ME/CFS
Severe → no benefitIll for 11 years
ME/CFS with intense fatigue and depression, body shut down, no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 11 years
- Last post
- May 2026
In their words
- Condition: ME/CFS
I got sick when I was 20 and have never had the chance to do any of those things.
In context ↗ - At worst: Severe
My body has just shut down and I am unfortunately trapped and have no choice but to go along with it’s very limited capacities.
In context ↗ - Now: No benefit
It’s just hard to know I’m almost certainly never going to get better.
In context ↗
Summary
Wave 83718 became ill with ME/CFS at age 20 and was still ill at 31. They described an earlier milder phase, followed by intense fatigue and depression that left their body shut down and their capacities very limited. They said they were almost certainly never going to get better.
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What they tried
Also tried
“How to be Sick”· Helpedspirituality, Buddhism, embodied practices, grounding in nature· Not said
Their words about each treatment
- spirituality, Buddhism, embodied practices, grounding in nature · Not said
In my more mild phase I got quite into spirituality, Buddhism, embodied practices, grounding in nature etc. Now that my fatigue and depression are so intense, I just feel so alienated from all of that stuff.
In context ↗ - “How to be Sick” · Helped
The only “spiritual” book I’ve found that was somewhat helpful is “How to be Sick” ... I got some helpful advice from the book “how to be sick”.
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 |
|---|---|---|
| age 20 | Became ill with ME/CFS at age 20; early milder phaseI got sick when I was 20 ... In my more mild phase I got quite into spiritualityIn context ↗ | Mild |
| 2025-08-02 | Fatigue and depression became intense; body shut downNow that my fatigue and depression are so intense ... My body has just shut down and I am unfortunately trapped and have no choice but to go along with it’s very limited capacities.In context ↗ | Severe |
| 2026-05-18 | Still ill; expects never to get betterI’m almost certainly never going to get better.In context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Anxiety & low mood
my fatigue and depression are so intense
In context ↗