ME/CFS
Very severe → no benefitIll for 3 yearsNeeds ongoing treatment
100% bedbound with ME/CFS and rolling PEM, no improvement
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- 3 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I got it again, but the big CFS whammy
In context ↗ - At worst: Very severe
I am 100% bedbound.
In context ↗ - Now: No benefit
I was mild for 1 1/2 years, then moderate from too much screentime, then severe from stress and rolling PEM
In context ↗ - Began after: COVID
I caught covid again, or the flu, or whatever, either way, it never left me since first week of January, but this time... for real.
Read from 29 of their posts and comments; links to the 15 this page draws on
Summary
They developed long COVID in January 2024, after a 2023 episode that left them unable to walk for three months. Mild at first, they became moderate from too much screen time, then severe and eventually 100% bedbound with rolling PEM and insomnia. Quviviq helped them sleep at first, but later they managed only 30 minutes to three hours a night; by October 2026 they were very severe and crashing continuously.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- Pacing and rest · Helped
Whenever I managed to actually rest, my symptoms quickly got better.
In context ↗ - yoga · Not said
I have carefully started with yoga for my tense neck and shoulder from lying about all day
In context ↗ - slowly increasing workout · Worse
I have reached it thrice already, always after being too enthusiastic about getting better.
In context ↗ - Aggressive rest · Helped
Aggressive rest seems to work until some mini thing causes PEM and without sleep it all falls apart again.
In context ↗ - banning reddit and instagram · Helped
I did exceedingly well with this when I banned reddit and instagram and the likes for months with zero exceptions.
In context ↗ - Meditation · Worse
Meditation is too exhausting for me.
In context ↗ - Quviviq · Helped a lot
Daridorexant is a life saver for me. I do still wake up at night, but my sleep is much better.
In context ↗ - trazodone · Not said
It definitely is a lightweight compared to trazodone though.
In context ↗ - Mirtazapin · Helped
Mirtazapin works only for a few days lol.
In context ↗ - Lorazepam · Not said
Lorazepam I already have a mild tolerance to and don't want to use it too often.
In context ↗
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| January 2024 | long COVID that never resolved; still able to take short walks and care for themselvesit never left me since first week of January, but this time... for real.In context ↗ | Mild |
| mid-2025 | dropped from mild to moderate from too much screen timeI was mild for 1 1/2 years, then moderate from too much screentimeIn context ↗ | Moderate |
| — | became severe from stress and rolling PEM from screensthen severe from stress and rolling PEM from screens and stress (ADHD)In context ↗ | Severe |
| 2026-07-31 | 100% bedboundI am 100% bedbound.In context ↗ | Very severe |
| 2026-10-22 | insomnia and continuous crashing despite aggressive restI am worried I shall die. Just crashing 24/7 until my body gives up or I do.In context ↗ | Very severe |
Adverse events
- Daridorexant (Quviviq)“But it can give you weird side effects when falling asleep. Like when you aren't really sleepy it sort of forces your body to sleep while your mind is still racing.” In context ↗ Side effects
- Daridorexant (Quviviq)“Sometimes when I crashed bad it is almost violently forcing me to sleep while my mind is still awake which can feel scary.” In context ↗ Side effects
- Daridorexant (Quviviq)“it can exarcerbate dizzyness and also sort of force my body to sleep while my mind stays awake for a while. Extremely uncomfortable.” In context ↗ Made symptoms worse
- Daridorexant (Quviviq)“had sleep paralysis and hypagnogic hallucinations when falling asleep every other night at the beginning of the med” In context ↗ Side effects
- Daridorexant (Quviviq)“My lucid dreams were mostly mad horror trips I had half-control over when I started taking Quviviq.” In context ↗ Side effects
- Daridorexant (Quviviq)“30 minutes of sleep with Quviviq, then I wake up. Sometimes I manage 3 hours a night? Idk. I then crash from insomnia.” In context ↗ Insomnia from treatment
- Meditation, yoga, breathwork“Meditation is too exhausting for me.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
Yeah, PEM is not fun.
In context ↗ - Sleep problems
Got too bad. 30 minutes of sleep with Quviviq, then I wake up.
In context ↗ - Brain fog
I can't write very coherently, I shouldn't write at all.
In context ↗ - POTS & dysautonomia
when I went grocery shopping I suddenly had a heartrate of like 90-100 instead of my usual 60
In context ↗ - Heart symptoms & palpitations
My heart may be pounding, I may be feeling extremely weak, and I may be scared.
In context ↗ - Headaches & migraine
it took me well over a week to not have headaches towards night
In context ↗ - Gut problems
I get nauseaous from sleep deprivation, from screen use, I have diarrhea then, it all fucks each other up.
In context ↗ - Anxiety & low mood
I also have an anxiety disorder alongside ME.
In context ↗ - Muscle weakness
I may be feeling extremely weak
In context ↗ - Pain & fibromyalgia
Then I didn't dare to tackle another job due to the ever since then quiet foot pain.
In context ↗