Team
See who’s working on the Toolkit and how it all started.
Edo Plantinga
Co-founder and director
Edo works as a freelance IT project manager. He was the community manager for the national open source Corona app (Coronamelder), overseeing a community of thousands of volunteer contributors. He has expertise in user experience design, he is a former startup founder and he holds a master’s degree in Artificial Intelligence. He is recovering from Long Covid.
Joanneke van der Nagel, MD/PhD.
Co-founder and scientific lead
Joanneke is an epidemiologist and a psychiatrist. She works at the University of Twente (The Netherlands) as a senior researcher in the field of technological innovations in healthcare. Joanneke is recovering from Long Covid.
Ria Wolkorte, PhD.
Scientific supervisor
Ria is assistant professor Citizen Science for Health at the Department of Health Technology and Services Research at the University of Twente. Her research focuses on fatigue and self-management of people with chronic conditions. In her research, she applies a citizen science approach so that the knowledge and expertise of researchers, patients, and other stakeholders are utilized throughout the research process; from project idea to dissemination and implementation. Ria oversees the scientific content creation of the Toolkit.
Janine van Til, PhD.
Scientific supervisor
Janine van Til is an associate professor of Health Preference Research at the Department of Health Technology and Services Research at the University of Twente. Her research focuses on increasing patient involvement in decision making in health on the clinical and policy level. In her research, she focuses on the development and evaluation of patient decision aids, the use of value clarification methods to understand patient preferences for their own health, and the use of health preference instruments to improve our understanding of the patient perspective in policy decision making in health.
Lieke Heesink, PhD.
Scientific supervisor
Lieke is an assistant professor at the department of Health Technology and Services Research at the University of Twente. Her work focuses on transformation of health care with the use of technology. In her research, she uses both a quantitative and qualitative approach. She has experience with the involvement of patients and other stakeholders in research.
Tsehaynesh Spit
Student researcher
After graduating as an Applied Psychologist, she pursued a bachelor’s degree in Health Sciences. As an Applied Psychologist, she specialized in Behaviour and Technology, highlighting the interaction between humans and technology and exploring ways to optimize this interaction. Within Health Sciences, her focus lies on implementing changes within healthcare to improve its quality. Her goal is to contribute to making healthcare more accessible worldwide.
József Márton Kakas
Project Member
József is a dedicated software developer and computer science student at the University of Twente. With a focus on creating impactful software, he has contributed to a variety of projects ranging from IoT smart home systems to digitalizing educational processes. He actively contributes to the open-source community and enjoys working on innovative solutions that enhance everyday life. His life was severely impacted by fibromyalgia which drives his commitment to the Long Covid Toolkit project.
Volunteer team
Janneke Scherpenisse
As a 63-year-old individual who has dedicated her life to education and healthcare, I am passionate about patient experiences. Since February '22, I’ve been on a personal journey of recovery, which has deepened my understanding of the importance of placing patients at the heart of healthcare initiatives. I have been involved with the Toolkit from the start. My special interests are crowdfunding, collaboration, and fostering connections.
Michael Alexander
Michael has a background in zoology and psychology, with a special interest in nature connectedness. They are an active member of the Long Covid community and involved in various projects, such as Long Covid Support, Renegade Research, Remission Biome, CrunchME, and he is one of the LC-PLAN advocacy graduates.
Simon van der Schaft
Simon van der Schaft is a traffic engineer work in developing behavioral campaigns to enhance road safety. Simon lives in The Netherlands. He has also delved into marketing for various nonprofit organizations and the commercial solar sector. Driven by a passion for making a tangible impact, Simon thrives on navigating strategic marketing puzzles.
Photo by Zassfotoos.
Nicole Eichsteadt-Meyer
Nicole is a U.S. based volunteer content writer for Long Covid Toolkit. She holds a Master’s in Education and has worked with several non-profits throughout her professional career. As a chronic-illness sufferer herself, she is excited to be part of Long Covid Toolkit because it offers people a place to find quality resources and information with which they can advocate for themselves. She hopes that this website will be a valuable resource for the Long Covid community, and believes that it is a success if even one person is helped. Nicole spends her free time traveling with her husband and their pets, reading and writing, and enjoying the company of friends and family.
Sarah Weston
Sarah is a UK Registered Dietitian with experience working in the NHS, academia and non-government organisations. She has specialised in adult health and wellbeing, helping set up one of the first staff health and wellbeing services in the NHS where she ran a dietetic clinic. Sarah also specialises in maternal, infant and child health, has contributed to national public health policy work on infant and early years nutrition and is a passionate advocate for integrity in professional practice.
Sarah is a volunteer for the research and health advocacy team at Long Covid Support, a patient led charity registered in England and Wales and a Trustee for the Health Education Trust. She currently lives in the Netherlands and has had Long Covid since 2021.
Contact us if you want to be listed as a volunteer here too!
How the Long Covid Toolkit started
The idea for the Long Covid Toolkit started towards the end of 2022, when project manager Edo Plantinga and psychiatrist-epidemiologist Joanneke van der Nagel, both from The Netherlands, were introduced. By then, Edo had been suffering from Long Covid for nearly a year. After reading numerous books on Long Covid and ME/CFS, he discovered the existence of some promising interventions. However, he realized a significant problem: there was no centralized overview of these treatments. This prompted him to come up with the idea of the Toolkit, which he shared on the now-defunct Body Politic online patient forum. Around the same time Joanneke, as both a doctor and a Long Covid patient, initiated an online patient group for healthcare providers suffering from Long Covid, which helped refine the idea of the Toolkit. Together, they saw the urgent need for a structured and accessible source of treatments, which became the foundation for creating the Long Covid Toolkit.
In 2023, the Long Covid Toolkit began to take shape, although progress was slowed by the illnesses of founders Edo and Joanneke. Despite these challenges, they managed to secure Swis as a sponsor to build the first working prototype and were supported by a growing team of volunteers. They also applied for a subsidy from ZonMw, a Dutch government agency. Due to health reasons, the project's activities were paused for about five months, until the subsidy was granted in March 2024. This funding marked the restart of their efforts and the founding of the Long Covid Toolkit Foundation.