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Ron Davis at San Francisco rally: very close to a biomarker, looks like a mitochondrial problem

Janet Dafoe

Board Member
Messages
867
The Open Medicine Foundation, OMF, is a completely independent organization from the Open Medicine Institute, OMI.

The OMF was started by Linda Tannenbaum to raise money for neuroimmune diseases, upon a request by Andy Kogelnik. She started it by herself, is the CEO, and it's completely independent of OMI. Linda was fundraising for the OMI for a while at the beginning.

The OMI is Andy Kogelnik's Institute where he maintains his clinical practice, as does David Kaufman, and they do some research.

I met Linda at a support group meeting a few years ago, and she came over to our home that very day to meet Ron and help us with tips for fundraising for our Chronic Fatigue Syndrome Research Center at Stanford University.

They quickly realized that if they teamed up they would be a powerful team, with Linda leading the fundraising and Ron being the Director of the OMF Scientific Advisory Board, in charge of all the research.

This allowed Ron to realize his mission of putting together an amazing team of Nobel Laureates and National Academy of Sciences members, all with long and deep track records of success in science and publishing, creative, out of the box thinking, and a low "arrogance to intellect" ratio, as Ron puts it. These people are truly amazing and brilliant, and scientists like this haven't ever tried to tackle ME/CFS before.

So now OMF fundraises for the reserach that Ron plans and supervises (and does, along with other top-notch scientists that he recruits), and OMF is not raising money for OMI any more.

Andy, at OMI, is on the Scientific Advisory Board for OMF that Ron put together, and we need a doctor to recruit patients for the studies, to do the blood draws, etc, and luckily, Andy is really smart and has some research capability at OMI so he is doing some of the tests.

Most of the tests are being done elsewhere, at the very best possible places that exist, with the most cutting edge capabilities.

The samples are being sent to Stanford's immunology dept and genetics dept, to Ron's Genome Center (where the CFS Research Center at Stanford is), to Harvard, to Dr. Naviaux, at UCSD, to Metabolon, a company that Ron has consulted with over the years as they developed their mass spectrometry to measure metabolites, and to other labs that have agreed to do the tests at their cost, saving a LOT of money.

The CFS Research Center at Stanford is where Ron has a growing team of amazing scientists from several disciplines (different from the OMF Scientific Advisory Board), including Laurel Crosby, some engineers, some bioinformatics people, great smart Stanford people, and they meet every week to share progress, thoughts and plan together.

They get calls now from doctors and researchers all over that are beginning to hear about this from Ron (who has great credibility, so if he says it's a good thing to work on, they take notice) and are interested in finding out more and collaborating.

He even has some students working on it - great progress because that used to be a death knell for a career if you worked on CFS. Not any more in Ron's lab!

People sometimes get confused about where to donate. The main place is OMF, because Linda is able to pay for the research anywhere Ron wants to get it done, and the more OMF raises, the more credibility she has to raise more.

Money given to the CFS Research Center at Stanford must be spent at Stanford on Ron's CFS research, or the work in the immunology department or genetics department, all on Ron's CFS work for the End ME/CFS project - just the Stanford parts of it. So the money given to either place goes to the CFS work Ron is doing or directing.

But the best place to donate is OMF. I hope this helps. I know it's confusing.

OMF is run in Southern California by Linda Tannenbaum, who is CEO. OMI, where Andy Kogelnik's clinic is, is in Mountain View, CA. Ron Davis is a professor of genetics and biochemistry at Stanford, Director of the Stanford Genome Technology Center, and Director of the CFS Research Center at Stanford and lives in Palo Alto and works at Stanford.

Linda flew up from S Cal to attend the event on Wednesday. She is AWESOME. She is going to the London conference with Ron. They are a great team.

I help behind the scenes with ideas and strategies and writing, and whatever else I can do. Twitter. LOL. And Ashley, our daughter, Whitney's sister, does lots of advocacy and helps in lots of ways too. She manages the CFSResearch Center fb page and does what she can for fundraising too.

We are totally dedicated to solving this puzzle as fast as possible!
This is the new correct updated version of both my previous posts. Please use this one, because I have edited mine and combined my two posts. This and post #60 are now the same. Thanks.
 
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Janet Dafoe

Board Member
Messages
867
@Rose49 - It might be a good idea to put something like this on #MEAction. Would you be willing to make some tweaks and submit it?

Let me know if you can't, I'll put someone on it. :)

-J
@JaimeS I have edited and combined my posts explaining OMF and OMI. You can post the new version on MEAction. I tried to, but it put it over on the side so I don't think many people will see it. Please make sure it's the new version that I edited. Thanks.
 
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thegodofpleasure

Player in a Greek Tragedy
Messages
207
Location
Matlock, Derbyshire, Uk
I also enclose another test I had done at a later date -
this maybe of interest to someone?

The image you posted was the study of Mitochondrial Membrane Translocator Proteins which they do as a separate study, after you have been found to have poorly functioning mitochondria and which seeks to establish specifically what is going wrong with the mitochondria.
In my case they found high level of nitrosamines and a moderate level of dimethyl butyrate ester, which I believe was derived from my fermenting gut (I wasn't taking statins)
Interestingly, my outer membrane structure was poor and the outer membrane Calcium 2+ level was very low.
 

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Sasha

Fine, thank you
Messages
17,863
Location
UK
I have now combined my two posts explaining OMF and OMI and divided them into smaller paragraphs and editied them a bit. I did it by editing my first post, so you can go back and check it out. I hope they are more useful and easier to read now.

Thanks, @Rose49 - that's very good of you! :thumbsup:

Edit: I've removed my earlier version to avoid confusion.
 

A.B.

Senior Member
Messages
3,780
An inability to generate enough energy to meet the demands of a normal life is a good way to describe my problem.

Trying to do that just results in feeling miserably exhausted and taking a long time to recover. And the sudden worsening for no apparent reason could be infections that would normally pass unnoticed (or some autoimmune flare, but maybe these too will one day be linked to infections). There does also seem to be an element of immune dysfunction, but again this could be a mitochondrial problem too.
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
My mitochondria were tested by Dr Myhill in the UK about 10 years ago and found to be only working at around 25%. She has done loads of work on this subject and it's relationship to ME/CFS and it's severity. Unfortunately I never found any of her treatments useful
Mine too, I believe that it was 2007 with me. However I do benefit from daily supplements that are the standard ones for the mitochondria but they still don't stop my energy running out at a maximum of 30 minutes of walking or exercise of any sort. D Ribose seemed to stir up the bad bugs in my gut so I don't take that.

There is T3 in the my thyroid medication which helps a lot with energy production but that has't solved the problem either.

I think this research sounds great and it's about time too!

Pam
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
I hope the potential link between antibiotic usage and the onset of ME is examined too. Back in the 80's and early 90s a number of people in the UK were, I am informed by the Septrim Support Group, awarded compensation for developing ME after taking the antibiotic.

This paper discusses how antibiotics damage the mitochondria: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3760005/

Bactericidal Antibiotics Induce Mitochondrial Dysfunction and Oxidative Damage in Mammalian Cells
Sameer Kalghatgi,#1 Catherine S. Spina,#1,2,3 James C. Costello,1 Marc Liesa,3 J Ruben Morones-Ramirez,1 Shimyn Slomovic,1 Anthony Molina,3,4 Orian S. Shirihai,3 and James J. Collins1,2,3,*

Bactericidal and bacteriostatic antibiotics have been shown to target mitochondrial components (1520). In mammalian cells, the mitochondrial ETC is a major source of ROS during normal metabolism because of leakage of electrons (21). Given the proposed bacterial origin of mitochondria (22), we hypothesized that bactericidal antibiotics commonly disrupt mitochondrial function in mammalian cells, leading to oxidative stress and oxidative damage. Previous work has shown that mammalian cells can be damaged by antibiotic treatment, but these results were shown at concentrations considerably higher than those applied clinically. At these high concentrations, select antibiotics inhibited cell growth and metabolic activity, in addition to impairing mitochondrial function in vitro (23, 24).


http://mobile.the-scientist.com/article/42414/widely-used-antibiotics-affect-mitochondria

“This is a straightforward and clear story,” said Cole Haynes, who studies mitochondrial dysfunction at Memorial Sloan Kettering Cancer Center in New York City. “It’s a nice job by the authors showing that tetracyclines really have mitochondrial consequences [scientists] have not thought about seriously.”
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
The one thing I dont get is what drugs are used to treat Mitochondrial Diseases?

I know all the supplements so.....

If I get Myers cocktails I feel more normal....but week from deconditioning
....this somehow points me in the direction of malabsorption..toxins...bacteria cause of IBS...

It deponds on what causes the dysfunction.

If it`s autoimmune, some kind of immunosuppressant/biologic
If it`s to do with metabolomics, maybe injections with metabolite x etc.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
I hope the potential link between antibiotic usage and the onset of ME is examined too. Back in the 80's and early 90s a number of people in the UK were, I am informed by the Septrim Support Group, awarded compensation for developing ME after taking the antibiotic.

I was one of those people who was very careful with antibiotic usage. I think I can count the number of times I took an antibiotic before ME onset on one hand. It's definitely possible to screw up the microbiome with abx, though, so this could surely be the trigger for some. :)

-J
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
@JaimeS I have edited and combined my posts explaining OMF and OMI. You can post the new version on MEAction. I tried to, but it put it over on the side so I don't think many people will see it. Please make sure it's the new version that I edited. Thanks.

Thank you so much! :)

Thanks, @Rose49 - that's very good of you! :thumbsup:

Edit: I've removed my earlier version to avoid confusion.

Thank YOU so much! ;)

-J
 

perrier

Senior Member
Messages
1,254
I hope the potential link between antibiotic usage and the onset of ME is examined too. Back in the 80's and early 90s a number of people in the UK were, I am informed by the Septrim Support Group, awarded compensation for developing ME after taking the antibiotic.

This paper discusses how antibiotics damage the mitochondria: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3760005/

Bactericidal Antibiotics Induce Mitochondrial Dysfunction and Oxidative Damage in Mammalian Cells
Sameer Kalghatgi,#1 Catherine S. Spina,#1,2,3 James C. Costello,1 Marc Liesa,3 J Ruben Morones-Ramirez,1 Shimyn Slomovic,1 Anthony Molina,3,4 Orian S. Shirihai,3 and James J. Collins1,2,3,*




http://mobile.the-scientist.com/article/42414/widely-used-antibiotics-affect-mitochondria
Thanks Countrygirl for this post. I hope Prof Davis and his group look at this.

My daughter was a perfectly healthy person, but contracted a pilonydyl cyst from an ingrown hair follicle. After they opened the cyst an infection ensued, a very serious one. They plied her with IV antibiotics, and it was then she picked C Difficile in our wonderful canadian hospitals. Dr Borody of Australian has studied these infections and has suggested they were the most virulent in Canada. My daughter had to take flagyl and Cipro for close to four months. She was bed bound the whole time. Eventually they said there was no evidence of cdifficile. But her health did not come back. Several months later she was diagnosed with CFS, severe form
 
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JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Thanks Countrygirl for this post. I hope Prof Davis and his group look at this.

My daughter was a perfectly healthy person, but contracted a pilonydyl cyst from an ingrown hair follicle. After they opened the cyst an infection ensued, a very serious one. They plied her with IV antibiotics, and it was then she picked C Difficile our wonderful canadian hospitals. Dr Borody of Australian has studied these infections and has suggested they were the most virulent in Canada. My daughter had to take flagyl and Cipro for close to four months. She as bed bound the whole time. Eventually they said there was no evidence of cdifficile. But her health did not come back. Several months later she was diagnosed with CFS, severe form

I can't 'like' that post @perrier , but thank you for sharing with us.
 

Justin30

Senior Member
Messages
1,065
Just gonna throw this out there again does anyone or can anyone point me in the direction of what Drugs are used to treat Mitochondrial diseases.....????

Want to do some research.

All I could find a list of supplememts
 

ErdemX

Senior Member
Messages
113
Location
Istanbul
Regarding to mitochondrial energy supplements, I've tried CoQ10, Mitoq, Acety-l Carnitine, NADH, D-Ribose, PQQ and some others that I don't recall now, most of them also in high doses. I had no improvement in energy.

Probably those supplements give extra energy to those people whose mitochondria is not broken..

Nevertheless, I think all this new information is exciting and promising.
 

Justin30

Senior Member
Messages
1,065
Regarding to mitochondrial energy supplements, I've tried CoQ10, Mitoq, Acety-l Carnitine, NADH, D-Ribose, PQQ and some others that I don't recall now, most of them also in high doses. I had no improvement in energy.

Probably those supplements give extra energy to those people whose mitochondria is not broken..

Nevertheless, I think all this new information is exciting and promising.

I tried all of those to accept mitoQ though I did try CoEnzyme Q10.

They work a bit for me so I take them accept PQQ makes me feel wired.

This supplement is supposed to help repair Mitochondria...that being said I dont think its strong enough:

http://ca.iherb.com/Nutricology-NT-...C_7JsSgUhcVk928205uIE6XwV2vx-6jqJeBoCVHXw_wcB

The most effective therapy I have done over everything else but it doesnt last is IV Push Myers Cocktail.

Tells me 2 things I dont absorb nutrients well and that I am not detoxifying properly.

I have the shot and 5 hours later I pee out like 2 litres of toxic sludge feel better for a couple days then blah....

It gives me more energy but I tend to crash from it cause I over do it....
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Regarding to mitochondrial energy supplements, I've tried CoQ10, Mitoq, Acety-l Carnitine, NADH, D-Ribose, PQQ and some others that I don't recall now, most of them also in high doses. I had no improvement in energy.

CoQ-10 has made a huge difference for me, but the dosing is far beyond what's recommended. You have to keep in mind that it's recommended for standard subjects. I take it at the dosages recommended for MS.

However, I've tried NADH and it makes me feel positively jittery and awful, and D-Ribose (and all other 'therapeutic sugars' I've tried) make me feel sluggish and miserable. You may have to find the exact cog your metabolism has slipped.

That said, if Naviaux is talking about his most recent research, he may be talking about drugs that are currently prescribed for autism that regulate purine absorption/metabolism. However, I'm not entirely sure that's the direction they're going.

Jaime
 

Justin30

Senior Member
Messages
1,065
That said, if Naviaux is talking about his most recent research, he may be talking about drugs that are currently prescribed for autism that regulate purine absorption/metabolism. However, I'm not entirely sure that's the direction they're going.

Any links to this info Jaime? Thanks for all the work you put into millions missing by the way.

I may try high dose coq10....

High dose IV Vitamin C seems to help a lot for me. Others have found this too. It at least keeps my bodily functions normalized just with out the complete normalization of energy levels.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Nah, I really can't say if I'm correct @Justin30 -- I'm waiting on Naviaux himself to give me a quote. I just read one of his publications that spoke about mitochondrial dysfunction and purines. It was posted here on PR... somewhere...

You are very welcome, @Justin30 ! :D It made a big difference to me to feel like I was working towards change with this illness.