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 to receive your personalized link to take the survey!
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.
What we can accomplish together
Founder & Medical Director, Bateman Horne Center of Excellence;
Dr. Susan Levine
Cornell Clinical Fellow, Ctr for Enervating NeuroImmune Disease;
Dr. Hector Bonilla
Stanford Hospital ME/CFS Clinical Coordinator, Clinical Asst Prof of Medicine & Infectious Disease;
Dr. Christina Chen
Beth Israel Deaconess Medical Center, Instructor in Medicine Harvard Medical School;
Dr. Lily Chu