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Nearly 6 years after the start of the pandemic, long COVID is still poorly understood. Despite growing scientific evidence, persistent misconceptions continue to delay diagnosis and care. The French National Agency for Research on HIV/AIDS and Emerging Infectious Diseases (ANRS-MIE) outlined current knowledge gaps and research priorities, reinforcing that long COVID is a debilitating condition affecting multiple organ systems that can occur across patient populations, rather than a psychological or psychosomatic disorder.
An estimated 2 million individuals in France and approximately 400 million worldwide are affected. This condition can occur in any individual exposed to SARS‑CoV‑2, regardless of age or prior health status.
During an awareness initiative, the World Health Organization (WHO) highlighted eight key messages to counter misinformation and improve recognition.
Scientific consensus rejects a purely psychosomatic origin. Current evidence supports the existence of biological mechanisms; however, effective treatment options are limited.
Biological Basis
“There would indeed be persistent viral presence in tissues,” said Mireille Laforge, PhD, HDR, researcher and team leader from the French Institute of Health and Medical Research (Inserm) and UMR1141 (NeuroDiderot), Child Brain Institute, Hôpital Robert-Debré in Paris, France. The role of viral reservoirs remains unclear, including whether they occur in all individuals during acute infection or only in those who develop long COVID after an inadequate or dysregulated immune response fails to control the virus.
Recent studies have described chronic tissue inflammation, endothelial and vascular injuries, and mitochondrial dysfunction. Advanced imaging may help identify organ involvement, although these tools remain inaccessible for routine clinical care. No validated biomarkers exist, limiting diagnostic standardization and the design of therapeutic trials.
Further progress in pediatric research is required. The burden remains underestimated in children, although children experience symptoms similar to those observed in adults, including fatigue, impaired concentration, and memory difficulties, and face the risk for neurodevelopmental sequelae and school dropout. “It is therefore very important that this risk is not overlooked in the pediatric population and that research is expanded to better characterize and manage these patients.”
Postinfection Syndrome
Long COVID shares biological features with postinfection syndromes, prompting ANRS-MIE to expand its coordinated research program beyond COVID.
Antoine Bertolotti, MD, PhD, professor from the Department of Infectious Diseases, Centre Hospitalier Universitaire de La Réunion, Saint-Pierre, France, reported early findings from a prospective postchikungunya study.
At 3 months after infection, 74% of the participants remained symptomatic; this figure fell to 56% after 6 months, with reported fatigue, musculoskeletal pain, cognitive impairment, sleep disturbances, vertigo, and skin manifestations. “The virus was found in synovial macrophages months after acute infection, although a direct link with clinical symptoms has yet to be confirmed,” he said.
Lyme borreliosis can lead to posttreatment Lyme disease syndrome (PTLDS), during which “patients report symptoms that standard clinical assessments do not always capture, which can create a sense of abandonment and a gap in perception between patients and their physicians,” said Alice Raffetin, MD, researcher from Inserm-U1141, Hôpital Robert-Debré. “It is, therefore, very important to use validated scales to assess quality of life, fatigue, and sleep, and to ensure objective follow-up of these patients,” she added.
In clinical practice, among the cases referred to five French national reference centers, approximately 10% were confirmed as PTLDS. Most individuals present with similar symptoms but receive differential diagnoses after evaluation. Psychological causes account for approximately 5% of active cases, which does not support the view that the condition is driven by stress, anxiety, or mental disorders.
Eight Key Messages
The WHO’s campaign on long COVID sets out eight key messages to counter common myths and misconceptions:
- Long COVID can affect anyone exposed to COVID; being young and fit does not protect against long COVID.
- A person does not need to have been seriously ill or have a preexisting condition to develop long COVID.
- Long COVID is a debilitating condition that can affect physical and cognitive function; it is not just being a bit tired.
- Long COVID can affect anyone and impact work and well-being; it is not “laziness” or an “excuse to stop working.”
- Long COVID can last for 2-3 months or longer; therefore, symptoms do not “persist only for a few weeks.”
- Long COVID is a real health condition and is not caused by stress, anxiety, or poor mental health.
- COVID vaccines reduce the risk for long COVID; they do not “cause” it.
- Long COVID has not gone away; new infections are still leading to cases, so it is not “a thing of the past.”
This story was translated from Univadis France, part of the Medscape Professional Network.
