long covid

• Sander Zurhake

  health care editor

Scientists in the Netherlands warn that the few studies into lung covid could come to a standstill or be delayed. Funding for researchers’ salaries is not properly arranged. That is why researchers with rare knowledge about lung covid sometimes switch to other projects, according to a tour of the NOS.

“We could miss great opportunities if the situation remains the same,” says Judith Rosmalen, who, as a professor of psychosomatics at UMC Groningen, is the project leader of one of the largest studies into lung covid.

“Because a lot of people have had covid, we have collected detailed data from people before and after the infection on a large scale. That is unique. So there is a momentum to learn a lot,” emphasizes Rosmalen. “Not only about lung covid, but also about similar post-infectious syndromes such as Q fever fatigue syndrome and long-term complaints in mononucleosis, which may have the same mechanisms.”

But the money is running out. There is no prospect of structural financing. In the Netherlands, scientific research depends on subsidies from the Ministry of Health that are awarded through the government organization ZonMw.

They are usually large enough for four years of research and the salary of the PhD students who work on it. But the lung covid projects have funding for a maximum of 15 months.

Researchers therefore receive short-term contracts. And that doesn’t work efficiently, say scientists Chahinda Ghossein and Sander van Kuijk. They supervise the Maastricht UMC + study in which data from more than 10,000 ex-covid patients are combined and analyzed.

They sometimes have to hire new people because team members leave who see an opportunity elsewhere. “A roof tile construction,” says Van Kuijk. “Because we can’t say at the start: ‘We have money for four years’.”

Research is often still in its early stages. Until now, a lot of time has been spent on administration to guarantee patient privacy and legally arrange that there is access to patient data at all.

“We are forced to answer only those questions that are most relevant,” says Ghossein. “But when the subsidy is finished, we still have a mountain of data with which you can answer a lot of other relevant questions.”

ZonMw recognizes this problem. “We will submit a proposal to Minister Kuipers on 1 March. We advocate longer research,” said a spokesperson.

It remains to be seen if and when Kuipers agrees to this. He previously indicated that he would first like to investigate what research is already underway abroad, in order to avoid duplication of effort. The Netherlands has asked the EU Health Council to discuss this plan during its meeting on 13 March.

It is unclear whether there is support for this in the EU. And if an agreement were to be reached, it is also not clear when such a scientific inventory can be started or who should do it. “It is not yet known which government or organization should take responsibility for this,” confirms a VWS spokesperson.

It is unlikely that funds will become available immediately this year. Problematic because researchers then have to bridge a period without money. It is feared that their valuable knowledge will then be lost because they will do other work.

Scientists are growing annoyed about the bureaucracy. “I don’t think it’s the job of politicians to take the lead in such research,” says professor Rosmalen. “Good overview studies have recently been carried out. We really know which follow-up research deserves priority.”

Researchers are therefore trying to find money elsewhere. At the Amsterdam UMC, doctor and PhD student Brent Appelman is given the opportunity to organize a lot for lung covid projects in addition to his actual PhD trajectory around sepsis and covid-19. Because his salary has already been arranged, they are not dependent on lung covid subsidies.

“But that’s not enough. At a certain point you have to go in depth and that includes specialist tests and that costs money.” Appelman and colleagues have received a grant from the international Patient-Led Research Collaborative. An organization founded by scientists with lung covid. They find governments too slow and raise funds themselves.

There is also such an organization in the Netherlands, the Long Covid Foundation. “We hope to collect enough money this year to run studies for a year or more,” says Annelies Bos, lung covid patient and one of the founders. “In this way we stimulate new research and prevent research from coming to a standstill and crucial knowledge from being lost until structural funding from the government comes again.”

According to Appelman, the latter should not really be a discussion given the impact of lung covid. Conservative estimates assume tens of thousands of people.

“Then you are talking about a disease in the top fifty, comparable in scope to Parkinson’s and multiple sclerosis. And with lung covid you often also talk about young people. In addition to all the social suffering, that is also an economic problem. If we don’t find a solution, we will soon lose tens of thousands of people who could work for another thirty years.”