Have you ever experienced brain fog? Maybe you’ve had a hard time thinking straight with no immediate or apparent cause, or felt mentally fatigued over a long period of time? Have you tried to describe these experiences to your healthcare providers, friends, or family, and struggled to find the right words to explain them?
The Brain Inflammation Collaborative has partnered with Dr. Mara Kuvaldina of Columbia University to help people who experience brain fog by using real-world experiences to help researchers and doctors understand brain fog better as a symptom and identify it when evaluating a patient.
To do so, we designed a new survey—the Brain Fog Questionnaire (BFQ)—which is now live on The unhide® Solve Together Unified Platform! Your experience is your expertise, and we would be grateful to get your insight!
What is Brain Fog?
“Brain fog” is a general term many people use to describe the feeling of mental sluggishness, confusion, and reduced ability to receive and process information. Some people may describe their experience of brain fog as walking into a room and forgetting why they’re there. For others, it’s the inability to find words to express how they feel or difficulty concentrating on everyday tasks. Brain fog may accompany many different chronic illnesses, such as Long COVID, ME, Lyme, POTS, and autoimmune diseases. Brain fog is subjective, and people experience and describe it differently. That’s one of the many reasons this research is so important. Studies like this can validate patient experiences that have previously been dismissed and amplify patient voices.
Through the Brain Fog Questionnaire, we can capture various aspects of people’s experiences to help scientists and doctors better understand brain fog through the lens of personal insight. A few minutes of your time can help us fill in key blanks.
“While brain fog is recognized as a disruption in cognitive functioning, the precise neurobiological mechanisms underlying this phenomenon remain poorly understood. A salient characteristic of brain fog is the individual’s awareness of altered mental clarity, which is distinctly perceived as a deviation from their typical cognitive baseline. ”
-Mara Kuvaldina, PhD
Associate Director of the Clinical Trials Network for Lyme and other Tick-Borne Diseases
Assistant Professor of Medical Psychology (in Psychiatry), Columbia University Medical Center
What is the Brain Fog Questionnaire (BFQ)?
The questionnaire has detailed, easy-to-follow instructions and includes:
- Simple questions about your own experience of brain fog
- Validated quality-of-life assessment focused on how brain fog impacts your daily activities
- A brain fog “word cloud”—a fun thought experiment in which you can choose how well different descriptive words or phrases describe your experiences of brain fog.
- Multiple choice and open-ended questions about factors that influence or trigger your brain fog.
The questionnaire takes approximately 20 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 is the BFQ for, and who can take it?
It’s for anyone: children, teens, parents, and adults. Even if you haven’t experienced brain fog before, or aren’t sure if you have, you can still take the survey. Understanding how people with and without brain fog think and feel gives researchers a more comprehensive understanding of what brain fog actually is and what it means to people from all walks of life.
Customized versions of the survey have been designed for various groups willing to participate. Whether you’re a child, teenager, parent, or adult, you can take a version of the BFQ that’s made just for you. There are two youth versions of the questionnaire: one for children (7-12) and one for teens (13-17). Each version includes age-appropriate questions and questions for parents to share their perspectives.
“Kids don’t describe ‘difficulty concentrating’ or ‘mentally fatigued’—they talk about their brain feeling ‘fuzzy’ or ‘sleepy.’ Building surveys that honor their viewpoint showed me inclusive research isn’t just about who you include, it’s about how you meet them where they are.” -Noah Peng, BIC Clinical Research Intern |
This matters because kids and teens often describe experiences differently from adults, and sometimes their stories are lost or overlooked in clinical research. That’s why capturing their experiences in their own words is so vital to understanding brain fog on a systemic scale.
How do I take the BFQ?
The BFQ is securely stored in the new The unhide® Solve Together Unified Platform and can be easily accessed through your smartphone or computer.
Sign up here to join the platform. Once you’ve consented and enrolled in the study, you can find the BFQ on the “Surveys” page.
If you are already signed up for Unhide, the questionnaire will be automatically delivered to you through the platform.
The platform includes additional surveys you can complete if you choose, as well as features like symptom reports, wearables tracking, and links to research studies that can help you on your health journey.
Get involved today! Play your part in solving the brain fog puzzle.
Thank you for your participation!
Questions?
Please feel free to reach out to us with any questions at help@braininflammation.org
Written By
Noah Peng
Clinical Research Intern, Brain Inflammation Collaborative
