Mild ME/CFS for 20 years, able to support themselves, improved then relapsed
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 20 years
- Last post
- Apr 2026
In their words
- Condition: ME/CFS
After 20 years of this it’s a little hard to remember what it was like before let alone have hope it could be like that again.
In context ↗ - At worst: Mild
I’m pretty mild so I can still support myself.
In context ↗ - Now: Relapsed
I raised my baseline a couple times but pushed too hard and undid my progress.
In context ↗
Summary
They had had ME/CFS for about 20 years, describing themselves as pretty mild and able to support themselves. In late 2025 they reported a nice upswing over the past year but then began crashing again, and said not valuing sleep led to PEM a day or so later. They had raised their baseline a couple times but pushed too hard and undid the progress. By January 2026 they were still mild and doubted they would ever get better than that.
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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. The chart starts 19.5 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| onset | onset of ME/CFSIt’s been 20 years.In context ↗ | Not stated |
| the last year (as of late 2025) | nice upswingI had a nice upswing the last year but now I’m crashing again.In context ↗ | Mild |
| 2025-12-05 | crashing again after the upswingI had a nice upswing the last year but now I’m crashing again. I just keep going and pray I stay mildIn context ↗ | Mild |
| 2026-01-07 | still mild, doubt they will get betterThank god I’m mild because I really don’t think I’ll ever get better than that.In context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
that just leads to PEM a day or so later.
In context ↗