Invisible disease, multidisciplinary answer: the need for a Belgian Long Covid Research Network

The current Long Covid epidemic highlights the inadequacy of both medical and societal structures in addressing biopsychosocial issues. This new illness presents an unprecedented scientific challenge, remaining largely invisible to conventional clinical technoscience. The SARS-CoV-2 virus affects the entire human body, compromising its integrity and making it socially invisible.
There is a communication breakdown between Long Covid patients, who feel abandoned, and physicians, who seem unaware of the gravity of the situation. Policymakers, at least in our country, lack awareness of the scale of this phenomenon. Acknowledging these challenges and in partnership with patients in primary care, we began by observing, listening to, and understanding patients, while studying their cases in light of the existing literature.
Inspired by the COVID Human Genetic Effort initiative, a group of Belgian researchers started a Long COVID Research Network in collaboration with the Belgian Long COVID Patients Association. We aim to expand the network by bridging biomedical sciences and the humanities to grasp the full scope of this condition. Information sciences directly link primary care clinics and high-level research centers.
This Belgian Long Covid Research Network now encompasses more than 200 clinically identified patients (with a 2:1 female-to-male ratio, and an average age of 42 years). These patients have undergone brain imaging (SPECT-CT), multi-omic analysis, and neurobiological studies, as well as anthropological and clinical care approaches. We have successfully identified previously neglected patients, made the invisible visible, proposed Long Covid diagnostic biomarkers, and established therapeutic partnerships with patients from across Belgium. Our recent publications have documented the need for patient-centered research (Jamoulle et al. Nature 2024, Menezes et al. Lancet Microbe 2024). Because of the clinical and biological similarities and the large societal need, we are also extending our research into other post-infectious illnesses such as ME/CFS.
We are actively seeking national and international collaborations (and urgently needed funding) in areas as diverse as immunology, virology, imaging, occupational medicine, health economics, and the epistemology and ethics of care.