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ME/CFS Very severe → relapsedIll 36 years before improving or writing

ME/CFS for over 35 years, bedbound at worst, improved then relapsed

Acorn 62466 on RedditLast post Jan 2026

Condition
ME/CFS
At worst
Very severe (bedbound, unable to do basic care)
Ill before improving or writing
36 years
Last post
Jan 2026
In their words
  • Condition: ME/CFSI've had CFS for 35 years In context ↗
  • At worst: Very severeI was being spoon and straw fed, bed pans and no washing at all. In context ↗
  • Now: RelapsedThere have been times where I've been much better than the first year, but currently I am worse. In context ↗
Read from 116 of their posts and comments; links to the 66 this page draws on

Request to remove this story

Summary

Acorn 62466 fell ill as a child in the 1980s and had ME/CFS for over 35 years, going from bedbound as a teenager to about ten years at a moderate level where she lived independently, and for a few years could cycle and swim. A breakdown and stress around 2018 led to her worst patch, bedbound and unable to feed herself; she later improved to walking round the house and using a mobility scooter. In recent posts she described being severely affected, with her health still fluctuating.

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What they tried

What they credit

time· Helped a lot · mainshiatsu· Helpedvitamin B complex· Helpedacupressure wrist bands· Helpedmeditation· Helpedbreathing exercises· Helpedmagnesium· Helpedvitamin C· Helpedzinc· Helpedcutting out sugar· Helpedhealthy/exclusion diet· Helpedrest in a dark room· Helped · main

Also tried

anti-inflammatories· Helpednutritional support· HelpedMirtazapine· Helped · wore offhumidifier· Helpedprobiotics· Helpeddigestive enzymes· HelpedImmunace· Helpedcompression socks· Helpedred clover· Helpedevening primrose· Helpednattokinase· HelpedUltrainflamx· Helpedglucosamine/chondroitin· HelpedCBD· Helpedvagal massage· Helpedcold water· Helpedcounsellor· Helpedaffirmations· Helpedturmeric· Helpedantihistamines· Helpedquercetin· Helpedashwagandha· Helpedcalcium carbonate antacids· Helpedsodium alginate antacids· Helpedlettuce tea· Helped · wore offblue filter glasses· Helpedtiger balm· Helpedvestibular rehabilitation exercises· Helpedalternate-day dieting· Helpedpacing· HelpedCBT· No changevagus nerve stimulator· No changeheavy metal detox· No changeintestinal detoxes· No changeviral detoxes· No changereseeding with good bacteria· No changemineral supplements· No changesalt and water· No changeQ10· WorseD-Ribose· WorseChinese herbs· WorseGET· Worsepropranolol· WorsePPIs· Worseamitriptyline· Worsecitalopram· Worseketo diet· Worsecollagen tablets· Worsedigestive enzymes with bromelain· Much worseacupuncture· Much worsenortriptyline· Much worsevitamin D· Not saidparacetamol· Not saiddulcolax· Not saidprune juice· Not saidglutathione· Not saidparoxetine· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
  • Q10 · WorseI couldn't cope with Q10. It gave me palps and made me feel dizzy and terrible In context ↗
  • anti-inflammatories · HelpedMedication, not really, only anti-inflammatories. In context ↗
  • nutritional support · HelpedNutritional support and shiatsu are the only things that have helped as far as I can tell. In context ↗
  • Mirtazapine · HelpedIt's worked a treat for me. ... Then they stopped working and gave me lots of nasty side effects.
  • D-Ribose · WorseI tried it for a few weeks gradually increasing the amount, but I never got up to 5g! I felt worse and worse with each increase. In context ↗
  • humidifier · HelpedI use a humidifier right next to my bed and that helps with the nose bleeds a lot. In context ↗
  • probiotics · HelpedWhen my digestion is getting bad, probiotics and digestive enzymes help to get it going again. In context ↗
  • digestive enzymes · HelpedDigestive enzymes helped somewhat, when GI issues were very bad. In context ↗
  • digestive enzymes with bromelain · Much worseones with bromelain in gave me really bad stomach pain for months In context ↗
  • Immunace · HelpedI take an general supplement called Immunace, which makes the flu like symptoms go off quicker IMO In context ↗
  • vitamin B complex · HelpedVitamin B complex definitely gives me a bit more energy. In context ↗
  • vitamin D · Not saidAnd taking Vit D is good if you never get any light, which I don't! In context ↗
  • paracetamol · Not saidWhen I'm in a bad crash I also take a low dose of paracetamol, like one tablet a day. In context ↗
  • compression socks · HelpedI find compression socks help a bit with BP, faintness and palpitations. In context ↗
  • red clover · HelpedI take red clover and evening primrose all through the month to try and regulate my hormones. In context ↗
  • evening primrose · HelpedIt does help with swelling and mood. In context ↗
  • Chinese herbs · WorseI tried chinese herbs years ago, and it only made me worse. In context ↗
  • CBT · No changeI did three months. It was a waste of time and energy. In context ↗
  • GET · WorseI had GET and it made me rapidly worse. In context ↗
  • propranolol · WorseI can't tolerate Propranolol at all, as it makes my heart too slow and I can't sleep In context ↗
  • nattokinase · HelpedI'm trying nattokinase ATM, which isn't for energy as such, but helps some people with ME. I have improved a little In context ↗
  • vagus nerve stimulator · No changeTried two different types. Waste of money that I don't really have In context ↗
  • acupuncture · Much worseI had the first session and had a very strong crash that lasted about 3 weeks. In context ↗
  • acupressure wrist bands · HelpedAccupressure wrist bands have always worked well for me for any sort of nausea and they also help with the reflux a bit. In context ↗
  • Ultrainflamx · HelpedProbiotics and anti-inflammatories like ultrainflamx helped at least as much as enzymes. In context ↗
  • glucosamine/chondroitin · HelpedGlucosamine/chondrotin and CBD oil helps with the joint pain. In context ↗
  • CBD · HelpedI take CBD every day, which helps with anxiety and joint pain a bit In context ↗
  • meditation · HelpedThe other thing that helped was meditation. In context ↗
  • breathing exercises · HelpedCold water, breathing exercises and vagal massage. In context ↗
  • counsellor · HelpedI've also found a good counsellor. In context ↗
  • affirmations · HelpedAnd affirmations have helped me in the past with the mental health. In context ↗
  • turmeric · HelpedI take turmeric and antihistamines all the time, and I think they both help a bit. In context ↗
  • quercetin · HelpedFor MCAS, antihistamines and Quercetin, help me, I think. In context ↗
  • ashwagandha · HelpedAshwaganda helped with mood and anxiety. In context ↗
  • calcium carbonate antacids · HelpedI take calcium carbonate antacids for nausea In context ↗
  • sodium alginate antacids · Helpedand sodium alginate antacids for reflux. In context ↗
  • PPIs · WorseI was on PPIs for ages, but they always made it worse when coming off them In context ↗
  • dulcolax · Not saidI use dulcolax and prune juice. In context ↗
  • lettuce tea · HelpedI drink lettuce tea ... That really works for me, but I wouldn't take it every day, because it stops working. In context ↗
  • blue filter glasses · HelpedI bought some blue filter glasses on your recommendation and they really do help. In context ↗
  • tiger balm · HelpedI find tiger balm helpful for headaches In context ↗
  • vestibular rehabilitation exercises · HelpedI got that back after doing physiotherapist exercises for vestibular rehabilitation. In context ↗
  • heavy metal detox · No changeI did heavy metal detoxes in the 90s and they made no difference at all. In context ↗
  • intestinal detoxes · No changeI have done heavy metal detoxes, and intestinal detoxes and reseeding with good bacteria, and viral detoxes and none of it made any difference at all. In context ↗
  • mineral supplements · No changeI take mineral supplements and I always have, and I am still at the severe end of the scale. In context ↗
  • magnesium · HelpedB vits and magnesium, and turmeric and quercetin help a bit. In context ↗
  • vitamin C · Helpedthe only supplements that have made any difference are Vit B complex, and maybe Vit C and zinc. And then not by much! In context ↗
  • glutathione · Not saidI also take a lot of anti-oxidants (Vit C and glutathione). In context ↗
  • amitriptyline · WorseIt helped me too up to 15mg. But over that it made my heart race ... It stopped working after about 8 months for me as well. In context ↗
  • nortriptyline · Much worseNortri\[tyline, which is almost the same drug was a million times worse! Couldn't take it for longer than a week or so. In context ↗
  • paroxetine · Not saidParoxetine gave me no side effects, but had a horrible withdrawal that lasted longer than I was taking the tablets for. In context ↗
  • citalopram · WorseCitalopram and Nortriptyline I couldn't tolerate the side effects at all. In context ↗
  • keto diet · WorseIt just made me worse. Tried pushing through, but it caused a big crash. In context ↗
  • alternate-day dieting · HelpedThe trick for me was dieting every other day. So a diet amount of calories one day and then a holding steady amount the next day. In context ↗
  • cutting out sugar · HelpedI feel a lot better avoiding processed sugar In context ↗
  • healthy/exclusion diet · HelpedEating healthily, but not in any sort of faddy or extreme way makes a clear difference. In context ↗
  • time · Helped a lotI never really knew why I got better, apart from time, rest, calm, and good diet. In context ↗
  • rest in a dark room · HelpedTime and rest, in a completely dark room with no sound or stimulus as much as possible. In context ↗
  • pacing · HelpedTry pacing, and always do less than you think you can. In context ↗
  • collagen tablets · WorseI get the same reaction to collagen tablets. In context ↗
  • salt and water · No changeI've had no luck with water and salt. In context ↗
  • COVID vaccination as treatment · Not saidFirst jab gave me strong flu-like symptoms for 2 days, and the second one nothing much. In context ↗

Approaches: Alternative therapies · Diet · Mind-body practices · Radical rest · Supplements

Their path

Very severeSevereModerateMildNear normalRecovered32 y34 y36 y38 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. The first step with a time is 31 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 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
1980sfell ill as a childI've been ill since the 80s when there were def less EMFs. And I was a kid! In context ↗Not stated
teenage yearssevere and bedbound as a teenager, back to bedbound for about five yearsI was severe and bed bound when I was a teenager, had a better year, back to bedbound for maybe 5 years. In context ↗Severe
best part of ten years before about 2018gradual improvement, lived independently and could cycle and swimThen up to more moderate, where I could live independently for the best part of ten years In context ↗ModerateTime and spontaneous remission
about 2018 (three years before May 2021)crashed into her worst patch: bedbound, spoon- and straw-fed, bedpansI was being spoon and straw fed, bed pans and no washing at all. In context ↗Very severe
May 2021back up to walking around the house and making basic mealsBut I'm back up to being able to walk around the house and make basic meals etc In context ↗SevereTime and spontaneous remission
January 2023out on a mobility scooter once or twice a week and sitting up much of the dayI'm not as bad as I was by a long way. I still can't look after myself entirely, but I'm going out on my mobility scooter once or twice a week and I'm in the light, sitting up for a lot of the day. In context ↗SevereTime and spontaneous remission
September 2023health on the way down again after a good six months in 2022I did have a good 6 months last year where I was really out and about and even got tot he seaside ... My health is on the way down at the moment tho. In context ↗Severe
April 2025described severe CFS that was getting worseMy health is getting worse and worse and I stopped seeing doctors a couple of years ago. In context ↗Severe

Adverse events

Symptoms mentioned

Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitusVision problems
Their words about their symptoms
  • Post-exertional malaiseI've had very fast violent crashes and been completely bedbound and unable to eat or drink In context ↗
  • Brain fogit causes extra brain fog In context ↗
  • POTS & dysautonomiaI have CFS and POTS and vagus nerve problems. In context ↗
  • Mast cell (MCAS) & allergiesI get a histamine reaction around ovulation and around my period. In context ↗
  • Sleep problemsI'm on Mirtazipine at the moment and sleeping 6-7 hours a night. Without it I slept between 2-6. In context ↗
  • Pain & fibromyalgiaI get swollen, painful joints In context ↗
  • Headaches & migraineI also have chronic vestibular migraine In context ↗
  • Gut problemsMy digestive system is a mess and very over sensitive In context ↗
  • Light & noise sensitivityI can't tolerate music ever In context ↗
  • Heart symptoms & palpitationsWhen I'm severe, my heart can be too fast or too slow In context ↗
  • Muscle weaknessI couldn't lift my arms or move nearly at all. In context ↗
  • Anxiety & low moodI've been depressed for decades In context ↗
  • Flu-like symptomsI get cold type symptoms as part of a crash, but usually mild fever, headaches and bodyaches, and nausea. In context ↗
  • TinnitusI need some noise because I have very loud tinnitus In context ↗
  • Temperature regulationI had years of hot flushes and night sweats In context ↗
  • Vision problemsI do too. I've always had it to some extent, but it's got much worse In context ↗

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