ME/CFS
Severe → no benefitNeeds ongoing treatment
From low-end moderate ME/CFS to almost bedbound, with no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Nov 2025
In their words
- Condition: ME/CFS
I've been in rolling pem since I got sick.
In context ↗ - At worst: Severe
It got a bit "better" since becoming almost entirely bedbound
In context ↗ - Now: No benefit
Moderate too severe with covid.
In context ↗
Read from 19 of their posts and comments; links to the 15 this page draws on
Summary
Living with ME/CFS alongside celiac disease and Graves' disease, they described rolling PEM since becoming ill and a baseline that slipped from the low end of moderate to almost entirely bedbound, worsening with COVID. Six weeks lying still in the dark nearly cleared their symptoms; after later bad crashes, they slowly came back to their previous baseline. Ivabradine lowered their POTS heart rate and cool packs eased air hunger from chronic hyperventilation.
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What they tried
Also tried
treated the grave· Helped a lotT3· Helpedketo· Helped · wore offcool pack in my neck· Helpedlaying still in the dark· Helpedivabradine· Helpedgluten free diet· No changevitamin D· No changeB12· No changebreathing exercises· Worsepsychiatric meds· Not saidnot overdoing it· Not said
Their words about each treatment
- psychiatric meds · Not said
I was actually quite overweight due to all the psychiatric meds I was put on
In context ↗ - treated the grave · Helped a lot
These symptoms stopped immediately once I treated the grave - within a week they were gone, I shit you not.
In context ↗ - gluten free diet · No change
while being gluten free for 8 years has changed nothing
In context ↗ - T3 · Helped
When I went on 40-50 mcg T3 the fog that was had me unironically getting tested for dementia (early thirties) finally lifted a reasonable amount (still got the ME brainfog).
In context ↗ - keto · Helped
Keto put a stop to that and it was refreshing. Lost weight that I had gained too. However it's not been working after the first time.
In context ↗ - cool pack in my neck · Helped
Cooling my neck helps with air hunger a bit for me
In context ↗ - vitamin D · No change
even though my Drs got excited when we found out, it did not help with symptoms
In context ↗ - B12 · No change
My B12 is always low too, but getting that up also doesn't help, it just prevents further damage I guess.
In context ↗ - not overdoing it · Not said
By not overdoing it so much that I get to where my entire body just shuts down
In context ↗ - laying still in the dark · Helped
it only really clicked when I lay still and in the dark for 99.5% of the day for six weeks and my symptoms nearly went away
In context ↗ - breathing exercises · Worse
breathing exercises when the air hunger gets especially bad make it worse for me tbh
In context ↗ - ivabradine · Helped
I do take ivabradine for POTS and it helps.
In context ↗
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. 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
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | ME/CFS onset; rolling PEM ever sinceI've been in rolling pem since I got sickIn context ↗ | Not stated | |
| — | Declined from the low end of moderate to almost entirely bedboundgained approx. 15 kg since I was at the low end of moderate ... since becoming almost entirely bedbound | Severe | |
| — | Lay still in the dark 99.5% of the day for six weeks; symptoms nearly went awayI lay still and in the dark for 99.5% of the day for six weeks and my symptoms nearly went awayIn context ↗ | Severe | Radical rest |
| — | COVID infection; moderate to severeModerate too severe with covid.In context ↗ | Severe | |
| 2025-11 | Still mostly bedbound; ivabradine lowers POTS heart rate, air hunger persistsIt got a bit "better" since becoming almost entirely bedboundIn context ↗ | Severe |
Adverse events
- “I was actually quite overweight due to all the psychiatric meds I was put on when they didn't diagnose my hyperthyroid for years” In context ↗ Side effects
- Meditation, yoga, breathwork“breathing exercises when the air hunger gets especially bad make it worse for me tbh” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I've been in rolling pem since I got sick
In context ↗ - Brain fog
still got the ME brainfog
In context ↗ - POTS & dysautonomia
I do take ivabradine for POTS and it helps
In context ↗ - Breathlessness
I have it lab proven that it's chronic hyperventilation for me
In context ↗ - Heart symptoms & palpitations
if I don't take ivabradine I'm sporting a pretty tachycardia
In context ↗