Patients In France Fight Skepticism, Urge Recognition Of ‘Long COVID’ Reality

Last March, just before the global lockdown ensued, visual artist Amelie Deschamps flew home to Normandy in northern France from Mexico amid talk of a deadly virus ravaging the world. The full extent of the coronavirus was yet to be known, but at the airports, she saw people donning face masks and hand gloves to protect from the infection.

Days later, as France announced the lockdown, the 40-year-old was down with fever and fatigue caused by the virus infection, seemingly caught mid-flight. With the intensive care units at hospitals overflowing and doctors attending to only serious cases, she resorted to the usual concoction of homemade remedies of vitamin pills and ginger tea to treat the heavy flu.

But the problems kept getting worse, landing her in the emergency section of the hospital seven times between March and June 2020.

“Just the walk from the bedroom to the toilet was a challenge. The heartbeat would rise dramatically even when I was sleeping or just sitting,” she recalled in an interview with Anadolu Agency about the days of battling sudden heart palpitations, chest pain, pulmonary embolism, constant dizziness, and worst of all, the brain fog.

“I felt like I was in a semi-coma. A healthy person like me had become completely incapable of doing basic functions like taking a walk in the garden.”

Her COVID-19 tests conducted weeks later had shown negative results. The doctors could not diagnose the exact problem even after several tests and MRIs. They said the symptoms were mostly in her head, and she was going through “stress and depression,” just like millions of people across the world reeling under the effects of the pandemic and the lockdown.

Incensed with her friends, family, and doctors not believing her suffering, Deschamps began to seek support from other “sick people” like herself to find answers to what was going on with her body. The chase landed her at Hotel-Dieu in Paris, in the clinic of Professor Dominique Salmon-Ceron, who is among the earliest French infectious disease specialists to open consultations for long COVID-19 symptoms and recognize the loss of smell as one of the side-effects of the disease.

Nearly four months into her problems, Deschamp discovered that the persistent symptoms she was experiencing were medically referred to as “the long COVID.”

Statutory recognition and research

The World Health Organization estimates that between 10% and 30% of the 200 million people infected with the coronavirus have suffered from the Long COVID. In France, where nearly six million people have been infected with the coronavirus, a study by the country’s National Institute of Health and Medical Research found that 60% are affected by at least one symptom six months after infection and a quarter by three or more symptoms.

On social media, Deschamps discovered more posts from other users who described similar symptoms of chest pain, dizziness, and fatigue and an online French group called ApresJ20 or AfterD20 Association Long Covid. Established by the patients suffering from symptoms following infection with the coronavirus, the association provides patients with moral support and connects them to doctors for consultations.

It has also set up multidisciplinary care centers across the country, funding research on the subject, raising public awareness on the Long COVID, besides pushing the government to recognize it as a long-term illness.

“This is a matter of public health… administrative recognition will allow medical and financial coverage of care, as well as support sick leave,” said Matthieu Lestage, an association member who has battled the Long COVID for nine months since being tested positive in October 2020. He added that the French health authorities have not conducted a census or quantified reporting of data of the Long COVID cases.

The French National Assembly, or lower house of parliament, in February, voted unanimously to facilitate the recognition of the Long COVID as an occupational disease. In April, President Emmanuel Macron, who contracted the virus and suffered from prolonged loss of smell, once again brought the issue under a spotlight by visiting a hospital center providing consultation to patients affected by the Long COVID. In a statement in support of such patients, he said no citizen will be left “isolated and without appropriate support.”

But, besides devising a fact-sheet and response guide for identifying symptoms, the public health authorities have not taken concrete measures for statutory recognition of the disease.

In comparison, the US has recently recognized the Long COVID as a disability and offered federal support to the patients. It has also earmarked $1.15 billion for research. The UK government is funding 15 research studies at the cost of $27.295 million to “help better understand the condition, improve diagnosis and find new treatments.”

Such lack of recognition and research on the disease and data on the number of sick people in France has caused a delay in charting a course of treatment and care for adult and minor patients, who are primarily at a loss to place the symptoms as part of the Long COVID, Lestage said. “The government has not done a good job in explaining to the general public the reality of multiple complexities and fluctuating symptoms of the disease.”

From its network of patients and experts, the association has identified at least 50 symptoms, including overwhelming fatigue, brain fog, headaches, memory loss, and migraines. Worldwide, over 200 symptoms are documented by scientists and researchers through various assessments of patients over a varying time duration.

Uncertainty’ among medical fraternity

While there is a higher awareness of the consequences of COVID-19 due to the work of groups like AfterD20, the patients’ testimony, and epidemiology research, those affected by the Long COVID continue to suffer silently due to the absence of medical treatment and the indifference shown by doctors in addressing their symptoms.

“Even now, there is a lot of uncertainty among the medical community towards the Long COVID,” said Nina Stredelle, a 34-year-old insurance agent from an international firm, who got infected with mild symptoms in October. She experienced an ambiguous response from doctors, telling her that the symptoms “will go on their own” in a short time.

“Nearly five months later, the symptoms kept fluctuating severely and began to seriously impact my cognitive ability,” she said.

When her ability to focus started dimming and the brain fog became severe, and there was no available treatment, Stredelle decided to take five weeks off from work to recover at home. Doctors only began to take her symptoms seriously as her visits for migraines and neurological issues became frequent.

“People with the Long COVID may look normal and healthy, but we are struggling with long-term chronic issues. It is like an invisible illness,” she said, adding that the problem is worsened by the doctors who refuse to believe that the problems described by the patients are real.

Both Stredelle and Deschamps hope that the medical fraternity will be more attentive to the patients of the Long COVID, instead of blaming them for exaggerating their health issues.

“It is a cynical position to not believe the patient and offer them the required medical support,” Deschamps stressed, adding that she took the step of admitting herself to a rehabilitation center three times in a week to reorient and recover.

“We are not just fighting the trauma of the Long COVID, but also the battle to be heard by the medical fraternity.”