A Metabolic Trap for ME/CFS?

[Belbyr]

If you're interested in this metabolic block/trap----, and you can get hold of the Invest in ME Research International ME 2018 Conference DVD, then check out Professor Karl Johan Tronstad presentation. Karl worked with Fluge and Mella and was one of the authors on the paper showing problems with PDH enzyme. Google something like - Tronstad Fluge and Mella PDH enzyme - and you should find some stuff.

Do you know where this can be seen or purchased?

 

[Tally]

Do you know where this can be seen or purchased?

I would just like to warn you that metabolic trap is Robert Phair's idea which I believe we will hear for the first time more about in September OMF's Symposium.

I am not discouraging you from purchasing the Invest in ME Research International ME 2018 Conference DVD, it seems many researchers are zeroing in on metabolic findings and have many valuable things to say, but you will not hear about metabolic trap there.

 

[FMMM1]

Do you know where this can be seen or purchased?

I order it each year from their website. Google:
Invest in ME Research International ME 2018 Conference DVD

I agree that we are likely to hear more from OMF regarding metabolic research (including Phair) at the Community Symposium in September.

 

[Belbyr]

Ok I'll just wait for the new stuff. I hope for a lot of big info next month, these endless nights on the bathroom floor can't stop soon enough.

 

[FMMM1]

I would just like to warn you that metabolic trap is Robert Phair's idea which I believe we will hear for the first time more about in September OMF's Symposium.

I am not discouraging you from purchasing the Invest in ME Research International ME 2018 Conference DVD, it seems many researchers are zeroing in on metabolic findings and have many valuable things to say, but you will not hear about metabolic trap there.

Hi check out Chris Armstrong's December 2016 webinar. I think you'll find that Chris identified a locked altered metabolic state (referred to as a metabolic trap by Phair). Others such as Fluge, Mella and Tronstad (who identified a reduction in PDH enzymatic activity - published 22 Dec 2016) have also produced data on this. Phair has worked on this as an unpaid volunteer; great to see his research funded, albeit by donations (to OMF) rather than Governments.



Quote from Wiki:
The metaphor of dwarfs standing on the shoulders of giants (Latin: nanos gigantum humeris insidentes) expresses the meaning of "discovering truth by building on previous discoveries".[1] This concept has been traced to the 12th century, attributed to Bernard of Chartres. Its most familiar expression in English is by Isaac Newton in 1675: "If I have seen further it is by standing on the shoulders of Giants."[2]

 

[ljimbo423]

Quote from Wiki:
The metaphor of dwarfs standing on the shoulders of giants (Latin: nanos gigantum humeris insidentes) expresses the meaning of "discovering truth by building on previous discoveries".[1] This concept has been traced to the 12th century, attributed to Bernard of Chartres. Its most familiar expression in English is by Isaac Newton in 1675: "If I have seen further it is by standing on the shoulders of Giants."[2]

No doubt that's the only reason we are where we are in ME/CFS research today!

I think following the metabolic trap theory will lead researches to a lot of knowledge. My view is that the mitochondrial dysfunction is most likely what's causing most symptoms.

So the more they learn about it, the more info. we have to find things to intervene with and relieve or even reverse it.

 

[alex3619]

I think following the metabolic trap theory will lead researches to a lot of knowledge.

I think that even if the metabolic trap ideas are wrong they are likely to lead to major advances in understanding. Getting good data when we understand so little is always a good thing.

 

[ljimbo423]

I think that even if the metabolic trap ideas are wrong they are likely to lead to major advances in understanding. Getting good data when we understand so little is always a good thing.

Absolutely! Anything that helps us to better understand the mitochondrial dysfunction or further validate what has already been found is good news.

 

[Tally]

@FMMM1 I think you misunderstood me. I wasn't saying Phair is some lone genius or that previous work from other researchers isn't important (I have actually made this quite clear).

Chris Armstrong and his team were among the first ones to realize the importance of metabolism in this illness and look into it. @ChrisArmstrong is even a member of this forum and kindly answered many of our questions. I have carefully listened to his presentation on metabolics at last year's OMF symposium.

But Phair didn't just rename something Armstrong already talked about. Metabolic Trap is Phair's hypothesis so you won't hear about it from that Armstrong, Fluge, Mella or Tronstad.

Phair based Metabolic Trap on Dr. Davis' Severely Ill Data and as far as I know until OMF's Symposium in September the only place you can hear more about it is here https://www.healthrising.org/blog/2018/04/03/a-metabolic-trap-for-chronic-fatigue-syndrome-me-cfs

 

[alex3619]

Metabolic examination of ME patients in Australia goes back to the late 90s. I was tested back then, but the technology was nothing like we have today. However an influential paper in 2000 ended that line of enquiry by showing two of the key findings were test artefacts. The other finding was claimed to be wrong, but the test protocol in the 2000 paper was the wrong protocol, and few seemed to pick up on that.

 

[raghav]

It will be really really nice if Ron Davis or Phair can give an update on the progress of the testing done till now. This is the only project that can produce tangible treatment in the immediate future. Rest are years away.

 

[Belbyr]

It will be really really nice if Ron Davis or Phair can give an update on the progress of the testing done till now. This is the only project that can produce tangible treatment in the immediate future. Rest are years away.

I think they might be waiting until the end of September. The biggest clues given were from Ron Davis's youtube vid back in May of this year. Said there would be some study data and papers released.

 

[mariovitali]

It will be really really nice if Ron Davis or Phair can give an update on the progress of the testing done till now. This is the only project that can produce tangible treatment in the immediate future. Rest are years away.

I think this is not the case. Research of Derya Unutmaz is definitely something to keep an eye on, especially if he will be looking at Bile Acid metabolism which may be very important for ME/CFS pathology

 

[Tally]

Research of Derya Unutmaz is definitely something to keep an eye on

But can it offer a cure within the next few months? I seriously doubt that.

(I am not saying there's a high chance that metabolic trap is correct, but if the stars align and a miracle happens and everything they guessed about the metabolic trap is spot on, it would tell us about a cure that's cheap and already available)

 

[Belbyr]

I think this is not the case. Research of Derya Unutmaz is definitely something to keep an eye on, especially if he will be looking at Bile Acid metabolism which may be very important for ME/CFS pathology

Is there a connection between his microbiome work and what you mentioned?

 

[mariovitali]

Is there a connection between his microbiome work and what you mentioned?

Absolutely.

Impaired liver function can disrupt Bile Acid metabolism which in turn disrupts Gut Eubiosis. To make things worse ( and possibly set the stage for a vicious circle) , Gut dysbiosis can negatively affect Liver function.

 

[Belbyr]

Absolutely.

Impaired liver function can disrupt Bile Acid metabolism which in turn disrupts Gut Eubiosis. To make things worse ( and possibly set the stage for a vicious circle) , Gut dysbiosis can negatively affect Liver function.

So is the liver starting it? I for one was on long term antibiotics for acne when this all started. I recently was on antibiotics for what doctors thought was an infection... Turned out to not be one, now I am out of work again for the past month.

 

[mariovitali]

So is the liver starting it? I for one was on long term antibiotics for acne when this all started. I recently was on antibiotics for what doctors thought was an infection... Turned out to not be one, now I am out of work again for the past month.

For many cases yes. Viruses, medications even prolonged stress can negatively affect liver function . Check about EBV, Coxsackie, HHV-6 , Cytomegalovirus. They all can affect negatively liver function .

 

[ljimbo423]

So is the liver starting it? I for one was on long term antibiotics for acne when this all started. I recently was on antibiotics for what doctors thought was an infection... Turned out to not be one, now I am out of work again for the past month.

I am absolutely convinced that the 35-40 courses of antibiotics I took over many years is what caused my CFS. Although it has taken me 13 years and at least 15,000 hours of research, probably closer to 20,000 hours to figure this out.

It's the gut dysbiosis, causing a leaky gut and the toxins from that, are causing high levels of oxidative stress and my mitochondrial dysfunction or trap.

I think there might be a way to overcome the mitochondrial dysfunction to some extent, weather there is or isn't a "trap".

Some people have had very good results from BCAA's, very high dose alpha lipoic acid (1,200-1800mg/day), high doses of vitamin B-1, high dose coq10 and others.

These all improve mitochondrial function. I think it might be possible to take high enough doses of these nutrients and maybe a couple of others and restore mitochondrial function to varying degrees, depending on the person.

I think the healthier one's gut is though, the easier it would be to restore normal mitochondrial health and relieve symptoms.

 

[Belbyr]

I may be wrong but didn't Ron Davis says the mitochondria is fine, it's something in the serum affecting the mitochondria..?

Perhaps the 'trap' is the constant production of 'bad' metabolites in the serum affecting our mitochondria? ( I think I'm on the same page )