C-support participates in key networks to share knowledge and promote collaboration towards better care for people with post-COVID-19. We are represented in both the Post-COVID Network Netherlands (PCNN) and the Network of Expertise on Long COVID (NELC). NELC is a partnership established by the European Commission, in which, in addition to C-support, PCNN and ZonMw are also represented on behalf of the Netherlands. The Ministry of Health, Welfare and Sport (VWS) participates as an observer.
Pioneering role
"The Ministry of Health, Welfare and Sport also played a crucial role in establishing the network in 2023," says medical advisor Alfons Olde Loohuis, who, along with his colleague Lous Rijssenbeek, participates in NELC meetings on behalf of C-support. "Ernst Kuipers, then Minister of Health, Welfare and Sport, championed this cause in Brussels, particularly at the urging of patient organizations and C-support. We felt, and still feel, it's crucial to share as much knowledge and experience as possible. Especially when it comes to a complex disease with an enormous impact, about which there's still so much to learn."
Non-believers
All countries appear to be struggling to better tailor treatment and care to patients' needs, says Alfons. "What we all experience as a major problem is that a significant portion of the medical community still refuses to recognize the condition as such. These non-believers among doctors and specialists—and there are still an incredible number of them—not only frustrate the patients in question and their treatment, but also hinder the structural improvement of care. So there's still a lot of work to be done."
The voice of patients
The meetings also reveal that there are enormous differences in approach from country to country. “This, of course, also has to do with how healthcare and its financing are organized. For example, you don't see an aftercare organization like C-support elsewhere. This makes us unique in Europe and truly adds value to the network. For example, Lous and I are the only Dutch participants who see patients, in our role as medical advisors. So we can share our own experience of the real concerns and needs of patients. And of course, we do.”
Important insight
NELC members meet approximately once a quarter, usually online. All participants can propose topics for the agenda. "For example, as the Dutch delegation, we shared how the PCNN works. We also exchanged results of certain treatment options and the off-label use of medications. This paints a very clear picture. For almost all interventions, you can say that 55% of patients benefit, 20% notice no effect, and 25% experience adverse effects. Especially in post-COVID care, we really need to continue to assess each patient individually to see what can be helpful."
Wishes and suggestions
Alfons is pleased that the Ministry of Health, Welfare and Sport is committed to maintaining the European network. He does have some suggestions for the future: "We already see countries reaching out to each other to join forces, but more coordination in research would be absolutely welcome." Another wish concerns interaction within the network. "Meeting each other in person generates a different energy and impact than online. I'm thinking, for example, of organizing working visits. But also a conference, where we can share our lessons and insights with other stakeholders. That could certainly give new impetus to the exchange within the network."
Below are links to the European Commission's webpage on NELC and a report on "Long COVID across the EU: definitions, guidelines, and surveillance systems in EU Member States."
