What should an ME/CFS record capture first?

Start with the trigger window, the function drop, and the recovery lag so exertion, delayed payback, and real capacity changes stay on one timeline.

What makes this page useful for ME/CFS communities?

It gives moderators, advocates, and patients a patient-owned way to explain PEM timing, crash severity, and recovery burden without rebuilding the story from memory.

Does Mito Map diagnose ME/CFS?

No. Mito Map is an organization and tracking tool for symptom patterns, function changes, and follow-up preparation. It does not diagnose ME/CFS or replace medical care.

ME/CFS Crash Tracking

Make post-exertional malaise and recovery burden easier to explain.

ME/CFS records often break because the important part is delayed. The trigger can happen on one day, the crash can land later, and the real cost only becomes clear across sleep, cognition, orthostatic symptoms, and the next attempt at daily life. Mito Map helps keep those pieces on one patient-owned timeline.

Start a Mito Map Open Crash Decoder

Why ME/CFS Fits

The useful story is the relationship between load, delay, and recovery.

Mito Map is useful when the hardest part is not listing symptoms, but showing what exertion cost, how delayed the crash was, and whether function actually returned. The goal is not to diagnose ME/CFS. The goal is to make post-exertional worsening, orthostatic burden, sleep disruption, and baseline shifts legible enough to review later.

PEM

Show what the overexertion bill looked like.

Capture the activity load, delay before symptoms hit, severity of the crash, and whether the recovery arc changed.

Baseline

Separate a bad day from a lower floor.

Track whether cognitive load, standing time, chores, or walking tolerance returned to baseline or stayed compressed.

Visit Prep

Bring the timeline instead of rebuilding it live.

Keep crashes, supports, function anchors, and intervention changes together so the next appointment starts from evidence.

Build A First Useful Record

Start with the trigger window, the function drop, and the recovery lag.

Trigger Window

Capture the few loads most likely to explain the crash.

Keep exertion, cognitive demand, travel, stress, sleep loss, standing time, or illness exposure beside the event so delayed PEM is easier to review later.

Function Drop

Use concrete anchors instead of a vague worse-than-usual note.

Track showering, meals, reading, work blocks, school time, walking tolerance, or upright time so each crash shows what usable capacity actually changed.

Recovery Lag

Show whether the setback resolved or compressed baseline.

Keep sleep disruption, orthostatic symptoms, sensory overload, pain, and next-attempt payback tied to the same record when recovery burden lasts longer than the trigger itself.

Measured function score Build a full profile Complex chronic illness overlap

Community Share Pack

Copy-ready ME/CFS outreach text for moderators, advocates, or support-group follow-up.

Start with the landing page when someone needs context first. Use the tracked signup when someone is ready to keep their own patient-owned record attached to source community-growth-me-cfs.

Attribution source: community-growth-me-cfs

What To Capture

Questions that make an ME/CFS record more useful.

What happened in the 24 to 72 hours before the crash or lower-baseline stretch?
Which symptoms rose together: fatigue, cognitive slowdown, orthostatic symptoms, pain, or sensory overload?
How many recovery days did the exertion cost, and did sleep or pacing change that outcome?
Did function return to baseline, improve, or stay compressed after the event?

Measured function score Build a full profile Crash Decoder Complex chronic illness overlap POTS and dysautonomia overlap Long COVID overlap

Mito Map is an organization and tracking tool. It does not diagnose ME/CFS or any other condition, and it does not replace medical care.