ME/CFS
Very severe → much betterIll 3.5 years before improving or writing
Extremely severe ME/CFS for five months, now much better after low-dose Abilify
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 3.5 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
maybe even since before I got ME/CFS in late 2021
In context ↗ - At worst: Very severe
Extremely severe (could barely move or speak, could not tolerate light or noise)
In context ↗ - Now: Much better
still working from home, active socially, able to leave home sometimes
In context ↗ - Began after: glandular fever or EBV
the most likely candidate is an EBV infection in late 2021
Read from 102 of their posts and comments; links to the 26 this page draws on
Summary
Mild ME/CFS from late 2021; in February 2025 they crashed to extremely severe for five months, unable to speak or tolerate light or noise. Low-dose Abilify, dextromethorphan, a COVID infection, nicotinamide riboside and oxaloacetate from August 2025 brought steady improvement back to near-normal. A sore throat in January 2026 brought PEM back; stress, caffeine and a friendship breakup caused further crashes.
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What they tried
What they credit
Also tried
Weekly strength training· HelpedAspirin· HelpedHerbal sleep medicine (passion flower, California poppy, lavender, hops)· HelpedHerbal sleep medicine (passion flower, California poppy, lavender, hops)· HelpedHerbal sleep medicine (passion flower, California poppy, lavender, hops)· HelpedHerbal sleep medicine (passion flower, California poppy, lavender, hops)· HelpedTrintellix· HelpedVitamin B12· No changeTelfast· No changeZinc· No changeLexapro· No changeLow-dose naltrexone (LDN)· WorseMagnesium glycinate· WorseIvabradine· WorseCoQ10· Not saidCreatine· Not saidLion's mane· Not saidAcetyl L-carnitine· Not saidNattokinase· Not saidLongvida curcumin· Not saidProbiotic· Not saidTherapy· Not saidPacing· Not said
Their words about each treatment
- Weekly strength training · Helped
I think that weekly strength training may have helped a bit with my CFS
In context ↗ - Low-dose Abilify (LDA) · Helped
For me it gave me a small but significant cognitive boost
In context ↗ - Dextromethorphan (DXM) · Helped a lot
I haven’t gotten PEM at all since starting it. I take 15mg 4x a day
In context ↗ - Tru Niagen (nicotinamide riboside) · Helped a lot
I found that it started helping almost immediately with all symptoms and I believe it’s been driving the improvement
In context ↗ - Oxaloacetate · Helped
perhaps accelerated after starting oxaloacetate a few days ago
In context ↗ - Nicotine patches · Helped
Nicotine patches (7mg)
In context ↗ - Red krill oil · Helped
Red krill oil (1000mg)
In context ↗ - Valium · Helped
Valium (2.5mg one per week as needed)
In context ↗ - Aspirin · Helped
Aspirin (for PEM feverishness, haven’t needed recently)
In context ↗ - Electrolytes · Helped
Electrolytes (Hydralyte Sports 1 scoop)
In context ↗ - Herbal sleep medicine (passion flower, California poppy, lavender, hops) · Helped
I actually took a herbal sleep medicine to be able to sleep. It contained passion flower, California poppy, lavender, and hops flower
In context ↗ - Low-dose naltrexone (LDN) · Worse
LDN made me worse but LDA has been helpful
In context ↗ - Magnesium glycinate · Worse
Magnesium glycinate (made my body feel hot)
In context ↗ - Vitamin B12 · No change
Vitamin B12 (was taking shortly before the initial big crash)
In context ↗ - Telfast · No change
Telfast (no effect)
In context ↗ - Zinc · No change
Zinc (no effect)
In context ↗ - Lion's mane · Not said
Lion’s mane (600mg)
In context ↗ - Acetyl L-carnitine · Not said
Acetyl L-carnitine (1000mg)
In context ↗ - Nattokinase · Not said
I’m currently trialling nattokinase, lion’s mane and ALCAR
In context ↗ - Longvida curcumin · Not said
Longvida curcumin (500mg)
In context ↗ - Probiotic · Not said
Probiotic (64B CFU)
In context ↗ - Thiamine nitrate (B1) · Helped
The only one which was initially a “maybe” that I tried going off and went back on due to experiencing worsening was B1.
In context ↗ - Magnesium malate · Helped
I find it gives me almost the same boost to my capacity
In context ↗ - NAC · Helped
NAC (new to me) halted the decline and actually continues to mitigate all of my flu-like symptoms from PEM
In context ↗ - Ivabradine · Worse
Ivabradine (2.5mg BID) treated my IST effectively but made me lethargic so I stopped
In context ↗ - Lexapro · No change
Lexapro didn’t do anything for me
In context ↗ - Trintellix · Helped
Trintellix has been great
In context ↗ - Therapy · Not said
I’ve restarted my antidepressants and started therapy
In context ↗ - Pacing · Not said
pacing is extremely important
In context ↗
Approaches: POTS medication · Benzodiazepines · Other drugs and medicines · Supplements
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 |
|---|---|---|---|
| late 2021 | ME/CFS began; mild for three yearsI was mild for 3 years, crashed to extremely severe in Feb 2025In context ↗ | Mild | |
| February 2025 | crashed to extremely severe after a series of bad crashesI became extremely severe from mild after a series of bad crashes early this yearIn context ↗ | Very severe | |
| 20 August 2025 | sudden improvement from extremely severe to severeI suddenly regained the ability to use my phone continuously, move around freely in bed, eat solid food and upright tooIn context ↗ | Severe | Low-dose Abilify / aripiprazole |
| 28 August 2025 | progressing into moderate; games all day, walked with a stickI seem to be progressing steadily into moderateIn context ↗ | Moderate | Oxaloacetate |
| 16 September 2025 | low end of mild; three days out in a rowI believe I am now on the low end of mild. ... I left the house three days in a row to go to doctors’ appointments and was totally fine.In context ↗ | Mild | NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP) |
| 14 October 2025 | back to full-time PhD work, no PEM in weeksI’m back to full time remote work on my PhDIn context ↗ | Mild | |
| 17 December 2025 | very mild, better than before the crash; daily walksI’m now very mild (?), significantly better than I was even before the big Feb crash.In context ↗ | Near normal | |
| early January 2026 | sore throat then PEM returnedAfter that, PEM started slowly coming back, sadly.In context ↗ | Mild | |
| February 2026 | stress and caffeine overuse led to rolling PEMwhich led to rolling PEMIn context ↗ | Mild | |
| March 2026 | NAC halted the declineUnexpectedly, NAC (new to me) halted the declineIn context ↗ | Mild | NAC (N-acetylcysteine) |
| March 2026 | crashed after a week of lost sleep over a friendship breakupleading to a bad crash that I’m recovering from currentlyIn context ↗ | Mild | |
| 13 May 2026 | working full time from home, pacing poorlyI’m doing quite alright, though pacing pretty poorly which I’m working onIn context ↗ | Mild |
Adverse events
- Low-dose naltrexone“It made me worse too. Thank you for sharing, I never saw any negative reports of LDN when I was starting out, could have saved me a lot of suffering the second time around” In context ↗ Made symptoms worse
- Low-dose naltrexone“I started on 0.5mg, went up to 1mg after a week and immediately crashed. Went back down to 0.5mg, then stayed there for a couple months before trying to go up to 1mg again. Immediately crashed again.” In context ↗ Made symptoms worse
- Low-dose naltrexone“1mg caused my baseline to drop and not recover while I was severe” In context ↗ Made symptoms worse
- Magnesium“Magnesium glycinate (made my body feel hot)” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“I had some side effects at first, mainly flashes in my vision and restlessness. But it’s all cleared up now” In context ↗ Side effects
- Ivabradine“I tried ivabradine for a while to lower my heart rate but it made me lethargic so I decided to stop” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
PEM came back in early Jan, went through severe stress
In context ↗ - Brain fog
‘Brain fog’ - difficulty thinking, remembering, processing info
In context ↗ - Sleep problems
Poor sleep at night (v. frequent awakening), can’t sleep during day
In context ↗ - Heart symptoms & palpitations
My heart rate is still higher than it should be, but it doesn’t cause me any ill effects.
In context ↗ - Flu-like symptoms
continues to mitigate all of my flu-like symptoms from PEM
In context ↗ - Breathlessness
Rarely - mild air hunger
In context ↗ - Muscle weakness
Full body exhaustion and weakness
In context ↗ - Light & noise sensitivity
couldn’t tolerate light or noise or seeing movement
In context ↗ - Anxiety & low mood
I’ve been struggling a lot with the psychological aftermath of my time spent being extremely severe.
In context ↗ - Headaches & migraine
I also tend to get warning signs that PEM is going to happen like headaches
In context ↗ - Temperature regulation
minor bouts of overheat/sweating
In context ↗
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