ME/CFS for 20 years with severe weakness and crashes; supplements helped, then relapsed
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 20 years
- Last post
- Feb 2026
In their words
- Condition: ME/CFS
specialized in chronic fatigue syndrome
In context ↗ - At worst: Severe
I can lose the ability to control my hands, walk, stand up, or even turn over in bed.
In context ↗ - Now: Relapsed
for some time I gradually improved while I could maintain them ... My condition worsened again.
In context ↗
Summary
Ill since age 14, about 20 years, they described severe muscle weakness, crashes after effort, unrefreshing sleep and slow thinking. An immunologist found recurrent EBV, low interferon-alpha and raised leukocytes; valganciclovir and foscarnet helped somewhat before a severe relapse after stress. Supplements brought gradual improvement and part-time hairdressing, but financial limits stopped them and they worsened again. They remained unable to manage cognitive or physical loads.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- antidepressants · No change
I was also prescribed antidepressants starting at age 14, but none of them improved my physical or cognitive symptoms
In context ↗ - valganciclovir · Helped
I underwent antiviral therapy with valganciclovir and foscarnet, which helped somewhat but not fully.
In context ↗ - tyrosine · Helped
Five years ago I was advised to try supplements (tyrosine, carnitine, creatine, coenzyme Q10, vitamins Opti-Women), and for some time I gradually improved
In context ↗ - antihistamines · No change
Antihistamines were prescribed as well, but they didn’t improve my overall condition.
In context ↗ - reducing omega-6 in diet · Helped
reducing omega-6 significantly in my diet has helped me a little
In context ↗ - antiepileptics · No change
such as antiepileptics ... none of these resolved or significantly eased my condition
In context ↗ - mood stabilizers · No change
mood stabilizers ... none of these resolved or significantly eased my condition
In context ↗ - antispasmodics · No change
antispasmodics ... none of these resolved or significantly eased my condition
In context ↗ - adrenergic blockers · No change
adrenergic blockers ... none of these resolved or significantly eased my condition
In context ↗ - nootropics · No change
nootropics ... none of these resolved or significantly eased my condition
In context ↗ - different diets · No change
also tried different diets ... none of these resolved or significantly eased my condition
In context ↗
Approaches: Amino acids and carnitine · 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. The chart starts 12 years after onset: the story doesn’t say how ill they were before that. 1 step has no time and sits in story order between the steps around it. 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 |
|---|---|---|
| age 14 | persistent health problems beganI have been experiencing serious, persistent health problems since I was 14 for about 20 years now.In context ↗ | Not stated |
| eight years ago | severe period after a respiratory infection; immunologist work-up and antiviral therapyEight years ago, after a severe period that seemed to follow a respiratory infection, I saw one of the best immunologists in my city who specialized in chronic fatigue syndrome.In context ↗ | Severe |
| eight months later | severe relapse after a stressful periodAfter a stressful period, I relapsed severely eight months later.In context ↗ | Severe |
| five years ago | gradual improvement on supplements; worked as a hair stylist and completed an IT college program with honorsFive years ago I was advised to try supplements (tyrosine, carnitine, creatine, coenzyme Q10, vitamins Opti-Women), and for some time I gradually improved while I could maintain them.In context ↗ | Mild |
| — | could no longer afford supplements consistently and worsened againHowever, later financial difficulties and limited work opportunities made it impossible to continue supplements consistently. My condition worsened again.In context ↗ | Moderate |
| 2026-02-11 | still unable to manage cognitive or physical loads; quality of life decliningUnfortunately, I cannot take away my responsibility for maintaining my quality of life, which continues to decline.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Mental exertion triggers the same “crash” as physical exertion
In context ↗ - Muscle weakness
The main and most disabling issue is severe muscle weakness.
In context ↗ - Brain fog
I can often only focus on a single sentence at a time.
In context ↗ - Pain & fibromyalgia
wandering muscle pain and spontaneous spasms
In context ↗ - Sleep problems
I never feel rested after sleep, no matter how much I try different schedules or routines.
In context ↗ - Gut problems
ranging from skin rashes to gastrointestinal issues
In context ↗ - Vision problems
my vision becomes impossible to focus, everything blurs.
In context ↗ - POTS & dysautonomia
I experience tachycardia whenever I change positions, in any state.
In context ↗ - Heart symptoms & palpitations
It is especially noticeable when my heartbeats become stronger while I’m already fatigued.
In context ↗ - Anxiety & low mood
I am in a low mental state and searching for answers.
In context ↗
Ask Miruvor AI
Similar stories
-
Bedbound for months with ME/CFS, now somewhat better with creatine and MCAS supplements
Ill with ME/CFS, they were mild until a vaccination worsened their baseline, and pushing through Mestinon and guanfacine side effects left them bedbound for months and unable to listen, watch films or speak. Creatine, Tru Niagen, milk thistle and a…
-
Bedridden with long COVID, now somewhat better with pacing and supplements
After a COVID infection in January 2022 the user developed psychosis, hallucinations and sensory issues within days. At their worst they were constantly bedridden, with PEM from showering or walking around the house. Around two years in they reached a higher…
-
Housebound with long COVID, now much better on amino acids and mitochondrial supplements
A woman who fell ill with long COVID in January 2022, aged 32, was housebound and largely bedbound for over a year with brain fog, insomnia, pain and PEM. Low-dose mirtazapine was the only thing that reliably gave her 10-12 hours of sleep. From 2024 she…
-
Bedridden for months with ME/CFS, somewhat better after stellate ganglion block and NADH
A teacher fell ill with COVID-19 in 2020 and worsened to very severe after graded exercise therapy and steroids: months bedridden, fainting daily, seizures and severe cognitive/memory problems. A stellate ganglion block initially stopped the fainting and…