Patients in France fight scepticism , urge recognition of 'long Covid' reality

Last March, just before much of the world went into 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 recognise 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 Organisation 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 recognise 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 centre 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 recognised long Covid as a disability and offered federal support to the patients.