ME/CFS
Moderate → much betterIll 9.5 years before improving or writing
Housebound with ME/CFS, now much better after stress reduction and brain retraining
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 9.5 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I have many symptoms of ME/CFS: Fatigue, PEM, unrefreshing sleep, autonomic dysfunction, joint pain
In context ↗ - At worst: Moderate
I am not bedbound but I am housebound. ... Can't drive, had to quit my programming job because it is too mentally taxing.
In context ↗ - Now: Much better
Today I'm only 85% better, but I'm excited to say that I no longer meet the diagnostic criteria of ME/CFS. ... I've kinda stalled.
- Began after: another virus
The story goes that I got a virus in 6th grade, and became extremely anxious and depressed at around that time.
Read from 24 of their posts and comments; links to the 14 this page draws on
Summary
He became ill at 11 with joint pain that worsened into ME/CFS, and by 19 was housebound and had quit his programming job. From December 2022 he credits stress reduction, gradual increases in activity, time with friends and brain retraining for steady improvement, reaching 85% better by July 2023 and no longer meeting ME/CFS criteria. By 2026 he had stalled, with constant nausea and fatigue.
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What they tried
What they credit
Also tried
diet of chamomile tea, coffee, peanuts, peanut butter, Greek yogurt, and lots of potatoes· Helped · wore offleaving school and quitting work as a software engineer· Helpedmelatonin· Helpedtime with friends / social support· HelpedProzac, then Zoloft· No changeProzac, then Zoloft· No changeturmeric (with other anti-inflammatory supplements)· No changesupplements in general· No changeAPAP· No changestrict pacing / avoiding PEM· No changeLamictal· Not saidBuspar· Not saiddaily journal of my improvement· Not said
Their words about each treatment
- Prozac, then Zoloft · No change
I've been diagnosed with mild sleep apnea ... and depression, the treatments for both of which didn't do anything.
In context ↗ - Lamictal · Not said
Lamictal is fine, maybe it helps maybe it doesn't. Very few side effects which is why I stick with it.
In context ↗ - Buspar · Not said
Also on Buspar for anxiety.
In context ↗ - diet of chamomile tea, coffee, peanuts, peanut butter, Greek yogurt, and lots of potatoes · Helped
I went through what I thought was partial remission after a diet of chamomile tea, coffee, peanuts, peanut butter, Greek yogurt, and lots of potatoes.
In context ↗ - gentle movement and gradually increasing activity (RipStik, walks, time in nature) · Helped
my plan was to increase certain types of activities (i.e., time in nature or with friends) to just above what was consistently tolerable
In context ↗ - turmeric (with other anti-inflammatory supplements) · No change
no luck with supplements advertised to reduce inflammation, including turmeric
In context ↗ - supplements in general · No change
I have had no positive benefits from any supplements whatsoever for any problem I've ever had.
In context ↗ - leaving school and quitting work as a software engineer · Helped
My symptoms only really improved when I left school.
In context ↗ - melatonin · Helped
I take it and an hour later I am 100% out.
In context ↗ - APAP · No change
I was on an APAP and noticed no improvement.
In context ↗ - strict pacing / avoiding PEM · No change
I avoided PEM for about 6 years and did not recover.
In context ↗ - stress reduction · Helped a lot
The most important step in my improvement was stress reduction.
In context ↗ - brain training · Helped
I found the "brain training" stuff to be useful
In context ↗ - meditation · Helped
That's not to say meditation wasn't useful
In context ↗ - daily journal of my improvement · Not said
I started a daily journal of my improvement, and I recommend that all of you readers start your own.
In context ↗ - time with friends / social support · Helped
Without my friends I would probably still be housebound.
In context ↗
Approaches: Brain retraining · Mind-body practices · Physiotherapy and rehab
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 |
|---|---|---|---|
| 2013 (age 11) | severe fatigue, depression and joint pain began after a virusmy first symptoms started when I was 11, with chronic pain in my ankles, and eventually my knees.In context ↗ | Mild | |
| 2017 (about four years later) | joint pain worsened; could walk but no longer run or jumpmy joint pain converges to the point where I can walk but no longer run or jump for any significant period of time.In context ↗ | Mild | |
| 2019 (age 16) | blood pooling, daytime sleepiness, depression and breathlessness with heavier college workloadI didn't really start feeling like crap until I was 16. Blood pooling, then persistent daytime sleepiness, then depression, then breathlessness in the morningsIn context ↗ | Mild | |
| January 2022 | housebound, quit programming job, stopped driving, chess and collegeI am not bedbound but I am housebound.In context ↗ | Moderate | |
| early 2022 | crashed hard a month after an exercise-driven 'partial remission'I went through what I thought was partial remission after a diet of chamomile tea ... Exercised a bunch. ... Crashed hard a month later.In context ↗ | Moderate | |
| June 2022 | improved after finishing dual enrollment classes and quitting the software job, while restingI've gone from being unable to do almost anything, to being able to go to the store once a week and do some cooking every day.In context ↗ | Moderate | Pacing and the energy envelope |
| December 2022 | began stress reduction and gradual increases of activity, time in nature and with friendsDecember 2022. That was when I decided that I actually could get better from ME/CFS.In context ↗ | Moderate | Graded rehab and self-made programmes |
| July 2023 | 85% better, no longer met ME/CFS diagnostic criteriaToday I'm only 85% better, but I'm excited to say that I no longer meet the diagnostic criteria of ME/CFS.In context ↗ | Near normal | Graded rehab and self-made programmes |
| September 2025 | moved back in with parents, frequent meltdowns, mind 'still on fire'the longer I stay the more meltdowns I have. Moments of screaming into a towel, writhing on the floor.In context ↗ | Mild |
Adverse events
- Meditation, yoga, breathwork“I used to try and meditate basically 24/7, but that ended up actually _increasing_ stress.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsLight & noise sensitivityPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I have many symptoms of ME/CFS: Fatigue, PEM, unrefreshing sleep
In context ↗ - Brain fog
I'm having bad brain fog right now so if my post isn't well articulated that's why
In context ↗ - POTS & dysautonomia
I developed blood pooling in my hands and feet
In context ↗ - Sleep problems
I also developed joint pain and excessive daytime sleepiness.
In context ↗ - Pain & fibromyalgia
I have had chronic joint pain for the last 11 years
In context ↗ - Gut problems
I'm still nauseous basically all the time.
In context ↗ - Breathlessness
I've had air hunger for a while, which is weird.
In context ↗ - Anxiety & low mood
became extremely anxious and depressed at around that time
In context ↗ - Light & noise sensitivity
I have some sensory sensitivities that are unavoidable.
In context ↗
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