Patients in France fight skepticism, urge recognition of 'long COVID' reality

French patients struggle with doctors, family, friends who dismiss long term chronic effects of COVD infection as 'all in your head'.

Patients in France fight skepticism, urge recognition of 'long COVID' reality

Last March, just before much of the world went on lockdown, French artist Amelie Deschamp flew home to Normandy from Mexico amid talk of a deadly virus ravaging the world. The full extent of the coronavirus was not yet known, but at airports, she saw people donning face masks and hand gloves to protect themselves.

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

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

“Just the walk from the bedroom to the toilet was a challenge. My heartbeat would rise dramatically even when I was sleeping or just sitting,” she told Anadolu Agency, recalling fighting heart palpitations, chest pain, pulmonary embolism, constant dizziness, and worst of all, a brain fog.

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

Even after several tests and MRIs, the doctors couldn’t diagnose the problem. Her COVID-19 tests had shown negative results. Many people said the symptoms were mostly “in her head,” and she was going through stress and depression, just like millions of others across the world reeling under the effects of the pandemic and the lockdown.

Incensed with her friends, family, and doctors for not believing her suffering, Deschamp 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 Dr. Dominique Salmon-Ceron, one of the earliest French infectious disease specialists to recognize and study the loss of smell symptom as one of COVID-19’s side effects.

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

Recognition and research

The World Health Organization estimates that between 10% and 30% of the 200 million people infected with the virus suffered from long COVID. In France, where nearly 6 million people have been infected with COVID -19, a National Institute of Health and Medical Research (INSERM) study 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, Deschamp 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 patients suffering from symptoms following infection with COVID-19, the group provides patients with moral support and connects them to doctors for consultations.

It has also been enabling multidisciplinary or care centers across the country, funding research on the subject, and raising public awareness of 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 supported sick leave,” said Matthieu Lestage, a member of the group who has battled long COVID since being tested positive last October. He added that French health authorities have not done a firm count of long COVID cases.

This February the French National Assembly, or lower house of parliament, voted unanimously to facilitate the recognition of long COVID as an occupational disease.

In April, President Emmanuel Macron, who himself contracted COVID-19 and suffered from prolonged loss of smell, once again brought the issue into the spotlight by visiting a hospital center providing consultation to patients affected by long COVID. In a statement in support of the patients, Macron said none of them will be left “isolated or without appropriate support.”

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

In comparison, the US has recently recognized 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 with £19.6 million ($27.3 million) to “help better understand the condition, improve diagnosis and find new treatments.”

Such lack of recognition, data, and research 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 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 group has identified at least 50 symptoms, including heavy fatigue, brain fog, headaches, memory loss, and migraines. Worldwide, over 200 symptoms have been documented by scientists and researchers through assessments of patients over varying durations.

‘Uncertainty’ among medical fraternity

Amid generally high awareness of the consequences of COVID-19, those affected by long COVID continue to suffer silently due to the absence of medical treatment and doctors’ indifference shown in addressing their symptoms.

“Even now, there’s a lot of uncertainty among the medical community towards long COVID,” said Nina Stredelle, 34, an insurance agent who got infected with mild symptoms in October. Doctors gave her an ambiguous response, telling her that the symptoms “will go away on their own” before too long.

“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 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 when her visits for migraines and neurological issues became frequent.

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

Both Stredelle and Deschamp said they hope that the medical fraternity will be more attentive to the patients of long COVID, instead of accusing them of exaggerating their health issues.

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

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

The growing din of conspiracy theorists who believe the pandemic is just a hoax and anti-vaxxers who are protesting the government mandating a health pass to access certain places is particularly painful for long COVID patients.

Stredelle, who said she believes she contracted the virus while visiting a restaurant, has not been able to resume a normal life due to persistent symptoms. She says those marching in the streets for the freedom to remain unvaccinated and enjoy social life need to realize that if they contract COVID-19, “there is no social life if you are either going to be sick for a long time or, at worse, dead.”