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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!
Also: 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 and Director of the Stanford Genome Technology Center, 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. And 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.
 
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justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Also: 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 and Director of the Stanford Genome Technology Center, 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. And 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.
Thank you so much to your family and others for all their hard work. Im feeling quite desperate right now as the years roll by and my health gets worse...well you know how it is for patients. Just started having to use my wheelchair isndie the house as well as outside (although I don't go out often) :( Lets hope the research starts to make a difference soon. Have donated myself yesterday, just a small amount, but im sure f lots of people did that it would add up :thumbsup:
 

Janet Dafoe

Board Member
Messages
867
Thank you so much to your family and others for all their hard work. Im feeling quite desperate right now as the years roll by and my health gets worse...well you know how it is for patients. Just started having to use my wheelchair isndie the house as well as outside (although I don't go out often) :( Lets hope the research starts to make a difference soon. Have donated myself yesterday, just a small amount, but im sure f lots of people did that it would add up :thumbsup:
Thanks for much! We are very hopeful! And you are right, lots of small donations add up to a lot! I hope you feel better!
 

thegodofpleasure

Player in a Greek Tragedy
Messages
207
Location
Matlock, Derbyshire, Uk
FWIW, my numbers are very similar to yours (from 2010 testing) and I also had very high cell free DNA like @justy ---

d-ribose helps me a little, l-carnitine used to help some.

It's interesting that of the small number of people reporting their mitochondrial function test results here, 25% seems to be the common figure.
My Cell Free DNA result showed only a slight increase.
 

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Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
It makes sense to me that the mitochondria could be affected, from how I experience my own symptoms - reading a few years ago on mito disorders I thought it sounded a lot like my illness and of course Dr Myhill has been convinced of this for years. However I cant see how this ties in with immune issues (I certainly have those) for example reactivated viruses, high bacterial loads, autoimmune anitbodies, high levels of pro inflammatory cytokines etc, nd how it fits with the work of Fluge and Mella and B cells - anyone? (this is not my strong point so bear with me)

Hey Justy,

Have a read, when you get a chance, have a read of the following:

http://www.sciencedirect.com/science/article/pii/S1567724913002390


This is by Ron Davis's lead mitochondrial researcher Robert Naviaux, and is absolutely fascinating. This CDR response can potentially answer many of your, and our questions.

The immune system cells have mitochondria, so if they are not functioning correctly, at capacity etc, then the immune system will also not function as intended, and perhaps will not be able to fight off common viruses, or reactivated viruses. Bacteria and viral load may be the precipitating factor for CDR getting stuck, which causes a 'go slow' in the mitochondria so to speak.

The article explains the potential very well. I didn't even know mitochondria had this function until I read this, but now that I have, it makes a huge amount of sense.


B
 

paul80

Senior Member
Messages
298
I had the same test done with acumen 5 years ago. I checked the results and mine is 40%.

I'm a lot worse now though than i was then.

I think people are more likley to post if they have the same result as someone else, maybe that's why so many are 25%.
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
If we're going purely by Dr Naviaux's theory then production of ROS is a form of protection rather than a cause and anti-oxidants are not the solution.

Oxidative Shielding or Oxidative Stress?

Indeed @hixxy. But oxidative stress still causes damage. It is possible that we could have a protective mechanism that causes damage to the host.

It is only a possible theory on M.E at this point (CDR exists, but the mechanism hasn't been found in M.E yet). But it makes a lot of sense, to me. We just need to wait and see what they find. It's has been theorised before that perhaps the mechanism of M.E is a protective one.

I have had no benefit from antioxidants whatsoever. Or Pall protocol etc, fwiw. Do we know of anyone who has been cured or made significantly better by antioxidant protocols? (Serious question). I don't know of anybody. I don't think it's that simple. And then there is the heterogeneity of M.E.


B
 
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thegodofpleasure

Player in a Greek Tragedy
Messages
207
Location
Matlock, Derbyshire, Uk
Hey Justy,

Have a read, when you get a chance, have a read of the following:

http://www.sciencedirect.com/science/article/pii/S1567724913002390


This is by Ron Davis's lead mitochondrial researcher Robert Naviaux, and is absolutely fascinating. This CDR response can potentially answer many of your, and our questions.

The immune system cells have mitochondria, so if they are not functioning correctly, at capacity etc, then the immune system will also not function as intended, and perhaps will not be able to fight off common viruses, or reactivated viruses. Bacteria and viral load may be the precipitating factor for CDR getting stuck, which causes a 'go slow' in the mitochondria so to speak.

The article explains the potential very well. I didn't even know mitochondria had this function until I read this, but now that I have, it makes a huge amount of sense.

I am interested to know anyone's thoughts on how the findings in this paper https://www.dovepress.com/articles.php?article_id=26236 by Sonya Marshall-Gradisnik's group potentially relate to the perpetuation of the Cell Danger Response
 

hixxy

Senior Member
Messages
1,229
Location
Australia
I am interested to know anyone's thoughts on how the findings in this paper https://www.dovepress.com/articles.php?article_id=26236 by Sonya Marshall-Gradisnik's group potentially relate to the perpetuation of the Cell Danger Response

Funny you should say that. I've just sent one of the researchers an email asking how their research into TRP channels and "threat response" relates to Dr Naviaux's Cell Danger Response theory. I'm betting there's a really close relationship here. They seem to be knocking on the same door from different angles. I participate in their studies and they've been being quite tight lipped about it lately when having my blood collected, so I'm not sure how much they'll be willing to share.

I know one thing, as with all other researchers, they're struggling for funding to keep pushing research forward.
 

liverock

Senior Member
Messages
748
Location
UK

thegodofpleasure

Player in a Greek Tragedy
Messages
207
Location
Matlock, Derbyshire, Uk
Funny you should say that. I've just sent one of the researchers an email asking how their research into TRP channels and "threat response" relates to Dr Naviaux's Cell Danger Response theory. I'm betting there's a really close relationship here. They seem to be knocking on the same door from different angles. I participate in their studies and they've been being quite tight lipped about it lately when having my blood collected, so I'm not sure how much they'll be willing to share.

I know one thing, as with all other researchers, they're struggling for funding to keep pushing research forward.

This is potentially very exciting indeed. Hopefully it's a topic that will be discussed by researchers next week at the IiME research colloquium.
However, if you have any further questions that you might like to put to Sonya M-G, then I would happily oblige as I may well get the chance to talk to her at the IiME conference.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
@Rose49 - Thanks so much for the info! That's very helpful. :thumbsup:

A lot of us have problems with big blocks of text so I hope you don't mind that I've broken yours up for easier reading! If you'd rather replace your formatting with mine, you can just highlight my text below and copy and paste it into your original post (just click "edit" where it appears at the bottom of your post).



@Mary, my info was out of date! :)

@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
 

Mary

Moderator Resource
Messages
17,385
Location
Southern California
My mitochondrial function was tested by Dr John McLaren-Howard at Acumen Labs (via Dr Sarah Myhill) in August 2012.
Same result - only working at around 25% and non of the recommended treatments seemed to make any difference.

Actually I'm a little confused when you say you're working at around 25% - are you referring here to the 27.4% blocking of active sites? Mine was 47% blocked. I don't really see where it says at what percentage we are working, do you know what I mean? My actual numbers were close to yours, or so they seemed, but the percentages they came up with are quite a bit different.
 

msf

Senior Member
Messages
3,650
Rose49 said:
...a low "arrogance to intellect" ratio, as Ron puts it.

Isn´t saying you have a low arrogance to intellect ratio a rather arrogant statement?
 

msf

Senior Member
Messages
3,650
What if you are describing a team of people that you had a hand in putting together?

I was just having fun with words anyway.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Isn´t saying you have a low arrogance to intellect ratio a rather arrogant statement?
It means capable people who can get the job done, in an effective and efficient collaborative manner, without egos getting in the way. The opposite is people who are very good self-promotion propaganda machines who can't work collaboratively because they are more interested in promoting themselves than they are in science or in finding answers or in achieving genuinely ground-breaking outcomes. Think PACE as an example of the latter.
 
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