ME/CFS
Very severe → no benefit
Housebound with ME/CFS, still very severe with no benefit
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- Not stated
- Last post
- Sep 2025
In their words
- Condition: ME/CFS
now that I have ME/CFS, I'm scared of crashing every time due to the intense emotions
In context ↗ - At worst: Very severe
im extremely severe atm.
In context ↗ - Now: No benefit
im extremely severe atm.
In context ↗
Read from 25 of their posts and comments; links to the 18 this page draws on
Summary
A Reddit user with ME/CFS, POTS and PTSD who was housebound 90% of the time a few weeks before September 2024 and later described themselves as extremely severe, needing help washing in bed. Prednisolone with an antiviral, low-dose naltrexone, occasional Ativan and better pacing stopped the decline: still very severe, but able to eat two meals unaided and walk about 100 steps a day. Gabapentin helps a bit.
Ask Miruvor AI
What they tried
Also tried
prednisolone· Helped a lotguided meditations· HelpedEMDR· HelpedLDN· Helpeddiet low in histamine· HelpedAtivan / sedating meds· Helpedmestinon· Helpedan antiviral medication· Helpedbetter pacing· HelpedGabapentin· Helpedinfusions for mitochondria· No changetrauma therapy· WorseCBT and psychotherapy· Worsemethylphenidate· Much worseBetablocker· Not saidWelltory· Not saidcompression socks· Not said
Their words about each treatment
- guided meditations · Helped
I have tried listening to guided meditations though and they really help me calm down.
In context ↗ - Betablocker · Not said
i halved the dosage, no improvement.
In context ↗ - Welltory · Not said
I have an app called Welltory, every time I take a measurement in school it tells me that my physiological stress is really high and I need to rest.
In context ↗ - trauma therapy · Worse
Most of the time, I need to rest for a couple of days afterward and can't attend school, because the session was so damanding.
In context ↗ - EMDR · Helped
For me, EMDR did work for my cPTSD
In context ↗ - LDN · Helped
ldn helped because I got a little less severe with it, but in very bad crashes I still sometimes get these states again
In context ↗ - diet low in histamine · Helped
also a diet low in histamine helped!! I do not have mcas tho but it still helped!
In context ↗ - Ativan / sedating meds · Helped
I can avoid crashes if I take Ativan instantly after any feelings of panic
In context ↗ - mestinon · Helped
I think I finally got out of my recent pots flare up by increasing mestinon
In context ↗ - prednisolone · Helped a lot
yes i took prednisolone twice for two weeks and i loved it, nothing helps as well as prednisolone for me!!
In context ↗ - an antiviral medication · Helped
prednisolone in combination with an antiviral medication (i had ebv reactivations)
In context ↗ - better pacing · Helped
the five things that stopped me from deteriorating were prednisolone in combination with an antiviral medication (i had ebv reactivations), ativan for occasional use, LDN and better pacing.
In context ↗ - methylphenidate · Much worse
overexerting because of the fake energy methylphenidate gave me was the reason why I got permanently worse
In context ↗ - compression socks · Not said
compression socks + I can still walk ~100 steps a day, my doc says that’s enough to avoid thrombosis
In context ↗ - Gabapentin · Helped
mine is very severe. Gabapentin helps a bit
In context ↗ - infusions for mitochondria · No change
didn’t help me at all, can make some people worse
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2024-09-12 | Housebound 90% of the time, walks caused crashesa few weeks ago I was housebound 90% of the time. going for a walk would send me in a crash and I was experiencing PEM after almost every activityIn context ↗ | Severe | |
| 2024-11-18 | Two-week crash with light intoleranceNow after i crashed i can’t tolerate light anymore, can be on my phone/watch tv only a very limited amount of timeIn context ↗ | Severe | |
| 2025-06-19 | Stopped deteriorating on prednisolone, antiviral, Ativan, LDN and pacingthe five things that stopped me from deteriorating were prednisolone in combination with an antiviral medication (i had ebv reactivations), ativan for occasional use, LDN and better pacingIn context ↗ | Very severe | Low-dose naltrexone |
| 2025-06-25 | Able to eat two meals unaided, out of POTS flaretoday I was able to eat two meals by myself ... also I think I finally got out of my recent pots flare up by increasing mestinonIn context ↗ | Severe | Mestinon / pyridostigmine |
| 2025-07-13 | Extremely severe, bedbound, washed in bedim extremely severe atm. there is some point where i think its genuinely not possible anymore to find some meaningIn context ↗ | Very severe | |
| 2025-09-15 | Still very severe; gabapentin helps a bitmine is very severe. Gabapentin helps a bitIn context ↗ | Very severe |
Adverse events
- CBT and psychotherapy“Most of the time, I need to rest for a couple of days afterward and can't attend school, because the session was so damanding.” In context ↗ Made symptoms worse
- Mestinon / pyridostigmine“I‘m on 20mg 3 times a day and haven’t had any significant side effects except a lowering of my blood pressure and heart rate but nothing drastic!” In context ↗ Low blood pressure or fainting
- Methylphenidate (Ritalin, Concerta)“overexerting because of the fake energy methylphenidate gave me was the reason why I got permanently worse” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodFlu-like symptomsGut problemsHeart symptoms & palpitationsLight & noise sensitivityPOTS & dysautonomiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
I was experiencing PEM after almost every activity
In context ↗ - POTS & dysautonomia
My POTS (I have the hyperadrenergic type)
In context ↗ - Light & noise sensitivity
can’t tolerate light anymore
In context ↗ - Heart symptoms & palpitations
I‘m getting severe chest pain again, my heart rate gets very high very easily
In context ↗ - Gut problems
my nausea got worse
In context ↗ - Flu-like symptoms
I feel like I’m getting the flu every morning and night
In context ↗ - Anxiety & low mood
I kept breathing and didn’t act on suicidal thoughts
In context ↗