ME/CFS
Moderate → no benefitIll for 22 years
ME/CFS for 22 years, unable to work for three, now worse; supplements and diets no help
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 22 years
- Last post
- Apr 2026
In their words
- At worst: Moderate
I was milder and now going towards moderate with age which makes sense.
In context ↗ - Now: No benefit
After over a year of forcing myself to this discipline I have nothing to show for it.
In context ↗ - Began after: a bacterial or tick-borne infection
I was battling a UTI that wasn’t going after two rounds of antibiotics and after a couple of months in addition to the UTI symptoms; nausea, bloating and constant tiredness entered the picture to never leave
In context ↗ - Says they never had: Flu-like symptoms
I also don’t have all the flu like symptoms people refer to in PEM. This has never been part of my symptoms.
Read from 12 of their posts and comments; links to the 7 this page draws on
Summary
Marsh 23696 reported ME/CFS for 22 years, starting after a stubborn UTI with nausea, bloating and constant tiredness. They were mild for years, then cut work to a few hours weekly and worsened entering perimenopause, leaving them unable to work for three years. Supplements, diets, private tests, yoga and therapy brought no improvement, and they are now trying aggressive rest; they have worsened toward moderate illness with brain fog, dizziness, nausea and migraines.
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What they tried
Also tried
ssris· Helped · wore offtalk therapy· No changeNAC· No changeguanfacine· No changeantibiotics· No changeelimination diets· No changecountless supplements· No changeRegular moderate exercise (yoga 3/4 times a week)· No changevery clean and nutritive diet· No changepacing· Worseresting aggressively· Not said
Their words about each treatment
- ssris · Helped
I’ve tried ssris ans whilst they help they also give me side effects that are off-putting.
In context ↗ - talk therapy · No change
also looked after my mind with talk therapy ... After over a year of forcing myself to this discipline I have nothing to show for it.
In context ↗ - pacing · Worse
for the past 4 years I’ve only worked a few hours per week and feel I’ve settled my body into a lower baseline
In context ↗ - NAC · No change
I have tried NAC. Did squat for me!
In context ↗ - guanfacine · No change
Even tried with guanfacine. Nada…
In context ↗ - antibiotics · No change
I was battling a UTI that wasn’t going after two rounds of antibiotics
In context ↗ - elimination diets · No change
Tried countless supplements, elimination diets, méthodes, medical tests in private clinics… no joy.
In context ↗ - countless supplements · No change
Tried countless supplements
In context ↗ - Regular moderate exercise (yoga 3/4 times a week) · No change
Regular moderate exercise (yoga 3/4 times a week)
In context ↗ - very clean and nutritive diet · No change
very clean and nutritive diet
In context ↗ - resting aggressively · Not said
Now trying resting aggressively…
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2004 | ME/CFS began after a stubborn UTII was battling a UTI that wasn’t going after two rounds of antibiotics and after a couple of months in addition to the UTI symptoms; nausea, bloating and constant tiredness entered the picture to never leaveIn context ↗ | Mild |
| 2019 | lower baseline after cutting work to a few hours a weekBut for the past 4 years I’ve only worked a few hours per week and feel I’ve settled my body into a lower baseline rather than feeling better for it.In context ↗ | Moderate |
| 2023 | worsened significantly entering perimenopause; stopped workI got significantly worse as I entered perimenopause. ... it’s been 3 years nowIn context ↗ | Moderate |
| 2026-04-24 | no improvement from self-care; still unable to workAfter over a year of forcing myself to this discipline I have nothing to show for it. ... it’s been 3 years nowIn context ↗ | Moderate |
Adverse events
- Antidepressants (unspecified)“I’ve tried ssris ans whilst they help they also give me side effects that are off-putting.” In context ↗ Side effects
- Antidepressants (unspecified)“Ssri didn’t make my ME worse by the way, but I found the side effects to be too much to bear especially that after a while ssris stop working but you still have the side effects.” In context ↗ Side effects
Symptoms mentioned
Brain fogGut problemsHeadaches & migraineMuscle weaknessPOTS & dysautonomiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I think exerting does make me worse ... it takes me a lot longer than a healthy person to recover.
In context ↗ - Brain fog
significant brain fog
In context ↗ - POTS & dysautonomia
orthostatic hypotension
In context ↗ - Sleep problems
unrefreshing sleep
In context ↗ - Gut problems
GI issues (SIBO)
In context ↗ - Muscle weakness
I’m so weak I feel an overwhelming need to lie down.
In context ↗