Moderate to moderate-severe ME, wheelchair and constant PEM; CoQ10 helped then faded
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Feb 2026
In their words
- At worst: Severe
I needed a wheelchair years before I was able to get one, so my legs were the worst but my whole body was just so weak and heavy
In context ↗ - Now: Relapsed
That was a few months ago though and my sleep has since gone haywire again ... exertion intolerance is back to roughly where it was before I started taking it
In context ↗
Read from 6 of their posts and comments; links to the 4 this page draws on
Summary
A Reddit user has moderate to moderate-severe ME after a catastrophic deterioration from activity increases on a fibromyalgia misdiagnosis. They spent years in constant PEM needing a wheelchair, stabilised at very low activity, and had a major health decline in early 2024. CoQ10 gave a period of improved mental clarity and standing for a couple of minutes instead of under one, but it faded.
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What they tried
What they credit
Also tried
Their words about each treatment
- increased my activity · Much worse
I trusted them and increased my activity which caused catastrophic deterioration
In context ↗ - stabilise at an appropriate very low level of activity · Helped
stabilise at an appropriate very low level of activity (although I've still deteriorated over time
In context ↗ - CoQ10 · Helped
For the first couple of weeks it gave me a lot of mental clarity (well, relatively speaking) ... I could stand for a couple of minutes on most days whereas my baseline before was less than a minute.
In context ↗ - lying in bed with eyes closed after waking · Helped
forced myself to lay in bed with my eyes closed for another two hours after waking, then after about a week I was sleeping normally again
In context ↗ - limiting phone use · Helped
when I do I feel mentally a lot better and more present, and although I can think more it's also less taxing than engaging on my phone
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, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 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 |
|---|---|---|---|
| — | ME/CFS onset, first diagnosed as fibromyalgiaI was also diagnosed with fibro initiallyIn context ↗ | Not stated | |
| — | catastrophic deterioration after increasing activity on a fibromyalgia misdiagnosis; years of constant PEM needing a wheelchairincreased my activity which caused catastrophic deterioration ... I needed a wheelchair years before I was able to get one | Severe | |
| — | stopped living in constant PEM and stabilised at a very low activity levelI was able to stop living like that and stabilise at an appropriate very low level of activityIn context ↗ | Moderate | |
| early 2024 | major health declineI had a major health decline in early 2024In context ↗ | Not stated | |
| a few months before February 2026 | CoQ10 gave mental clarity and better standing toleranceI could stand for a couple of minutes on most days whereas my baseline before was less than a minuteIn context ↗ | Moderate | CoQ10 / ubiquinol |
| 2026-02-06 | CoQ10 benefit faded; exertion intolerance back to previous levelexertion intolerance is back to roughly where it was before I started taking itIn context ↗ | Moderate |
Adverse events
- Graded rehab and self-made programmes“I trusted them and increased my activity which caused catastrophic deterioration” In context ↗ Made symptoms worse
- CoQ10 / ubiquinol“limited my sleep to 7 hours on the dot (I need a solid 9) so I crashed” In context ↗ Insomnia from treatment
- CoQ10 / ubiquinol“if I take some near bedtime it keeps my heart rate up” In context ↗ Heart rhythm problems
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
when I was in constant PEM, doing way more than my body could handle
In context ↗ - Muscle weakness
my whole body was just so weak and heavy
In context ↗ - Brain fog
My mind feels sluggish again, with small glimmers of clarity
In context ↗ - Sleep problems
my sleep has since gone haywire again
In context ↗
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