ME/CFS
Severe → relapsedNeeds ongoing treatment
Severely affected by ME/CFS for years, helped by leaving mould then relapsed
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- May 2026
In their words
- Condition: ME/CFS
EBV, POTS, ME/CFS, EDS, MCAS... the whole gang etc etc
In context ↗ - At worst: Severe
I'm severely but also adhd and this level of executive functioning isn't available to me without stressing the cfs into angry pulsing demon mode
In context ↗ - Now: Relapsed
I was feeling better than I had in years, but I only had a short term stay in that house. I'm in an air bnb and suffering re-exposure atm so total stall out
In context ↗
Read from 33 of their posts and comments; links to the 20 this page draws on
Summary
A Reddit user with ME/CFS, POTS, EDS and MCAS was severely affected for years and had needed a home health aide since 2017. They blamed brain retraining for their worst period; moving out of toxic mould helped until re-exposure stalled it. Treatments gave only marginal, fleeting gains, while stimulants, guanfacine and psych meds caused harm. They were still moderately to severely ill in May 2026.
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What they tried
What they credit
Also tried
Mestinon· Helpedmassage therapist· Helpedmitochondrial support supplements· Helpedivabradine· Helpedlow dose alprazolam· Helpedherbs· HelpedModafinil· Helpedinfrared sauna· WorseADHD meds· Worseantihistamines· Worseexercises in bed / rehab exercises· WorseGuanfacine· Worserebounding· Much worseneural retraining· Much worsepsych meds / anxiety meds· Much worsesleep hygiene· Much worseHBOT· Not saidbinders· Not saidLDN· Not saidallergy shots· Not said
Their words about each treatment
- HBOT · Not said
It's a work in progress so I cannot say if this is ultimately helping, harming, or a net neutral.
In context ↗ - binders · Not said
I'm taking binders after sessions to help my body eliminate all of that stuff.
In context ↗ - mold avoidance · Helped
I was feeling better than I had in years, but I only had a short term stay in that house.
In context ↗ - Mestinon · Helped
It gives me about 5-10 degrees of heat tolerance.
In context ↗ - massage therapist · Helped
but thats the best way I've found to get them sorted out
In context ↗ - infrared sauna · Worse
are the suck with POTS
In context ↗ - rebounding · Much worse
Rebounding is a PEM nightmare for me and my EDS gave me floppy ankles.
In context ↗ - LDN · Not said
I can't remember where having any but ive been on it for a decade
In context ↗ - ADHD meds · Worse
I definitely crashed on them. It was good for a bit but wasn't sustainable
In context ↗ - rest / stress reduction · Helped
I improve under stress reduction, but it's fleeting as I have no support system.
In context ↗ - mitochondrial support supplements · Helped
Literally everything I take for mitochondrial supoort helps me just a little bit tho.
In context ↗ - neural retraining · Much worse
The sickest I've ever been with this was when I drank the full kool-aid on neural retraining. Because it's a physical disease.
In context ↗ - antihistamines · Worse
Antishistamines lowered my stomach acid and I switched to allergy shots, personally
In context ↗ - allergy shots · Not said
I switched to allergy shots, personally
In context ↗ - free sleeping · Helped
My HRV is way better when I can just indulge in as many hours of sleep as my body wants
In context ↗ - exercises in bed / rehab exercises · Worse
doing exercises in bed always just meant my alignment was off and I was making things worse than if I got on the floor
In context ↗ - psych meds / anxiety meds · Much worse
Psych meds robbed me of my healthy apprehension and I fucked myself up so bad.
In context ↗ - ivabradine · Helped
Only thing that seems to help is comfort, rest, support, safety, massage for pain, herbs and brothy soups ... And like, ivabradine but I have POTS.
In context ↗ - low dose alprazolam · Helped
But the as needed dosing works for me because if my overall sense of apprehension is muted I just make poor decisions.
In context ↗ - herbs · Helped
massage for pain, herbs and brothy soups
In context ↗ - Modafinil · Helped
Yeah it helped me on days I absolutely had to get up and go.
In context ↗ - Guanfacine · Worse
Guanfacine was nice for about 2 days before the effects of low blood pressure became agonizing.
In context ↗ - sleep hygiene · Much worse
I made my MECFS so much worse trying to stick to stupid sleep hygiene.
In context ↗
Approaches: Mould avoidance · Radical rest
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2017 | ill and disabled enough to be approved for a home health aideIve had an order for a home health aide since 2017 and can never get one for a miriad of systemic failure reasons.In context ↗ | Severe | |
| — | worst period after doing brain retrainingThe sickest I've ever been with this was when I drank the full kool-aid on neural retraining.In context ↗ | Severe | |
| 2025-04-30 | felt better than in years after a short stay in a houseI was feeling better than I had in years, but I only had a short term stay in that house.In context ↗ | Not stated | Mold avoidance / CIRS protocol |
| 2025-04-30 | mould re-exposure in an air bnb, total stall outI'm in an air bnb and suffering re-exposure atm so total stall outIn context ↗ | Severe | |
| 2025-07-01 | adrenaline surges improved after moving out of toxic mouldMine improved when I moved. I was living in toxic mold exposure.In context ↗ | Not stated | Mold avoidance / CIRS protocol |
| 2026-05-27 | still moderately to severely illI am straight up disfigured and destitute from them lobotomizing my ability to respond appropriately to my environment with moderate to severe mecfsIn context ↗ | Severe |
Adverse events
- Hyperbaric oxygen (HBOT)“I have had the classic MCAS face rash after getting out of an HBOT chamber” In context ↗ Allergic reaction / anaphylaxis
- Mestinon / pyridostigmine“First time I took it I was on a really limited diet tho and had stomach pains with tarry black stools.” In context ↗ Gut side effects
- Stimulants (unspecified)“I definitely crashed on them. It was good for a bit but wasn't sustainable” In context ↗ Made symptoms worse
- Brain retraining programs (DNRS, Gupta, ANS Rewire, Primal Trust)“The sickest I've ever been with this was when I drank the full kool-aid on neural retraining.” In context ↗ Made symptoms worse
- H1 antihistamines (unspecified)“Antishistamines lowered my stomach acid and I switched to allergy shots, personally” In context ↗ Gut side effects
- Sleep hygiene and regular sleep schedule“I made my MECFS so much worse trying to stick to stupid sleep hygiene.” In context ↗ Made symptoms worse
- Guanfacine“Guanfacine was nice for about 2 days before the effects of low blood pressure became agonizing.” In context ↗ Low blood pressure or fainting
- Antidepressants (unspecified)“Psych meds robbed me of my healthy apprehension and I fucked myself up so bad.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Anxiety & low moodBrain fogLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Post-exertional malaise
Basically everything causes me malaise
In context ↗ - Brain fog
I don't have the attention span for reading anymore
In context ↗ - POTS & dysautonomia
I also have POTS and these are POTS symptoms.
In context ↗ - Mast cell (MCAS) & allergies
EBV, POTS, ME/CFS, EDS, MCAS... the whole gang etc etc...
In context ↗ - Pain & fibromyalgia
comfort, rest, support, safety, massage for pain
In context ↗ - Muscle weakness
I have neuro muscular weakness from the strain of hopping around bc I have no home.
In context ↗ - Anxiety & low mood
if my overall sense of apprehension is muted I just make poor decisions
In context ↗ - Temperature regulation
Mold, heat and sometimes air exhaust from denser cities are all rough so no.
In context ↗ - Light & noise sensitivity
When the screens are frying my nervous system
In context ↗
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