Funding the search for answers about post COVID-19 condition: how Stichting Long COVID is stimulating research in the Netherlands

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"What I don't understand is why there isn't more of a sense of urgency about funding research into long COVID, when it is costing society so much," says Ellen Bark, co-founder of Stichting Long COVID, the Dutch long COVID foundation.

"So far, much of the focus has been on the epidemiology, logging of symptoms, sending out of questionnaires, and the organization of health care," says her fellow co-founder, Annelies Bos, who has herself been living with long COVID for the past 3 years. "There have been very few studies looking at the biomedical part of this disease."

The long COVID foundation seeks to fill this gap by dedicating itself exclusively to fundraising for biomedical research, or research that examines the biological and physical reasons for the condition, including reasons for autoimmunity (where the body's immune system attacks its own tissues). Annelies describes how this complements the work of other long COVID organizations in the Netherlands that concentrate more on supporting patients with information, care and rehabilitation, organizing peer contacts or political lobbying, for instance.

"It works because we are all aiming for the same goals, and we are all sending the same message that we need to understand the causes of long COVID so that we can develop treatments. And to do that, we need money."

A clear focus 

Both Ellen and Annelies come with experience very relevant to developing the foundation: Ellen has expertise in fundraising for start-up businesses and is used to managing complex multiparty innovation projects, while Annelies is a doctor with a large network of contacts in the medical and scientific world and an active member of the Dutch community of long COVID patients. Together, they are raising money from private sources, both through crowdfunding and through targeted fundraising from high-net-worth individuals, family-run businesses and non-profit organizations.

With studies showing that 10-20% of people who develop COVID-19 go on to experience a variety of mid- and long-term effects after they recover from their initial illness, the foundation is driven by patients' need for urgent answers. Therefore, the long COVID foundation has 4 clear values that shape its mission: speed, solution orientation, collaboration, and focus.

Speed and solution orientation 

The long COVID foundation has created a team of 8 dedicated researchers who scan and compile the latest research into the condition, so that funding can be directed towards the research they've assessed as having the greatest potential. 

"Scientists can approach us with proposals for research projects that require between US$ 15 000 and US$ 100 000 of funding, and within 2 weeks we can let them know whether or not it's in our scope, or whether we need to know more before funding it." 

They currently have a patient sounding board, composed of doctors who themselves have long COVID, which means that any funding decisions can be fairly assessed by people with an understanding of both the condition and the science behind it. They are now expanding the board to include non-medical participants.

Collaboration 

Another part of their work is stimulating new research, as Ellen explains. "We don't just raise money. We also go directly to scientists to see how we can develop concrete research plans or pilot projects to fund. Since there is so little knowledge, we need to stimulate a lot of good ideas that can generate pilot projects that could give direction to bigger research programmes. Then we envisage a top-down, global research set-up, which brings together different disciplines from different medical fields." 

To this end, the foundation aims to team up with scientists leading flagship projects and to encourage collaborative work that brings results and stimulates more research.

"Our goal is to set up a national long COVID research consortium with the collaborating university medical hospitals in the Netherlands, so that together we can build up a national patient cohort and biobank."

Late last year the long COVID foundation funded its first piece of targeted long COVID research into autoimmunity. The proposal for this research was generated by a think tank composed of 400 undergraduate biomedical science and medicine students from Utrecht University, under the guidance of researchers from the immunology departments of the Utrecht and Amsterdam university medical centers. As part of the research, students were first given the opportunity to talk to people experiencing long COVID symptoms to understand the impact of the condition. They then looked at existing research on autoimmunity and investigated how autoantibodies contribute to the development of long COVID symptoms, identifying which ones were involved. Next, they were challenged to see if existing pharmaceutical drugs could be used in the treatment of long COVID and to come up with out-of-the-box proposals that could further improve understanding of autoimmunity. Within 3 weeks, the student research hub generated 12 high-quality research proposals for consideration.

Niels Eijkelkamp, principal investigator in the division of laboratories, pharmacy and biomedical genetics at University Medical Center Utrecht, comments, "A professional researcher who has focused on an issue for some time may eventually develop blinders. These talented students from different disciplines are not burdened with that and can look at the topic with an open mind." 

Although Ellen and Annelies dream of solving long COVID, they believe that even small discoveries that pinpoint the physical causes of the condition would help patients by increasing recognition and bringing hope that there might one day be successful treatments.

"The hardest thing for most patients at the moment is the question of how long it will go on," says Ellen. "They just don't know. If we can address that aspect, it would be helpful. If we can find solutions, we can basically give them their lives back." 

Across the WHO European Region at least 17 million people were believed to have experienced post COVID-19 condition (long COVID) in the first 2 years of the pandemic alone. WHO/Europe is working with Long COVID Europe, a network of long COVID patient associations run by current and former long COVID patients, to ensure that the condition is taken seriously by governments and health authorities through greater recognition and knowledge sharing, research and reporting, and rehabilitation.