Give people with long Covid back their life, by helping out.
The Long Covid Toolkit combines the latest scientific evidence with experiences of patients and their caregivers. The Toolkit can only be made with a lot of niche medical and paramedical expertise. We encourage researchers and healthcare providers to help make the Toolkit a trustworthy source of information, for patients, healthcare providers and researchers.
The Toolkit will be overseen by a scientific board, a clinical board and a patient committee. One of the founders of the Toolkit is an epidemiologist.
This is how you can help as a researcher of healthcare provider:
Review and improve the classification system we developed, based on the GRADE system.
Use our classification system to summarize scientific information about supplements, medications and paramedical therapies (such as pacing).
Help develop resources about treatment strategies such as pacing, vagus nerve stimulation, etc.
Help assess diagnostic self-tests for common symptoms and problems such as POTS and PEM.
Be part of our clinical board, that oversees what content is published in what way.
Be part of our scientific board, that oversees and helps improve the classification system.
Once the first version of the Toolkit website is online (summer 2023): review treatments from your clinical experience.
This is how we work:
The Long Covid Toolkit is a not-for-profit initiative. We will work volunteers and a small paid staff. Anyone contributing more than 40 hours of their time is eligible for a paid position.
We work in a distributed team via Discord (chat) and Trello(tasks manager).
Your contributions can be anonymous if you prefer, as long as one of the team members can verify your background.
Want to know the details? Read the project plan, check out the current tasks and read the community strategy.
Will you join us?
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