ME/CFS
Outcome unclearIll for 17 monthsNeeds ongoing treatment
ME/CFS after long COVID, very severe and housebound, trying LDN and mestinon
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- 17 months
- Last post
- Nov 2025
In their words
- Condition: ME/CFS
i've had mecfs (induced by long covid) for over a year now
In context ↗ - At worst: Very severe
i have been bedbound with very severe mecfs for almost 6 months
In context ↗ - Began after: COVID
i got covid in june, never stopped being sick
Read from 14 of their posts and comments; links to the 10 this page draws on
Summary
They caught COVID in June 2024 and never recovered, calling it ME/CFS triggered by long COVID. They kept working and studying until mid-2025, when a crash left them mostly bedbound; by November 2025 they were very severe and housebound. They credited LDN, mestinon, nattokinase, nicotine patches, acetyl-L-carnitine and psilocybin with easing fatigue, orthostatic intolerance and PEM, but head knocks repeatedly set them back.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- acetyl L carnitine · Helped a lot
acetyl L carnitine has had remarkable (immediate) effects on my fatigue
In context ↗ - D ribose · Helped
D ribose is helpful for physical fatigue
In context ↗ - psilocybin · Helped
microdosing psilocybin has really really really helped me manage pem as i experience it
In context ↗ - nicotine patches · Helped
nic patches in very low doses also have helped me
In context ↗ - nattokinase · Helped
nattokinase also helps me, and if you have heart problems it’s worth a shot
In context ↗ - LDN · Helped
ldn has helped me but it’s been a slow titration process bc i’m sensitive. increasing the dose is what made the color return to my face
In context ↗ - mestinon · Helped
mestinon often helps with the dysautonomia that causes orthostatic intolerance and palpitations, and it makes me feel a lot less weak
In context ↗ - cold showers · Helped a lot
cold showers help with my palpitations and orthostatic intolerance sososo much
In context ↗ - box breathing and humming · Not said
my new clinic also recs humming and box breathing (4 counts for each part) particularly when you wake up
In context ↗ - cupping · Helped a lot
cupping and acupuncture also work wonders for me
In context ↗ - oxaloacetate cfs · No change
does anyone want oxaloacetate cfs that doesn’t work for me
In context ↗ - radical rest · Not said
i have had to radically rest the past few days
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were |
|---|---|---|
| June 2024 | COVID infection, never recoveredi got covid in june, never stopped being sick. i’m 19, almost 20In context ↗ | Mild |
| June 2025 | crash, mostly bedboundi’ve been in a crash and mostly bedbound for two and a half monthsIn context ↗ | Severe |
| October 2025 | able to watch TV again during a slow improvementa month and a half ago i was able to watch TV for the first time since i crashedIn context ↗ | Severe |
| 2025-11-15 | bedbound with very severe ME/CFS and post-concussion symptomsi have been bedbound with very severe mecfs for almost 6 monthsIn context ↗ | Very severe |
Symptoms mentioned
Anxiety & low moodFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
microdosing psilocybin has really really really helped me manage pem as i experience it
In context ↗ - Flu-like symptoms
the other day i had an extremely painful sore throat
In context ↗ - Headaches & migraine
i’m nauseous, noise and light sensitive, more exhausted, and my head hurts
In context ↗ - Light & noise sensitivity
i’m nauseous, noise and light sensitive
In context ↗ - POTS & dysautonomia
cold showers help with my palpitations and orthostatic intolerance sososo much
In context ↗ - Heart symptoms & palpitations
cold showers help with my palpitations and orthostatic intolerance
In context ↗ - Muscle weakness
mestinon often helps with the dysautonomia that causes orthostatic intolerance and palpitations, and it makes me feel a lot less weak
In context ↗ - Anxiety & low mood
i really just want to end it all
In context ↗