The Chronic Illness Survey Adventure
What is it?
An international survey-based study to probe more deeply into ME/CFS, long COVID, POTS, hEDS and MCAS – ‘Symptom Cluster Characterization in Complex Chronic Disease’.
Who is behind it?
It is a partnership between #MEAction, Columbia University, Open Medicine Foundation, the Jackson Laboratory, the University of Edinburgh, MRC and Patient Led Research Collaborative.
Who can take the survey?
People who are 18 or older AND
- You have a diagnosis from your medical provider of ME or ME/CFS, POTS, hEDS and/or MCAS OR
- You have a suspected diagnosis of Long COVID OR
- You are generally healthy, with no chronic diseases or conditions
How long does the survey take?
The survey questions are broken up into six sections. Sections will be released a month apart, and the survey will stay open for a year in total. Each section should take 15-20 minutes, except for the first survey, which can take half an hour.