ME/CFS
Severe → somewhat betterNeeds ongoing treatment
Too dizzy to leave bed with ME/CFS, now somewhat better after low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
developed moderate-severe ME/CFS and Severe POTS and also MCAS (all officially diagnosed)
In context ↗ - At worst: Severe
I was for the first two months, too dizzy to get out of bed, let alone go to school and work.
In context ↗ - Now: Somewhat better
Took me 3 years to get to where i am now (moderate with some mild days here and there)
In context ↗ - Began after: COVID
When i caught in in January of this year, it felt like a regular virus
Read from 203 of their posts and comments; links to the 57 this page draws on
- Jun 2025
- Apr 2023
- Aug 2026
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Summary
UK student Dune 54302 fell ill with COVID in January 2023 aged 17 and developed moderate-severe ME/CFS, POTS and MCAS, spending the first two months too dizzy to leave bed. Low-dose naltrexone raised her baseline, and a £2k private stellate ganglion block cleared her POTS and brain fog for about a week before both returned. She calls herself still far from recovered.
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What they tried
What they credit
LDN· Helped a lot · mainlow dose abilify (LDA)· Helped a lot · mainpropranolol / bisoprolol· Helpedpropranolol / bisoprolol· Helpedpacing, rest and timers· Helpedbrain training/calming techniques (Raelan Agle videos)· HelpedD-ribose· HelpedCoQ10· Helpedprobiotic supplements (Biomesight-guided)· Helpedcreatine· Helpedketotifen· Helpedstellate ganglion block· Helped · main · wore offmidodrine· HelpedGLP-1· Helped
Also tried
5-HTP· Helpedbirth control pill· Helpedashwagandha· Helpedmagnesium citrate· Helpedyoga nidra and breathwork· Helpedstopping alcohol· HelpedCBD oil· Helpedparacetamol / tylenol· HelpedVisible Plus band and Fitbit· Helpedslow release melatonin· Helpedvalerian, hops and passionflower tablets· Helpedvalerian, hops and passionflower tablets· Helpedvalerian, hops and passionflower tablets· HelpedNAC· Helpedturmeric/curcumin/ginger pills· Helpedturmeric/curcumin/ginger pills· Helpedsalt, fluids, compression and electrolytes· Helpedsalt, fluids, compression and electrolytes· Helpedeating a lot more food· Helpedevening primrose oil and maca· Helpedevening primrose oil and maca· Helpedantivirals· No changeantifungal cream· No changeantibiotic cream· No changesteroid cream· No changeCBT· No changecetirizine and other antihistamines· No changeCurable program and somatic tracking· No changeovarian cyst removal / laparoscopy· No changeketo, low-carb and plant-based whole-food diet· Worseketo, low-carb and plant-based whole-food diet· Worseketo, low-carb and plant-based whole-food diet· WorseMestinon· Worsevalacyclovir (Valtrex)· Worseivabradine· Much worsebutyrate supplement· Not saidIntermittent fasting· Not said
Their words about each treatment
- 5-HTP · Helped
I took 5-htp for years and it helped a lot with sleep and low mood.
In context ↗ - birth control pill · Helped
i take it without breaks and it eliminates the bleed completely. Gamechanger in that regard
In context ↗ - antivirals · No change
My GP gave me antivirals which i can't say helped much
In context ↗ - propranolol / bisoprolol · Helped
i get the most relief from medication, bisoprolol and midodrine have saved me
In context ↗ - ashwagandha · Helped
I take ashwaganda, magnesium citrate and 5-htp to help my anxiety, as well as beta blockers. It works well
In context ↗ - magnesium citrate · Helped
4mg slow release melatonin and two herbal sleep tablets (valarian, hops, passionflower), 5-htp and magnesium help keep me asleep
In context ↗ - antifungal cream · No change
my gp has given me antibiotic creams, anti fungal creams and steroid creams to try, nothing has touched it
In context ↗ - CBT · No change
Propranolol (prescribed), CBT (did nothing), ashwagandha and 5-htp.
In context ↗ - pacing, rest and timers · Helped
When i kept myself stable for a long time i was able to add in a tiny bit more activity
In context ↗ - brain training/calming techniques (Raelan Agle videos) · Helped
by following some of her brain training/calming techniques i have noticed a difference
In context ↗ - yoga nidra and breathwork · Helped
Things like yoga nidra (a type of meditation, not actual yoga) also help me
In context ↗ - cetirizine and other antihistamines · No change
as soon as i started ketitofen (certrizine did nothing personally) they went away
In context ↗ - stopping alcohol · Helped
i’d always crash after drinking so its eliminated that aspect
In context ↗ - CBD oil · Helped
Low dose of cbd oil under the tongue before bed (like 10-20mg) made the mistake of doing 70mg as a beginner and it made me really anxious
In context ↗ - paracetamol / tylenol · Helped
Weirdly paracetamol/tylenol helps me a bit, even if i’m not in pain
In context ↗ - keto, low-carb and plant-based whole-food diet · Worse
Keto gave me bad gut dysbiosis i’m still trying to fix
In context ↗ - Visible Plus band and Fitbit · Helped
I have visible plus and its great, very handy to have a visual representation of how much energy i’ve used and how much i have left
In context ↗ - D-ribose · Helped
Taking large amounts of d ribose and coq10 lessens the severity for me, but do so with caution.
In context ↗ - CoQ10 · Helped
I take 1g when I’m feeling awful and it definitely gives me a boost.
In context ↗ - valerian, hops and passionflower tablets · Helped
two herbal sleep tablets (valarian, hops, passionflower), 5-htp and magnesium help keep me asleep
In context ↗ - Curable program and somatic tracking · No change
I’m already on the curable program for the mind-body component but haven’t seen much progress there yet either
In context ↗ - NAC · Helped
i think NAC helps me a tiny bit
In context ↗ - probiotic supplements (Biomesight-guided) · Helped
ended up following their recommendations on probiotic supplements and diet, it has improved over time and i can tolerate more foods now
In context ↗ - butyrate supplement · Not said
Been supplementing but not had any results yet because its too soon.
In context ↗ - ivabradine · Much worse
Ivabradine made me feel like i was in PEM 24/7.
In context ↗ - LDN · Helped a lot
It really helped increase my baseline from mostly bedbound to being able to tolerate screens and some reading again
In context ↗ - creatine · Helped
10g creatine, several cbd drops, 4g coq10 and 6000g tumeric/curcurmin/ginger pills and that helps lessen the blow a bit
In context ↗ - turmeric/curcumin/ginger pills · Helped
6000g tumeric/curcurmin/ginger pills and that helps lessen the blow a bit
In context ↗ - salt, fluids, compression and electrolytes · Helped
things like staying cool, compression, legs elevated all the time and drinking tons of water helped somewhat
In context ↗ - eating a lot more food · Helped
the only thing that truly changed with my baseline was me eating a ton more food than usual because of Christmas
In context ↗ - ketotifen · Helped
Ketotifen was what got rid of them for me
In context ↗ - Mestinon · Worse
Mestinon gave me a really scary attack where i lost control of the muscles in my tongue and in parts of my thighs
In context ↗ - ovarian cyst removal / laparoscopy · No change
it took me two months to recover, it did not affect my baseline
In context ↗ - stellate ganglion block · Helped
Cured my pots and brain fog temporarily, improved my baseline a small amount and has stayed that way so far.
In context ↗ - midodrine · Helped
the midodrine lessens them
In context ↗ - evening primrose oil and maca · Helped
i have been taking evening primrose oil and maca and i think its making a difference
In context ↗ - valacyclovir (Valtrex) · Worse
I started taking it 4 days ago and feel super wiped out all of the time, headaches etc.
In context ↗ - GLP-1 · Helped
the only thing that’s actually helping is GLP-1
In context ↗ - low dose abilify (LDA) · Helped a lot
It’s changed my life (along with other meds like ldn and medical cannabis)
In context ↗ - Intermittent fasting · Not said
I tried it and found i’d go hypoglycaemic after eating (which is weird because I’m definitely not diabetic) because my body would release too much insulin at once.
In context ↗
Approaches: GLP-1 drugs · POTS medication · Antihistamines & MCAS · Beta-blockers · Brain retraining · Other drugs and medicines · Pacing · Supplements
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 |
|---|---|---|---|
| January 2023 | COVID-19 then ME/CFS onset; too dizzy to leave bed for two months, quit job and schoolI was for the first two months, too dizzy to get out of bed, let alone go to school and work.In context ↗ | Severe | |
| 2023-04-22 | forcing half days at school while pacingNow i force myself to do half days at school, because the idea of not finishing my a levels and getting to go to university meant flushing my life plans down the drainIn context ↗ | Mild | |
| 2024-07-06 | gradual worsening over a year and a half until severei’ve been gradually getting worse and worse (only got my diagnosis a few months ago). I am now severe.In context ↗ | Severe | |
| 2025-04-06 | LDN raised baseline; could sit in the living room most of the dayIt’s been the only thing i’ve tried that has made my family say they can visibly see a change in how i am. I bounce back from PEM quicker and can tolerate more.In context ↗ | Moderate | Low-dose naltrexone |
| 2025-05-22 | week after first SGB: POTS resolved, felt basically recoveredBut that week was incredible, i was basically recovered. For the first few days i didn’t need my pots meds at all.In context ↗ | Near normal | Stellate ganglion block |
| 2025-06-20 | POTS and brain fog returned over the week; small baseline gain stayedover the course of a week the pots returned. As did the brain fog.In context ↗ | Moderate | |
| 2025-12-10 | virus straight after a second SGB round undid some of the gaini caught a virus immediately afterwards and i think it “undid” it a bitIn context ↗ | Moderate | |
| 2026-05-19 | LDA raised her PEM threshold; could go out and do things sometimesmy threshold for pem is much higher now and i can actually go out and do things sometimes!!In context ↗ | Moderate | Low-dose Abilify / aripiprazole |
| 2026-08-26 | moderate baseline with some mild days, after 3 years of illnessTook me 3 years to get to where i am now (moderate with some mild days here and there)In context ↗ | Moderate |
Adverse events
- Intermittent fasting“I tried it and found i’d go hypoglycaemic after eating (which is weird because I’m definitely not diabetic) because my body would release too much insulin at once.” In context ↗ Other
- Propranolol (Inderal)“I take propranolol for the physical symptoms, but am trying to wean off because its causing me quite bad hair loss.” In context ↗ Side effects
- CBD (cannabidiol)“Low dose of cbd oil under the tongue before bed (like 10-20mg) made the mistake of doing 70mg as a beginner and it made me really anxious” In context ↗ Mood or psychiatric effects
- Keto and low-carb diets“I did keto and it somehow caused some sort of SIBO? I can’t tolerate vegetables high in sulfur anymore ... caused gut dysbiosis that i’m still trying to fix over a year later.” Gut side effects
- Low-dose naltrexone“when i jumped from 0.5 to 1 i felt suuper ill.” In context ↗ Made symptoms worse
- Ketotifen (Zaditen)“I’m on ketitofen now too and while its helping with some symptoms, i feel like an utter zombie even when i take it at night” In context ↗ Side effects
- Ketotifen (Zaditen)“I’m stuck at 0.5 because any more makes my fatigue worse the next day, wish i could take more” In context ↗ Made symptoms worse
- “When i take several in one sitting i feel really sick, even after a meal.” In context ↗ Side effects
- “Weed triggers my pots incredibly badly ... it does make my pots flare” Made symptoms worse
- Stellate ganglion block“the risk of PEM is there. I was very lucky in that the resulting PEM was mild” In context ↗ Made symptoms worse
- “Some of the scariest moments i’ve had with fainting only happened because i had thc in my system, it makes pots so much worse.” In context ↗ Low blood pressure or fainting
- Mestinon / pyridostigmine“Mestinon gave me a really scary attack where i lost control of the muscles in my tongue and in parts of my thighs, i haven’t touched it since” In context ↗ Side effects
- Propranolol (Inderal)“I had to switch from propranolol because it made my fatigue worse” In context ↗ Made symptoms worse
- Ivabradine“Ivabradine made me feel like i was in PEM 24/7.” In context ↗ Made symptoms worse
- Valtrex / valacyclovir“I started taking it 4 days ago and feel super wiped out all of the time, headaches etc.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesPOTS & dysautonomiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I get post exertional malaise from any exercise, usually 1-2 days after the activity.
In context ↗ - Brain fog
the brainfog came back within days after my sgb’s
In context ↗ - POTS & dysautonomia
developed moderate-severe ME/CFS and Severe POTS and also MCAS (all officially diagnosed)
In context ↗ - Mast cell (MCAS) & allergies
its MCAS. Antihistamines stopped it after god knows how long
In context ↗ - Sleep problems
i’ve been prone to bouts of insomnia my whole life, and it has gotten worse since infection
In context ↗ - Headaches & migraine
I get the head pain and pressure sensations all the time
In context ↗ - Gut problems
I went down the gut healing route after giving myself dysbiosis with the keto diet
In context ↗ - Heart symptoms & palpitations
I also have tachycardia. My resting BPM is over 100 and it keeps me up at night.
In context ↗ - Breathlessness
I'm also out of breath going up stairs, to the point where i'm gasping and losing vision.
In context ↗ - Flu-like symptoms
I have a sore throat that never goes away, its like actual torture
In context ↗ - Anxiety & low mood
it helped a lot with sleep and low mood
In context ↗
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