ME/CFS
Severe → no benefitIll for 6 years
ME/CFS: most days unable to dress or move from sofa, now only 10 minutes a week
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 6 years
- Last post
- Oct 2025
In their words
- Condition: ME/CFS
I don't recommend it for CFS/ME if you can believe it
In context ↗ - At worst: Severe
most days I couldn't get dressed or move from the sofa
In context ↗ - Now: No benefit
I've been getting progressively more fatigued for years
In context ↗ - Began after: nothing they could name
I've been getting progressively more fatigued for years but routine tests are inconclusive.
Read from 10 of their posts and comments; links to the 6 this page draws on
Summary
Puffin 99071, in the UK, had fatigue from late 2019 while working; it worsened and in October 2023 they were signed off with burnout, most days unable to dress or move from the sofa. Diagnosed with ME/CFS in 2025, they had been pushing through, and by late 2025 could reliably manage only about 10 minutes a week for a weekly routine.
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What they tried
Also tried
CBT· Helpedmedication· Helpedtime off work· Helpedsaline eye bath and cold compress· Helpedpushing through· WorseB12 supplement· Not said
Their words about each treatment
- CBT · Helped
have had CBT and medication for both with really positive results
In context ↗ - B12 supplement · Not said
the B12 supplement treatment was monitored and my levels returned to average values after a few months
In context ↗ - pushing through · Worse
pushing through. I don't recommend it for CFS/ME if you can believe it
In context ↗ - time off work · Helped
But I feel only marginally better after time off, even the months I had signed off
In context ↗ - saline eye bath and cold compress · Helped
You can use a saline eye bath to feel a cool liquid on your eyes/feel as though you're "flushing" them which I've found helps
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| November 2019 | first saw a GP for fatigue while working full time and commutingI first saw a GP for fatigue in November 2019.In context ↗ | Mild |
| October 2023 | signed off work indefinitely with burnout, mostly unable to get off the sofawas signed off of work indefinitely with burnout ... most days I couldn't get dressed or move from the sofaIn context ↗ | Severe |
| January 2024 | relocated and returned to full-time work, with sick days spent in bedIn January of this year I relocated and started a new job, but have veeery quickly found myself running out of steam.In context ↗ | Moderate |
Symptoms mentioned
Anxiety & low moodHeart symptoms & palpitationsLight & noise sensitivityPOTS & dysautonomiaSleep problemsTemperature regulationTinnitus
Their words about their symptoms
- Sleep problems
they asked if I've had sleeping problems, night sweats, palpitations, and dizzy spells. I have done since around December
In context ↗ - POTS & dysautonomia
night sweats, palpitations, and dizzy spells. I have done since around December
In context ↗ - Tinnitus
I contracted a virus a few years ago and had some real ENT problems as a part of it, including tinnitus and hyperacusis.
In context ↗ - Light & noise sensitivity
The hyperacusis would choose a frequency for the day.
In context ↗ - Anxiety & low mood
In the past I've chalked my symptoms up to depression and anxiety, but have had CBT and medication for both with really positive results
In context ↗