Last Friday, the 3 took place at the Prodent factory in Amersfoort.e The Dutch Long COVID Day took place, organized by Academic Medical Education in collaboration with the Long COVID Foundation and C-support. The meeting brought together researchers, healthcare providers, and patients and offered a current and compelling picture of where we stand in research and care regarding Long COVID, and what steps are still needed.
The day began with a personal and emotional opening. Clinical psychologist and expert by experience Sabine Tjon Pian Gi recited her self-written poem via a livestream. We can go to the moon, but we don't understand Long Covid yet. before. It vividly portrayed the impact of the disease on daily life and immediately set the tone: Long COVID is more than a medical issue.
Plenary sessions
In the first plenary session, 'Where do we stand now?', Chris Hagen, internist-nephrologist at Meander Medical Center, outlined the current state of affairs regarding this multisystem disease. He emphasized that many patients still do not feel seen or helped within the healthcare system. The cause of Long COVID has not yet been sufficiently elucidated, and for the time being, treatment focuses primarily on symptom management. He called the expiration of funding for the centers of expertise at the end of this year particularly concerning, as it puts the continuity of knowledge and care under pressure.
In the session that followed, Lous Rijssenbeek, pulmonologist and medical advisor at C-support, spoke about supporting 38.000 people with Long COVID. Yvonne's story was shared as an example. A young, fit ICU nurse who became seriously ill after contracting the coronavirus. Her symptoms also led to the loss of her job, relationships, and future prospects. Stories like these show that Long COVID affects every aspect of life and that patients often need a large network of healthcare providers, even more so for children than for adults.
Specific attention was paid to less researched groups, such as children with post-COVID. Stephanie van Straaten, Pediatrician at Amsterdam UMC, pointed out that an estimated 60.000 children have symptoms, but that waiting times at pediatric expertise centers are currently manageable. The elderly, people with a high care impact, and people with a migration background were also addressed.
Scientific insight
International speakers offered additional insights. Carmen Scheibenbogen (Charité Berlin) emphasized PEM as the core complaint and pointed out similarities between Long COVID and ME/CFS. Anne Maitland (Medical University of South Carolina) discussed the role of mast cells and the immune system in SARS-CoV-2 and Long COVID.
The in-depth scientific study focused on, among other things, PEM, POTS, MCAS and autonomic dysregulation, autoimmune mechanisms, abnormal blood clotting, muscle disorders, and the nervous system. The core message for healthcare providers was clear: recognize the disease, acknowledge the symptoms, and carefully explore what is at play, with sound diagnostics and an eye for co-occurring issues.
The expert clinics painted a realistic yet hopeful picture: by starting small, learning quickly, and dynamically adapting guidelines, work is being done on further development towards better and insured care in collaboration with primary and secondary care. This is being done despite the long waiting lists of 18.000 patients. Innovative research designs must accelerate this process.
Choice sessions
In the care selection sessions, the focus narrowed further to cognitive and other neurological symptoms, among other topics, as well as prognosis, treatment, and sustainability within the UWV framework, as presented by Ernst Jurgens and Jim Faas. General practitioner and expert by experience Jelle Struik provided GPs with practical tools to better recognize the disease. Asking not about symptoms, but about what someone is still capable of doing and how much recovery time is needed, can provide significant insight. He also highlighted the usefulness of wearables, such as smartwatches, for better monitoring workload and recovery.
General conclusion
The day concluded with a wonderful panel discussion reflecting on what has been achieved so far and looking towards the future, demonstrating that hard work is being done on many fronts to achieve progress. At the same time, it became clear how significant the impact of Long COVID is and how many questions remain unanswered. Researchers are searching for causes, biomarkers, and improved diagnostics; healthcare providers are building appropriate care. The combination of in-depth scientific analysis, personal stories, and practical insights underscored the importance of collaboration, knowledge sharing, and taking decisive action, always keeping the lives of patients as the starting point.
Images 2, 3, and 5 were created by Saskia Koot.
