Long Covid Toolkit
Find safe and effective treatments that work for you.
The tools are assessed by scientific experts and medical professionals, based on scientific literature.
Evidence-based
Read experiences of people with Long Covid and their caregivers.
Patient experiences
Tools are categorised by safety, effectiveness and symptoms. No more spending hours on searching the internet.
Actionable and easy
The Toolkit is founded and is being developed by people that have lived experience of Long Covid.
By people with Long Covid
Why build the toolkit?
Some patients are
bedbound
for years
The economic cost is
$3,7 trillion
in the US alone
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.
”
— Professor 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'."
— Assistant professor 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 | Founder Trustee Long Covid Support, author in Nature, BMJ, Lancet | lived experience of Long Covid
Toolkit prototype
The Toolkit fuses the latest scientific research, scored using standards developed by epidemiologists. Combined with reviews by people with Long Covid and healthcare providers, the Toolkit 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 enthusiastic 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 | Director PostCovid NL
Give people with Long Covid their life back. Donate now.
By donating you can help make a difference to the lives of millions of people. You can donate directly using this form, or go to the crowdfunder to read more details.
Community
Do you have the skills to help make the Toolkit a success? Join a growing team of volunteers! Many of us have lived experience of Long Covid.
Learn more
Want to know the details? See our policy plan.