ME/CFS
Mild → no benefitIll for 20 years
ME/CFS PEM: couldn't speak properly for nearly a week; exercise still leaves them wrecked
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- 20 years
- Last post
- Jun 2026
In their words
- Condition: ME/CFS
But now the PEM has become so pervasive that I cannot even speak properly for almost a week.
In context ↗ - At worst: Mild
I did this for 20+ years because the good effects ultimately outweighed the bad ones by a slight margin. Even with PEM for 3-4 days
In context ↗ - Now: No benefit
But now the PEM has become so pervasive that I cannot even speak properly for almost a week.
In context ↗
Summary
Shore 27583 exercised for more than 20 years despite 3-4 days of post-exertional malaise each time, because it improved muscle strength, memory and mental health. Something they tried brought a week of extra PEM-like fatigue, so they stopped it. By June 2026 the PEM had become so pervasive that they could not speak properly for almost a week, and exercise still left them wrecked for at least two days.
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What they tried
Also tried
Their words about each treatment
- exercise · Helped
I did this for 20+ years because the good effects ultimately outweighed the bad ones by a slight margin
In context ↗ - Xolair · Worse
I got more fatigue from it, like PEM fatigue for a week, so It decided to stop
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| 20+ years before 2026 | onset; kept exercising for 20+ years, accepting 3-4 days of PEM each timeI did this for 20+ years because the good effects ultimately outweighed the bad ones by a slight margin.In context ↗ | |
| 2026-06-18 | PEM became pervasive; could not speak properly for almost a weekBut now the PEM has become so pervasive that I cannot even speak properly for almost a week.In context ↗ | |
| 2026-06-19 | a week of extra PEM-like fatigue after Xolair, which they stoppedI got more fatigue from it, like PEM fatigue for a week, so It decided to stopIn context ↗ | Omalizumab / Xolair |
| 2026-06-26 | still cycling through exercise euphoria then days wreckedHalf a day of this euphoria, sluggish in the evening, next day tired but wired, and then at least two days of feeling completely wrecked.In context ↗ |
Adverse events
- Omalizumab / Xolair“I got more fatigue from it, like PEM fatigue for a week, so It decided to stop” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Even with PEM for 3-4 days it seemed to help
In context ↗ - Brain fog
no anxiety, no brain fog
In context ↗ - Sleep problems
next day tired but wired
In context ↗ - Muscle weakness
it seemed to help not only with muscle strength and own body awareness
In context ↗