ME/CFS
Severe → no benefitIll for 4 years
Severe ME/CFS after COVID, still unrefreshed and no improvement overall
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 4 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
Covid made me severe, which is a pretty well-documented pattern.
In context ↗ - At worst: Severe
Covid took me from mild to severe.
In context ↗ - Now: No benefit
Now a good day is one where I'm able to cook a meal.
In context ↗
Read from 20 of their posts and comments; links to the 17 this page draws on
Summary
A man in tech who had been diagnosed with ME/CFS while still working, then became severe after COVID and has had several crashes of two months or more, including one of six months, in the past four years. Testosterone, started after clinically low levels, let him gain muscle while mostly housebound; a weight-loss drug produced 80 lb weight loss and small-dose guanfacine eased sympathetic overreactions. He still wakes unrefreshed, walks three to five times a week, and counts cooking a meal as a good day.
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What they tried
Also tried
TRT· HelpedGuanfascine· HelpedIV ketamine· HelpedEmsam· HelpedLLLT and NovaaLab handheld laser· Helpedrest and taking things slowly· Helpedmelatonin· HelpedQuercetin· HelpedAtivan· HelpedGarmin watch· HelpedTooth extraction (two infected teeth)· No changeZepbound (tirzepatide)· No changestims· Worseozone treatments· Not saidoxycodone· Not saidProThrivers Wellness Sleep· Not saidIsopure protein powder· Not saidrecumbent bike· Not saidCOVID vaccines· Not said
Their words about each treatment
- Tooth extraction (two infected teeth) · No change
Found two lingering infections and ripped out a couple teeth. My eosinophil levels cleared up. But nothing got better.
In context ↗ - stims · Worse
the stims just turned into a grotesque misadventure of forcing myself to work for 4 hours then crashing for 4 days
In context ↗ - Zepbound (tirzepatide) · No change
I lost about 80lbs over about 18 months, gradually ramping up to the full 15mg. ... No specific effects on energy levels, though.
In context ↗ - TRT · Helped
One kicker that seems to have helped dramatically in my case: TRT. I'm male and my T levels were clinically low. After starting T, I actually gained muscle while mostly housebound and barely active.
In context ↗ - Guanfascine · Helped
Guanfascine at anything resembling a therapeutic dose destroys me...but 0.25mg (quarter pill) is a big win in sympathetic overreactions without triggering the bp / hr problems.
In context ↗ - IV ketamine · Helped
The stuff has been absolutely essential in surviving / making peace with / finding a path through this condition for me.
In context ↗ - Emsam · Helped
Emsam worked decently well too, if you can find a psychiatrist who's competent with MAOIs.
In context ↗ - ozone treatments · Not said
I had prf, lllt, and ozone treatments during the extraction
In context ↗ - LLLT and NovaaLab handheld laser · Helped
I bought a NovaaLab handheld laser to help with healing, which I believe helped. Still use it for muscle/connective tissue pain elsewhere.
In context ↗ - oxycodone · Not said
I needed oxycodone for almost a month (slow healing)
In context ↗ - rest and taking things slowly · Helped
I've bounced back from several 2+ month crashes and one 6 month crash in the past 4 years. ... The key is to take things insanely slowly.
In context ↗ - melatonin · Helped
One of my doctors pushed me to try 20mg, which is an absurd dose...more meant as an antioxidant than a sleep aid. But I can't deny that it helps.
In context ↗ - ProThrivers Wellness Sleep · Not said
Two caps of this (dr suggested)
In context ↗ - Quercetin · Helped
does a lot to help control my MCAS rashes
In context ↗ - Isopure protein powder · Not said
I use Isopure, which my dr recommended
In context ↗ - Ativan · Helped
Ativan, earbuds, wrap-around sunglasses, avoiding popular hours, and a general "enter my personal space and I will eat your children" vibe helps.
In context ↗ - Garmin watch · Helped
I mostly watch the HR and stress tracker (HRV) to tell me when I need to do something to calm down. They're useful, but far from perfect.
In context ↗ - recumbent bike · Not said
I'm trying to do with I can with a recumbent bike at home, staying under 100bpm, with mixed luck.
In context ↗ - COVID vaccines · Not said
The vaccines give me a couple of mildly bad days.
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 |
|---|---|---|---|
| year or so before COVID | diagnosed with ME/CFS at Stanford, still working in tech using stimulantsI was formally diagnosed at stanford year or so earlier but nodded along with my other doctors, believing that it was all psychiatric.In context ↗ | Mild | |
| — | COVID; never got out of bedThen I got covid and never got out of bed.In context ↗ | Severe | |
| — | crashed for two months after two infected teeth were extractedI needed oxycodone for almost a month (slow healing) and was fully crashed out for about two months.In context ↗ | Severe | |
| — | bounced back from several long crashes; gained muscle after starting testosteroneAfter starting T, I actually gained muscle while mostly housebound and barely active.In context ↗ | Moderate | Testosterone |
| 2026 | mostly housebound; walks three to five times a week; a good day is cooking a mealNow a good day is one where I'm able to cook a meal.In context ↗ | Moderate |
Adverse events
- Guanfacine“Guanfascine at anything resembling a therapeutic dose destroys me...but 0.25mg (quarter pill) is a big win in sympathetic overreactions without triggering the bp / hr problems.” In context ↗ Made symptoms worse
- Ketamine“Easy or difficult, it's very common for me to have a mild crash the next day.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“The vaccines give me a couple of mildly bad days.” In context ↗ Side effects
- “Of course, it cost $3k and a two month crash to get it...so YMMV.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodLight & noise sensitivityPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
the stims just turned into a grotesque misadventure of forcing myself to work for 4 hours then crashing for 4 days
In context ↗ - Sleep problems
I still wake up feeling like I've spent the night crawling through hell and need to rest for hours before I can start my day
In context ↗ - Pain & fibromyalgia
Still use it for muscle/connective tissue pain elsewhere.
In context ↗ - POTS & dysautonomia
0.25mg (quarter pill) is a big win in sympathetic overreactions without triggering the bp / hr problems
In context ↗ - Light & noise sensitivity
That's not too far from my sensory experience in places like that.
In context ↗ - Anxiety & low mood
working too hard, socially isolated, and with crappy mental health
In context ↗