unhide® Project: What Helped, What Didn’t
About This Project
What Helped, What Didn’t is a bespoke survey instrument developed by BIC to elevate the patient voice in the study of complex chronic illnesses and conditions.
For many living with chronic illness, the journey to find effective treatment is often one of trial and error. This study aims to transform those individual lived experiences into actionable data. By documenting which interventions have provided relief, which haven’t, and equally importantly, which have caused harm, we can build a clearer map of the treatment landscape for the entire community.
The survey is open to individuals living with complex chronic conditions, such as infection-associated chronic conditions like Long COVID, ME/CFS, PANS/PANDAS, and Lyme; autoimmune diseases; systemic inflammatory disorders like MCAS, fibromyalgia, and endometriosis; dysautonomia and POTS, and related conditions. It focuses on your personal history with various treatments and management strategies. This is a recurring effort to ensure the most current patient experiences are represented; we previously shared early community insights from participants with Long COVID and ME/CFS during a SolveME-hosted webinar in October 2025 (view here) and are now expanding our efforts to deepen these findings.
Research Goals
The “What Helped, What Didn’t” initiative is driven by four core objectives aimed at improving the standard of care for communities with complex chronic conditions:
- Identify Effective Interventions: Systematically map which treatments, supplements, and lifestyle changes provide the greatest symptomatic relief across different patient phenotypes.
- Prevent Treatment Harm: Explicitly document therapies that cause setbacks or “crashes” to help patients and clinicians avoid potentially harmful interventions.
- Bridge the Data Gap: Transform individual “trial and error” experiences into structured, aggregate data that captures the reality of living with infection-associated chronic conditions.
- Inform Future Research: Use patient-reported outcomes to highlight high-priority areas for deeper clinical investigation and personalized medicine.
Brain Inflammation Collaboration Lead Researchers
What Helped, What Didn’t was developed by the Brain Inflammation Collaborative Research Team, and the research effort is currently led by the individuals below:
Megan L. Fitzgerald, PhD
Scientific Director & Principal Investigator
Dr. Fitzgerald is Scientific Director and Principal Investigator at the Brain Inflammation Collaborative, where she studies how immune activity influences mood, cognition, and neurological health. Her prior research at Weill Cornell, Mount Sinai, and Columbia University focused on neuroanatomy, neural stem cells, and the biology of suicide risk, earning NIH and NARSAD Young Investigator Awards. After developing Long COVID herself, she pivoted to patient-led research, co-leading large-scale studies on post-viral illness through the Patient-Led Research Collaborative. Her current work bridges neuroscience and lived experience to uncover the mechanisms linking inflammation to brain and behavioral symptoms.
Deborah L. Burk, PhD
Co-Principal Investigator
Dr. Duricka earned a B.S. in Biochemistry from UCLA and a PhD in Neuroscience from Washington State University. She has worked as a research scientist at institutions including the Huntsman Cancer Institute, the Salk Institute for Biological Studies, and Novartis, with research spanning molecular genetics, metabolic and cardiovascular disease, sleep neuroscience, human pathogens, and consequences of congenital cytomegalovirus infection. She is currently a Clinical Research Scientist at Neuroversion Inc. and an Affiliate Assistant Professor of Health Sciences at the WWAMI School of Medical Education. Since 2019, her work has focused on Long COVID, ME/CFS, and other infection-associated chronic conditions, including research on stellate ganglion block (SGB) that helped support its selection for clinical testing in the NIH RECOVER-TLC initiative.
James Hunt, MPH
Clinical Research Assistant
James Hunt is a public health researcher focused on rehabilitation, chronic illness, and patient-centered studies. He began his work in cardiac and pulmonary rehab, analyzing COPD readmissions and developing pilot programs to improve patient outcomes. After earning his MPH from Grand Canyon University and interning at the Mayo Clinic AI Department, he expanded his research to substance use, mental health, and rare diseases. More recently, James has focused on long COVID, leading initiatives that combine clinical insight, patient experience, and data-driven approaches to understand and address persistent symptoms.
Kelsey Aguirre, MS
Clinical Research Assistant
Kelsey Aguirre earned her BS in Biology from Texas Tech University, then moved to New York City and studied melanoma metastasis at Weill Cornell Medical College. After, she continued to work in oncology as a Junior Scientist at a start-up that focused on small-molecule production. In 2021, Kelsey began her MS in Biomedical Data Science at the Icahn School of Medicine at Mount Sinai. She studied computational modeling under Vincenzo Fiore at the Center of Computational Psychiatry and completed her thesis optimizing a variety of models for behavioral data from severe OCD patients treated with Deep Brain Stimulation. When she isn’t researching, Kelsey enjoys doing yoga, traveling, and seeing live music with her friends.
Christina Moon, AB
Clinical Research Assistant
Christina Moon is a Clinical Research Associate with the Brain Inflammation Collaborative. She earned her A.B. in Sociology with a minor in Chinese Culture & Language from Princeton University. Christina is passionate about advancing health equity and improving inclusivity in medical research, focusing on empowering patients through collaboration, education, and advocacy. Her work supports BIC’s mission to make research more accessible and representative of diverse patient experiences.
What Do We Ask?
What Helped, What Didn’t includes questions like:
- Which treatments have helped you the most with your symptoms, daily life, and overall health?
- Please list any treatments that you had to discontinue due to side effects, even if the treatment helped certain symptoms.
- Which treatments have worsened your symptoms, quality of life, or overall health?
The questionnaire takes around 10 minutes to complete and can be done on a computer or mobile device. If you’re busy or get tired, you can save your progress and return to it later.
Who Can Join?
Anyone who is eligible to join unhide® and is 7 years of age or older can take part. Participants under 18* will need a parent or legal guardian to assist with consent and completing the survey.
*dependent on legal age (age of majority) by location
Anyone with any of the 30+ conditions associated with brain inflammation and their caregivers are invited to contribute their knowledge and experience. The information you have won by hard experience is vital to helping researchers understand how different treatment approaches affect these conditions.
How Can I Help?
By sharing your experiences through What Helped, What Didn’t, you can help researchers understand how conditions and symptoms respond to different treatment approaches. You (or your child) can take the survey even if you do not have a clear diagnosis!
- Sign up or log in to the unhide® Platform.
- What Helped, What Didn’t will appear under the “Surveys” section of your dashboard.
- Take the PMQ at your own pace. It will take about 10 minutes to complete. You can pause and return to finish it at any time.
What's In It For Me?
By taking part, you’ll:
- Contribute directly to research that could improve understanding, diagnosis, and treatment of symptoms and conditions associated with brain inflammation
- Help shape the future of care for people with chronic and infection-associated illnesses.
- Receive an optional summary of study findings once data collection and analysis are complete.
Help Us Spread The Word
The more people who share their journey, the stronger and more representative our findings will be.
Please consider sharing this study with friends, family, or online communities affected by infection-associated chronic conditions (IACCs), including Long COVID, ME/CFS, Chronic Lyme, PANS/PANDAS, and related disorders, as well as those affected by other complex chronic conditions, like fibromyalgia.
Together, we can move beyond “trial and error” to build a safer, more effective map for recovery. Your data helps the entire community understand which treatments offer true relief and which may cause harm.
To learn more about the What Helped, What Didn’t survey and our latest research initiatives, check out our blog or sign up for the platform.
