Mostly in bed or house with ME/CFS, somewhat better after oxaloacetate
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 22 months
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
Since getting Covid at the end of 2024 I have had ME/CFS.
In context ↗ - At worst: Severe
considering I never leave my house/bed/couch
In context ↗ - Now: Somewhat better
Obviously I'm not cured, and I can't stop PEM occurring, but I no longer just have to accept that PEM will happen for as long as it desires.
In context ↗ - Began after: COVID
Since getting Covid at the end of 2024 I have had ME/CFS.
In context ↗ - Says they never had: Brain fog
I don't have brain fog or memory loss or concentration problems
- Says they never had: Light & noise sensitivity
I have no light/sound sensitivities
Read from 24 of their posts and comments; links to the 12 this page draws on
Summary
They date their ME/CFS to a COVID infection at the end of 2024; by early 2026 they were mostly in bed, couch or house with daily calf pain, nausea, POTS and PEM. Oxaloacetate at 1,000 mg daily could cut a crash short if taken early with a nap, though it grew less effective over time, and an unnamed treatment gave them a few livelier days. They remained ill, managing an unspecified issue with diet and betaine.
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What they tried
What they credit
Also tried
Their words about each treatment
- LDN · Helped
a prescription for beta blockers, mestinon and LDN (keeps my HR in check and lessens my pain)
In context ↗ - Carvedilol · Helped
I take the former and its stopped my nightly flushes. Without it I get them every night when I lie down to sleep without fail.
In context ↗ - Oxaloacetate · Helped
in the beginning I found that it relieved PEM if I took it at the start of a crash. But its less effective as time goes on. I still shell out for it though so...
In context ↗ - dextromethorphan (DXM) · Helped
today is the first day that I have felt more 'alive'. Have the energy to listen to music and do things that I don't strictly need to do. Feel so much less like dying.
In context ↗ - mini pill · Not said
ive taken about 7 days worth of pills so far and have noticed im maybe a tiny bit fatter? but aside from that nothing
In context ↗ - betaine supplements · Helped
I control this via a) not eating raw fruit and veggies and b) taking betaine supplements daily
In context ↗ - anti-histamine eye drops · No change
I tried a lot of different anti-histamine eye drops which didn't do anything
In context ↗ - Ikervis · Not said
I even tried Ikervis (very expensive medical eye drops)
In context ↗ - eye drops for hydration (preservative free) · No change
I have tried so many eye drops for hydration (preservative free).
In context ↗ - cortisone eye drops · Helped
The only thing that works temporarily is cortisone eye drops or salve, but of course as soon as it wears off the redness is back
In context ↗ - heat patches, cold patches · No change
I have tried heat patches, cold patches.
In context ↗ - tea tree wipes · No change
I have tried tea tree wipes.
In context ↗ - moisture wipes · No change
I have tried cleaning my eyes a lot with special moisture wipes. Nothing.
In context ↗ - stretches found on Youtube · Helped
I can find some in the moment relief from stretches I found on Youtube
In context ↗ - heated blanket · Helped
I have a heated blanket that I lie on! It's nice for sure.
In context ↗ - Other surgery (adrenal, lung, venoplasty) · Worse
it was very hard on my body and I had a lot of help ... I was lethargic, fatigued and felt 'off' for about a month
Approaches: Other drugs and medicines · Supplements
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| end of 2024 | COVID infection followed by ME/CFSSince getting Covid at the end of 2024 I have had ME/CFS.In context ↗ | |
| 2026-01-06 | Oxaloacetate could stop PEM if taken earlyWhen I feel PEM coming on, it has the ability to make the feeling go away if I immediately pop a couple of tablets and take a napIn context ↗ | Oxaloacetate |
| 2026-03-18 | felt more alive and had energy for music on dextromethorphantoday is the first day that I have felt more 'alive'. Have the energy to listen to music and do things that I don't strictly need to doIn context ↗ | |
| 2026-05-24 | Oxaloacetate became less effective over timeBut its less effective as time goes on.In context ↗ | |
| 2026-10-21 | still ill, managing gut symptoms with diet and betaineI control this via a) not eating raw fruit and veggies and b) taking betaine supplements dailyIn context ↗ |
Adverse events
- Other surgery (adrenal, lung, venoplasty)“it was very hard on my body and I had a lot of help ... I was lethargic, fatigued and felt 'off' for about a month” Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
if I overdo things I experience fatigue (different to being tired/low energy) which I recognise as PEM
In context ↗ - Sleep problems
Sometimes I lie awake and can't sleep but it's not that often
In context ↗ - Pain & fibromyalgia
I have daily muscle pain in my calves
In context ↗ - Headaches & migraine
I have had a headache upon waking for a few days and today was first day I woke up without it for a while
In context ↗ - Gut problems
I'm often nauseous, I often feel full despite not eating much or have a low appetite
In context ↗ - Flu-like symptoms
I have the 'poisoned/hungover' feeling occasionally
In context ↗ - Neuropathy & tingling
I have muscle twitches
In context ↗
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