ME/CFS
Mild → no benefit
ME/CFS with post-exertional malaise, daily life still a deficit despite backing off
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- Not stated
- Last post
- Aug 2025
In their words
- Condition: ME/CFS
I've tried a few humble outings but each time I get PEM, so I've backed off.
In context ↗ - At worst: Mild
I've tried a few humble outings but each time I get PEM, so I've backed off.
In context ↗ - Now: No benefit
I'm just trying to get a sense of how not to make things worse while I slowly go about trying to get help from health professionals.
In context ↗
Summary
Wave 99871 wrote in August 2025 that they had been hyper-fit before becoming unwell, running ultramarathons and climbing. Humble outings each brought post-exertional malaise, so they backed off, and daily life already seemed to create a deficit. They said orthostatic stress seemed to describe a lot of what they were dealing with: lying flat for 20-90 minutes made them feel enormously better, but sitting up again quickly made them feel awful. They were seeking pacing advice and professional help.
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What they tried
Also tried
periods of horizontalness· Helpeda few humble outings· Worse
Their words about each treatment
- a few humble outings · Worse
I've tried a few humble outings but each time I get PEM, so I've backed off.
In context ↗ - periods of horizontalness · Helped
often even 20-90 minutes like that makes me feel enormously better.
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 |
|---|---|
| onset | became unwellBefore I became unwell I was hyper fit, running ultramarathons and climbing and so on.In context ↗ |
| 2025-08-27 | humble outings each caused PEM; backed offI've tried a few humble outings but each time I get PEM, so I've backed off.In context ↗ |
| 2025-08-31 | orthostatic symptoms; lying down helps, sitting up worsensoften even 20-90 minutes like that makes me feel enormously better ... if I get up and try to sit I feel garbage again almost immediately.In context ↗ |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I've tried a few humble outings but each time I get PEM, so I've backed off.
In context ↗ - POTS & dysautonomia
I just looked up 'orthostatic stress'. It seems to describe a lot of what I'm dealing with.
In context ↗