What we Gather & Don't Gather

The focus: observations

The single most important thing you can do when submitting is describe what you observed, not what you believe caused it.

USEFUL: "Under magnification I observed fine fibers emerging below a blistered area following metal contact"

NOT USEFUL: "I think I have a parasite"

Not because your theory is wrong, but because it collapses an observation into a theory before anyone has examined the evidence. Our collection form will guide you. It asks structured questions. There is room for open description, but the prompt will always ask: what did you see, not what do you think it means.

TO BREAK IT DOWN

What to gather: Just the facts

A potential foundation for future research design

A structured record of direct observations

Objective data collection of dates, times, situational environment that may highlight previously hidden patterns

Comorbidity and trigger patterns

Including connective tissue conditions, autonomic disorders, immune history, mast cell involvement, viral history, and medication patterns

A longitudinal record

A central place to submit each episode separately as it comes so that experiences can be compared over time

Clinically neutral ground

We have no pre-assumed cause for this effect

What's out of scope, and what we don't offer

We're anti-stigma. We want to uncover better answers for you.

We do not endorse the theories of parasitosis or external contamination - the verifiable evidence just is not there.

We're not a mental health or support resource

Not a community for Lyme, auto immune, or other diseases

Not a forum for theories, causes, or cures

Don't stop seeking them! We just aren't here to collect them.

Not a commitment to publish, research, or follow up

It's the goal, but we can not predict what data will be made available to us through self-reported submissions.

We have *HOPE* we can make a difference