Share Your Story
Living with Long COVID, ME/CFS, or POTS looks different for everyone. Personal experiences can’t replace scientific evidence, but they do provide important context for understanding how these conditions affect daily life.
We invite readers to share their stories to help inform our work, highlight common themes, and ensure that research summaries stay grounded in lived experience.
Why we collect stories
We collect personal accounts to:
- Better understand the range and variability of symptoms
- Identify recurring patterns researchers are studying
- Provide human context alongside scientific findings
- Help journalists and researchers understand patient perspectives (when permission is given)
Stories are never treated as medical evidence and are not used to promote treatments or advice.
What you can share (as much or as little as you like)
You may include:
- When your initial COVID infection occurred (if applicable)
- Your most persistent or disruptive symptoms
- How symptoms have changed over time
- How your condition has affected work, school, or daily life
- What you wish researchers or clinicians better understood
You do not need to write perfectly or in detail. Short, simple submissions are welcome.
Privacy and consent
Your privacy matters.
- Stories are reviewed but not automatically published
- Identifying details are removed unless you explicitly request otherwise
- You may choose whether your story can be:
- summarized anonymously
- quoted anonymously
- shared with journalists or researchers in anonymized form
- Submissions may also be kept internal for background understanding only
We do not sell stories, data, or contact information.
Important notes
- We do not provide medical advice, diagnoses, or treatment recommendations
- We cannot respond individually to every submission
- Sharing your story does not guarantee publication
- If you are in crisis or need medical care, please contact a qualified healthcare professional or local emergency services
How to share your story
Please email your story to:
If you’re comfortable, you may include:
- your first name or a pseudonym
- your country or region (optional)
- whether you consent to anonymous use of your story
Thank you
We’re grateful to everyone who takes the time to share their experience. Long COVID and related conditions remain under-recognized and under-studied, and patient voices are an essential part of understanding the full picture.