When living with complex, chronic, and/or infection-associated illnesses, identifying and documenting what truly helps—or doesn’t—can be an overwhelming process of trial and error. The Brain Inflammation Collaborative (BIC) launched the What Helped, What Didn’t survey on The unhide® + Solve Together Unified Platform to systematically gather lived-experience data. This short survey asks about treatments that you may have tried—medications, supplements, diets, tools, therapies, or anything else. Sharing your experience with different treatments and whether they helped you or not can help us uncover which treatments work and better guide future care for complex conditions
This patient community-driven research effort is part of BIC’s broader unhide® Platform, designed to connect patients, clinicians, and researchers through continuous data collection and collaboration. Over 500 participants have already contributed more than 2,000 reported treatments, offering one of the most comprehensive snapshots to date of real-world treatment experiences across overlapping inflammatory and infection-triggered conditions.
The Questions
The survey asked six key questions, which include:
- What treatments have helped you the most?
- Which helped somewhat?
- Which worked at first but then stopped working?
Participants could include anything they had tried—medications, supplements, diet or lifestyle changes, therapies, or tools—and were encouraged to share open-ended insights to provide richer context.
What Helped the Most
Early responses (preliminary data) show that pacing—the structured management of activity and rest—was overwhelmingly the most effective approach, reported by more than 200 participants. Following pacing were supplements, low-dose naltrexone (LDN), dietary adjustments, rest, and antihistamines.
When medications were analyzed separately, LDN, antihistamines, and antidepressants emerged as the most commonly reported helpful treatments, followed by stimulants, beta blockers, and sedatives. This suggests that both lifestyle management and certain medications can provide meaningful support—but that responses vary widely between individuals.
What Didn’t Help—or Made Things Worse
In contrast, exercise ranked highest among treatments participants said worsened their symptoms or quality of life. Many clarified that exercises that worsened their conditions included graded exercise therapy (GET) and cardiovascular exercise. Many of these participants reported having ME/CFS.
Other frequently-reported interventions that worsened symptoms, quality of life, or overall health included antidepressants, stimulants, antihistamines, and some hormonal or autonomic-related medications like Mestinon and beta blockers. Interestingly, several treatments appeared in both “helpful” and “harmful” lists—highlighting how personal factors such as comorbidities, symptom clusters, and disease mechanisms likely play a key role in treatment response.
Comparing Helpful vs. Harmful
When viewed side by side, the data suggest a pattern: self-management interventions like pacing and supplements tend to carry lower risk, while exercise-based regimens and certain systemic medications show higher variability or risk of worsening symptoms. Many of the classes of medications that were reported as most helpful also made the most harmful list, including antidepressants and stimulants. However, one medication in particular– low dose naltrexone, or LDN– stood out as helping many responders to our survey while few reported harms.
These preliminary findings don’t establish causation, but they provide actionable insights for both researchers and patients, pointing toward areas where further study—and more personalized guidance—are urgently needed.
What’s Next
This is just the beginning. Future phases of the What Helped, What Didn’t study will analyze additional variables, including side effects, treatments that had no effect, and open-ended responses. Researchers will also explore “what works for whom”—whether specific diagnoses, demographics, or symptom clusters predict good versus poor treatment response, and how comorbidities influence outcomes.
BIC also plans to expand the study to include pediatric participants and is currently seeking collaborators and funding partners to deepen this analysis.
By listening directly to patient experience, the Brain Inflammation Collaborative aims to accelerate discovery and bring visibility to what patients have long known: real-world data is a vital key to understanding chronic illness and improving lives.
Join the unhide® Platform
You can help shape this research. Join the unhide® platform to contribute your experiences, track your symptoms, and connect your wearable data to support discovery across 30+ chronic conditions. Together, we can uncover what helps—and what doesn’t.
Written By
Natasha Graves
Former Director of Marketing, Brain Inflammation Collaborative
