ME/CFS
Severe → no benefitIll for 3 yearsNeeds ongoing treatment
Mostly bed- or couchbound and housebound with ME/CFS, still moderate-to-severe, no better
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 3 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
them went into remission 10 months later and them got sick again and I'm now stuck with moderate-severe ME
In context ↗ - At worst: Severe
I have been unable to leave my home for the past year and go mostly bed/couchbound
In context ↗ - Now: No benefit
I'm trying out supplements and meds by they only bring tiny improvements if any
In context ↗ - Began after: COVID
i once had mild LC with pots
Read from 134 of their posts and comments; links to the 42 this page draws on
- Mar 2025
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Summary
A teenager in Europe had mild long COVID with POTS that remitted after ten months before they got sick again and developed ME/CFS, leaving them mostly bed- or couchbound and housebound for a year. Nicotine patches reduced brain fog and PEM and stopped chronic diarrhoea; melatonin helped sleep and an unnamed medication cut PEM, though fatigue improved only slightly. They remained on the moderate-to-severe side, managing POTS with midodrine, mestinon and compression.
Ask Miruvor AI
What they tried
Also tried
pacing· Helpedelectrolytes, salt and compression· Helpedelectrolytes, salt and compression· Helpedmidodrin· HelpedPyridostigmine (Mestinon, Kalymin)· Helpedd ribose· Helpedantihistamines and travel tablets (dimenhydrinate)· HelpedQ10· HelpedNADH· Helpednicotine patches (Nicotine Test)· Helpedwarm showers· Helpedmoisturising the skin daily· Helpednebuliser with saline solution· Helpedhot then progressively colder shower· Helpedguided relaxation audio lying flat, breathing pattern· Helpedmelatonin· Helpedeating cleaner (more protein and vegetables, fewer processed carbs)· HelpedGinkobil (ginkgo biloba)· Helpedginger and spicy food· Helpedl-theanine· HelpedLDN· Helpedhead of the bed raised / whole bed at an angle· Helpedaspirin· Helpedcreatine· No changeacetyl l carnitine· No changeweight loss diet· No change30 second plank· Not said
Their words about each treatment
- pacing · Helped
when I do good pacing I feel amazing most of times in the evening
In context ↗ - electrolytes, salt and compression · Helped
consuming around 3 extra grams of salt a day by putting electrolyte powder in my water. This with the compression already helps a lot.
In context ↗ - midodrin · Helped
midodrine helps me a lot with tachycardia, adrenaline dumps, dizziness
In context ↗ - Pyridostigmine (Mestinon, Kalymin) · Helped
mestinon helps a little with muscle pain/weakness and improves the brainfog
In context ↗ - 30 second plank · Not said
this is the 3rd day in a row I managed to do a 30 second long plank, always need to sleep after, but I don't get long lasting PEM
In context ↗ - creatine · No change
tried creatine for a month or so but didn't do anything for pots or cfs other than increasing my creatine numbers in a urine test
In context ↗ - d ribose · Helped
I'm using a sugar named d ribose, helps a lot with overall energy
In context ↗ - antihistamines and travel tablets (dimenhydrinate) · Helped
I'm on 2 with lc and feel like they make a difference
In context ↗ - Q10 · Helped
most effective is the combination of Q10+NADH+D-Ribose for me
In context ↗ - acetyl l carnitine · No change
they really dont do much for me, but the nicotine test helps quite well in terms of brainfog
In context ↗ - nicotine patches (Nicotine Test) · Helped
they permanently fixed my digestive issues and acutely fix my neurological symptoms and stop a crash within 24h
In context ↗ - warm showers · Helped
warm showers do fix my headaches most of the time, even when they're pots related
In context ↗ - moisturising the skin daily · Helped
moisturising my skin daily helps a ton
In context ↗ - nebuliser with saline solution · Helped
every evening before bed I use my nebuliser but with saline solution and it does feel nicely moisturizing for my dry airways like nothing else
In context ↗ - hot then progressively colder shower · Helped
in a crash is start of my shower very hot and slowly turn it colder as long as it doesn't get uncomfortable. This helps me a lot for 12h
In context ↗ - guided relaxation audio lying flat, breathing pattern · Helped
in this case, I usually listen to this with my noise cancelling headphones and lie flat on my back while relaxing every muscle
In context ↗ - melatonin · Helped
3 nights on and melatonin feels like a game changer to me
In context ↗ - eating cleaner (more protein and vegetables, fewer processed carbs) · Helped
I generally feel a bit better when I eat cleaner (lots of protein amd vegetables with less processed carbs)
In context ↗ - weight loss diet · No change
So far I feel no different.
In context ↗ - Ginkobil (ginkgo biloba) · Helped
the only thing that helped me with brainfog and memory issues was 120mg tablets of Ginkobil
In context ↗ - ginger and spicy food · Helped
ginger helps me too, but spicy things do in general
In context ↗ - l-theanine · Helped
only supplement that's making an actual difference for me in terms of stress/unrest is l-theanine
In context ↗ - LDN · Helped
It made the day to day life only a little easier, but significantly reduced PEM for me.
In context ↗ - head of the bed raised / whole bed at an angle · Helped
having the head part of the bed elevated woth books is sooo helpful, especially for my pots
In context ↗ - aspirin · Helped
i tookan aspirin and felt a lot better than usual in pem a few hours after
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 |
|---|---|---|---|
| onset | ME/CFS after an earlier mild long COVID with POTS that remittedi once had mild LC with pots, them went into remission 10 months later and them got sick again and I'm now stuck with moderate-severe MEIn context ↗ | Moderate | |
| November 2024 | brain fog and PEM improved on low-dose nicotine patchesfor me they improve brainfog by a lot and reduce pem when I use them. I feel like they permanently fixed my chronic diarrheaIn context ↗ | Moderate | Nicotine patches |
| December 2024 | continuous crash; mostly bed- or couchbound and unable to leave home for a yearI am 17 I have been unable to leave my home for the past year and go mostly bed/couchboundIn context ↗ | Severe | |
| December 2024 | sleep and constant fight-or-flight eased by melatonin during a continuing crashstarted 1mg of melatonin tablets 3 nights ago and they seem to have fixed thatIn context ↗ | Severe | |
| 2026 | PEM much reduced after about a year on LDN, fatigue only slightly betterminor reduction in fatigue and major reduction of pem symptoms ... i feel like pem is still getting less bad over time after taking it for a year nowIn context ↗ | Moderate | Low-dose naltrexone |
Adverse events
- Salt, electrolytes and fluids“I'm often close to vomiting with salt tablets so I use the electrolytes” In context ↗ Gut side effects
- Salt, electrolytes and fluids“on an empty stomach I almost threw up a couple times with 1g onss” In context ↗ Gut side effects
- Nicotine patches“once in my 5 cycles it kept me from sleeping a few days initially, so I had to remove it before sleep” In context ↗ Insomnia from treatment
- Melatonin“the symptoms sound like a more extreme version of what I occasionally experience soon after taking them” In context ↗ Side effects
- Ginkgo biloba“It mightve contributed to my insomnia too” In context ↗ Insomnia from treatment
- Midodrine“Going higher accidentally can give me some goosebump sensation on my scalp” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsMuscle weaknessNeuropathy & tinglingPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
low dosed nicotine patches decrease my pem
In context ↗ - Brain fog
nicotine patches almost completely lift my brainfog
In context ↗ - Sleep problems
same, only thing refreshing are evening naps for me
In context ↗ - Pain & fibromyalgia
my muscles don't hurt when I pace myself well, otherwise I take a Pyridostigmine tablet
In context ↗ - Muscle weakness
I usually take 10-20mg when needed to relieve muscle weakness
In context ↗ - Gut problems
I feel like they permanently fixed my chronic diarrhea
In context ↗ - Headaches & migraine
warm showers do fix my headaches most of the time, even when they're pots related
In context ↗ - Neuropathy & tingling
Likely small fiber neuropathy, my triggers are heat, bodily stress and certain cloth.
In context ↗ - Anxiety & low mood
it does help with mild depression symptoms and body aches
In context ↗ - Heart symptoms & palpitations
midodrine helps me a lot with tachycardia, adrenaline dumps, dizziness
In context ↗ - Temperature regulation
I'm not really sweating. I have cooling packs in my freezer
In context ↗