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ME/CFS Severe → somewhat betterIll 4 years before improving or writingNeeds ongoing treatment

Severely ill with ME/CFS, now a bit better and able to do more

Condition
ME/CFS
At worst
Severe (mostly bedbound)
Ill before improving or writing
4 years
Last post
Feb 2025
In their words
  • Condition: ME/CFSI was able to recover a bit from severe to moderate In context ↗
  • At worst: Severerecover a bit from severe to moderate In context ↗
  • Now: Somewhat betterI was able to recover a bit from severe to moderate In context ↗
Read from 2 of their posts and comments; links to the 2 this page draws on

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Summary

A Reddit user in r/cfs described being severely ill, with sexual thoughts and feelings gone for about three years. They recovered a bit from severe to moderate, kept daily activity very low and could tell their limits more easily, and after about four years were able to do much more than at diagnosis. Overdoing it still left them down for weeks, and the improvement was described as recovering a bit.

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What they tried

Their words about each treatment
  • keep daily activity very low · HelpedI also keep daily activity very low and have been able to tell my limits much easier In context ↗

Approaches: Pacing

Their path

Very severeSevereModerateMildNear normalRecoveredonset12 mo2 y3 y4 y

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. The dashed part: the story doesn’t say when. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they were
onsetbecame ill and was severely affectedLuckily I was able to recover a bit from severe to moderate. In context ↗Severe
2023-07-21able to do much more than at diagnosis after about four yearstook probably about 4 years for me but I’m now able to do much more then when I was first diagnosed In context ↗Moderate
2025-02-17improved from severe to moderate, keeping daily activity very low, returning to datingI also keep daily activity very low and have been able to tell my limits much easier In context ↗Moderate

Symptoms mentioned

Their words about their symptoms
  • Post-exertional malaiseif I over do it I’m usual down for a few weeks after :( In context ↗

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