ME/CFS for decades with PEM, brief recovery after brain retraining then relapse
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 20 years
- Last post
- Oct 2026
In their words
- At worst: Moderate
the mobility scooters are often the difference between leaving the house and staying housebound another day
In context ↗ - Now: Relapsed
Couldn’t seem to hold onto the health, though, and have fluctuated ever since: PEM is my worst symptom.
In context ↗ - Began after: nothing they could name
For me it predates COVID for about 20 years.
In context ↗
Read from 8 of their posts and comments; links to the 8 this page draws on
Summary
She described ME/CFS going back decades with PEM her worst symptom; brain retraining at the Optimum Health Clinic gave a few months of recovery about twenty years ago, but she could not hold onto it and fluctuated since. COVID in March 2020 nearly killed her and she said her second Pfizer jab did lasting damage. Rapamycin wiped her out, and she still used mobility scooters, which were often the difference between leaving the house and staying housebound another day.
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What they tried
What they credit
Also tried
Their words about each treatment
- life without gluten (gluten-free diet) · Helped a lot
I used to feel detached, like a veil had come down between me and the world. ... Turns out I was celiac.
In context ↗ - oxygen treatment · Helped a lot
I have oxygen treatment twice a week at the local MS Centre and it helps A LOT.
In context ↗ - Optimum Health Clinic path of brain retraining · Helped a lot
I managed to recover for a few months (a couple of decades back) ... I followed the Optimum Health Clinic path of brain retraining, which was excellent for me at the time.
In context ↗ - Rapamycin · Worse
first time I had 2 hours of feeling fine ... it just made me super-sleepy
- mobility aids (smartcrutches, mobility scooters, electric bikes) · Helped
each and every mobility aid has changed my life for the better
In context ↗ - Oestrogen spray · Helped a lot
Oestrogen spray has made a huge difference. Like, massive.
In context ↗ - testosterone · Helped
testosterone has also been amazing for my peri brainfog and overall wellbeing
In context ↗
Approaches: Hyperbaric & oxygen · Brain retraining · Diet · Sex hormones
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. 3 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| about 20 years before 2020 | ME/CFS symptoms going back about two decades, before COVIDFor me it predates COVID for about 20 years.In context ↗ | Not stated | |
| a couple of decades back | recovered for a few months after brain retraining at the Optimum Health ClinicI managed to recover for a few months (a couple of decades back) by following many of the things you recommended.In context ↗ | Near normal | Brain retraining programs (DNRS, Gupta, ANS Rewire, Primal Trust) |
| — | lost the recovery and fluctuated ever sinceCouldn’t seem to hold onto the health, though, and have fluctuated ever sinceIn context ↗ | Not stated | |
| March 2020 | COVID-19, super-sick and nearly diedIn my case I was super-sick with COVID in March 2020 and nearly diedIn context ↗ | Severe | |
| — | second Pfizer COVID jab did lasting damage (PACVS)The second one was what did the damage. I can pinpoint it exactly.In context ↗ | Moderate | |
| — | oestrogen spray and testosterone eased perimenopausal joint and brainfog symptomsOestrogen spray has made a huge difference. Like, massive.In context ↗ | Not stated | Estrogen (estradiol) |
| September 2026 | Rapamycin gave two hours of feeling fine then wiped her out for weeksit just absolutely wiped me out and I just wanted to sleep and sleepIn context ↗ | Moderate | Rapamycin / sirolimus |
| 2026-10-05 | still limited; needs a mobility scooter and is often houseboundNot often well enough to use the bikes these days, but the mobility scooters are often the difference between leaving the house and staying housebound another day.In context ↗ | Moderate |
Adverse events
- Rapamycin / sirolimus“Then the next three times (you only take it once a week) I felt awful, and just needed to sleep.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
PEM is my worst symptom.
In context ↗ - Brain fog
My brain didn’t work.
In context ↗ - Pain & fibromyalgia
My joints would creak. They were stiff and painful and would seize up.
In context ↗ - Sleep problems
Plus I struggle to sleep anyway.
In context ↗ - Flu-like symptoms
I basically get flu symptoms and I. Just. Can’t. Stay. Awake.
In context ↗ - Temperature regulation
I used to get weird sweats.
In context ↗
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