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ME/CFS Severe → relapsedNeeds ongoing treatment

Mostly housebound then bedbound with ME/CFS, improved on pacing and LDN, then relapsed

Maple 44702 on RedditLast post Jun 2025

Condition
ME/CFS
At worst
Severe (mostly bedbound)
Ill before improving or writing
Not stated
Last post
Jun 2025
In their words
  • Condition: ME/CFSI have ME/CFS and long covid. The ME is due to covid. In context ↗
  • At worst: SevereYeah. Pushed into PEM and crashed repeatedly. Severe now. Bedbound In context ↗
  • Now: RelapsedI’ve improved a lot in between some major crashes. In context ↗
  • Began after: COVIDI got LC in April 20. Pre vaccination. In context ↗
  • Says they never had: TinnitusI don’t have tinnitus from MECFS so obviously that wasn’t part of it
Read from 602 of their posts and comments; links to the 67 this page draws on

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Summary

Maple 44702, in the UK, fell ill with long COVID and ME/CFS after a COVID infection in April 2020, becoming severe and mostly housebound after a crash in January 2021, then fully bedbound after a crash in January 2023 before improving to pottering around the house. Low-dose naltrexone, bisoprolol, ketotifen, a strict low-histamine diet, pacing and medical cannabis each helped somewhat, but he remained severe, with overexertion and minor illness causing further crashes.

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What they tried

What they credit

bisoprolol (beta blocker)· Helped a lot · mainLDN (low dose naltrexone)· Helped a lot · mainrest and pacing· Helped a lot · mainKetotifen· Helped a lot · mainlow histamine diet· HelpedSerrapeptase· Helpedvery low carb / ketogenic diet· HelpedPfizer COVID vaccine· Helped · wore off

Also tried

medical cannabis (THC and CBD flower)· Helped a lotcompression leggings and calf sleeves· HelpedFexofenadine· HelpedFamotadine· HelpedNattokinase· Helpedlactoferrin· HelpedSodium Cromoglycate (cromolyn)· Helpedtime restricted eating (one meal a day)· Helpedd-ribose· Helpedpyridostigmine (Mestinon)· Helpedmelatonin· Helpedelectric heat pad / heated blanket· Helpedcounselling· Helpedsalt, water and electrolytes· Helpedice chips (swallowing retraining)· Helpedextended fasting· No changevitamin D· No changecreatine· No changeivabradine· Worsediltiazem· Worselions mane· Worsequercetin· Worsecold showers· Worsealcohol· Worsevitamin K2· Not saidacetyl L carnitine· Not saidWelltory (with Apple Watch)· Not saidantibiotics (amoxicillin, metronidazole, gentamicin)· Not saidantibiotics (amoxicillin, metronidazole, gentamicin)· Not saidantibiotics (amoxicillin, metronidazole, gentamicin)· Not said
Their words about each treatment
  • bisoprolol (beta blocker) · Helped a lotI have recently started beta blockers (biosoprolol 1.25mg twice a day) which have been very helpful for my cardiac symptoms In context ↗
  • ivabradine · WorseIvabradine gave me tachycardia out of nowhere, the cardiologist said he’d never seen anything like it before. In context ↗
  • diltiazem · WorseI tried ivabradine and then diltiazem and both worsened my tachychardia and palpitations In context ↗
  • LDN (low dose naltrexone) · Helped a lotLDN - this helped increase my capacity a lot, and quickly In context ↗
  • rest and pacing · Helped a lotRest and pacing. Accepting that I can’t do things anymore and stopping trying. In context ↗
  • low histamine diet · HelpedA strict low histamine diet (18 months and counting) has been the only game changer for me. In context ↗
  • compression leggings and calf sleeves · HelpedMy heart rate has been lower by like 10% all day. In context ↗
  • Fexofenadine · Helpedhas slightly reduced my unpleasant cognitive sensations In context ↗
  • Famotadine · HelpedSeems to have counteracted the fexofenadines effect on my HR In context ↗
  • Ketotifen · Helped a lotLDN and ketotifen are probably the strongest effects I've noticed. In context ↗
  • medical cannabis (THC and CBD flower) · Helped a lotIf I take it for a few weeks and it builds up in my system, I’m still fucked but I’m a new person. In context ↗
  • Nattokinase · HelpedNattokinase by far. It helps my circulation and therefore the coldness in my extremities. In context ↗
  • Serrapeptase · HelpedSerrapeptase (this and NK for microclots) In context ↗
  • lactoferrin · HelpedI think it’s improved brain fog a bit but just a bit. In context ↗
  • Sodium Cromoglycate (cromolyn) · HelpedThey help my nausea, and increase my appetite. In context ↗
  • very low carb / ketogenic diet · HelpedI’ve found very low carb / maybe keto (I think I was in ketosis) *very* helpful. In context ↗
  • time restricted eating (one meal a day) · HelpedI found time restricted eating, and limiting carbs, to help make my caloric restriction easier. In context ↗
  • extended fasting · No changeI’ve done extensive fasting over the past year. It’s not moved the needle In context ↗
  • vitamin D · No changeUnfortunately d does nothing for me. I’ve confirmed blood levels are high and also take K2, no impact that I can tell In context ↗
  • vitamin K2 · Not saidI have been supplementing with approx 150 mcg of K2 per day throughout this time to aid absorption In context ↗
  • lions mane · WorseMan lions mane gave me mega headaches. In context ↗
  • quercetin · WorseI think it's causing my HR to spike and feel wierd for an hour or so In context ↗
  • d-ribose · HelpedI notice maybe a 30 minute *slight* boost. In context ↗
  • acetyl L carnitine · Not saidwhile also trying some new supplements (d-ribose and acetyl L cartanine) In context ↗
  • creatine · No changedidn’t do anything noticeable for my post covid MECFS In context ↗
  • pyridostigmine (Mestinon) · HelpedIt gives me a little boost. Just a little one though. In context ↗
  • melatonin · HelpedMelatonin is a big help for me but it does cause me to have vivid dreams. In context ↗
  • Welltory (with Apple Watch) · Not saidIt just tells me I’m fucked all the time though even on my relatively good days, so I don’t know if it’s well calibrated for pwME In context ↗
  • cold showers · WorseI know cold showers give me PEM for example In context ↗
  • electric heat pad / heated blanket · HelpedIt’s the only way I can keep warm for like, over half the year In context ↗
  • antibiotics (amoxicillin, metronidazole, gentamicin) · Not saidI wonder if the IV antibiotics I was on (amoxicillin, metronidazole and gentamicin) had any role in that In context ↗
  • counselling · Helpedtalking to my counsellor does help me a lot In context ↗
  • Pfizer COVID vaccine · HelpedI felt temporarily better after my first Pfizer shot in ~Apr 21, but that faded In context ↗
  • salt, water and electrolytes · HelpedLots of salt and lots of water (4L per day with added electrolytes) has made a noticable improvement in how comfortable I feel In context ↗
  • ice chips (swallowing retraining) · HelpedI retrained my swallowing reflex with ice chips In context ↗
  • alcohol · WorseMakes me feel much better too, until the following day. I stopped though In context ↗

Approaches: Anticoagulants · Antihistamines & MCAS · Beta-blockers · Diet · Pacing · Vaccination

Their path

Very severeSevereModerateMildNear normalRecoveredonset12 mo2 y3 y4 y5 y

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. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they wereAfter
April 2020COVID infection; long COVID beginsI got LC in April 20. Pre vaccination. In context ↗Mild
January 2021crash after ignoring mild PEM; mostly housebound sinceIgnoring mild PEM in 2020 led me to a crash in Jan 21 and I’m now, likely permanently, severe In context ↗Severe
April 2021temporarily better after first Pfizer dose, then fadedI felt temporarily better after my first Pfizer shot in ~Apr 21, but that faded In context ↗Not statedCOVID vaccination as treatment
December 2022started LDN; capacity increased a lotWere it not for my subsequent crash, I would have returned to work for at least three days a week in February In context ↗ModerateLow-dose naltrexone
January 2023crashed after trying to push his car; months in bedI then broke down and tried to push my car to start it and well, probably did permanent damage and haven’t recovered back to pre breakdown state after six months. In context ↗Severe
November 2023from fully bedbound to pottering around the houseI have gone from fully bedbound at the start of the year (mega crash, don’t ask) to pottering around the house now. In context ↗SeverePacing and the energy envelope
July 2024medical cannabis cuts bedbound time from about 95% to about 50%Without weed I’m like 95% bedbound due to fatigue and rest needs. With weed I’m maybe 50% bedbound In context ↗Severe
November 2024collapse after a couple of infectionsI was in a pretty good place in summer. That all collapsed on autumn / early winter after a couple infections In context ↗Severe
June 2025still severe and largely bedboundI have severe MECFS from covid so I’m pretty fucked. In context ↗Severe

Adverse events

Symptoms mentioned

Anxiety & low moodBrain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
  • Post-exertional malaiseMy PEM is still at a level where I had to spend Tuesday in bed because I worked a bit too hard on Monday (one hour of phoning around pharmacies looking for a medicine) In context ↗
  • Brain fogStill get crushing PEM but my brain fog and nausea are much less. In context ↗
  • Mast cell (MCAS) & allergiesI do have MCAS and beta blocker is still essential for me In context ↗
  • Sleep problemsI do have sleep problems In context ↗
  • Pain & fibromyalgiaI’m getting more and more lower back pain as I spend longer and longer in bed. In context ↗
  • Headaches & migraineI get 24/7 headaches for periods of time, but it does go away for periods of time too. In context ↗
  • Gut problemsI’ve got Mcas and gastroparesis so I do a lot of unplanned fasting. In context ↗
  • Light & noise sensitivitySome exceptions like my catastrophic gastro issues and sensitivity to powerful stimulus In context ↗
  • Heart symptoms & palpitationsMy heart rate is about 10-20 bpm higher than pre covid In context ↗
  • Anxiety & low moodMy mood has definitely changed. Now that you mention it, maybe I am sad all the time. In context ↗
  • Temperature regulationNattokinase has stopped my extremities getting so cold that I needed an external heat source for them. In context ↗

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