ME/CFS
Severe → relapsedIll 14 years before improving or writingNeeds ongoing treatment
Bedbound with ME/CFS, largely recovered after 7-8 years, then COVID relapse
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 14 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
It became a whole post-viral post-parasite ordeal which was eventually diagnosed as CFS/ME
In context ↗ - At worst: Severe
At my worst I was severe. Bedbound, dark room, not really able to use screens, sound sensitive.
In context ↗ - Now: Relapsed
A semi-recovery around 2018, then long covid brought everything back plus interest in 2021. And unlike when I first got sick, now it just keeps getting worse.
In context ↗ - Began after: another virus
I originally got post-viral CFS/ME 13 years ago while travelling overseas.
In context ↗
Read from 18 of their posts and comments; links to the 13 this page draws on
Summary
Kite 36437 fell ill with post-viral CFS/ME in 2012 while travelling overseas, in his mid-20s. At worst he was bedbound in a dark room, sound sensitive and unable to think or sleep. He largely recovered after 7-8 years, working 30 hours a week and exercising, though anxiety, headaches and gut problems stayed. COVID in 2021 brought everything back, and by late 2026 he said nothing helped and he kept getting worse.
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What they tried
What they credit
Also tried
gratitude and self-compassion exercises· Helpedpacing· Helpedcircadian rhythm entrainment· Helpedbenzodiazepines· Helpedalcohol· Helpedwhite rice· Helpedantidepressants· Worsebeta blockers· Worseheavy anti-histamines· Worsenaltrexone· Worsebone broth· Worseresveratrol· Not saidpolyphenols· Not saidtherapy· Not said
Their words about each treatment
- ketogenic diet · Helped a lot
Whole foods ketogenic diet with absolutely zero gluten or dairy. ... One of the biggest, hugest improvements I've felt.
In context ↗ - strict whole foods low histamine diet · Helped
I've also seen benefit from a strict whole foods low histamine diet, also avoiding gluten and dairy.
In context ↗ - gluten free and dairy free · Helped
If I'm not strictly avoiding gluten, I don't recover. If I'm not also strictly avoiding dairy, I don't get that much better.
In context ↗ - 5 day fast · Helped
during a 5 day fast, the feeling disappeared on day 4, and remained gone for weeks
In context ↗ - autoimmune protocol · Helped a lot
when I was following an autoimmune protocol + keto, I was fantastic - better than baseline, even.
In context ↗ - Meditation · Helped
You know what hasn't cured me, but has helped exponentially more? Meditation, gratitude exercises, self-compassion exercises, radical acceptance
In context ↗ - gratitude and self-compassion exercises · Helped
Self-compassion helps, meditation and mindfulness helps, gratitude exercises help.
In context ↗ - brain retraining · Helped
a kind of brain retraining, essentially ... It hasn't healed me, but it has helped.
- pacing · Helped
a calm nervous system, for me, makes things like pacing actually useful
In context ↗ - nofap · Helped a lot
This has been another huge mover for me, like really huge; sometimes I wonder if it's bigger than the others
In context ↗ - circadian rhythm entrainment · Helped
In addition to diet, circadian rhythm entrainment was pretty important... sleep is king.
In context ↗ - benzodiazepines · Helped
I use benzodiazepines occasionally to *reduce* MCAS and HI flares
In context ↗ - alcohol · Helped
Alcohol helped me a lot with CFS/ME. It enabled me to do a great many things. It also almost killed me, but that's a me problem.
In context ↗ - resveratrol · Not said
I've taken resveratrol, I've taken polyphenols, but none of that holds a candle to a few drinks in terms of how much my symptoms were alleviated.
In context ↗ - polyphenols · Not said
I've taken resveratrol, I've taken polyphenols, but none of that holds a candle to a few drinks
In context ↗ - antidepressants · Worse
Various antidepressants in low and regular doses ... consistently made me worse every time I try
In context ↗ - beta blockers · Worse
beta blockers, heavy anti-histamines, naltrexone, other drugs ... consistently made me worse every time I try
In context ↗ - bone broth · Worse
For me it was a HUGE symptom trigger, especially digestive problems, because it's so high histamine. It made everything worse every time I had it.
In context ↗ - white rice · Helped
I tried to eat small amounts of very easily absorbed white rice ... the rice especially helped me to get some energy
In context ↗ - therapy · Not said
I talked with a therapist but we didn't really click
In context ↗
Approaches: Brain retraining · Diet · Mind-body practices
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. The first step with a time is 6 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2012 | fell ill with post-viral CFS/ME while travelling overseasI originally got post-viral CFS/ME 13 years ago while travelling overseas.In context ↗ | Not stated |
| early years | bedbound, dark room, sound sensitiveAt my worst I was severe. Bedbound, dark room, not really able to use screens, sound sensitive.In context ↗ | Severe |
| around 2018 | largely recovered, back to office work and exerciseWhen I was largely recovered, I was back to work (30 hours per week) in an office, attending meetings, doing cognitive work all day.In context ↗ | Near normal |
| 2021 | COVID brought CFS/ME backthen got hit with covid, which brought everything back with interestIn context ↗ | Not stated |
| 2025-11 | recovering again after long COVIDThen I got hit with covid and everything came back - but I'm recovering again,In context ↗ | Moderate |
| 2026-07 | big improvement on ketogenic dietWhole foods ketogenic diet with absolutely zero gluten or dairy. ... One of the biggest, hugest improvements I've felt.In context ↗ | Moderate |
| 2026-09 | keeps getting worse, housebound, blackout curtainsAnd unlike when I first got sick, now it just keeps getting worse.In context ↗ | Severe |
Adverse events
- Extended water fasting (3+ days)“Fasting (it got worse before it got better; during a 5 day fast, the feeling disappeared on day 4” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“Various antidepressants in low and regular doses, beta blockers, heavy anti-histamines, naltrexone, other drugs - for whatever reason, probably MCAS-related, these treatments have torn me backwards step by step and consistently made me worse” In context ↗ Made symptoms worse
- Beta-blockers (unspecified)“Various antidepressants in low and regular doses, beta blockers, heavy anti-histamines, naltrexone, other drugs - for whatever reason, probably MCAS-related, these treatments have torn me backwards step by step and consistently made me worse” In context ↗ Made symptoms worse
- H1 antihistamines (unspecified)“Various antidepressants in low and regular doses, beta blockers, heavy anti-histamines, naltrexone, other drugs - for whatever reason, probably MCAS-related, these treatments have torn me backwards step by step and consistently made me worse” In context ↗ Made symptoms worse
- Low-dose naltrexone“Various antidepressants in low and regular doses, beta blockers, heavy anti-histamines, naltrexone, other drugs - for whatever reason, probably MCAS-related, these treatments have torn me backwards step by step and consistently made me worse” In context ↗ Made symptoms worse
- Antidepressants (unspecified), Beta-blockers (unspecified), H1 antihistamines (unspecified), Low-dose naltrexone“other drugs - for whatever reason, probably MCAS-related, these treatments have torn me backwards step by step and consistently made me worse every time I try something my medical team wants me to do” In context ↗ Made symptoms worse
- Extended water fasting (3+ days)“Prior to that, everything got temporarily worse - just a warning for anyone out there who might attempt this.” In context ↗ Made symptoms worse
- “I've tried *so many*, but all of them had intense side-effects for me. My system is very reactive.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineLight & noise sensitivityMast cell (MCAS) & allergiesPOTS & dysautonomiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Post-exertional malaise
because I just can't leave the house without breaking even further
In context ↗ - Brain fog
Often couldn't speak, think, sleep.
In context ↗ - POTS & dysautonomia
For me, POTS symptoms are intensified by eating, as all the blood floods the digestive system.
In context ↗ - Mast cell (MCAS) & allergies
I use benzodiazepines occasionally to *reduce* MCAS and HI flares
In context ↗ - Sleep problems
sleep is king. I sleep terribly, so I do everything I can to help it along.
In context ↗ - Headaches & migraine
I've been dealing with this for years and it's hell.
In context ↗ - Gut problems
My gut/digestion was never 100%.
In context ↗ - Light & noise sensitivity
I'm sitting in a room with blackout curtains right now, earplugs in, screen on the absolute lowest brightness setting to write this.
In context ↗ - Anxiety & low mood
I still dealt with anxiety regularly, and headaches
In context ↗ - Vision problems
vision issues gone
In context ↗
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