Abnormalities in the urine of people with ME/CFS? A clinician asks for feedback

I haven't noticed a significant change in the smell of urine during PEM, but I do experience a day where there is increased need to pee and passing more urine than usual. It has always felt very much a symptom of my ME that comes and goes. Would love to know what the chemical changes in my ME that cause it.
 
wigglethemouse said:
If I remember right Chris Armstrong/Neil McGregor measured urine during PEM. According to the University of Melbourne website this is his email. n.mcgregor@unimelb.edu.au

Neil talks about urine in PEM in this presentation around ~6mins. "Dramatic increase in amount of metabolites in urine". I recommend the clinician watch the full presentation, it is very thought provoking.
https://mecfsconference.org.au/videos/neil-mcgregor/
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@Tom Kindlon
I found McGregors paper that has urine information during PEM
Paper : Post-Exertional Malaise Is Associated with Hypermetabolism, Hypoacetylation and Purine Metabolism Deregulation in ME/CFS Cases
https://www.mdpi.com/2075-4418/9/3/70/htm
Thread : https://www.s4me.info/threads/post-...on-in-me-cfs-cases-2019-mcgregor-et-al.10260/

From the Abstract
Thirty-five of the 46 ME/CFS cases reported PEM in the last 7-days and these were allocated to the PEM group. The principal biochemical change related to the 7-day severity of PEM was the fall in the purine metabolite, hypoxanthine. This decrease correlated with alterations in the glucose:lactate ratio highly suggestive of a glycolytic anomaly.

Increased excretion of urine metabolites within the 7-day response period indicated a hypermetabolic event was occurring. Increases in urine excretion of methylhistidine (muscle protein degradation), mannitol (intestinal barrier deregulation) and acetate were noted with the hypermetabolic event.

These data indicate hypoacetylation was occurring, which may also be related to deregulation of multiple cytoplasmic enzymes and DNA histone regulation. These findings suggest the primary events associated with PEM were due to hypoacetylation and metabolite loss during the acute PEM response.
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From Introduction
Associations of the PEM scores were examined using standard serum biochemistry, a 24-hour urine assessment and a blood and urine metabolome.
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From Methods section - not very many metabolites measured. A new study could measure an awful lot more!
Twenty-nine metabolites per blood serum sample and thirty metabolites per urine sample were identified.
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Table 2 has the actual results
https://www.mdpi.com/2075-4418/9/3/70/htm#table_body_display_diagnostics-09-00070-t002

Purine Metabolism Changes
As serum hypoxanthine was the prime predictive variable for alterations in the PEM scores, we assessed the relationships between serum Hypoxanthine and the purine related metabolites (Table 4). Serum and urine hypoxanthines were lower in the PEM subgroups versus the controls.
....
This suggests that acetylation is a major factor in the change in the purine metabolism deregulation in ME/CFS. Thus, the increase in urine metabolite loss during exercise events in ME/CFS cases results in a loss of purine ring precursors and a fall in acetate and hypoxanthine.
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Limitations of the study
This study was designed to investigate metabolic changes in ME/CFS subjects using a discovery hypothesis and not a specific hypothesis-driven method to assess specific biochemical events. This study with these limitations has resulted in the development of a hypothesis which now requires to be assessed by a typical hypothesis-driven process.

Whilst the study size is small it reproduced the earlier findings but should be reproduced with a larger sample or multi-centers to reconfirm the findings. The use of self-reported symptoms may introduce a recall bias within the subjects and in a larger study, each of the variables found to be associated with the symptom severity and distribution need to be evaluated by other methods. Studies investigating acetylation and its related DNA transcription changes and the alteration in cytosol enzyme activity should allow the development of the understanding of the mechanisms of PEM development and the development of appropriate therapies based upon the underlying biochemistry.
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Groups have already completed this finding differences, but they did not account for less activity inducing a lower GFR.

It is dependent on vessel elasticity, and then you will variance in the disposition of amino acids and thus a different smell, so there is an explanation with zero pathophysiological involvement, and it would just be my first one.
 
I have noticed that my urine often has a rotten egg smell (which I notice more because I use a bottle.) Prof De Meirleir once claimed to have developed a test for ME which measured levels of hydrogen sulphide in the urine - what he called a neurotoxic metabolite test (NMT). I know that turned out to be unhelpful but I was interested that my my urine was at the extreme end of the scale on that test.

Another observation I have made is that despite having been on a ketogenic diet for some time I never get the smell of acetone in my urine or on my breath which is supposed to be a feature of ketosis. I know that I am in ketosis because I monitor my bloods and they are consistently between 1.5 and 3.0 mmol/L. At one time when I was ill with something else my blood ketone levels went up to 5.0 mmol/L and my urine ketones were 8-16 mmol/L but still there was no acetone smell. I wonder if this may offer a clue to understanding what might be wrong with my metabolism and that of others diagnosed with ME. Has anyone else on ketogenic diet noticed this? Does anyone have any ideas why it might be?
 
Mij said:
It could be hormonal for some. Since menopause my whole body smells like vinegar.
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@Mij I noticed a change in the smell of urine at menopause but it is more a constant change, unlike the PEM increased urine output that happens every so often. And I never noticed a strong smell with the PEM urine. I had ME twenty years before menopause so for me there is a difference between the PEM and menopause effects.
 
I can't really tell whether there's a change in smell, because it's masked by the BCAAs I take to help me reduce PEM symptoms. (The supplement contains B6, which is well known for making urine smell fishy.)

I need to pee every 20 minutes if I do go into PEM, but I'd assumed it was partly due to faulty temperature regulation. I feel extremely hot, take measures to cool myself down, and then – because I wasn't really hot in the first place – I'm frozen. Most people do urinate more when their bodies are trying to keep warm because they've thrown all the windows open in February :rolleyes:. The involuntary muscle tension I get in PEM also comes into play, as it puts pressure on my bladder.

Do other people feel that all-over tension, by the way? It's peculiar to PEM, and I've often wondered about it. By tension I don't mean muscle spasticity, or even the type of whole-muscle tightness that you feel when you're anxious. This feels like tension in the tiniest of the muscle fibres, over which you don't have much voluntary control – I found that it was relieved by gabapentin when I was taking it. It might be due to something as simple as a build-up of lactic acid, though.
 
I wonder if @strategist ’s suggestion early on in this thread of a poll is worth following up? Not thinking logically at present so not sure what the best questions would be.

When reading through the Prohealth thread that @DokaGirl linked to, I wondered if some of the comments might be explained by hypersensitivity to odours. When relying on self observation would it always be possible to distinguish between actual changes in the odours and changes in an individual’s perception of odour? Certainly my hypersensitivities vary with my ME and I am more likely to be hypersensitive to smells when in PEM.
 
Yes, @Peter Trewhitt , I think it's possible some pwME could be hypersensitive to some smells. However, I do know the body odour one for me was confirmed by another person.

I have looked, and may do so again for any articles about body odour and autonomic dysfunction. Several years ago I was advised by a health care provider that autonomic dysfunction may be causing bad body odour.

ETA: I think a poll is a good idea.
 
wigglethemouse said:
@Tom Kindlon
I found McGregors paper that has urine information during PEM
Paper : Post-Exertional Malaise Is Associated with Hypermetabolism, Hypoacetylation and Purine Metabolism Deregulation in ME/CFS Cases
https://www.mdpi.com/2075-4418/9/3/70/htm
Thread : https://www.s4me.info/threads/post-...on-in-me-cfs-cases-2019-mcgregor-et-al.10260/

From the Abstract


From Introduction


From Methods section - not very many metabolites measured. A new study could measure an awful lot more!


Table 2 has the actual results
https://www.mdpi.com/2075-4418/9/3/70/htm#table_body_display_diagnostics-09-00070-t002

Purine Metabolism Changes


Limitations of the study
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I remember happily exclaiming to my bf "And they even looked at the urine!" :D

Mine smells fruity from time to time and can be cloudy, but that happens also when I'm not in PEM. My sweat smellls differently when in PEM. Like others I pee more often when in PEM and feel dehydrated no matter what I do. I can even lose my sleep because I wake up so often to pee.. That has grotten better after I changed when I eat carbs during the day, and I have no idea if it is because the carbs make me sleep better or if it is something more complicated going on (microbiome-gut-body related for example as I've teste with different carbs and it works best when it contains resistans starch).
 
Robert 1973 said:
Another observation I have made is that despite having been on a ketogenic diet for some time I never get the smell of acetone in my urine or on my breath which is supposed to be a feature of ketosis.
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Some people can't smell ketones because of their genetics. We were taught at university not to place too much emphasis on smelling ketones as an aid to diagnose diabetic ketoacidosis because of that. The same goes for pear drop type sweets too - some people don't register the smell.
 
I have not noticed different urine smell during PEM, but i will tend to have an overactive bladder and if I crash really bad i am more likely to have symptoms similar to interstitial cystitis. The last time i had a 2 days CPET, this is what happened and it lasted a month.
 
Never noticed a difference with urine.

Around and after onset 5-6 years ago my underarm sweat changed (very sudden strong-smelling bursts) but that seemed to resolved itself after a few months (thankfully, not good for the classroom). I mentioned it to my doctor at the time, he didn't say anything, just made a hand-waving movement.
 
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