https://youtu.be/fsxnw2caw5c Thiamine deficiency as a main contributor to cfs

[Oliver3]

No problem. I think getting these mineral wheels turning again after the cell danger response has kicked in is maybe the reason why many people don't see results.
I'm gonna keep at this for a year or so.
I'm already noticeably better. Still suffering a lot but my mood and energy levels are noticeably changes.
Like us all, I've had many false dawn's with protocols.
It's interesting tho, b1 and it's co factors are implicated in so many aspects of this disease from histamine in the brain and other body parts, to Alzheimer's like problems, dysaubfonnia ,POTS, vagus nerve control, prediabetes/ diabetes blood sugar control, anxiety , depression, brain fog, sibo, ibs etc etc
Considering how much carbs and sugar I've eaten and that b1 is depleted by these things has made me think this could be at least a real aid to feel a fair bit better. Even if it's not a cure.

My crude advice. Go very slow. And low. Find the best form of b1 . And a decent vit b complex. Add in mag , try and get molybdenum from flax seed or even wheatgerm. Take selenium. Hydrate well with electrolytes.
The guy you mention has some great videos and he knows his stuff.
He's not claiming to know everything, which is a good sign in itself, but going on how I'm feeling so far, there's deffo smthg to this. How big an impact and how sustained will be seen I guess.

 

[Oliver3]

The video by Overton is very good, and brings me back to thinking the very core of my problems are something wrong on the most basic level, the mitochondria, specifically, the electron transport chain. It's very complicated, though.

Thanks for the info, @Oliver3.

Regarding the electron transport chain and redox potential. I contacted omf a couple of years ago about light and it's effects on these system. I don't claim to fully understand them cos I'm not a scientist but I'd noticed earlier on in my illness, if i established my circadian rhythms to the rise and fall of the sun the fight or flight stopped. This made me curious. I eventually found the work of jack jruse, who is really so arrogant but he said that CFS was a mitochondrial, electron chain problemi messaged this to omf and they shot back." How did you know about this? We're focusing on this right now". Whether it became part of their work, the theory, not me thinking I'd contributed anything by sending them a link to Jack Kruse.
Kruse himself says that CFS is a form of dehydration resulting from poor mito function.
It was then that I realised, I had no chance of ever figuring this out!!
But what you mention about electron chain transport does hold out I think

 

[Shanti1]

I jut purchased the coenzymated (thiamine pyrophsophate). It arrives next week. I'll report back.

My experience so far with Coenzymated B1:

• Coenzymated B1 (thiamine pyrophosphate)- I'm on day 4 of Coenzymated B1 and the last 4 days have been the best I've felt in a long time. When sitting working, my energy and cognition have felt NORMAL at times. I still have OI and need full compression, but I was able to cut back on my droxidopa by 25%. Irritability and hypersensitivity to sound still a problem. I'm taking 3-5 lozenges of coenzymated B1 per day along with the 50mg of allithiamine. However, its early days. I usually wait at least 3 weeks before I report on something, but I think this one is a keeper.

My experience with other forms of thiamine:

• Regular B1- Feel better for first 1-2 days using 100-200mg, then feel worse with continued use.
• Benofthiamine- same experience as with regular B1
• Allithiamine- Improvement in brain fog and energy, able to use daily at 50mg. Sometimes increase to 150mg as needed.

Other odds and ends:

• I tried taking 100mg of riboflavin, but felt worse with it, so am relying on what is in my multi
• Potassium and phosphorus did not help me to tolerate regular B1 for more than 1-2 days. However, there was one day when I started to feel poorly after taking a Coenzymated B1 lozenge, I took some potassium and phosphorus and felt better. I am keeping it on hand.

Carbonic anhydrase inhibition:

• High doses of B1 can act like a carbonic anhydrase inhibitor and it is proposed that this is one of its mechanisms of action.
• A while back, I tried the carbonic anhydrase inhibitor Diamox (acetazolamide). I did not feel better or worse with it, but I noticed that it caused me to take deep long diaphragmatic breaths (one of its known effects.
• Since adding in the Coenzymated B1, I am noticing this same effect of compulsory deep breathing. Also feeling like I have better blood flow, especially to the brain. These are both probably due to its carbonic anhydrase effect. B1 is also needed for energy pathways, so that may be another way it is helping*

*From Wiki: Thiamine pyrophosphate is synthesized in the cytosol and is required in the cytosol for the activity of transketolase and in the mitochondria for the activity of pyruvate-, oxoglutarate- and branched chain keto acid dehydrogenases.

Edit: I'm a big coffee drinker and I'm reading how the tannins in coffee, tea and some other things contain thiaminase which can degrade thiamine in the intestines so, like sugar, can affect our absorption rates.

I also like my coffee... and tea. Coffee and tea may interfere with absorption of multiple nutrients, but they also have health benefits, and for me really improve quality of life. I've just decided to supplement around them as best I can. I think mega doses of nutrients can also overcome much of their inhibition.

 

[Violeta]

Regarding the electron transport chain and redox potential. I contacted omf a couple of years ago about light and it's effects on these system. I don't claim to fully understand them cos I'm not a scientist but I'd noticed earlier on in my illness, if i established my circadian rhythms to the rise and fall of the sun the fight or flight stopped. This made me curious. I eventually found the work of jack jruse, who is really so arrogant but he said that CFS was a mitochondrial, electron chain problemi messaged this to omf and they shot back." How did you know about this? We're focusing on this right now". Whether it became part of their work, the theory, not me thinking I'd contributed anything by sending them a link to Jack Kruse.
Kruse himself says that CFS is a form of dehydration resulting from poor mito function.
It was then that I realised, I had no chance of ever figuring this out!!
But what you mention about electron chain transport does hold out I think

Cytochrome c oxidase (CcO; complex IV of the mitochondrial electron transport chain) is the primary site of cellular oxygen consumption and, as such, is central to oxidative phosphorylation and the generation of adenosine-triphosphate. Nitric oxide (NO), an endogenously-generated gas, modulates the activity of CcO. Depending on the intracellular oxygen concentration and the resultant dominant redox state of CcO, the interaction between CcO and NO can have a range of signaling consequences for cells in the perception of changes in oxygen concentration and the initiation of adaptive responses.

This is the important part:

At higher oxygen concentrations, when CcO is predominantly in an oxidized state, it consumes NO. At lower oxygen concentrations, when CcO is predominantly reduced, NO is not consumed and accumulates in the microenvironment, with implications for both the respiratory rate of cells and the local vascular tone. Changes in the availability of intracellular oxygen and in the generation of reactive oxygen species that accompany these interactions result in cell signaling and in regulation of oxygen-sensitive pathways that ultimately determine the nature of the cellular response to hypoxia.

This is one place in the electron transport chain where oxidative stress originates. Martin Pall talks about oxidative stress but I haven't seen him point to the origin.

I am sure there are other ways the electron transport chain can be messed up. Let me see if I can find where it explains how h2o2 is formed in the chain.

 

[Oliver3]

Thank you...will take me a while to understand that!

 

[Wayne]

Article on CFS significantly improving with thiamine supplementation.

Significant Improvement Story -- Focus on Thiamine Deficiency

 

[Judee]

I also like my coffee... and tea. Coffee and tea may interfere with absorption of multiple nutrients, but they also have health benefits, and for me really improve quality of life. I've just decided to supplement around them as best I can. I think mega doses of nutrients can also overcome much of their inhibition.

That raypeat page said,

A study by Kositawattanakul and colleagues (1977) found that ascorbic acid (vitamin C) protected the modification of thiamine by tea extract...The precipitate formation makes thiamine less available for absorption by the intestine. Again, ascorbic acid, tartaric acid, and citric acid, all present in many vegetables and fruits, are said to lower such precipitation and increase thiamine bioavailability.

The following recommendations were made to decrease the influence of anti-thiamine factors in reducing thiamine absorption (Vimokesant et al, (1982):

• delay the consumption of tea or other tannin-containing products after a meal;
• consume foods high in ascorbic acid along with the meals;
• heat products containing thiaminase before consumption. [bolding theirs]

There's a good chart on that page too about the different types of thiamine inhibitors.
(https://raypeatforum.com/community/threads/anti-thiamine-factors.43679/)

I've actually been mixing some sodium ascorbate or ascorbic acid powder into my coffee with most cups. Distorts the flavor a little that way but gives me a dose of vitamin C and hopefully negates those tannins some as well increasing the thiamine bioavailability.

I'm excited to hear the Coenzymated version is helping you. I started it too (just 1/day) maybe about 4-5 days ago but am not noticing anything yet. However, I started the Allithiamine yesterday (just 50mg/day) and am noticing something but I need to add the other co-factors or I start getting a little bit more shaky (increase in my tremors) if I don't.

 

[lyran]

Many people with CFS/ME and fibromyalgia are suffering from low endorphins. I wonder if there is any connection to low endorphins and (low) thiamine. I couldn't find any studies on it.

 

[Violeta]

Thank you...will take me a while to understand that!

It just means that if there isn't enough oxygen available, too much nitric oxide will be hanging around and also water won't be produced. See the H2O coming out of Complex IV.

But I don't know if this is the dehydration that Jack Kruse is talking about.

Somewhere I saw someone say that thiamine is very responsible for cytochrome c, but I can't remember where. I hope to have time to look for that today. I know thiamine is responsible for getting the whole mitochondria process going but I thought something else was more important for Complex IV.

 

[Oliver3]

Many people with CFS/ME and fibromyalgia are suffering from low endorphins. I wonder if there is any connection to low endorphins and (low) thiamine. I couldn't find any studies on it.

It helps create dopamine I believe which is what Ron is using Ativan and ability for.

 

[Oliver3]

It just means that if there isn't enough oxygen available, too much nitric oxide will be hanging around and also water won't be produced. See the H2O coming out of Complex IV.

But I don't know if this is the dehydration that Jack Kruse is talking about.

Somewhere I saw someone say that thiamine is very responsible for cytochrome c, but I can't remember where. I hope to have time to look for that today. I know thiamine is responsible for getting the whole mitochondria process going but I thought something else was more important for Complex IV.

View attachment 50540

This is very interesting stuff and just about the pay grade that I can begin to understand. Thanks for supplying this further explanatory stuff.
Regarding Kruse, the dehydration thing struck a chord with me as I'm very dry etc, constantly needing electrolytes and feeling with load blood volume.
The guy is pretty unbearable to listen to but I read enough to know he actually does know stuff!!!
But he's too arrogant to be really open and inquisitive. Still I appreciate his insights and what I can take from them.
Natural light, red light etc daytime exposure of light to the skin to stop electron loss and boost redox and n.o potential

 

[sb4]

Still I appreciate his insights and what I can take from them.
Natural light, red light etc daytime exposure of light to the skin to stop electron loss and boost redox and n.o potential

FWIW I was posting on the Kruse forums quite early on, from 2011 to around 2016 I believe. I experience significan't improvements in health following his stuff BEFORE I got ill. However I went into sun bathing, seafood, cold thermogenesis, cicadian rhythm, deuterium depletion, etc quite heavily after getting ill and for me these things had minimal effect.
I still do try to catch some sunlight and maintain good circadian rhythm in general but for me, Kruse didn't have the answers. The irritating thing for me is when I would write about it not working Kruse and others responses to me where generally that I "don't have enough skin in the game" ie I'm not trying hard enough.
I think most of Kruses stuff is great if you are generally healthy or have a disease not as complicated as what we have.

 

[Oliver3]

FWIW I was posting on the Kruse forums quite early on, from 2011 to around 2016 I believe. I experience significan't improvements in health following his stuff BEFORE I got ill. However I went into sun bathing, seafood, cold thermogenesis, cicadian rhythm, deuterium depletion, etc quite heavily after getting ill and for me these things had minimal effect.
I still do try to catch some sunlight and maintain good circadian rhythm in general but for me, Kruse didn't have the answers. The irritating thing for me is when I would write about it not working Kruse and others responses to me where generally that I "don't have enough skin in the game" ie I'm not trying hard enough.
I think most of Kruses stuff is great if you are generally healthy or have a disease not as complicated as what we have.

Thanks for that. Yes he's an arrogant fool. And I don't think he has THE answer. Just sorta adding to the ideas of electrons and redox potential by mentioning his ideasi need to understand all this stuff better. It's the b1 I'm interested in really but you raise a valid point about if you're healthy it's a good way to keep well
He does say I think , that reversing CFS is on the tricky side of possible. But his machoismo is so unsavoury..
I'll keep plugging away trying to understand this stuff!!

 

[Violeta]

This is just so good, maybe just a couple of paragraphs at a time and skipping some paragraphs.


https://www.sciencedirect.com/science/article/pii/S0261561418324269

Feeding mitochondria: Potential role of nutritional components to improve critical illness convalescence
Author links open overlay panelE. Wesselink a, W.A.C. Koekkoek b, S. Grefte c, R.F. Witkamp a, A.R.H. van Zanten b

From 2019

 

[lyran]

It helps create dopamine I believe which is what Ron is using Ativan and ability for.

It seems so yes. I'm more interested in beta-endorphins and metenkephalins which have fatigue and pain reducing effects and are also immune modulating. These are low in CFS/ME and fibromyalgia.

 

[L'engle]

I also had the experience of feeling worse on benfotiamine until I took it with a phosphorus source.
Most nutritious food are high in phospohorus and if I eat a good amount in the time after taking the benfotiamine I feel better instead of worse. (And not just the 'better from eating' that one would expect.)

I wonder how many people are trying B1, feeling worse on it, and not knowing about the phosphorus connection or other cofactors? It's worth looking into things again, and in different forms, even the 'common' vitamins.

 

[Oliver3]

This is just so good, maybe just a couple of paragraphs at a time and skipping some paragraphs.


https://www.sciencedirect.com/science/article/pii/S0261561418324269

Feeding mitochondria: Potential role of nutritional components to improve critical illness convalescence
Author links open overlay panelE. Wesselink a, W.A.C. Koekkoek b, S. Grefte c, R.F. Witkamp a, A.R.H. van Zanten b

From 2019

Wow, there's some amazing info there.
Is this sort of stuff bread and butter for CFS researchers like Ron Davies or would this be new to this.
Bio energetic failure of skeketal muscle sounds familiar!

 

[Strawberry]

I have a bottle to be delivered Sunday. I was researching this for my brother in law’s Parkinson’s, then found this thread. So I’m going to try it too.

 

[Oliver3]

I have a bottle to be delivered Sunday. I was researching this for my brother in law’s Parkinson’s, then found this thread. So I’m going to try it too.

https://neurosciencenews.com/mitochondrial-depression-aging-22460/

Just to add to what's been said about mitochondria here

 

[Oliver3]

I have a bottle to be delivered Sunday. I was researching this for my brother in law’s Parkinson’s, then found this thread. So I’m going to try it too.

Go low....very very low and slow. Find out about the co factors needed or it might be what a lot of people are experiencing. Temporary relief, then a crash