Symposium on scientific research post-COVID

The symposium focused on scientific research into post-COVID. Several speakers regularly drew comparisons with other patient groups, such as Q fever (QVS), ME/CFS, and Lyme disease. The law of large numbers in post-COVID shows that patients with other post-infectious conditions can benefit from the research that is currently taking place into post-COVID. Figures indicate that 67 million people experience post-COVID complaints, of which 36 million live in Europe, 450.000 people in the Netherlands, of which 90.000 are seriously disabling. The 5 theories underlying post-COVID were mentioned several times in various presentations.

Saskia Boelema, deputy of the province of Noord-Brabant, Annemieke de Groot, director of C-support and Q-support and Alfons Olde Loohuis, medical advisor at C-support and Q-support, immediately made explicit connections with QVS, the situation of Q fever patients and the overlap between the various post-infectious diseases at the start of the symposium.

Stella Heemskerk presents the findings of the Multi-year Long COVID study in which she discusses the impact of post-COVID on people and society, healthcare use, the financial situation and work participation of patients in the Netherlands. She briefly refers to the results of the QVS database research, which were also published on this day.

Thijs van Meulenbroek discusses the PINCOR study and talks about personalized integrated aftercare for COVID-19 in the region, with two objectives: chain care and personalized care. How this can be set up and how cooperation can be increased. He talks about the disease burden meter, a knowledge document, the design of care pathways and effectiveness studies.

Judith Rosmalen talks about the Lifelines study, a multidisciplinary prospective population cohort of 167.000 residents (10% of the Northern Netherlands population) that has collected data and body materials through questionnaires and during research rounds since 2006. They continued this during and after the corona pandemic. This resulted in a globally unique dataset on physical complaints, which made it possible to map the course of both corona and post-COVID.

Thomas Hoogeboom gives a sneak preview of the results they hope to have by the end of March. He talks about the lessons learned for society, healthcare providers and policy makers. An important conclusion is that the Paramedical Recovery Care Scheme did not provide for multidisciplinary collaboration, while this is very important. Hanneke van Dongen discusses the cost-effectiveness of the Paramedical Recovery Care Scheme. The costs that people cannot go to work due to post-COVID and have started working less are much higher than the costs of the recovery care scheme.

During the presentation by Thomas Hoogeboom & Hanneke van Dongen, someone from the audience asks how we ensure that the information about the evaluation of the paramedical recovery care scheme is not lost. After the Q fever epidemic, there was already a lot of knowledge. Thomas Hoogeboom indicates that he is the chairman of the group that updates the guidelines for physiotherapy, and also has a connection with occupational therapy and speech therapy. In that role, he promises that data will not be lost and that all guidelines for patients with post-infectious conditions can be adjusted.

Rob Wüst contributes a paper on skeletal muscle adaptations to fatigue and PEM in patients with post-COVID. He discusses the results of the study and the differences between white muscles and red muscles. Healthy people had good proportions between these muscles. Post-COVID patients did not. Rob indicates that he wants to look at the similarities and differences between PEM in post-COVID and ME/CFS in future research and whether there are subgroups of patients with post-viral illnesses.

Students Olaf Nijssen and Koen Overbeek investigated the immune response to the body's own heart and muscle cells as a potential source of damage in post-COVID as part of the Long COVID Challenge of UMC Utrecht. In this study, patients were divided into three different groups. There were different autoantibodies for different groups. Pieces of blood plasma from patients were administered to mice and the results were examined. The mice started to show the same reactions as humans.

Denise Visser talks about the VeCosCo study on the visualization of (neuro)inflammation in post-COVID and shows information that has not yet been published. She talks about how the research takes place, how they can bind a tracer to a molecule cell that they have to trace, how they introduce it into the bloodstream and that it has to bind to active immune cells so that they can be visualized. This means that neuroinflammation but also other forms of inflammation have been detected throughout the body with the dynamic PET scanner, which captures moving images.

René Lutter talks about IDO2 and the kynurenine pathway. A viral respiratory infection results in the presence of the IDO1 enzyme, which breaks down the tryptophan (amino acid) that the body does not produce itself. IDO1 activity inhibits inflammation and replication of the virus. IDO1 is activated to suppress the virus, to prevent viral infections from getting out of hand. In everyone who has had SARS-COV-2, that system is activated. No IDO1 can be seen in long COVID patients. What they did see is a lot of IDO2. In 96-100% of patients, IDO2 was expressed in the proteins of patients. Cells with IDO2 have a lot of damage. In the future, IDO2 presence will also be examined in Q fever and Lyme.

Lieke Noij and Coen Lap talk about post-COVID in children and show the first results of the POCOS study. In this study they compare healthy children with children with post-COVID and the genes that have to do with the immune system. They also find that children with post-COVID have a greatly reduced quality of life, much more so than a control group with children who are chronically ill (the slides are still confidential and therefore made invisible in the video).

Hanneke Willemen talks about unraveling the underlying mechanism that causes long-term ME/CFS, QFS and post-COVID symptoms in children and adolescents. She also talks about mitochondrial and metabolic changes in nerve cells that can induce chronic pain. If the mitochondria (metabolism) are damaged, an acute pain response can become chronic.

Marieke Torensma talks about post-COVID in people with a migration background. This was a retrospective cohort study for people admitted to the Amsterdam UMC. In addition to biomedical data, social factors are also processed in qualitative research. Access to care is very complicated for this target group. In addition, the first step is recognizing the need for care and the ability to organize and coordinate care yourself is often lacking.

The last block briefly discusses future research. Veronique Timmerhuis talks about the position of ZonMw and Carrie Wegh talks about the post-COVID program and Anske van der Bom discusses the post-COVID Network Netherlands, a research program for knowledge infrastructure and expertise network. This is a learning care system where a circle is created about what you do in practice, that you collect data from it, learn from it and differentiate, that this is processed in a next guideline. That the agreements you make with each other are included in the system and that this ultimately improves all forms of research and care within this network. No fewer than 38 organizations are affiliated with more than 100 professionals.

Several studies have clearly shown that post-COVID patients are a heterogeneous group. There is so much difference in underlying mechanisms that can play a role in patients that more (bio)medical research is needed to ultimately arrive at multiple possible treatments that fit the mechanisms and complaints associated with this. Also in the coordination of care around a patient, several presentations show that the management role is lacking here and is highly desirable.

Bart Dollekens looks back on the day with the speakers and the audience. Many different topics are discussed: securing acquired knowledge, attention for informal caregivers, knowledge sharing between researchers, ethical questions surrounding post-COVID, flexibility of employers, collaboration between VWS and SZW, more female patients, importance of clean air, Long COVID Toolkit.

Finally, reference was made to the 1st Dutch Long COVID Day on April 19, where again much can be learned about Long COVID. It is an interesting and educational program for (para) medical professionals from all disciplines involved in the diagnosis and care of Long COVID patients in the Netherlands. The program will consist of plenary sessions, break-out sessions and there will be plenty of room for questions and discussion.

Here are some scientific publications of the studies presented on March 7:

• Appelman2024 Nature Comm
• Brus et al. (2023) – prolonged impact COVID-19
• Gerritzen et al. (2023) – PCC phenotypes
• Chilunga FP et al. Differences in incidence, nature of symptoms, and duration of long COVID migr. The Lancet Regional Health–Europe. 2023;29.
• NTR 2023-4- Post-COVID- E.Breedveld- Sicker from exertion

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