ME/CFS
Moderate → no benefitIll for 2 years
ME/CFS with fatigue and brain fog, deteriorated, IV infusions brought no improvement
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 2 years
- Last post
- Aug 2025
In their words
- Condition: ME/CFS
📌 My CFS/EBV Story – sudden muscle loss & lack of circulation
In context ↗ - At worst: Moderate
I was never bedridden, and I kept working about 2–4 hours a day (I’m self-employed), but only by pushing through.
In context ↗ - Now: No benefit
Since early 2025: These recovery phases have completely stopped, and my condition has been steadily deteriorating.
In context ↗ - Says they never had: Flu-like symptoms
I never had swollen lymph nodes or flu-like symptoms
Summary
Steffen of Bremen, Germany, fell ill in summer 2023 with sudden severe fatigue, brain fog, headaches, fast heart rate and rapid muscle loss; energy fell to 10–20% of normal, though they were never bedridden and kept working a few hours a day. Symptoms vanished for several weeks at a time on several occasions until January 2025, then the remissions stopped and they deteriorated steadily. IV infusions, peptides and supplements brought no significant improvement.
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What they tried
Also tried
NAD⁺· No changeNAC, Glutathione· No changeNAC, Glutathione· No changeVitamin C· No changecarnitine, Lysine· No changecarnitine, Lysine· No changeThymosin Alpha 1 + two other immunomodulatory peptides· No changea comprehensive supplement plan from a private CFS specialist· No change
Their words about each treatment
- NAD⁺ · No change
I've tried various treatments (infusions with glutathione, NAD⁺, vitamin C, carnitine, etc.), but nothing has helped so far.
In context ↗ - NAC, Glutathione · No change
IV infusions: NAC, NAD⁺, Glutathione, Lysine, Vitamin C ... Unfortunately, no significant improvement so far.
In context ↗ - Vitamin C · No change
infusions with glutathione, NAD⁺, vitamin C, carnitine, etc.), but nothing has helped so far.
In context ↗ - carnitine, Lysine · No change
infusions with glutathione, NAD⁺, vitamin C, carnitine ... Lysine ... Unfortunately, no significant improvement so far.
- Thymosin Alpha 1 + two other immunomodulatory peptides · No change
Peptides: Thymosin Alpha 1 + two other immunomodulatory peptides ... Unfortunately, no significant improvement so far.
In context ↗ - a comprehensive supplement plan from a private CFS specialist · No change
A comprehensive supplement plan from a private CFS specialist ... Unfortunately, no significant improvement so far.
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| summer 2023 | sudden severe fatigue, muscle loss and poor circulationThen, out of nowhere in summer 2023, severe fatigue hit me.In context ↗ | Moderate |
| between summer 2023 and January 2025 | 5 or 6 remissions of several weeks, almost back to full capacitymy symptoms would suddenly and completely vanish for several weeks at a time – maybe 5 or 6 times totalIn context ↗ | Near normal |
| January 2025 | remissions stopped; stuck in low-energy, low-blood-flow stateSince January 2025, that pattern has stopped. I’ve been stuck in the low-energy, low-blood-flow state without any improvement since then.In context ↗ | Moderate |
| 2025-08-27 | steadily deteriorating, about 20% of normal energySince early 2025: These recovery phases have completely stopped, and my condition has been steadily deteriorating.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
where training actually made things worse
In context ↗ - Brain fog
severe brain fog
In context ↗ - Headaches & migraine
I developed headaches and felt completely disconnected from my body
In context ↗ - Heart symptoms & palpitations
rapid heart rate with even light activity
In context ↗ - Muscle weakness
my muscles stayed flat and unresponsive
In context ↗