Very severe ME/CFS, now much better and borderline moderate/mild
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 6 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I have had me/cfs for 6 years
In context ↗ - At worst: Very severe
I’ve climbed from very severe to borderline moderate/mild
In context ↗ - Now: Much better
for the past 4 years I’ve climbed from very severe to borderline moderate/mild
In context ↗ - Began after: another virus
I developed me/cfs 5.5 years ago after a viral infection
In context ↗
Read from 5 of their posts and comments; links to the 4 this page draws on
Summary
They developed ME/CFS in about 2020 after a viral infection. Over the past four years they climbed from very severe to borderline moderate/mild, though their life is still small and difficult and they limit themselves by pacing. They take ketotifen 2 mg nightly, which they think supports sleep but little else, and low-dose naltrexone, which helped a little at first but may no longer do anything.
Ask Miruvor AI
What they tried
Their words about each treatment
- pacing · Helped
I do pace properly and have PEM under control
In context ↗ - ketotifen · Helped
I actually talk ketotifen every night at 2mg too! I think it’s supported my sleep but not much else
In context ↗ - LDN · Helped
I do take LDN and i think it helped me a bit when I started but it’s very hard to tell if it’s still doing anything
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 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2020 | developed ME/CFS after a viral infectionI developed me/cfs 5.5 years ago after a viral infectionIn context ↗ | Not stated |
| about 2022 (four years before August 2026) | very severefor the past 4 years I’ve climbed from very severe to borderline moderate/mildIn context ↗ | Very severe |
| 2026-08-15 | climbed to borderline moderate/mild over four yearsthis illness has stolen so much of my life and my life is still very difficultIn context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
PEM is my biggest symptom and what limits my life
In context ↗ - Sleep problems
I think it’s supported my sleep but not much else
In context ↗