ME/CFS
Mild → no benefitIll for 52 years
Daily flu-like illness and brain fog with ME/CFS, no improvement
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- 52 years
- Last post
- May 2026
In their words
- Condition: ME/CFS
50 glorious years ME/CFS
In context ↗ - At worst: Mild
I've had (basically) a : mild to severe case of the flu every day
In context ↗ - Now: No benefit
I've been at this for over 50 years, and it's still tough for me to manage.
In context ↗ - Began after: glandular fever or EBV
my illness (like many) followed a severe virus - mono in my case
In context ↗
Read from 11 of their posts and comments; links to the 8 this page draws on
Summary
Moon 84713 has had ME/CFS since November 1973, when it followed a severe case of mono. They described daily flu-like illness, headaches and brain fog, plus anxiety that an antidepressant helped make easier to deal with by stabilising their autonomic nervous system. They described managing with a routine of early rising, walking, stretching, breathing exercises and weight control, which usually helped but sometimes ended in a collapse.
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What they tried
Also tried
walking/stretching/breathing exercises· Helpedstrict daily routine (fixed wake time, minimal naps, staying on feet)· Helpeddiet and weight control· Helpedearly morning sun· HelpedBANG energy drink· HelpedHOT shower - COLD shower - HOT, then COLD· Helpedantidepressant· HelpedGabapentin· Helped · wore off
Their words about each treatment
- walking/stretching/breathing exercises · Helped
I've made a commitment to walking/stretching/ breathing exercises before every shower ... usually it helps me, sometimes a lot
In context ↗ - strict daily routine (fixed wake time, minimal naps, staying on feet) · Helped
The best I EVER feel is when I do this : GET UP IMMEDIATELY when I wake up
In context ↗ - diet and weight control · Helped
IF - I keep my weight down - eat perfect - exercise.... I'll still feel really bad.
In context ↗ - early morning sun · Helped
Getting that early morning sun really helps (everybody) feel better.
In context ↗ - BANG energy drink · Helped
BANG is the only thing that works for me - 300 mg of caffeine ha (too much for many).
In context ↗ - HOT shower - COLD shower - HOT, then COLD · Helped
HOT shower - COLD shower - HOT, then COLD. This will wake you up every time.
In context ↗ - antidepressant · Helped
an antidepressant kinda stabilizes my ANS
In context ↗ - Gabapentin · Helped
Gabapentin made me feel better briefly (all excited ha) - then nothing.
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. The chart starts 51.2 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|
| November 1973 | ME/CFS began after mono, aged 13my illness (like many) followed a severe virus - mono in my caseIn context ↗ | Not stated |
| 2025-01-18 | collapsed with migraine and brain fog after a walk around the blockAll I can do after a walk around the block is come home and COLLAPSE.....massive migraine/ brain fog.In context ↗ | Moderate |
| 2026-05-24 | still managing daily, sleeps propped up on about five pillowsAbout 5 pillows... I notice I sleep better sitting up than lying down too.In context ↗ | Mild |
Adverse events
- Everyday exercise and activity“occasionally it backfires, even if I don't overdo it. All I can do after a walk around the block is come home and COLLAPSE.....massive migraine/ brain fog.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsHeadaches & migrainePost-exertional malaiseSleep problems
Their words about their symptoms
- Brain fog
The horrible headaches and brain fog, where I become a total moron
In context ↗ - Headaches & migraine
felt really bad with massive headache/brain fog
In context ↗ - Post-exertional malaise
All I can do after a walk around the block is come home and COLLAPSE
In context ↗ - Flu-like symptoms
a : mild to severe case of the flu every day
In context ↗ - Anxiety & low mood
mild stress situations make me extremely nervous/anxious
In context ↗ - Sleep problems
I notice I sleep better sitting up than lying down too.
In context ↗