ME/CFS
Severe → relapsedIll 11 months before improving or writingNeeds ongoing treatment
Moderate to severe ME/CFS, improved with naltrexone and rest, then worse on mini pill
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 11 months
- Last post
- Jul 2026
In their words
- Condition: ME/CFS
my doctor has told me he thinks I have CFS/ME
In context ↗ - At worst: Severe
i went from moderate to severe ... now I have been in bed in the dark for 2 months
In context ↗ - Now: Relapsed
i went on the pill in january and went off it in march and it made me go from moderate to severe/very severe ... i’m partially recovered from that now at moderate/severe
In context ↗ - Began after: nothing they could name
there was no known trigger for mine i just started feeling really exhausted and slowly it progressed to the point where i would get PEM
In context ↗
Read from 71 of their posts and comments; links to the 33 this page draws on
Summary
Around late 2024 she became gradually ill with ME/CFS, mild at first then moderate, and by six to eight months was between moderate and severe. Low-dose naltrexone, started in August 2025 and titrated slowly to 4 mg, plus much rest, brought her to moderate by January 2026. After about two months on the mini pill she had gone from moderate to severe/very severe; after stopping it she was still around moderate/severe by July 2026.
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What they tried
What they credit
Also tried
Quviviq (daridorexant)· Helped a lotbuspirone (Buspar)· Helpedeating regularly (small, consistent, high-protein meals)· HelpedTHC / cannabis· Helpedubiquinol (CoQ10)· Helpedmelatonin· Helpedtrazodone· HelpedCBD· Helpedoxygen therapy (oxygen concentrator)· HelpedL-carnitine· HelpedL-theanine· Helpedsleep hygiene / consistent evening routine· Helpedantihistamines· Worsemini pill (desogestrel)· Much worsepsilocybin (shrooms)· Not saidCombined birth control (pill, patch or ring)· Not said
Their words about each treatment
- buspirone (Buspar) · Helped
it does help me not go into PEM
In context ↗ - eating regularly (small, consistent, high-protein meals) · Helped
Then about 10 minutes later I felt wayyyy better.
In context ↗ - THC / cannabis · Helped
i use it to help me fall asleep and i think it helps me quite a bit for that
In context ↗ - ubiquinol (CoQ10) · Helped
i was able to go downstairs, have meal and talk to my family and watch TV
In context ↗ - melatonin · Helped
everything that has helped me: melatonin, cbd, thc, l-theanine, trazodone, buspar
In context ↗ - CBD · Helped
a combination of THC and CBD, that’s what I usually rely on for this tired but wired feeling
In context ↗ - oxygen therapy (oxygen concentrator) · Helped
it makes a little bit of a difference when i’m having a bad day
In context ↗ - elimination diet (no gluten, dairy, grains, nightshades, peanuts) · Helped
i noticed like maybe a 10% improvement when I cut those foods out
In context ↗ - LDN (low-dose naltrexone) · Helped a lot
i went from moderate/severe to moderate on LDN, and i’m still not even at my final dosage!
In context ↗ - L-carnitine · Helped
I’m taking supplements like coq10 and l carnitine that seem to be helping a little
In context ↗ - resting and pacing · Helped
after much resting and starting ldn i am now moderate
In context ↗ - sleep hygiene / consistent evening routine · Helped
keeping a consistent evening routine has really helped me
In context ↗ - Quviviq (daridorexant) · Helped a lot
my doctor (a long covid me/cfs specialist) prescribed me Quviviq and it’s been amazing
In context ↗ - mini pill (desogestrel) · Much worse
Within a few months i went from moderate to severe
In context ↗ - psilocybin (shrooms) · Not said
i only took half of a gram but it was a full on trip with mild visuals
In context ↗ - antihistamines · Worse
i went on a bunch of antihistamines prescribed by my me cfs specialist to see if it made a difference and it didn’t. it actually made me worse
In context ↗ - Combined birth control (pill, patch or ring) · Not said
i’d tried a combo pill years ago before getting sick and it had some unpleasant side effects
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | gradual onset of exhaustion, then PEM; mild for a few monthsthere was no known trigger for mine i just started feeling really exhausted and slowly it progressed to the point where i would get PEMIn context ↗ | Mild | |
| 2025-04-30 | crashed from attending class to bedriddenWent from going to class semi-regularly to now being bedridden.In context ↗ | Severe | |
| 6-8 month mark | lowest point, between moderate and severeat the 6-8 month mark i was at my worst in between moderate and severeIn context ↗ | Severe | |
| 2025-05-28 | ubiquinol lifted a bad crash enough to go downstairs and eatI took 200 mg of ubiquinol and then i was able to go downstairs, have meal and talk to my family and watch TV!In context ↗ | Moderate | CoQ10 / ubiquinol |
| 2025-11-22 | moderate after resting and starting LDNafter much resting and starting ldn i am now moderate!In context ↗ | Moderate | Low-dose naltrexone |
| 2026-03-25 | went from moderate to severe on the desogestrel mini pillI was able to watch TV in a well lit room and talk with my family all day and now I have been in bed in the dark for 2 monthsIn context ↗ | Severe | |
| 2026-04-21 | PMS crash after stopping the pill, almost completely bedriddenI have not yet recovered my baseline and am almost completely bedridden nowIn context ↗ | Severe | |
| 2026-06-07 | partially recovered after stopping the pilli’m partially recovered from that now at moderate/severeIn context ↗ | Moderate | |
| 2026-07-10 | around moderate/severe, closer to moderatei’ve crawled out of that horrible place and am somewhere around moderate/ severe (closer to moderate actually)In context ↗ | Moderate |
Adverse events
- Cannabis (THC, marijuana)“I do have to be careful though because if I smoke too much/too regularly it makes my cognitive symptoms like brain fog and visual snow/afterimages a lot worse.” In context ↗ Made symptoms worse
- Elimination diets (other)“at first i felt worse for a few days then i felt better.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I am sensitive to medications and have had crazy vivid dreams when i started and then again when I bumped up to 0.2mg.” In context ↗ Side effects
- Low-dose naltrexone“I had some mild side effects every time I went up a dose but it went away after 3-4 days. I just went up from 0.5mg to 0.75 mg and i had a pretty rough time” In context ↗ Side effects
- Low-dose naltrexone“I recently titrated up from 4.0mg to 4.5. Disaster. Terrible insomnia i’ve barely slept at all.” In context ↗ Insomnia from treatment
- Low-dose naltrexone“when i tried taking it in the evenings i got really horrible sleep” In context ↗ Insomnia from treatment
- Progestin-only birth control (mini pill, implant or shot)“Within a few months i went from moderate to severe. I was able to watch TV in a well lit room and talk with my family all day and now I have been in bed in the dark for 2 months.” In context ↗ Made symptoms worse
- Progestin-only birth control (mini pill, implant or shot)“every week i had a new side effect. constipation, a rash, acne on my back, joint pain, mood swings.” In context ↗ Side effects
- Progestin-only birth control (mini pill, implant or shot)“i went on the mini pill for this and it made me severe/very severe. it was like i was pms ing ALL THE TIME 0/10” In context ↗ Mood or psychiatric effects
- Trazodone (Desyrel)“especially since SSRIs have caused me issues in the past” In context ↗ Side effects
- Combined birth control (pill, patch or ring)“i’d tried a combo pill years ago before getting sick and it had some unpleasant side effects” In context ↗ Side effects
- H1 antihistamines (unspecified)“i went on a bunch of antihistamines prescribed by my me cfs specialist to see if it made a difference and it didn’t. it actually made me worse” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessPain & fibromyalgiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Post-exertional malaise
it progressed to the point where i would get PEM
In context ↗ - Brain fog
it makes my cognitive symptoms like brain fog and visual snow/afterimages a lot worse
In context ↗ - Sleep problems
I have noticed that THC helps with my insomnia sometimes
In context ↗ - Anxiety & low mood
i also have generalized anxiety disorder
In context ↗ - Vision problems
my cognitive symptoms like brain fog and visual snow/afterimages
In context ↗ - Mast cell (MCAS) & allergies
i developed so many food allergies when i got ME
In context ↗ - Gut problems
slowed digestion/constipation
In context ↗ - Light & noise sensitivity
increased light sensitivity
In context ↗ - Muscle weakness
could hardly lift my arms or hold up my phone
In context ↗
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