Anne Sophie Goninet
November 09, 2016
Premium stories from Worldcrunch's own network of multi-lingual journalists in over 30 countries.
Death rates are down, masks are off, but many who have been infected by COVID have still not recovered. Long COVID continues to be hard to diagnose and treatments are still in the developmental stage.
PARIS — The medical examination took longer than expected in the Parc de Castelnau-le-Lez clinic, near the southern French city of Montpellier. Jocelyne had come to see a specialist for long COVID-19, and exits the appointment slowly with help from her son. The meeting lasted more than an hour, twice as long as planned.
“I’m a fighter, you know, I’ve done a lot of things in my life, I’ve been around the world twice… I’m not saying this to brag, but to tell you my background," says the 40-year-old. "These days, I’m exhausted, I’m not hungry, I no longer drive, I can’t work anymore, I have restless legs syndrome.” She pauses before adding sadly: “I can’t read anymore either.”
For Jocelyne, the “descent into hell” happened in two stages. After initially getting the Sars-CoV-2 in December 2020, she spent an “exhausting” year. “I was very tired, I had trouble concentrating. Although I’m usually a positive, cheerful, dynamic, hyperactive person, I didn’t feel like anything anymore. It was impossible for me to do sports again, even though I used to do it for six hours a week,” she explains.
In spite of it all, she was still working, saw doctors who wrongly put her condition down to perimenopause. She started 2022 hopeful she would get better, but she got COVID a second time in January, despite two doses of the vaccine.
“I spent four awful days, and on the fifth, when I woke up, my mind went blank. I couldn’t speak, I couldn’t stand up, every nerve in my body was burning,” she says. She urgently got an appointment with a neuropsychiatrist. “She told me that a viral infection could cause neurological problems and that since I had had COVID twice, it was probably a long one.”
The diagnosis was later confirmed by an infectious disease specialist. “I did a lot of exams that showed that the virus had activated or reactivated several past infections, such as the Epstein-Barr virus, the dengue fever, and the Lyme disease, she adds. For the past three weeks, I have been taking a neuroleptic and a nerve medication usually given to patients suffering severe burns. I’m only able to speak to you thanks to this treatment.”
Doctor Yasmina Bensahli regularly faces such complex clinical cases since the opening of long COVID appointments in her clinic, in early 2022. With vaccines and emergency treatment helping to bring down the death rate, it is the effects of long COVID that is increasingly the focus of the medical community — and the patients, of course.
It is my only lingering symptom, but it is really crippling.
Specialized in internal medicine, Bensahli explains that “they are often desperate people, who have not been heard by their referring doctor and that have a range of symptoms altering their quality of life. Last week, I saw a 17-year-old girl who is in intensive foundation degree but can no longer study. She was very tired and had trouble concentrating.”
Doctor Bensahli also faces less complex cases. A 23-year-old patient’s sense of smell never returned after getting tested positive for coronavirus more than a year ago. “It is my only lingering symptom, but it is really crippling.”
The French National Authority for Health made the list of the most common long COVID symptoms: extreme tiredness, neurological disorders (cognitive, sensorial, headache), cardiac-chest problems (chest pain and tightness, tachycardia, dyspnea, cough), loss of smell or taste, as well as stomach pain and issues. But so far, more than 200 lingering symptoms have been listed, making diagnosis and care particularly complex. Doctor Bensahli explains, “It is a new disease for which we make a diagnosis of exclusion: We rule out all other options that could explain the symptoms before concluding it is a long COVID."
Therefore, most of the people coming to the clinic for a consultation are then treated for one or two days as day patients. "The clinic has a very large technical platform with a lot of specialists, meaning that all the necessary examinations can be carried out in one place. The patients then see the referring doctor again for a report. This is a major step because they finally feel like they have been heard," emphasizes Director of Care Cathy Christmann.
Another pathology, like cancer, is sometimes detected. If the diagnosis of long Covid is finally established, patients are redirected, depending on the complexity of their condition, to their doctor, to specialists or to a specialized care center.
In Occitania, in the South of France, one of the three pioneering regions along with Ile-de-France and Brittany, 18 specialized centers have been accredited by the French regional health agency (ARS) for the management of long COVID, as well as six medical centers. Each department also has a post-COVID unit. "The objective is to improve the supply of care, quantitatively and qualitatively, for these patients whose journey has been painful and prolonged until now," explains Dr. Jérôme Larché, charged by the ARS to coordinate this action.
The long COVID's many symptoms can leave patients incacipated.
The most important thing in structuring care is the training of primary care health care professionals. "The training of attending physicians in this new unknown pathology is essential. Many people suffering from post-COVID syndrome have suffered long months of imprecise diagnosis because they were not heard by their GP or by the occupational medicine. "If I agree to testify, confides Jocelyne, it is because there are many people who suffer and who are told that it is in their head. But it's not an invented disease!"
Doctors are helpless in front of this “unsettling” disease. “My doctor couldn’t do anything except telling me to take paracetamol. The last time I went to see her, she told me ‘Listen, you have long COVID, but I don’t know how to help,” Anik recalls.
The 42-year-old press secretary got COVID in October 2020. “I was weak, but not as if I had the flu. I recovered in ten days, and I didn't think I would suffer from any after-effects. But my smell didn't return and at Christmas, I started to detect very strong smells of rotten garlic, garbage, and tailpipes. I consulted an ENT specialist who confirmed that I was not hallucinating, that it was phantosmia. He prescribed olfactory rehabilitation."
For Anik, phantosmia also marked the beginning of what she calls “COVID comebacks.” “Every two or three weeks, it was as if I got COVID again. I had stomach issues, chest tightness, joint pain, I had to take naps and go to bed at 8 p.m. with my son because I was so exhausted. My whole body was affected, as if I had been hit by a truck," she recalls. In between these episodes, Anik regained her shape and abilities, slept well, and was hopeful that she had put the disease behind her. "When it came back overnight, I was down, even morally, because I knew I had 10 days of fighting ahead of me."
There are many people who suffer and who are told that it is in their head.
Eventually, her "COVID comebacks" spaced out until July 2021. "In August, I met a woman in the Alps who gave me a traditional Chinese belly massage for almost two hours. It was as if she had freed me from all the pain with a deep cleansing and that was the end of the long COVID for me. Anyway, I haven't had COVID symptoms ever since. The only thing left is my smell, which I think I recovered at 70%," says Anik. "COVID took a year off my life," she retrospectively says. "Now that I'm better, I'm so happy to be able to wake up in the morning without any pain. I realized how valuable it is to be in good health."
Unfortunately, Dr. Larché has not seen many healings among his patients. "This is just my experience, but a study recently published in Nature Communications shows that after one year of follow-up, only 15% of patients are symptom-free. I think we're facing a new chronic disease," he laments. "But my experience also shows that an adapted treatment in a specialized center allows an improvement of the symptoms, a reduction of their intensity and a beginning of professional reintegration," he adds.
But she was deterred by the intensity of the program. "The days start with a one-hour walk, that's barely what I do in a week," she sighs. " Long COVID patients are on a rollercoaster ride, they can be off for two weeks, three weeks, a month … Every time, exhaustion is the issue. In this center, the program includes an hour of outdoor walking, exercise training, relaxation, pool activity and stretching, all interspersed with rest periods, check-ups with the nurses and lunch. This is obviously the theory, in practice everyone does its best," says Gilles Vallat, head of the rehabilitation staff.
"Each patient is different, and we always have to adapt, but with these long COVID, this is even more so. There is no norm, no standard protocol, it is a very complicated care," underlines Gilles Vallat. At the Pic Saint-Loup clinic, the composition of the team (pneumologist, cardiologist, physiotherapist, psychiatrist, psychologist, occupational therapist, dietician …) enables to take care of the patient "in his or her entirety," he insists. More than any other pathology, long COVID requires this multidisciplinary approach, due to its various symptoms.
This journalist, himself infected with long COVID for 18 months, laments the "persistent gap between theory and practice" while a bill was passed on Jan. 13, 2022 and a road map was launched on March 17, 2022. "France is one of the last countries not to have identified the long COVID patients. England has done it: 1,300,000 are recognized, classified according to their symptoms, taken care of … Between 10% and 30% of people who have had COVID are likely to develop a long one, but we want to stop with the statistics.”
U.S. Department of Defense officials report that instead of the typical battalion tactical groups in Ukraine, which number several hundred soldiers, the Russians have now shifted to attacks by smaller units.
Russian forces have been pushed out of the area around Kharkiv. Villages that were occupied for two months are free once more — but utterly destroyed. And thousands of people have disappeared without a trace.
Central to the tragic absurdity of this war is the question of language. Vladimir Putin has repeated that protecting ethnic Russians and the Russian-speaking populations of Ukraine was a driving motivation for his invasion.
Yet one month on, a quick look at the map shows that many of the worst-hit cities are those where Russian is the predominant language: Kharkiv, Odesa, Kherson.
Then there is Mariupol, under siege and symbol of Putin’s cruelty. In the largest city on the Azov Sea, with a population of half a million people, Ukrainians make up slightly less than half of the city's population, and Mariupol's second-largest national ethnicity is Russians. As of 2001, when the last census was conducted, 89.5% of the city's population identified Russian as their mother tongue.
Between 2018 and 2019, I spent several months in Mariupol. It is a rugged but beautiful city dotted with Soviet-era architecture, featuring wide avenues and hillside parks, and an extensive industrial zone stretching along the shoreline. There was a vibrant youth culture and art scene, with students developing projects to turn their city into a regional cultural center with an international photography festival.
There were also many offices of international NGOs and human rights organizations, a consequence of the fact that Mariupol was the last major city before entering the occupied zone of Donbas. Many natives of the contested regions of Luhansk and Donetsk had moved there, taking jobs in restaurants and hospitals. I had fond memories of the welcoming from locals who were quicker to smile than in some other parts of Ukraine. All of this is gone.
Putin is bombing the very people he has claimed to want to rescue.
According to the latest data from the local authorities, 80% of the port city has been destroyed by Russian bombs, artillery fire and missile attacks, with particularly egregious targeting of civilians, including a maternity hospital, a theater where more than 1,000 people had taken shelter and a school where some 400 others were hiding.
The official civilian death toll of Mariupol is estimated at more than 3,000. There are no language or ethnic-based statistics of the victims, but it’s likely the majority were Russian speakers.
So let’s be clear, Putin is bombing the very people he has claimed to want to rescue.
Putin’s Public Enemy No. 1, Ukrainian President Volodymyr Zelensky, is a mother-tongue Russian speaker who’d made a successful acting and comedy career in Russian-language broadcasting, having extensively toured Russian cities for years.
Rescuers carry a person injured during a shelling by Russian troops of Kharkiv, northeastern Ukraine.
Yes, the official language of Ukraine is Ukrainian, and a 2019 law aimed to ensure that it is used in public discourse, but no one has ever sought to abolish the Russian language in everyday life. In none of the cities that are now being bombed by the Russian army to supposedly liberate them has the Russian language been suppressed or have the Russian-speaking population been discriminated against.
Sociologist Mikhail Mishchenko explains that studies have found that the vast majority of Ukrainians don’t consider language a political issue. For reasons of history, culture and the similarities of the two languages, Ukraine is effectively a bilingual nation.
"The overwhelming majority of the population speaks both languages, Russian and Ukrainian,” Mishchenko explains. “Those who say they understand Russian poorly and have difficulty communicating in it are just over 4% percent. Approximately the same number of people say the same about Ukrainian.”
In general, there is no problem of communication and understanding. Often there will be conversations where one person speaks Ukrainian, and the other responds in Russian. Geographically, the Russian language is more dominant in the eastern and central parts of Ukraine, and Ukrainian in the west.
Like most central Ukrainians I am perfectly bilingual: for me, Ukrainian and Russian are both native languages that I have used since childhood in Kyiv. My generation grew up on Russian rock, post-Soviet cinema, and translations of foreign literature into Russian. I communicate in Russian with my sister, and with my mother and daughter in Ukrainian. I write professionally in three languages: Ukrainian, Russian and English, and can also speak Polish, French, and a bit Japanese. My mother taught me that the more languages I know the more human I am.
At the same time, I am not Russian — nor British or Polish. I am Ukrainian. Ours is a nation with a long history and culture of its own, which has always included a multi-ethnic population: Russians, Belarusians, Moldovans, Crimean Tatars, Bulgarians, Romanians, Hungarians, Poles, Jews, Greeks. We all, they all, have found our place on Ukrainian soil. We speak different languages, pray in different churches, we have different traditions, clothes, and cuisine.
My mother taught me that the more languages I know the more human I am.
Like in other countries, these differences have been the source of conflict in our past. But it is who we are and will always be, and real progress has been made over the past three decades to embrace our multitudes. Our Jewish, Russian-speaking president is the most visible proof of that — and is in fact part of what our soldiers are fighting for.
Many in Moscow were convinced that Russian troops would be welcomed in Ukraine as liberating heroes by Russian speakers. Instead, young soldiers are forced to shoot at people who scream in their native language.
Starving people ina street of Kharkiv in 1933, during the famine
Putin has tried to rally the troops by warning that in Ukraine a “genocide” of ethnic Russians is being carried out by a government that must be “de-nazified.”
These are, of course, words with specific definitions that carry the full weight of history. The Ukrainian people know what genocide is not from books. In my hometown of Kyiv, German soldiers massacred Jews en masse. My grandfather survived the Buchenwald concentration camp, liberated by the U.S. army. My great-grandmother, who died at the age of 95, survived the 1932-33 famine when the Red Army carried out the genocide of the Ukrainian middle class, and her sister disappeared in the camps of Siberia, convicted for defying rationing to try to feed her children during the famine.
On Tuesday, came a notable report of one of the latest civilian deaths in the besieged Russian-speaking city of Kharkiv: a 96-year-old had been killed when shelling hit his apartment building. The victim’s name was Boris Romanchenko; he had survived Buchenwald and two other Nazi concentration camps during World War II. As President Zelensky noted: Hitler didn’t manage to kill him, but Putin did.
Genocide has returned to Ukraine, from Kharkiv to Kherson to Mariupol, as Vladimir Putin had warned. But it is his own genocide against the Russian-speaking population of Ukraine.