100% bedridden with ME/CFS, now somewhat better after ear acupuncture
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 4 years
- Last post
- May 2020
In their words
- Condition: ME/CFS
my fatigue and especially sensory symptoms have improved
In context ↗ - At worst: Very severe
I went from being a severe case, 100% bedridden, totally intolerant of any sensory stimulation and barely able to go to and from the toilet
In context ↗ - Now: Somewhat better
I'm still decently severe and housebound, but my fatigue and especially sensory symptoms have improved.
In context ↗
Summary
Island 42708 was a severe, 100% bedridden ME/CFS case, sensory-intolerant and barely able to reach the toilet, dependent on their mother for four years. Ear acupuncture for the vagus nerve made the first months horrendous, then improved them about 20-30%; they could get up daily, cook, take short walks and live alone, though still housebound. Acupuncture was expensive and gave only temporary relief; freezing ocean dip caused a weeks-long spiral.
Ask Miruvor AI
What they tried
What they credit
Their words about each treatment
- acupuncture · Helped
it has without doubt made me some place around 20-30% better
In context ↗ - dip in the ocean (cold water) · Worse
that set me off on a downward spiral for weeks
In context ↗ - vagus nerve breathing exercises · Worse
I've tried vagus nerve breathing exercises but seems to just make me feel not great
In context ↗
Approaches: Alternative therapies
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. 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 | After |
|---|---|---|---|
| first 2-3 months of acupuncture (around 2017) | lowest point; 100% bedridden, sensory intolerant, barely able to reach the toilet; acupuncture initially horrendousI went from being a severe case, 100% bedridden, totally intolerant of any sensory stimulation and barely able to go to and from the toiletIn context ↗ | Very severe | Acupuncture |
| after first 2-3 months of acupuncture, by Feb 2020 | about 20-30% better, on feet daily, cooking, short walks, living aloneit has without doubt made me some place around 20-30% better ... I went from being a severe case ... to being on my feet every single dayIn context ↗ | Moderate | Acupuncture |
| last summer (before May 2020) | freezing ocean dip triggered downward spiral for weeksLast summer I went for a dip in the ocean (it was freezing) and that set me off on a downward spiral for weeks.In context ↗ | Not stated | |
| May 2020 | still housebound; acupuncture gives temporary relief, symptoms can flareI'm still decently severe and housebound ... it is not a permanent fix. | Moderate | Acupuncture |
Adverse events
- Acupuncture“the first 2-3 months were absolutely horrendous” In context ↗ Made symptoms worse
- Meditation, yoga, breathwork“I've tried vagus nerve breathing exercises but seems to just make me feel not great.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Light & noise sensitivity
my fatigue and especially sensory symptoms have improved
In context ↗
Ask Miruvor AI
Similar stories
-
Bedridden for years with ME/CFS, now housebound and moderate after time and rest
A person with ME/CFS for six or more years was severe and bedridden for several years, then gradually improved to housebound and moderate. They credited time, rest and harm reduction rather than one treatment. Nicotine patches, microdosed psilocybin, pacing…
-
Housebound with long COVID, now much better and back at work after rest and acupuncture
An Australian academic in their forties got long COVID in May 2024 after a third infection: brain fog first, then crippling fatigue that left them housebound and crashing daily for months. Rest, time and treatments including acupuncture greatly improved…
-
Long COVID brain fog, fatigue and POTS, now much better with pacing and compression
A retired Northern California woman got long COVID in Italy in October 2024, with brain fog, fatigue, tinnitus and gut trouble; POTS was diagnosed later. Low-dose naltrexone, bupropion, acupuncture, osteopathy, pacing, salt and compression brought slow…
-
ME/CFS after flu, improved on mould and Lyme protocols then worse after Klonopin taper
Hawk 16074 got ME/CFS at 48 after a flu and stopped teaching at 54. She slowly improved on Shoemaker mould and Horowitz Lyme protocols, but 14 years of prescribed Klonopin and a one-year taper left her worse. Her adoptive mother's death and a three-week…