UPDATES: Reminders will be going out this month. You might receive a specialized link to continue a section if you started but didn’t finish it; and you’ll receive reminders to continue to the next section as we finish up, even if you haven’t heard from us in awhile.
Reach out to [email protected] if you have any difficulties.
Issue affecting those who took Section 4 on 5/16: Some responders had to be manually added to the list of those who have completed Survey 4. You can move on to Survey 5 now using the same invite links.
Common issue: You just finished a survey and click on the next survey right away; it won’t let you in.
What this looks like: asking for your ID number
Solve this by: waiting a few minutes and clicking again. Qualtrics can take up to 7 min to add you to the list of folks who can move on to the next survey. If you continue to have trouble, reach out to [email protected].
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.