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.

Get more information & register to take part

Video: Why have a survey? Jaime Seltzer and Prof Mady Horning answer questions.