ME/CFS
Severe → no benefitIll for 2 years
ME/CFS with PEM worsening to bedbound, no improvement from exercise or stimulants
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 2 years
- Last post
- Jan 2026
In their words
- Condition: ME/CFS
I only realized I likely have ME/CFS about 7 months ago
In context ↗ - At worst: Severe
currently bedbound, unable to leave the house, can barely walk
In context ↗ - Now: No benefit
fatigue and PEM never improved and have progressively worsened
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
An 18-year-old autistic person developed severe fatigue in January 2024, with PEM that worsened over two years despite treated hypothyroidism and low vitamin D. Exercise, stimulants, antidepressants and supplements all made things worse; many medications were stopped. By early 2026 a rolling crash had left them bedbound, unable to leave the house and barely able to walk, after being only moderate three months earlier.
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What they tried
Also tried
Their words about each treatment
- levothyroxine · No change
I’ve since been treated for both (on levothyroxine, vitamin D now in range), but my fatigue never went away.
In context ↗ - exercise · Worse
after everything doctors suggested (exercise, pushing through, stimulants, antidepressants, supplements, etc.) consistently made me worse
In context ↗ - stimulants · Worse
Many of those medications either didn’t help or actively worsened my symptoms, so I’ve had to stop them.
In context ↗ - pacing · No change
I’ve tried pacing, but clearly I’m doing something wrong.
In context ↗
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. 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 |
|---|---|---|
| January 2024 | severe fatigue beganMy severe fatigue began in January 2024.In context ↗ | Not stated |
| 2024–2025 | steady decline; quit job, gave up hobbies, stopped drivingSince 2024, my functioning has steadily declined. I’ve had to quit my job, give up my hobbies, finish school homeschooled, stop drivingIn context ↗ | Mild |
| 2026-01-02 | rolling PEM crash, bedbound, down from moderate three months earlierI'm currently bedbound, unable to leave the house, can barely walk, and struggling with even basic daily tasks when 3 months ago I was just moderate.In context ↗ | Severe |
Adverse events
- Everyday exercise and activity“everything doctors suggested (exercise, pushing through, stimulants, antidepressants, supplements, etc.) consistently made me worse” In context ↗ Made symptoms worse
- Stimulants (unspecified)“Many of those medications either didn’t help or actively worsened my symptoms, so I’ve had to stop them.” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“Many of those medications either didn’t help or actively worsened my symptoms, so I’ve had to stop them.” In context ↗ Made symptoms worse
- “everything doctors suggested (exercise, pushing through, stimulants, antidepressants, supplements, etc.) consistently made me worse” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I’ve been experiencing PEM to varying degrees, but it’s been getting progressively worse.
In context ↗ - Anxiety & low mood
I feel myself losing hope fast and I have no idea how to get better.
In context ↗