Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

[Thinktank]

@arewenearlythereyet , may i know which d-ribose product you are taking?
It sounds kinda expensive if you take a good quality product 30g daily.

 

[arewenearlythereyet]

@arewenearlythereyet , may i know which d-ribode product you are taking?
It sounds kinda expensive if you take a good quality product 30g daily.

I use the deluxe nutrition d ribose. It's on Amazon. They do a 25% free on their 1kg pack which works out the cheapest although I just noticed it isn't available right now. (Typical!). I'm sure the other versions are similar it says 100% pure on the pack so I'm guessing this is just straight freeze or spray dried with no carrier? It is pricey, and it is one of the more expensive supplements I take. At £0.74-£1.10 per day it's still much cheaper than a pack of cigarettes or a pint of beer a day ....well here in the uk anyway.

 

[Solstice]

I use the deluxe nutrition d ribose. It's on Amazon. They do a 25% free on their 1kg pack which works out the cheapest although I just noticed it isn't available right now. (Typical!). I'm sure the other versions are similar it says 100% pure on the pack so I'm guessing this is just straight freeze or spray dried with no carrier? It is pricey, and it is one of the more expensive supplements I take. At £0.74-£1.10 per day it's still much cheaper than a pack of cigarettes or a pint of beer a day ....well here in the uk anyway.

Will it get me just as drunk though!?

I'm gonna ask my physician about d-ribose, maybe it'll help with what I can only describe as the munchies.

 

[realturbo]

This D-ribose seems like good value at 650g for £26.95 (includes delivery). At an initial daily dose of 5g, that's about 21p per day...

 

[arewenearlythereyet]

That looks pretty much in line with the other pack price...(18p per 5g) I've got about half a pack left so will try this one if the dn one doesn't reappear. I think myhill & co recommend 15g per day from memory and this is also the dose recommended on the dn pack, although this is mainly for sports fitness (as if).

 

[kangaSue]

@Hip Have you heard of ethyl pyruvate as a means to improve energy metabolism. Following up on seeing it reported to be beneficial in intestinal ischemia, I came across a patent for it which included mention of it's possible use in CFS in saying;
http://www.google.com.au/patents/WO2009013723A2?cl=en
[Ethyl pyruvate is believed to improve cognitive, language, behavioural and social skills of autistic children and adults, promotes enhanced mental and physical recovery of cardiac, cancer and other chronically ill children and adults, and promotes enhanced energy recovery from mononucleosis, Chronic Fatigue Syndrome, Epstein Barr, hepatitis viruses and other chronic debilitating conditions.]

I don't know if it's in clinical use but ethyl pyruvate is proposed as a resuscitation fluid for use in the critical care area (Ringer's Solution) but there are others claiming to have a superior product.
https://www.ncbi.nlm.nih.gov/pubmed/12544977
https://www.ncbi.nlm.nih.gov/pubmed/19953008

 

[Hip]

@Hip Have you heard of ethyl pyruvate as a means to improve energy metabolism.

Looks interesting, but ethyl pyruvate does not seem to be available as a supplement. I have in the past tried calcium pyruvate, but did not notice much benefit.

Pyruvate is created by glycolysis, and when the mitochondria are working properly, this pyruvate is transported into the mitochondria, where more energy is extracted from it, by burning the pyruvate with oxygen. But if the mitochondria cannot accept pyruvate, then the pyruvate from glycolysis gets converted to lactic acid, which leads to a lactic acid build up.

There have been some suggestions recently by Fluge and Mella that there may be a defect in ME/CFS patients' mitochondrial pyruvate uptake (because of problems with the pyruvate dehydrogenase enzyme).

 

[kangaSue]

But if the mitochondria cannot accept pyruvate, then the pyruvate from glycolysis gets converted to lactic acid, which leads to a lactic acid build up.

O.K. I get that but I was wondering though if ethyl pyruvate can get around that by preventing the depletion of ATP in the first place. It's all academic of course if it can't be sourced as a supplement but that was the proposal of the patent I referenced.
https://www.ncbi.nlm.nih.gov/pubmed/21217488

 

[justy]

and finally eliminated in the urine as uric acid

Just having a thought here about low Uric acid in PWME - I posted that I have low uric acid some time ago and others said they did too and it was often found in PWME - does this have anything to do with what you were discussing in the above post perhaps?

 

[Hip]

Just having a thought here about low Uric acid in PWME - I posted that I have low uric acid some time ago and others said they did too and it was often found in PWME - does this have anything to do with what you were discussing in the above post perhaps?

According to the Myhill et al theory, I guess you may get an increase in uric acid during PEM, but that might be offset by a generally low uric acid level in ME/CFS, assuming this low uric acid level does generally exist in ME/CFS.

I would guess that generally low uric acid in ME/CFS might simply be a result of the increased urinary frequency and large throughput of water that you often find in ME/CFS, which will dilute the urine and make it pale and watery. I find every glass of water I drink seems to come out again (down the toilet, as very pale urine) within a couple of hours, and I keep needing to drink water.

 

[Hip]

O.K. I get that but I was wondering though if ethyl pyruvate can get around that by preventing the depletion of ATP in the first place. It's all academic of course if it can't be sourced as a supplement but that was the proposal of the patent I referenced.
https://www.ncbi.nlm.nih.gov/pubmed/21217488

I can't understand the mechanism of how pyruvate supplementation might help in ischemia, because you need oxygen in order to burn pyruvate in the Krebs cycle in the mitochondria. And in ME/CFS, if there are mitochondrial defects, additional pyruvate may not be of much help, since pyruvate is burnt in the mitochondria.

Although in the paper you linked to, I think they are looking more at reperfusion after ischemia. They say that pyruvate dehydrogenase (the mitochondrial enzyme that processes pyruvate) becomes dysfunctional during ischemia-reperfusion, and they speculate that ethyl pyruvate might help fix this. But they also speculate on several other mechanisms of how ethyl pyruvate might maintain ATP levels; so they don't really know for sure how it works.

 

[HowToEscape?]

I use the deluxe nutrition d ribose. It's on Amazon. They do a 25% free on their 1kg pack which works out the cheapest although I just noticed it isn't available right now. (Typical!). .....

1. How much D-Ribose is appriate for us?
2. How would I know the correct amount, other than "I red it on thuh innernet" ;-)

I have been using about 6 grams/day, to no distinct effect. Jarrow brand, they appear to be a reputable outfit, they have no connection to homeopathy, China bulk suppliers, etc.

 

[arewenearlythereyet]

1. How much D-Ribose is appriate for us?
2. How would I know the correct amount, other than "I red it on thuh innernet" ;-)

I have been using about 6 grams/day, to no distinct effect. Jarrow brand, they appear to be a reputable outfit, they have no connection to homeopathy, China bulk suppliers, etc.

I think 6g seems a little low (I take 20-30g every day). It is expensive, but I would try at least 15g a day and make a judgement from there. See how quickly you recover from PEM episodes as your measure. You probably want to be taking it for at least a few weeks to see an effect. It's a sugar so not like vitamins where you are dealing with micrograms. My 25% off pack is now back available on Amazon. Ordered it earlier this week. Good luck.

 

[Kenny Banya]

...many of us have reactive hypoglycaemia and candida and for this reason don't tolerate D Ribose...

Can you elaborate on this? What symptoms show you react to D Ribose?
Also, do you get mouth ulcers? I have been advised by my specialist that mouth ulcers are clear evidence of candida. I have had mouth ulcers since I was a baby, which got severe when I was an adult.
I thought it was coffee that induced mouth ulcers.

 

[abc123]

I think 6g seems a little low (I take 20-30g every day). It is expensive, but I would try at least 15g a day and make a judgement from there. See how quickly you recover from PEM episodes as your measure. You probably want to be taking it for at least a few weeks to see an effect. It's a sugar so not like vitamins where you are dealing with micrograms. My 25% off pack is now back available on Amazon. Ordered it earlier this week. Good luck.

For D-Ribose, Dr. Myhill's website suggests 15gm per day:

http://drmyhill.co.uk/wiki/D-ribose

Not sure how this works, if one is to pursue the paleo/ketogenic diet that she recommends. One has to keep daily carb intake to under approx. 40 or 20 grams (I think it varies for each person) in order to get into ketosis. Some people report an energy boost when they shift into ketosis. I assume 20-30 grams of D-Ribose per day, plus whatever other carbs can't be avoided, would prevent ketosis. (Not knocking anyone here; I'm just personally trying to get into ketosis to see if it lives up to all the hype...)

Thanks for the discussion. I just found that the D-Ribose I've been using has Dextrose in it, increasing the carb load unfortunately. I just ordered some pure D-Ribose powder, with the goal of reducing carbs...

 

[arewenearlythereyet]

Can you elaborate on this? What symptoms show you react to D Ribose?
Also, do you get mouth ulcers? I have been advised by my specialist that mouth ulcers are clear evidence of candida. I have had mouth ulcers since I was a baby, which got severe when I was an adult.
I thought it was coffee that induced mouth ulcers.

I have mouth ulcers but I think this is more a symptom of my folate and b12 deficiency. I think Candida overgrowth in the gut due to low stomach acid seems like a plausible explanation for gi issues especially those with b12 deficiency since this seems to go hand in hand. If you have oral thrush this should have other symptoms with it I guess (white coating on tongue and inside of cheeks). If you have mouth ulcers that come and go with no other symptoms then I would look into b12 and folate issues first if you haven't already.

 

[justy]

Can you elaborate on this? What symptoms show you react to D Ribose?
Also, do you get mouth ulcers? I have been advised by my specialist that mouth ulcers are clear evidence of candida. I have had mouth ulcers since I was a baby, which got severe when I was an adult.
I thought it was coffee that induced mouth ulcers.

Jittery, shaky, as if you have ingested a large amount of sugar. - I don't tolerate sugar well so its a typical reaction for me. It acts a s a sugar in the body so not good if you have a candidal overgrowth that you are trying to eliminate with diet etc.

I do get mouth ulcers, but they are not related to candida.

 

[arewenearlythereyet]

For D-Ribose, Dr. Myhill's website suggests 15gm per day:

http://drmyhill.co.uk/wiki/D-ribose

Not sure how this works, if one is to pursue the paleo/ketogenic diet that she recommends. One has to keep daily carb intake to under approx. 40 or 20 grams (I think it varies for each person) in order to get into ketosis. Some people report an energy boost when they shift into ketosis. I assume 20-30 grams of D-Ribose per day, plus whatever other carbs can't be avoided, would prevent ketosis. (Not knocking anyone here; I'm just personally trying to get into ketosis to see if it lives up to all the hype...)

Thanks for the discussion. I just found that the D-Ribose I've been using has Dextrose in it, increasing the carb load unfortunately. I just ordered some pure D-Ribose powder, with the goal of reducing carbs...

Yes there are a few contradictions on the myhill site. I do a low carb diet (less than 150g total carbs per day) and ignore all her stuff on paleo since the basis of this seems to be less scientific (our opportunistic metabolism has evolved over a greater period than the paleolithic for one thing). I did play around with a ketogenic diet with <60g carb a day for around 4-6 weeks and got into ketosis still taking the d ribose although this didn't really give me much more benefit to when I upped the carbs to 100-150g. I've come to the conclusion that rebalancing is better for me than purist exclusion diets. I think it's more important to have a balanced diet that has less reliance on carbs and sugar and sufficient and varied protein and fat sources to get essential nutrients. I worry about deficiencies that these miracle diets could introduce and effectively make things worse over the long term. Just my take on it though.

 

[Kenny Banya]

The justification for the 'paleo diet' is not substantiated in peer reviewed research (unless something new has come out)

 

[Learner1]

The good thing about a Paleo Diet is it's nutrient dense. I think that's the key. We'll never be 100% sure of what our ancestors ate.

There are a lot of good reasons to keep carbohydrate consumption low, and science is starting to support ketogenic diets as well.

Each of us is different, with different genes, environmental influences, and microbiomes. From what I've seen, most people can optimize diet by choosing high quality whole foods, like vegetables, protein foods, and healthy fats, while avoiding grains and sugars, and limiting fruit to low fructose nutritionally dense choices.