ME/CFS, once mostly in bed, now much better after avoiding overexertion and CoQ-10
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 7 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
considering I have CFS
In context ↗ - At worst: Severe
I’ve had times where I’ve spent most of the day in bed
In context ↗ - Now: Much better
Two years ago I was tried to do no more than 5000 steps in a day and now I’m hitting over 10,000 steps most days and doing okay
In context ↗ - Began after: nothing they could name
I first noticed clear signs of PEM in the summer of 2019
In context ↗
Summary
First noticed clear signs of PEM in summer 2019 and has swung between spending most of the day in bed and being very active. By January 2026 they managed over 10,000 steps most days and were doing okay, up from a 5,000-step cap two years earlier. They credit long periods of not overexerting themselves most, with CoQ-10, oxaloacetate and vitamin B12 helping somewhat. A hormone supplement messed them up badly.
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What they tried
What they credit
Also tried
Their words about each treatment
- Vitamin D · Worse
It messed me up really bad as well.
In context ↗ - Coq-10 · Helped
while I feel a few pills have helped (coq-10, benagene and vit b12)
In context ↗ - long periods of time not over exerting myself · Helped
long periods of time not over exerting myself has helped the most
In context ↗ - Time · Helped
Time, rest and luck. ... long periods of time not over exerting myself has helped the most.
In context ↗
Approaches: Pacing · Supplements
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 first step with a time is 6.5 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| summer 2019 | first noticed clear signs of PEMI first noticed clear signs of PEM in the summer of 2019In context ↗ | Not stated | |
| — | spent most of the day in bed at timesI’ve had times where I’ve spent most of the day in bed and times where I’ve been able to be very active (considering I have CFS).In context ↗ | Severe | |
| 2026-01-27 | over 10,000 steps most days, up from a 5,000-step daily cap two years earlierTwo years ago I was tried to do no more than 5000 steps in a day and now I’m hitting over 10,000 steps most days and doing okay.In context ↗ | Mild | Pacing and the energy envelope |
| 2026-04-22 | vitamin D messed them up badlyIt messed me up really bad as well.In context ↗ | Not stated | Vitamin D and sun exposure |
| 2026-09-21 | up and down over the years; resting helped most, supplements helped somewhatlong periods of time not over exerting myself has helped the mostIn context ↗ | Mild | Pacing and the energy envelope |
Adverse events
- Vitamin D and sun exposure“It messed me up really bad as well. It’s a hormone and it can take awhile to leave your system.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I first noticed clear signs of PEM in the summer of 2019
In context ↗
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