ME/CFS
Severe → relapsedNeeds ongoing treatment
Bedbound with ME/CFS, brain fog improved on oxaloacetate then relapsed
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I’m diagnosed and also have POTS and potentially MCAS.
In context ↗ - At worst: Severe
I’m on about my 8th month of basically being stuck in bed ... for the most part it’s just spending 99% of my time in bed
In context ↗ - Now: Relapsed
I’m moderate for 6 months of the year and then autumn and winter come around and I’m severe-very severe for 6 months.
In context ↗
Read from 68 of their posts and comments; links to the 31 this page draws on
Summary
A UK person with ME/CFS became bedbound after crashes in early 2025 and has since been mostly bedbound or housebound, fluctuating between moderate and severe. Oxaloacetate 500 mg daily from April 2025 greatly improved brain fog, with physical fatigue and PEM improving only about 10%, though it later stopped working. Pacing brought long stretches without PEM, but their baseline still swung between moderate summers and severe to very severe winters.
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What they tried
Also tried
acetyl-L-carnitine· Helped · wore offD-ribose· Helped · wore offcreatine· Helped · wore offnasal strips· HelpedVisible armband· No changemagnesium· No changeL-theanine· No changeomega 3· No changevitamin D· No changeB vitamins· No changeketotifen· No changepropranolol· WorseNAC· Worseantibiotics· Worsecocodamol (codeine)· WorseLDN· Worsemometasone furoate nasal spray· Worseanti-congestion medicine· Worseacupuncture mat· Worseincrease sodium and water intake, wear compression garments· Not saidincrease sodium and water intake, wear compression garments· Not saidubiquinol CoQ10· Not saidpromethazine· Not saidsaline nasal spray· Not saidsleep stories, breathing exercises, sleep hypnosis videos· Not said
Their words about each treatment
- propranolol · Worse
it gave me weird side effects the last couple of months so I stopped taking it
In context ↗ - aggressive pacing · Helped
Pacing and avoiding PEM is the only thing I’ve found that really makes any difference to my condition.
In context ↗ - Visible armband · No change
I spent money in the hope these things would make pacing way easier for me but they haven’t
In context ↗ - increase sodium and water intake, wear compression garments · Not said
They’ve just told me to do the usual (increase sodium and water intake, wear compression garments).
In context ↗ - oxaloacetate · Helped
I’ve had about a 25% improvement from it
In context ↗ - magnesium · No change
magnesium malate: supposedly the cheap version of oxaloacetate but I definitely didn’t get any improvement from taking it regularly
In context ↗ - L-theanine · No change
L-theanine for sleep: again, not sure it did much tbh
In context ↗ - NAC · Worse
NAC: just hurt my stomach too much so had to stop taking it
In context ↗ - acetyl-L-carnitine · Helped
acetyl-L-cartinine: initially felt like it gave me a bit of an energy boost but after a few weeks of taking that effect wore off
In context ↗ - D-ribose · Helped
D-ribose: exactly the same as acetyl-L-cartinine
In context ↗ - creatine · Helped
creatine: same as last two
In context ↗ - omega 3 · No change
Meant to help with brain fog amongst other things but didn’t really notice much
In context ↗ - vitamin D · No change
not magnesium, vit D nor B vitamins have done anything to move the needle
In context ↗ - B vitamins · No change
B vitamins: some people have success with them (especially B12) but I found no difference
In context ↗ - ubiquinol CoQ10 · Not said
the only ones I’m on now is ubiquinol CoQ10, magnesium threonate, and oxaloacetate
In context ↗ - antibiotics · Worse
The last time I had antibiotics I had a really rough time.
In context ↗ - cocodamol (codeine) · Worse
In my experience I’ve never had any great results on it. It makes me feel super weird
In context ↗ - ketotifen · No change
I take ketotifen but it doesn’t affect my sleep
In context ↗ - promethazine · Not said
the only antihistamine that I’ve tried that’s ever made me a bit drowsy is promethazine
In context ↗ - LDN · Worse
It was awful. It made me feel so exhausted and weird in the first few hours
In context ↗ - mometasone furoate nasal spray · Worse
realised it was making my ME worse (I guess I’m part of the cohort that don’t gel with steroids)
In context ↗ - saline nasal spray · Not said
I’m using saline spray practically every 20 minutes to try clear it
In context ↗ - anti-congestion medicine · Worse
as soon as I stop using it I get a rebound effect and I become even more congested than I was before
In context ↗ - nasal strips · Helped
I’ve tried those nasal strips yes - they give marginal benefit but some benefit I suppose
In context ↗ - acupuncture mat · Worse
I’m now on day 3 of using it and I’ve started to crash
In context ↗ - sleep stories, breathing exercises, sleep hypnosis videos · Not said
doing various sleep stories, breathing exercises, sleep hypnosis videos
In context ↗
Approaches: Pacing · 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. 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 | After |
|---|---|---|---|
| October 2024 | fell ill after food poisoning and a respiratory infection; still walking the dog, gaming, readingI was mild at first (able to take the dog out for a walk, enjoy films and TV, play video games, read)In context ↗ | Mild | |
| February/March 2025 | two bad crashes in six weeks left them bedboundIn the space of a month and a half I crashed badly twice and it made me bedbound and I’ve been mod-severe ever since.In context ↗ | Severe | |
| March/April 2025 | crash after two medical appointments a day apartTwo weeks ago I had two medical appointments a day apart ... I had a bad crash and have been basically not able to leave my bed since.In context ↗ | Severe | |
| April/May 2025 | brain fog lifted, cognitive function almost back to normalThe immediate effects were super subtle ... My brain fog got SO much better.In context ↗ | Severe | Oxaloacetate |
| 2025-08-29 | crashed again; oxaloacetate seemed to stop helpingliterally since then I’ve been in a crash and it’s done absolutely nothing to help me lolIn context ↗ | Severe | |
| 2025-10-16 | improved and stabilised around moderate, able to read and game in bedI’ve improved a bit, stabilised around moderate. Can’t really leave the house, but am able to do more in the house than I was before.In context ↗ | Moderate | Pacing and the energy envelope |
| November 2025 | baseline slid from moderate back to severeMy baseline seemed to get worse from moderate to severe again in the last monthIn context ↗ | Severe | |
| Summer 2026 | seasonal improvement from bedbound to houseboundGo from bedbound to housebound; able to go downstairs, even sit outside and enjoy the weather.In context ↗ | Moderate | |
| 2026-08-01 | crashed after using an acupuncture matI’m now on day 3 of using it and I’ve started to crash.In context ↗ | Not stated | |
| 2026-10-07 | annual October slide into a severe winter baselineI’m moderate for 6 months of the year and then autumn and winter come around and I’m severe-very severe for 6 months.In context ↗ | Severe |
Adverse events
- Propranolol (Inderal)“I did used to be on propranolol for anxiety but it gave me weird side effects the last couple of months so I stopped taking it.” In context ↗ Side effects
- Antibiotics (unspecified)“The last time I had antibiotics I had a really rough time.” In context ↗ Made symptoms worse
- Oxaloacetate“I had a bit of an adverse reaction after the first dose, but thereafter it was fine. I didn’t crash, just didn’t feel great and was super tired for the rest of the day.” In context ↗ Side effects
- Co-codamol / Tylenol 3 (codeine with paracetamol)“Yeah I do terrible on codeine. Literally get like delusional and start getting intense day dreams.” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“It was awful. It made me feel so exhausted and weird in the first few hours, like I was in a dream state.” In context ↗ Side effects
- Low-dose naltrexone“It also tanked my mood and gave me an awful headache.” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“I really struggled to sleep lastnight because of anxiety and just a weird buzzing feeling.” In context ↗ Insomnia from treatment
- Mometasone nasal spray (Nasonex)“I’ve been taking the exact same nose spray for 3 weeks for chronic sinus issues (unrelated) and guess what… I’ve been crashed for no reason I can think of for about the same amount of time.” In context ↗ Made symptoms worse
- Mometasone nasal spray (Nasonex)“I also tried a steroid spray for a while but realised it was making my ME worse” In context ↗ Made symptoms worse
- Low-dose naltrexone“I tried LDN and it made me crash - I will probably try it again but from 0.1mg or something super small.” In context ↗ Made symptoms worse
- Acupressure, ear seeds and auricular devices“After the first session of using it I felt pretty tired ... I’m now on day 3 of using it and I’ve started to crash.” In context ↗ Made symptoms worse
- “I can’t use proper anti congestion medicine because as soon as I stop using it I get a rebound effect and I become even more congested than I was before.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
And I still get PEM!
In context ↗ - Brain fog
the worst is a severe brain fog 24/7
In context ↗ - POTS & dysautonomia
I have very bad OI and am diagnosed with dysautonomia w/ PoTS
In context ↗ - Light & noise sensitivity
Sometimes I’m super sensitive to light
In context ↗ - Headaches & migraine
an intense head pressure sensation which makes me feel extremely sick
In context ↗ - Muscle weakness
My body feels heavy and weak
In context ↗ - Anxiety & low mood
I have dealt with generalised anxiety for the last 3-4 years.
In context ↗ - Heart symptoms & palpitations
I had to go to the ER because I was getting extreme fluctuations with my HR
In context ↗ - Mast cell (MCAS) & allergies
it *could* be related to MCAS which I have tried a few treatments for to no avail
In context ↗
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