Bedridden five years with severe ME/CFS, now almost normal after mould-free housing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 10 years
- Last post
- Jun 2025
In their words
- Condition: ME/CFS
I had severe ME/CFS for 10 years, 5 of those bedridden
In context ↗ - At worst: Severe
I had severe ME/CFS for 10 years, 5 of those bedridden
In context ↗ - Now: Near normal
I've been in full remission (it feels permanent) for 3 years now ... I am still highly chemically sensitive with occassional dysautonomia flares
In context ↗ - Began after: mould or toxic exposure
The root cause of my illness turned out to be toxic mold exposure.
Read from 1 of their posts and comments; links to the one this page draws on
Summary
They had severe ME/CFS for ten years, five of them bedridden, plus hEDS. They traced the illness to toxic mould and improved after securing mould-free housing and taking binders and antifungals, reaching full remission for three years. They still have chemical sensitivity and occasional dysautonomia flares, but say their quality of life is far better.
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What they tried
What they credit
Also tried
Their words about each treatment
- mold-free housing · Helped a lot
Once I secured mold-free housing
In context ↗ - binders · Helped a lot
Once I secured mold-free housing and was treated with binders and antifungals
In context ↗ - POTS/hEDS occupational therapy · Helped
POTS/hEDS occupational therapy was very helpful
In context ↗
Approaches: Antifungals · Mould avoidance
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. 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 |
|---|---|---|
| onset | severe ME/CFSI had severe ME/CFS for 10 yearsIn context ↗ | Severe |
| — | bedridden for five years5 of those bedriddenIn context ↗ | Severe |
| about 10 years after onset | full remission after mould-free housing and binders/antifungalsOnce I secured mold-free housing and was treated with binders and antifungals, I got much better.In context ↗ | Near normal |
| 2025-06 | still in full remission with chemical sensitivity and occasional dysautonomia flaresI've been in full remission (it feels permanent) for 3 years now. ... I am still highly chemically sensitive with occassional dysautonomia flaresIn context ↗ | Near normal |
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
occassional dysautonomia flares
In context ↗
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