Long Covid Toolkit

Find safe and effective treatments that work for you.

EVIDENCE-BASED

The tools are assessed by doctors and epidemiologists, based on scientific literature

PATIENT EXPERIENCES

Read experiences of people with long Covid and their caregivers.

ACTIONABLE AND EASY TO USE

Tools are categorised by safety, effectiveness and symptoms. No more spending hours on searching the internet!

BY PEOPLE WITH LONG COVID

The Toolkit is founded and made by people that have a lived experience

Why build the toolkit?

Over 65 million people worldwide suffer from long Covid (*). It is a debilitating disease. Many people with long Covid cannot work anymore. Some have been bedbound for years. The economic costs to society in the United States alone, are estimated at 3,7 trillion USD (*). 

Fortunately, there are many things that people with long Covid can do on their own to manage their symptoms. The Long Covid Toolkit will be a website that combines research-based information with experiences of patients and healthcare providers. In a user-friendly, accessible and actionable format.

Testimonials

“People with long Covid do not feel heard and are often distraught because they do not know how to get rid of their complaints. I highly support this initiative because it is important to combine patient experience with scientific knowledge.”

— Diederik Gommers, MD PhD | Professor Intensive Care Medicine at Erasmus MC, Rotterdam & former member of national Covid-19 outbreak management team

"This toolkit could also be helpful for the (to be established) long covid expertise centers in the Netherlands as an up-to-date 'cookbook'."

— Merel Hellemons, MD/PhD | Clinical epidemiologist, pulmonologist and long Covid researcher

"There is a need for information that can help people to make safe and effective choices and I think this project can fulfill an urgent need for people with Long Covid."

— Dr. Margaret O'Hara | Founding trustee Long Covid Support, author in Nature, BMJ, Lancet - has long Covid

Toolkit prototype

The Toolkit combines the latest scientific research, scored using standards developed by epidemiologists. Combined with reviews by people with long Covid and their caregivers, this gives you a good idea what treatments and tools may work for you. 

Testimonials

"The toolkit can help patients to better work on improvement of their condition, whilst scientists work on finding a proven path to recovery."

— Ellen Bark | Chair of Long Covid Nederland Foundation

"This project is an innovative way to combine existing scientific evidence with patient experiences. This will serve as an excellent starting point for clinical interventions, additional scientific research and the formation of standards." 

Ingrid Geesink, PhD - Advisor and researcher in the field of health science and technology, ME/CFS and health data re-use


"PostCovid NL is very enthousiastic about the Long Covid Toolkit. If executed well, it meets an enormous need amongst patients: a trustworthy overview of interventions, combined with actionable scientific evidence.“

— Diewke de Haen | Senior team lead PostCovid NL (Longfonds)

Help us realize the Toolkit by donating!

By donating this is how you will help make a difference in the lives of millions of people:

  • Help people with long Covid manage their symptoms safely

  • Help researchers to find interesting new topics for research and large scale trials

  • Help doctors treat their patients more effectively

The Toolkit is a not-for-profit initiative. We need € 95.000 to start up the Toolkit and the supporting organisation. Will you help us too?

About us

The Long Covid Toolkit was initiated by two people with long Covid:

Edo Plantinga. 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 and is a former startup founder. He holds a university degree in Artificial Intelligence and is the project lead for the Toolkit.

Joanneke van Der Nagel, MD, PhD. Joanneke is an epidemiologist and a psychiatrist. She works at the University of Twente as a senior researcher in the field of technological innovations in healthcare. Joanneke is the scientific lead for the Toolkit.

Community

Edo and Joanneke are joined by a growing number of volunteers. Do you have the skills to make the Toolkit a succes?

Learn more

Want to know the details? See our presentation and project plan (including budget).