Mostly bedbound with ME/CFS for a few years, now much better with pacing and rest
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
I got sick with MECFS four years ago.
In context ↗ - At worst: Severe
I was mostly bedbound for a few years
In context ↗ - Now: Much better
Currently I’m moderate-mild. Took me 4.5 years to go from severe (bedbound) to now moderate-mild (able to attend school 2hrs a week).
In context ↗ - Began after: nothing they could name
Just woke up one morning absolutely exhausted.
Read from 8 of their posts and comments; links to the 6 this page draws on
Summary
Alder 98258 woke one morning in 2022 with ME/CFS and was mostly bedbound for a few years. Pacing and rest brought a slow, gradual improvement to housebound, and treating other conditions - quetiapine for insomnia, salt tablets for POTS, EMDR and DBR therapy, home physio - plus pacing let them start studying two hours a week. In July 2026 a sudden jump allowed a short run, and they are moderate-mild and still pacing, though the run caused a small crash.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- pacing and resting · Helped
gradually it got a little better to where I was housebound as I learned to pace myself properly
In context ↗ - LDN · Worse
I gave LDN a go but it was causing a flare up of NES for me.
In context ↗ - various vitamin supplements · Helped
I am on various vitamin supplements to make sure my vitamin levels stay correct ... I think this has definitely helped me improve
In context ↗ - salt tablets · Helped
as well as salt tablets for POTS. I think this has definitely helped me improve
In context ↗ - quetiapine · Helped
Overall, I think a huge help has been treating my other conditions. Eg: sleep meds (quetiapine) for severe insomnia
In context ↗ - therapy (EMDR & DBR) · Helped
therapy (EMDR & DBR) for CPTSD & FND
In context ↗ - exercise physio at home · Helped
regularly having an excersise physio come to my house to help me prevent too much muscle atrophy
In context ↗
Approaches: POTS medication · Antipsychotics · Pacing · Trauma & somatic work
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 |
|---|---|---|---|
| 2022 | woke one morning exhausted; mostly bedbound for a few yearsI got sick with MECFS four years ago. Just woke up one morning absolutely exhausted. I was mostly bedbound for a few yearsIn context ↗ | Severe | |
| 2025 | gradually became housebound as they learned to pacegradually it got a little better to where I was housebound as I learned to pace myself properlyIn context ↗ | Moderate | Pacing and the energy envelope |
| 2026 | slow improvement over 6 months; returned to studying in person 2 hours a weekFor the past 6ish months I’ve seen a slow improvement and I’ve been able to return to studying in-person for about 2hrs total per week.In context ↗ | Moderate | Pacing and the energy envelope |
| 2026-02-21 | crashed after pushing past their limitsBecause I’ve been able to do more, I’ve been pushing myself (past where I should).In context ↗ | Moderate | |
| 2026-07-29 | sudden improvement over two weeks; able to go on a short runTwo-ish weeks ago I woke up feeling ok, and I’ve slowly improved from there.In context ↗ | Mild | Pacing and the energy envelope |
| 2026-09-02 | small crash after a runThe running caused a small crash (won’t be doing that again lol), but it thankfully didn’t lower my overall threshold!In context ↗ | Mild | |
| 2026-09-02 | still doing well overall, pacing and studyingI’m actually still pretty good ME-wise!In context ↗ | Mild |
Adverse events
- Low-dose naltrexone“I gave LDN a go but it was causing a flare up of NES for me.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I’m very lucky to have never had a major crash until now, only small ones in the past.
In context ↗ - Brain fog
my mental fatigue is still pretty bad
In context ↗ - POTS & dysautonomia
salt tablets for POTS
In context ↗ - Sleep problems
sleep meds (quetiapine) for severe insomnia
In context ↗ - Heart symptoms & palpitations
Sometimes your body will give you hints (brain fog, tachycardia, sweating, etc)
In context ↗ - Muscle weakness
regularly having an excersise physio come to my house to help me prevent too much muscle atrophy
In context ↗
Ask Miruvor AI
Similar stories
-
Housebound or bedbound with long COVID, now much better with rapamycin and rest
After an acute COVID infection Stone 61523 was housebound or bedbound for many months with headaches, brain fog, heat intolerance, palpitations and PEM. Two six-month courses of rapamycin, with radical rest, pacing and supplements, brought steady gains in…
-
Housebound for three years with long COVID, now much better after time and intensive rest
Caught COVID in July 2020 and was housebound (not bedbound) for about three years with extreme pelvic pain, severe brain fog, DPDR, memory loss and GI symptoms. She credits time and intensive rest for a brain 'reboot' at about three years, followed by speech…
-
Bedbound for months with ME/CFS, now somewhat better with pacing and guanfacine
Kite 77342 got EBV in June 2025 and later spent months bedbound in a dark room with severe brain fog, light and sound sensitivity and around 700 steps a day at worst. Pacing, nervous-system work and guanfacine from February 2026 brought slow, uneven…
-
Just shy of bedbound with ME/CFS, now much better with pacing and low-dose naltrexone
Disabled by a March 2020 COVID infection and a 2021 reinfection, they spent over a year just shy of bedbound with ME/CFS, hyperadrenergic POTS and slow digestion. They credited pacing and radical rest, low-dose naltrexone, THC and therapy for slowly climbing…