More than two million French have suffered or are still suffering from symptoms prolonged following infection with Covid during the first waves.
Among the French who are still there to talk regarding it, there are those who have had the Covid “light”, in flu mode and who have moved on. Others have developed a “severe” form, have come close to the grim reaper, and following weeks in intensive care have integrated a course of follow-up care and rehabilitation as for other serious pathologies.
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And there are those who didn’t particularly hit him. But “long”. Sometimes very long. And who are now suffocating in a gray area.
“We need urgent treatment, begged, in a strangled voice, a nurse in front of 200 participants gathered in December 2021 during the first Long Covid Scientific Days. For me, it’s 600 days of suffering. So, yes, I’m anxious, probably depressed, but that’s just a consequence”.
Seventeen million Europeans – and more than two million French people – have suffered or are still suffering from prolonged symptoms following Covid-19 infection in 2020 and 2021, according to an estimate recently published by the World Health Organization. health (WHO).
Immense fatigue, abnormal fatigability at the slightest effort, cough, shortness of breath, intermittent fever, loss of taste or smell, joint and muscle pain, malaise, inappropriate tachycardia, cognitive dysfunctions, diarrhea, dizziness, persistent headaches… These are more of 200 very varied symptoms affecting different organs which have been observed, generally within three months following infection and persisting for several months or even years. They then plunge those who suffer from it into medical wandering and deep distress.
Often the first examinations show no signs of seriousness compared to the major impact of the symptoms on daily life. “I have been feeling unwell for months: my GP says it will pass. I saw a cardiologist, a pulmonologist, did lots of exams so that in the end, an internist told me that I have a long Covid, that I was already very lucky to have been able to do so many exams and that there was nothing more to do…”. The story of this mother who lives in the Bouches-du-Rhône can be declined at will.
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“Millions of people in our region, straddling Europe and Central Asia, are suffering from debilitating symptoms months following their initial infection with Covid-19. They cannot continue to suffer in silence”WHO Director for Europe Hans Kluge said in early September. “Governments and health partners must work together to find solutions,” he demanded, noting “the urgent need for further analysis, greater investment, increased support and greater solidarity with those who suffer from this disease”.
Millions of daily newspapers are upset. Too few patients, often polysymptomatic, manage to integrate a course of care. ” A doctor who will tell a patient that the long Covid is in his head, that is catastrophic. This can be very traumatic, making the patient feel guilty, who will take even longer to recover. It is essential that the primary care pathway works. Significant work has been done in this direction by the various institutions (HAS, ARS, APHM, etc.) with the possibility of hospital referral for complex cases. The problem now is to define ‘complexity’, because not all patients need to come to the hospital”says Dr. Amélie Ménard.
Infectiologist at the AP-HM*, she has developed a post-Covid consultation activity at the Nord de Marseille hospital since May 2020 and coordinates a multidisciplinary consultation meeting with the Pr Carles from the Nice University Hospital (the other referral center in the region) for the most complex cases with the different specialties involved.
“A patient whose heart beats at 160 as soon as she turns her head, and all the more so when it happens to her at the wheel of her car, is very distressing. And it’s normal that she doesn’t want to drive anymore. Another, who has a permanent feeling of instability as if she had drunk alcohol, must also be able to understand what is happening to her even if nothing is found on the brain MRI. It seems important to me to listen, to do research and to provide relief to these patients.”.
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Gentle and adapted rehabilitation, whether with physiotherapists, cardiologists or speech therapists, as well as the explanation of the principles of Pacing most often improve the situation. “But it is essential that the medical profession and patients know how to recognize the clinical forms with worsening of symptoms following an effort (whether physical or intellectual) which contraindicates a too early and too rapid resumption of activities. Comprehensive management with cardiologists, neurologists, psychologists, speech therapists depending on the symptoms is beneficial”she continues.
Nonetheless, there is no “wonder drug so far”. “It’s very frustrating for the patients and the health body. You have to be able to adjust according to each person: for a teacher who has recovered well physically but who can no longer stand the hubbub of a class due to neurological fatigue, you have to find the best solution with the help also of medicine work. Staying at home depressed or focusing on his symptoms is not necessarily always the right thing to do”.
Beyond the physical suffering, it is their invisibility in the eyes of society that gnaws away at these patients, often misunderstood by those around them, still sometimes bullied by medicine. And in search of a life “before” which escaped them, without warning.
* Also member of the scientific and organizational committee of the second national scientific day of the long Covid which will take place in Nancy on December 8th.
