Moderate-severe ME/CFS, unable to walk 20m, improved then relapsed to mild-moderate
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- 3 years
- Last post
- May 2026
In their words
- Condition: ME/CFS
I'm back here because 20 years later I now seem to be back to mild-moderate!
In context ↗ - Now: Relapsed
20 years later I now seem to be back to mild-moderate!
In context ↗
Summary
Orchid 63928 was moderate-severe in their teens, unable to walk more than about 20 metres, and then very slowly improved, maybe after two to three years, reaching full remission in their twenties and completing triathlons and multi-day races. The remission lasted 20 years. They later described themselves as back to mild-moderate, and low-dose naltrexone titrated to 3 mg gave them severe headaches that stopped when they quit.
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What they tried
Their words about each treatment
- LDN · Worse
I’d been slowly titrating up (0.5mg, increasing by 0.5mg every 10 days or so). I’d reached 3mg and started getting horrendous headaches every other day
In context ↗ - ibuprofen/paracetamol · No change
none responded to ibuprofen/paracetamol for me
In context ↗ - remedial massage · Worse
I’d been trying remedial massage as they felt somewhat tension-like but that caused other issues
In context ↗
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 chart starts 2.5 years after onset: the story doesn’t say how ill they were before that. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| after 2-3 years | began very slowly improvingdeteriorated pretty rapidly to that point, and then very slowly improved maybe after 2-3 yearsIn context ↗ | Severe |
| twenties | full remission; able to do triathlons and multi day adventure racesinto full remission (as far as I could tell) in my twenties - was able to do triathlons, multi day adventure racesIn context ↗ | Recovered |
| 2026-04 | relapsed 20 years after the remission, back to mild-moderate20 years later I now seem to be back to mild-moderate!In context ↗ | Mild |
Adverse events
- Low-dose naltrexone“I’d reached 3mg and started getting horrendous headaches every other day” In context ↗ Side effects
- Massage“I’d been trying remedial massage as they felt somewhat tension-like but that caused other issues.” In context ↗ Other
Symptoms mentioned
Their words about their symptoms
- Headaches & migraine
I’d reached 3mg and started getting horrendous headaches every other day
In context ↗