ME/CFS
Severe → somewhat better
Severe ME/CFS, housebound with PEM from 20 minutes talking, somewhat better
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- May 2026
In their words
- Condition: ME/CFS
Within two last years I have improved from severe mecfs
In context ↗ - At worst: Severe
severe ME/CFS where just 20 min of talking in person may remove 2-3 days from life
In context ↗ - Now: Somewhat better
overall without a burden I am close to moderate sometimes even moderate / mild
In context ↗
Read from 8 of their posts and comments; links to the 6 this page draws on
Summary
Beacon 71254 reported severe ME/CFS, housebound at worst with PEM from 20 minutes of talking and unable to rest because of tardive akathisia. Strict pacing for a few months worsened PEM tolerance. Over two years they improved from severe to close to moderate or mild, but insomnia and activity intolerance remained; they were extremely drug sensitive. Psychiatric drugs left PSSD, tardive akathisia and tardive dyskinesia.
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What they tried
Also tried
Their words about each treatment
- antipsychotic · Much worse
Personally I got Tardive akathisia + tardive dyskinesia 1,5 year after withdrawal. That was 9 years ago and symptoms still persist.
In context ↗ - SNRI drug · Not said
It is possible that this is also hidden toxicity, particularly of SNRI drug which was made apparent / symptomatic by ME/CFS.
In context ↗ - strict pacing · Worse
by following very strict pacing approach for a few months ... the activities which caused me tolerable 1 day PEM then, now on these same intensity cause severe intolerable a few day PEM
In context ↗ - Agmatine · Helped
I take 30mg acutely. It has some positive effect, but I wouldn't call it any cure.
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. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| many years ago | Stress intolerance and shock states began after a certain momentAfter certain moment in my life many years ago I can't tolerate many kinds of intense stressIn context ↗ | Not stated |
| 2024-07-27 | Severe ME/CFS, housebound, with post-exertional symptoms and akathisiasevere ME/CFS where just 20 min of talking in person may remove 2-3 days from life.In context ↗ | Severe |
| 2024-12-27 | Strict pacing for a few months worsened PEM tolerancenow on these same intensity cause severe intolerable a few day PEMIn context ↗ | Severe |
| 2025-08-10 | Improved from severe ME/CFS; still limited by insomnia and activity intoleranceWithin two last years I have improved from severe mecfs ... overall without a burden I am close to moderate sometimes even moderate / mildIn context ↗ | Mild |
| 2026-05-31 | Still extremely drug sensitive; agmatine 30 mg acutely had some positive effectI take 30mg acutely. It has some positive effect, but I wouldn't call it any cure.In context ↗ | Mild |
Adverse events
- Antipsychotics (unspecified)“Personally I got Tardive akathisia + tardive dyskinesia 1,5 year after withdrawal. That was 9 years ago and symptoms still persist.” In context ↗ Side effects
- “I have confirmed neurological damage due using them. That damage was not apparent long after withdrawal - asymptomatic and resurfaced suddenly years after withdrawal.” In context ↗ Side effects
- “Beside ME/CFS I have PSSD, TA, TD.” In context ↗ Side effects
- “Not sure that damage from psych drugs made ME / CFS emergent, but for sure it made it severe and disability” In context ↗ Made symptoms worse
- Pacing and the energy envelope“after experiencing what happened by following very strict pacing approach for a few months ... the activities which caused me tolerable 1 day PEM then, now on these same intensity cause severe intolerable a few day PEM” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogGut problemsLight & noise sensitivityPost-exertional malaiseSleep problemsTemperature regulationTinnitus
Their words about their symptoms
- Post-exertional malaise
just 20 min of talking in person may remove 2-3 days from life
In context ↗ - Brain fog
immediate serious cognitive issues, blank mind
In context ↗ - Sleep problems
For now I am burdened by insomnia which makes mecfs periodically worse
In context ↗ - Gut problems
I had intense bowel pain due flatulence
In context ↗ - Light & noise sensitivity
very loud sound or even some smells
In context ↗ - Tinnitus
enormous tinnitus
In context ↗ - Temperature regulation
my skin turn swollen and is hot like in fever
In context ↗