ME/CFS
Very severe → no benefitIll for 8 years
Very severe ME/CFS, bedridden for years, no benefit from Abilify or lorazepam
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- 8 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I have been completely bedridden for a year
In context ↗ - At worst: Very severe
4 years bedridden. Could be bathrd once a month for two years. This past year i havent been able to shower. Cant watch tv.
In context ↗ - Now: No benefit
I am very severe and it’s the only thing that calms my insanely wired nervous system and lessens the pain and allows me to sleep.
In context ↗
Read from 11 of their posts and comments; links to the 8 this page draws on
Summary
Bedridden since about 2021, very severe at first and needing to be spoonfed. After a year fully bedridden, walking resumed in 2022 and leg muscle returned, but later came a decline: crashing whenever eating, a feeding tube in 2024, and by 2025 bedridden about four years and unable to shower or watch TV. Abilify gave some improvement in 2025; by 2026 the person was very severe and needing a very high dose of lorazepam.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- increasing movement / walking again · Not said
I haven't had any significant crashes yet which is very confusing to me, however I am much more tired than I was before.
In context ↗ - florinef · Helped
I find that florinef helps me when I’m in a crash so I take it occasionally
In context ↗ - feeding tube · Not said
now I’m on a feeding tube but its still too much for my stomach so I still start getting small crash symptoms with the tube
In context ↗ - abilify · Helped
but still feel improvements with abilify which i started a few momths ago
In context ↗ - Lorazepam · Helped
it’s the only thing that calms my insanely wired nervous system and lessens the pain and allows me to sleep
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 | After |
|---|---|---|---|
| 2018 | illness onset, very severe for a few months and spoonfedI was only very severe for a few months at the beginning (had to be spoonfed) but thankfully I am out of that now.In context ↗ | Very severe | |
| 2022-08-08 | after a year completely bedridden, started walking againI have been completely bedridden for a year and only recently started walking again (I would use a rolling chair to use the bathroom before).In context ↗ | Severe | |
| 2023-06-16 | maintained walking, leg muscle returningover the following weeks/months of maintained walking I noticed my legs gaining muscleIn context ↗ | Severe | |
| 2024-07-16 | crashed with every meal, stopped eating, feeding tubeI didn’t eat for a 6 weeks because I would crash every time I did so now I’m on a feeding tubeIn context ↗ | Very severe | |
| 2025-02-09 | some improvement on Abilify, still mostly bedridden and unable to shower or watch TVThis past year i havent been able to shower. Cant watch tv. ... still feel improvements with abilify which i started a few momths agoIn context ↗ | Very severe | Low-dose Abilify / aripiprazole |
| 2026-10-15 | recent crash, wired nervous system, needs high-dose lorazepamI am very severe and it’s the only thing that calms my insanely wired nervous systemIn context ↗ | Very severe |
Adverse events
- Tube feeding (NG, NJ, PEG, TPN)“now I’m on a feeding tube but its still too much for my stomach so I still start getting small crash symptoms with the tube” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I would crash every time I did so
In context ↗ - Brain fog
that heavy feeling in my chest and head and brain fog symptoms
In context ↗ - Gut problems
My stomach just doesn’t tolerate anything at all.
In context ↗ - Pain & fibromyalgia
lessens the pain
In context ↗ - Sleep problems
allows me to sleep
In context ↗