Bedbound with severe ME/CFS, now much better and able to work after strict pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 8 years
- Last post
- Aug 2025
In their words
- Condition: ME/CFS
since i got ME/CFS
In context ↗ - At worst: Severe
lying in bed all day (severe?)
In context ↗ - Now: Much better
Took about 4-5 years of strict pacing to go from lying in bed all day (severe?) to being able to work/study again (mild)
In context ↗
Read from 6 of their posts and comments; links to the 5 this page draws on
Summary
A Reddit user who was bedbound with severe ME/CFS said strict pacing over four to five years took them from lying in bed all day to being able to work and study again, reaching mild or mild/moderate. They still avoid overdoing activity to prevent PEM and worked as a musician and music teacher while studying jazz. Eating a large meat meal gave a noticeable improvement during a crash, though it did not remove the PEM.
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What they tried
What they credit
Also tried
Their words about each treatment
- Pacing · Helped a lot
Took about 4-5 years of strict pacing to go from lying in bed all day (severe?) to being able to work/study again (mild)
In context ↗ - Large meal of meat (protein/fat) · Helped
if I have a crash, i try to eat a large meal of meat, and it really makes me feel a lot better. It does not remove the PEM, but it gives me a noticeable improvement
In context ↗ - Eating sufficient food, hydrating and ORS · Helped
I do most of these. Has helped me a a lot.
In context ↗ - Intermittent fasting · Worse
I havent felt good while intermittent fasting since i got ME/CFS
In context ↗
Approaches: Pacing
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| around 2016-2017 (over eight years before March 2025) | bedbound with severe ME/CFSI am mild, but was severe before (bedbound).In context ↗ | Severe | |
| after years of waiting on my body | went from severe to moderateI were not able to do this until i went from severe to moderate after years of waiting on my body.In context ↗ | Moderate | |
| about 4-5 years into the illness | strict pacing; able to work and study againTook about 4-5 years of strict pacing to go from lying in bed all day (severe?) to being able to work/study again (mild)In context ↗ | Mild | Pacing and the energy envelope |
| July 2025 | mild/moderate, working and studyingIm mild/moderate.In context ↗ | Mild |
Adverse events
- Intermittent fasting“I dont know about you guys, but I havent felt good while intermittent fasting since i got ME/CFS” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I prioritize sitting, and not overdoing physical activity to avoid PEM.
In context ↗
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