Ron Davis: Preliminary data shows problems with energy metabolism

[alex3619]

So yes, the subject of mitochondria has been implicated before, but the degree to which Ron Davis and the OMF are looking at it is mind blowing.

Similarly a focus on glycolysis and the Krebs (Citric Acid) Cycle was a hot topic in the late 90s. Researchers lost interest in it, or funding became hard to get, or something. My own model was a Citric Acid Cycle/Glycolysis hybrid (and wrong). Wong et. al. (1996?) found data that showed mitochondrial slowdown, but they preferred to think of it as glycolytic acceleration. I pointed this out to a few scientists, but nobody was listening.

 

[perrier]

also found this article on
Mitochondrial Dysfunction, Post-Exertional Malaise and CFS/ME
http://www.prohealth.com/library/showarticle.cfm?libid=18840

again, apologies if you've already covered it

also interesting but not new
https://floxiehope.com/2015/02/24/study-finds-that-ciprofloxacin-depletes-mitochondrial-dna/

My daughter was on Cipro for more than three months for hospital acquired cdifficile after a most minor surgery. She never came back to normal after that. Became severely ill.

 

[RL_sparky]

Once the data is analyzed it will hopefully reveal things that we can use to help them by putting out information that their doctors can use to help them, and to make recommendations for over-the-counter supplements that are likely to help.

It will be interesting to see if any over the counter supplements will make much of a difference. Over the years I've tried thousands of dollars of supplements with no significant improvement.

 

[Kati]

It will be interesting to see if any over the counter supplements will make much of a difference. Over the years I've tried thousands of dollars of supplements with no significant improvement.

I also think that it will not be one cause and one pathology.

 

[Janet Dafoe]

It will be interesting to see if any over the counter supplements will make much of a difference. Over the years I've tried thousands of dollars of supplements with no significant improvement.

So has Whitney. But now we have data on what to target.

 

[JamBob]

Laurel Crosby and Ron are working on a way for people to get tested at Metabolon, hopefully at lower than their normal cost. I can't say details yet, but very soon you will hear about it. Laurel is working really hard on this. Very exciting....Stay tuned....

That's really great news - I would definitely be interested in this kind of test.

Rose do you think that the test would be accessible to international patients - e.g. is it something where the sample can be sent by post or do you have to have special conditions for the samples (like stored on ice or at the lab in 30 minutes)?

 

[Sea]

YES, omg! On my giant PhD thesis chart, it already says "glycolysis"... "--pushes to--->" "fatty acid synthesis"... and when I follow my arrows back, it relates to infection.

...It's great having brain fog, you get to rediscover everything all over again.

-J

I don't know enough to even know what question to ask but I'm going to try anyway. If someone has a fatty acid oxidation disorder (FOD) they usually rely more on getting their energy needs met via carbohydrates and frequent feeding. They eat very low fat and try to avoid situations where the body turns to fat for energy as it can't be utilised effectively and creates toxins the body has difficulty dealing with.

Can you make an educated guess as to what effect it would have if a person with ME/CFS also has a problem with Fatty Acid pathways for getting energy? I haven't had further testing yet but I know I am at least a carrier for CPT2 deficiency. Being a carrier does affect enzyme function but not usually affected enough to cause metabolic crises.

 

[perrier]

Ron says: Yes. In order to help patients, we need a large amount of data. Crowd funding where patients contribute their own data is a much faster way than relying on NIH funding. Helping patients immediately with the data may be difficult, but this may help them faster than waiting for NIH. Once the data is analyzed it will hopefully reveal things that we can use to help them by putting out information that their doctors can use to help them, and to make recommendations for over-the-counter supplements that are likely to help.

So has Whitney. But now we have data on what to target.

I'm concerned about absorption issues.

 

[Valentijn]

But are for example Ron´s methods acceptable in the scientific community?

I think you're asking about the validity of the testing, more or less? By using controls, any problems with the tests themselves would be apparent. Basically patients are presumably being compared to controls who are tested with exactly the same tests. Thus if the test gave abnormal values due to a problem with the test, the same thing would happen to the controls, and there probably wouldn't be a significant difference between patients and controls for that test.

 

[Janet Dafoe]

I'm concerned about absorption issues. My daughter is unable to gain weight. She just looks wasted. I suppose some items can be introduced IV, because the gut is not working right.

Whitney was like that too. That's why we got a PICC line. But those lead to problems too. He now has a jtube for feeding into his small intestine and we are trying to get him off the PICC line feedings, which are not a long term solution. But he did gain weight on it at first, which really helped. Then, over time, he had deficiencies due to the incompleteness of TPN (PICC line feeding). I wish Whitney could have just started with the jtube, but he was so weak (only 115 pounds and 6'3" that he couldn't really even get to a hospital to get a jtube and we found people who inserted PICC lines at home. You really need a good doctor to help with this. I hope you can find one! Perhaps you could email David Kaufman in Mountain View CA at the Open Medicine Institute and see if he would consult. But he's so far away. Aren't you in UK?

 

[slysaint]

I like the term Mitochondrial Dysautonomia Perhaps we could incorporate this in our name somehow? Get rid of fatigue!

It already exists:
http://www.mitoaction.org/blog/dysautonomia

 

[Ben H]

It already exists:
http://www.mitoaction.org/blog/dysautonomia

Dysautonomia is to do with the autonomic nervous system (ANS).

I think what @Mij was referring to was the same concept, but applied to the mitochondria. I.e. The mitochondria not being able to regulate themselves, or something else regulating them abnormally (which the latter has been implicated).

Mitochondrial Dysautonomia doesn't officially exist afaik, but if we have problems with mitochondrial regulation it's quite a catchy name! Depends on what Davis and the science turns up though. Specifics/mechanism are very important here.


B

 

[slysaint]

Dysautonomia is to do with the autonomic nervous system (ANS).

I think what @Mij was referring to was the same concept, but applied to the mitochondria. I.e. The mitochondria not being able to regulate themselves, or something else regulating them abnormally (which the latter has been implicated).

Mitochondrial Dysautonomia doesn't officially exist afaik, but if we have problems with mitochondrial regulation it's quite a catchy name! Depends on what Davis and the science turns up though. Specifics/mechanism are very important here.


B

so what's this?:
'Mitochondrial Dysautonomia with Functional Disorders
Research by Dr. Boles and his team at Children’s Hospital Los Angeles, conducted with colleagues throughout the world, suggest that mitochondrial dysfunction is an important part of the genetic component of many of the functional and dysautonomic conditions, including autism, chronic fatigue, depression,'

http://curemito.org/mito-diseases

 

[ScottTriGuy]

Mitochondrial Dysautonomia

From a public relations perspective, it is better than 'myalgic encephalomyelitis', at least most people are familiar with the word 'mitochondria', and I suspect a minority would be able to recall them as something like energy powerhouses...but 'dysautonomia', that would take some work to help the public understand.

'Mitochondrial dysfunction' more easily conveys the message to the masses, fwiw.

 

[Ben H]

From a public relations perspective, it is better than 'myalgic encephalomyelitis', at least most people are familiar with the word 'mitochondria', and I suspect a minority would be able to recall them as something like energy powerhouses...but 'dysautonomia', that would take some work to help the public understand.

'Mitochondrial dysfunction' more easily conveys the message to the masses, fwiw.

Hey @ScottTriGuy

I was just explaining what I think @Mij meant. Also mitochondrial dysfunction may not be accurate, as has been suggested, the mitochondria might not be inherently faulty per se, but just not regulated properly. I guess it depends on what 'dysfunction' means to each person.

We do need a better name, but pathology is not known yet so we need to wait. But seeing as the mitochondria seem to be deregulated, the dysautonomia can make some sense, but like I said its dependant on specifics. I think Mij was just having fun!

We just don't want another 'CFS' again. But to be fair, I think the name, or a new one, is the least important thing at this early stage.


B

 

[panckage]

I think you're asking about the validity of the testing, more or less?

The other issue is with the amount of things being compared the chance of spurious correlations is quite high. It can give leads but with the number of comparisons the results won't be statistically significant except in extreme cases.

It will be up to further research to see if the correlations are actually due to the disease as opposed to statistical noise

 

[BurnA]

It will be up to further research to see if the correlations are actually due to the disease as opposed to statistical noise

This is the next phase of the OMF study afaik.
Testing will be more specific and therefore cost less because they will focus on the items of interest found in the big data study.

 

[Janet Dafoe]

The other issue is with the amount of things being compared the chance of spurious correlations is quite high. It can give leads but with the number of comparisons the results won't be statistically significant except in extreme cases.

It will be up to further research to see if the correlations are actually due to the disease as opposed to statistical noise

Wenzhong is one of the best statisticians in the country and is aware of this issue. He knows how to analyze data taking this into account. It's a real issue to deal with. He knows how. Yay!

 

[alex3619]

On targeting problems with supplements and other things: suppose you needed ten things to get the mitochondria working again. ABCDEFGHIJ. Now suppose you take a supplement that fixes A, but the others are not fixed. What happens? Probably not much. Suppose you did your investigation and found supplements for ABCDEF but they did not work. Why not? Maybe G through J were not even known. Maybe some supplements do not work too well, or at the wrong doses, or you have secondary problems that stop them from working.

The point of finding exact mechanisms is you know what to test for. Guesswork is minimized, though never entirely absent. So you can, with the aid of tests, start fixing the whole alphabet.

Here is an issue that many of us have found though - sometimes we find stuff that helps a lot, then it stops working. I think ME and commonly CFS are probably maintained by some feedback mechanism. Until that is gone then dropping in supplements will just kick the feedback to stop them from working. Once we understand the mechanisms then we can figure out ways to circumvent them.

 

[Gijs]

I don't see any damage to the mitochondia 'only' dysfunction just like all the other problems they have found in ME/CFS. Dysfunctions... I think you can find dysfunction in the mitochondira if you have the flu too. It doesn't say anything at this point.