UPDATES: We’ve resolved our technical difficulties after rolling up our sleeves! That means that folks who’ve taken Survey 1 should receive Survey 2 invites in batches. Next, we will release Section 3.
The Chronic Illness Survey Adventure (Symptom Cluster Characterization in Complex Chronic Disease) is a survey-based study to probe more deeply into ME/CFS, Long COVID, POTS, hEDS, and MCAS. Our survey began by examining the symptoms listed in sets of diagnostic criteria for each illness. Then, we incorporated validated surveys for complex symptoms such as pain or fatigue. But that was just the beginning.
Next, we recruited clinical partners to help recruit participants and validate their own patients’ diagnoses, and partners with lived experience of each of these diseases. Together, we gathered patient-reported symptoms not present in any set of criteria.
Now, we need your help to gather the richest dataset on complex chronic disease ever created. Let’s discover more about what we have in common and more about what makes us unique. Join us on this year-long adventure!
Join the adventure!
Sign up by clicking below
Once you’ve signed up, check your email!
Learn more about the study and why your symptom story is unique and valuable.
Clinician's Landing Page
Register to validate your patients’ diagnosis.
Help spread the word to ensure that everyone can tell their symptom story.