Patient follow-up has revealed the extent of post-COVID symptoms, the wide variety of which—collectively referred to as “long COVID”—likely encompasses multiple conditions that are still not fully understood.

The complexity posed by the wide variety of symptoms does not fall within the scope of any single specialty or discipline. Interdisciplinary dialogue and coordination among stakeholders must be strengthened and improved by including patients and patient organizations. Resolving the COVID-19 crisis required an exceptional international effort. A similar commitment is essential for Long COVID.

A Day Dedicated to Research on Long Covid

For the ANRS Emerging Infectious Diseases (ANRS MIE), research must involve those affected from the very beginning, from study design through to the analysis of results and the conduct of the investigation. The day dedicated to research on Long COVID was thus organized in partnership with Santé publique France and the Haute Autorité de santé, and with the support of patient associations (ApresJ20: Association Covid long France, Association Covid long enfants, Association Winslow santé publique) that participated in the selection committees, the scientific advisory board, and the moderation of this event.

During the event, several research areas were covered: epidemiology, pathophysiology, and clinical trials. Researchers and clinicians presented the latest findings from their studies on the underlying mechanisms of the disease, which will help better characterize post-COVID syndrome(s), understand their clinical manifestations to improve diagnosis, and propose better, tailored care.

A summary of the day’s presentations is included in the appendix to this press release.

Prioritizing future research through a multidisciplinary and coordinated approach that includes patients

The goal of this event was to take research to the next level. Key research areas must be defined in light of the pathophysiological and epidemiological hypotheses that have been put forward and that call for a rethinking of our priorities.

At the conclusion of this first meeting, several key points emerged:

• Greater attention must be paid to pediatric patients. Long-term follow-up is also essential.

• Epidemiology has made it possible to quantify the burden of the disease and identify multiple risk factors linked to the infection (severity, number, wave, and variant), demographic context (gender, age), social context (working conditions, perceptions), pathological context (burden of physical and psychological comorbidities), and behaviors (vaccination).

• Preparedness for future epidemics and pandemics is a key driving force behind research on emerging infectious diseases. Epidemiological knowledge, which several French teams have helped to refine, should enable the definition, implementation, and evaluation of public health policies aimed at reducing the burden on the population and preparing—particularly the healthcare system—for new infectious threats, as well as providing avenues for clinical and basic research on the disease.

• Viral persistence and neuroinvasion of the central nervous system (CNS) by SARS-CoV-2 have been demonstrated, but the virus’s impact—particularly on the CNS—the mechanisms involved, and the links to neuropsychiatric symptoms and cognitive deficits must be better understood.

• Studies on pathophysiology must be continued and considered within a broader framework that includes other post-infectious syndromes (post-influenza, dengue, Lyme disease, etc.), based on the hypothesis of at least partially shared pathophysiological mechanisms.

• New therapeutic trials must be initiated. They must be multicenter and include better-characterized participants, particularly through the identification of relevant biological and imaging markers and standardized clinical indicators.

• Patients must be involved in the design of clinical trials and the establishment of cohorts.

Finally, resolving these issues requires the continuation and development of a research program and the formation of multidisciplinary teams involving epidemiologists, basic researchers, and clinicians (virologists, infectious disease specialists, neurologists, pulmonologists, cardiologists, etc.). These teams must be committed to the long term, with structured resources and funding. They must organize themselves at the national level and seek to better integrate into international research efforts.

Notable attendees at this first scientific conference included:

• Prof. Lionel Collet, President of the Haute Autorité de Santé

• Prof. Didier Samuel, President and CEO of Inserm

• Dr. Caroline Semaille, Director of Santé publique France

• Prof. Yazdan Yazdanpanah, Director of the ANRS Emerging Infectious Diseases Unit

• Ms. Julie Lagrave, Head of the Research and Access to Innovation Division, Directorate General for Healthcare Provision (DGOS) at the Ministry of Health

• Ms. Pauline Oustric: President of ApresJ20: Long Covid France Association

• Ms. Isabelle Leibl: Association for Long Covid in Children

• Ms. Solenn Tanguy: President of the Winslow Public Health Association