourcoing department at the end of December 2020. “Here, I found doctors who listen to me and explained to me that I was not alone”, she confides. Examinations confirm the reality of the ailments – including a PET scan showing abnormal intestinal activity – and that they cannot be explained by another disease. In February 2021, Hélène feels better and agrees to return to the office with a therapeutic half-time.

“Alas, in May, all the symptoms return: the headaches keep me bedridden, I am unable to concentrate for more than a few minutes and the diarrhea lasts for more than two months,” she explains. Refusing to give up, she resumed her work at the end of July. And relapse in October. Since then, the 50-year-old has benefited from a long-term condition (ALD). “Fortunately, I am well surrounded by my family. Those who are not so lucky, I don’t know how they manage, I would probably be dead!” The physiotherapy sessions have allowed her to improve her condition, she breathes better – even if her breath remains short – and now manages to read a few minutes a day. Psychological follow-up, as taboo before the Covid, also helps. Dr. Robineau nevertheless dissuades her from resuming her professional activity before her condition stabilizes.

The last patient of the day, Marie, is 34 years old. She used to work in a care center for asylum seekers until her infection at the end of 2020. She then spent eight weeks of hell, suffering from a list of symptoms as long as her arm, before finally being hospitalized. several days. Seven weeks of rehabilitation followed, which perked her up but did not allow her to regain her past energy. She then decides to go to Dr. Robineau’s service. Again, the treatments are bearing fruit and his condition is gradually improving.

Then, at the beginning of 2022, Marie feels exhausted again. The muscular pains, asthenia and migraines etc. have returned. She finds it difficult to breathe, speak and follow a conversation. The young woman compelled herself to write down all of Dr. Robineau’s comments in a small notebook placed on her knees so as not to forget anything. The problem is that she also suffers from an infection of the perineum (abscess), which must first be treated and treated. “People with “long Covid” are already in states of advanced exhaustion, so the slightest illness that is added becomes insurmountable”, analyzes the specialist. The other obstacle is that before working on the persistent symptoms potentially linked to Covid, we must first manage to dissociate it from other pathologies.

Chaotic care and doctors sometimes helpless in the face of post-Covid syndromes

Three paths, three women, many common pains and the same worries about their future. “The disease on the one hand and the absence of diagnosis on the other, it is very heavy psychologically”, confides Hélène. All three testify to the difficulties associated with their care and the recognition of their symptoms. “A few months after my infection, neither the regional health agency [ARS], neither Social Security nor my attending physician were able to explain to me what was happening to me, none wanted to believe in a link with Covid-19. I had to manage on my own”, Laurence gets carried away. For her part, Hélène is just as severe. Her general practitioner, uninformed, refused to establish a connection between her persistent symptoms and the Covid. She had to change it before finding the way to Dr. Robineau’s service.

She also believes that the members of the After J20 association – of which she is a member – are better informed than many doctors. “Most haven’t even received or read the ‘quick replies’ [NDLR : des fiches indiquant la marche à suivre pour prendre en charge les Covid longs] of the High Authority for Health [HAS]”, she criticizes. As for Marie, if she has been on long-term leave for fifteen months, health insurance refuses to assign her an ALD, on the pretext that her symptoms are too diffuse and too varied. “We told me that I had post-traumatic shock, but I know what it is with my job with foreign nationals, and I can assure you that it is not about that”, defends himself She. Under her arm, a 3-kilo file – she weighed it on her scales – lists all her examinations, prescriptions and analyzes carried out for more than a year. Moved to tears, the young woman prays that scientists “find an explanation, a cure, anything but something”.*

The attitude of certain doctors locked in their certainties pains then annoys the victims. It translates part of the reality: that of the lack of self-training and the persistence of postures which sometimes lead to neglecting the words of disoriented patients. Aware that the long Covid remains poorly understood, Dr. Robineau organizes training and webinars to help as many colleagues as possible, but he recognizes that there is a long way to go. Fortunately, scientific knowledge is progressing and studies tend to show that, for the vast majority, the condition of patients affected by these persistent symptoms improves over time. Another hope: until now, people affected by long Covid have more often suffered severe forms. However, as Omicron causes less violent symptoms, it could lead to fewer long Covids. “Warning, correlation does not mean causality, tempers Dr. Robineau. But it is, indeed, a positive hypothesis.”

* Four days later, Marie told us that she is again hospitalized for a week because of her persistent symptoms and her infection.