Severe ME/CFS for three years, now somewhat better if careful
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jul 2026
In their words
- Condition: ME/CFS
I try to reduce pem as much I can, and also remember that it’s not me
In context ↗ - At worst: Severe
I was severe for three years
In context ↗ - Now: Somewhat better
I’m fortunate to have improved enough to moderate if I’m careful, but still can fall into rolling pem that looks more like mod-severe
In context ↗
Summary
Shore 63104 described the illness as life-shattering and said they were severe for three years. They later improved enough to be moderate if careful, though they could still fall into rolling PEM that looked more like moderate-severe. They tried to reduce PEM as much as they could and noted that their mood rose and fell with their symptoms.
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What they tried
What they credit
Also tried
Their words about each treatment
- Garmin · Helped
Garmin is pretty good
In context ↗ - reducing PEM / pacing · Helped
I try to reduce pem as much I can ... I’m fortunate to have improved enough to moderate if I’m careful
In context ↗
Approaches: Pacing
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | severe ME/CFS for three yearsI was severe for three yearsIn context ↗ | Severe |
| 2026-07-07 | improved to moderate if careful, still dips into rolling PEMI’m fortunate to have improved enough to moderate if I’m careful, but still can fall into rolling pem that looks more like mod-severe.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I try to reduce pem as much I can
In context ↗ - Anxiety & low mood
When pem resolves my mood gets more reasonable.
In context ↗
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