ME/CFS
Very severe → somewhat better
Bedbound with very severe ME/CFS, now somewhat better and briefly able to sit up
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- Not stated
- Last post
- Feb 2026
In their words
- Condition: ME/CFS
Currently 2.5 when not in PEM, which is quite good compared to the previous few months. I classify myself as very severe.
In context ↗ - At worst: Very severe
I recently became so severe I could no longer care for myself or even toilet independently
In context ↗ - Now: Somewhat better
Currently 2.5 when not in PEM, which is quite good compared to the previous few months. ... I am bedbound and only leave my house with a wheelchair
In context ↗
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
They describe being mild or moderate until they kept pushing themselves, after which they became very severe: bedbound, leaving home only by wheelchair for extremely important medical appointments, unable to stand, walk, bathe or toilet unaided. They spent six days in hospital when they could no longer care for themselves, which they called worth it. By late February 2026 they scored 2.5 when not in PEM and could sit up unsupported briefly, still very severe.
Ask Miruvor AI
What they tried
Also tried
hospital admission· Helpedearplugs· Helped
Their words about each treatment
- hospital admission · Helped
I recently became so severe I could no longer care for myself or even toilet independently and going to the hospital was scary but worth it. I stayed there for 6 days and received care that I needed.
In context ↗ - earplugs · Helped
I am very sensitive to sensory overload ... Also having earplugs helped a lot.
In context ↗
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | mild to moderate ME/CFS, kept pushing through itI kept pushing myself when I was mild/moderateIn context ↗ | Mild |
| 2026-01-13 | became so severe they could not care for themselves or toilet independentlyI recently became so severe I could no longer care for myself or even toilet independentlyIn context ↗ | Very severe |
| 2026-02-12 | FUNCAP 2.5 outside PEM, described as quite good compared with previous monthsCurrently 2.5 when not in PEM, which is quite good compared to the previous few months.In context ↗ | Very severe |
| 2026-02-27 | feeling better, able to sit up unsupported for brief momentsI'm feeling better and can finally sit up unsupported for breif moments throughout the day!In context ↗ | Very severe |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Currently 2.5 when not in PEM
In context ↗ - Light & noise sensitivity
I am very sensitive to sensory overload (from the illness + I'm also autistic)
In context ↗ - Muscle weakness
I could not stand or walk independently
In context ↗