ME/CFS
Very severe → somewhat betterIll 18 months before improving or writing
Bedridden with ME/CFS, now slow gains from low-dose naltrexone and nervous-system work
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 18 months
- Last post
- Jul 2025
In their words
- Condition: ME/CFS
I have the severe ME/CFS version.
In context ↗ - At worst: Very severe
At my worst I could not look at my phone for more than 10 seconds. Couldn’t read listen or watch anything. I could barely move in bed.
In context ↗ - Now: Somewhat better
I’m now able to walk a little in the house and in my garden, to do small stuff like put some food in the microwave, talk to my loved ones for an hour
In context ↗ - Began after: COVID
Got Covid January 24, CFS type.
- Says they never had: Pain & fibromyalgia
I have no pain I have mostly fatigue and neurological symptoms and it works.
Read from 79 of their posts and comments; links to the 22 this page draws on
Summary
Quail 51450 fell ill with COVID in January 2024 and never recovered, becoming housebound within weeks, fully bedridden by April, and bedridden again after a June 2024 panic attack. Supplements, diet changes, an SSRI and brain retraining did not help; she credited low-dose naltrexone and nervous-system work with slow gains. At 18 months she could walk a little at home and use her phone for hours, still improving from a very severe state.
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What they tried
What they credit
Also tried
gentle stretching· Helpedradical rest· No changeL-Carnitine· No changeCoQ10· No changeB12· No changevitamin D· No changevitamin C· No changezinc· No changeOmega 3· No changeantihistamines· No changeoxygen therapy· No changediet changes (removing dairy)· No changemelatonin· No changebrain retraining (Gupta)· No changeSSRI· Worsepacing program (Fatigue Rescue with Pamela Rose)· Much worseVagus nerve stimulation· Not said
Their words about each treatment
- radical rest · No change
For the moment, I'm resting and doing nothing
In context ↗ - nervous system regulation and mind body work · Helped a lot
90% of my improvement I attribute to nervous system / mind body work.
In context ↗ - pacing program (Fatigue Rescue with Pamela Rose) · Much worse
For me personally it was a complete disaster though ... Overall, it got me much worse
In context ↗ - gentle stretching · Helped
Yeah I’m focusing on some very gentle stretching for now, it’s very peaceful and it helps.
In context ↗ - meditation and breathing · Helped
Meditation and breathing are already my main activities all day long to deal with LC.
In context ↗ - L-Carnitine · No change
L-Carnitine, CoQ10, B12, D, C, zinc. ... It sadly doesn’t help at all.
In context ↗ - Omega 3 · No change
And I added Omega 3. ... It sadly doesn’t help at all.
In context ↗ - antihistamines · No change
Supplements and vitamins, antihistamines, diet changes, oxygen therapy, SSRI couldn’t tolerate any of them…
In context ↗ - diet changes (removing dairy) · No change
I tried removing diary a while ago but it didn’t change anything.
In context ↗ - SSRI · Worse
when I tried to go back on them during LC, it didn’t work at all and worsened my symptoms
In context ↗ - benzos (Xanax) · Helped
What works a little bit are benzos.
In context ↗ - melatonin · No change
I’m currently trying melatonin, but I don’t think it’s helping a lot.
In context ↗ - brain retraining (Gupta) · No change
I’m currently trying brain retraining (Gupta). ... for me, it’s not working yet
In context ↗ - Vagus nerve stimulation · Not said
When I’m currently trying : ... Vagus nerve stimulation
In context ↗ - LDN · Helped
I started getting positive effects almost from the beginning (0.1mg) and it’s getting better and better (currently taking 0.8).
In context ↗
Approaches: Benzodiazepines · Brain retraining · Mind-body practices
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 2024 | COVID-19 infection; never recoveredOne year ago today I (31F) was getting tested for Covid… and I never got better.In context ↗ | Moderate | |
| 2024-03-03 | crash after a week of improvement; housebound, close to bedbound2 months in, housebound but not far from bedbound lately.In context ↗ | Severe | |
| April 2024 | completely bedridden, only moving to go to the toiletI was completely bedridden at the beginning of April, only moving to go to the toilet and couldn’t spend more than one or two hours on my phone for the whole day.In context ↗ | Very severe | |
| May 2024 | could move around the house and cook simple mealsI can now move around the house a little bit, spend more time on my phone and watch some videos, sometimes cook my own meals.In context ↗ | Severe | |
| June 2024 | panic attack triggered a full crash, back to fully bedriddenThen a stupid panic attack sent me into a full blown crash.In context ↗ | Very severe | |
| January 2025 | slow steady improvement out of the bedbound stateI’ve been improving very slowly but steadily since January of this year.In context ↗ | Very severe | Low-dose naltrexone |
| May 2025 | built capacity from about 3% to 10%, still bedbound 90%I was like 3% for 6 months after a major crash and I’d say I built up to 10% over the last 5 months.In context ↗ | Very severe | Low-dose naltrexone |
| 2025-07-08 | walking a little indoors and in the garden, on phone most of the day; still mostly in bedI’m now able to walk a little in the house and in my garden, to do small stuff like put some food in the microwave, talk to my loved ones for an hour, and distract on my phone most of the day, yaaaay!!In context ↗ | Severe | Low-dose naltrexone |
Adverse events
- Antidepressants (unspecified)“I don't react well to benzos and I tried an SSRI and crashed after one day.” In context ↗ Made symptoms worse
- Alprazolam (Xanax)“I don't react well to benzos and I tried an SSRI and crashed after one day.” In context ↗ Side effects
- Pacing and the energy envelope“Eventually, it made me worse.” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“For now it’s extremely tough with LC symptoms on top of side effects from the medication nausea and the insomnia is real…” In context ↗ Side effects
- Antidepressants (unspecified)“For now it’s extremely tough with LC symptoms on top of side effects from the medication nausea and the insomnia is real…” In context ↗ Insomnia from treatment
- H1 antihistamines (unspecified)“Supplements and vitamins, antihistamines, diet changes, oxygen therapy, SSRI couldn’t tolerate any of them…” In context ↗ Side effects
- Low-dose naltrexone“I feel empty numb hopeless… difficult to describe but really different from previous days.” In context ↗ Mood or psychiatric effects
- Antidepressants (unspecified)“when I tried to go back on them during LC, it didn’t work at all and worsened my symptoms.” In context ↗ Made symptoms worse
- Pacing and the energy envelope“Overall, it got me much worse and got my brain stuck in terror (which I believe is the root cause of my illness).” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseSleep problemsTinnitusVision problems
Their words about their symptoms
- Post-exertional malaise
extreme fatigue and PEM, tinnitus and auditory hallucinations (the worst…)
In context ↗ - Brain fog
I had brain fog, extreme anxiety and depressive thoughts, DPDR, memory loss
In context ↗ - POTS & dysautonomia
head pressure, brain fog, nausea, dizziness
In context ↗ - Sleep problems
I’ve had bad sleep for more than two months now
In context ↗ - Gut problems
I have a constant burning sensation in my chest and stomach + nausea
In context ↗ - Light & noise sensitivity
I can’t stand external stimuli (like family talking to me), I feel like it overloads my brain.
In context ↗ - Heart symptoms & palpitations
I now have huge fatigue, heart palpitations, nausea
In context ↗ - Neuropathy & tingling
I have a constant burning sensation in my chest and stomach
In context ↗ - Anxiety & low mood
a LOT of anxiety (which I already had before)
In context ↗ - Tinnitus
tinnitus and auditory hallucinations (the worst…)
In context ↗ - Hair loss
I have massive weight loss (8kg) and hair loss
In context ↗ - Vision problems
I also have constant severe tinnitus and crazy eye fatigue with eye pressure also
In context ↗
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