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

Sasha

Fine, thank you
Messages
17,863
Location
UK
Thank you so much!

Hi, Janet - thanks so much to you and Ron for attending the protest! Very exciting to hear what Ron said about the research.

I'm awake now (UK!) and can edit my post too, if @Sushi has gone to bed now. If you PM me the text you want to replace our version, I'll replace it in my original text.

@Marky90, can you also replace the text in your original post once we've got Janet's, if Sushi has gone to bed?
 
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Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
just donated $75 - around £53. 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

Same here @clive powney

No results from all the usual mito supps either.

However new research from Ron Davis's mitochondrial man, Robert Naviaux, could explain all of this, potentially via the CDR mechanism.

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




B
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
@Sasha (or anyone!) - I have a question, it feels rather dumb, but anyways, are the Open Medicine Institute in Mountain View and the Open Medicine Foundation in Agoura Hills (per its website) related? The names are way too similar for different entities. I'm going to make a donation to the OMF but I think in the past I may have donated to OMI, thinking it was OMF .......

Also I'm a little confused (I guess I'm just foggy today!), I thought OMF was up north in Stanford perhaps? And Ron Davis was at the San Francisco event. But Agoura Hills is in southern California --
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
@Sasha (or anyone!) - I have a question, it feels rather dumb, but anyways, are the Open Medicine Institute in Mountain View and the Open Medicine Foundation in Agoura Hills (per its website) related? The names are way too similar for different entities. I'm going to make a donation to the OMF but I think in the past I may have donated to OMI, thinking it was OMF .......

Also I'm a little confused (I guess I'm just foggy today!), I thought OMF was up north in Stanford perhaps? And Ron Davis was at the San Francisco event. But Agoura Hills is in southern California --

Not a dumb question at all! Yes, they're related - as I understand it, the OMF is a foundation that supports the OMI. I tried just now to find a page to explain it on the OMF site but couldn't - @Rose49, can you help?

Meanwhile, here's mention of the OMF on an OMI page.

Edit: Turns out my information was old! Here's clarification from Janet Dafoe:

http://forums.phoenixrising.me/inde...itochondrial-problem.44821/page-4#post-729132
 
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thegodofpleasure

Player in a Greek Tragedy
Messages
207
Location
Matlock, Derbyshire, 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

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.
 

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justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
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.
Yep me too - 25%, membrane translocation issues amongst other things and a massively high cell free DNA - like someone n chemo. None of the treatments helped me...
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
Not a dumb question at all! Yes, they're related - as I understand it, the OMF is a foundation that supports the OMI. I tried just now to find a page to explain it on the OMF site but couldn't - @Rose49, can you help?

Meanwhile, here's mention of the OMF on an OMI page.

Thanks Sasha! It occurred to me that it was probably something like that, and I just didn't have the wherewithal to try to figure it out today :confused:
 

Mary

Moderator Resource
Messages
17,335
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.

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. Well, crossing my fingers for Ron Davis and OMF!
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
@Sasha (or anyone!) - I have a question, it feels rather dumb, but anyways, are the Open Medicine Institute in Mountain View and the Open Medicine Foundation in Agoura Hills (per its website) related? The names are way too similar for different entities. I'm going to make a donation to the OMF but I think in the past I may have donated to OMI, thinking it was OMF .......
Hi Mary, I'm slightly confused as well.

The OMF is definitely a non-profit foundation and is the place to make donations.

But i don't understand what the function of the OMI is, or its relationship to the OMF. The OMI website lists Ron as the board director but, today on Twitter, Janet Dafoe seemed quite adamant that Ron's work is related to the OMF, and not the OMI (unless I misunderstood). Perhaps the OMI is mainly a private clinic and is the clinical (patient-focused) part of their work, and perhaps it doesn't carry out research? (It seems to be based in a hospital.) Hopefully Janet will return to this thread and might be able to clear things up for us.

The OMF is the place to make donations.

Also I'm a little confused (I guess I'm just foggy today!), I thought OMF was up north in Stanford perhaps? And Ron Davis was at the San Francisco event. But Agoura Hills is in southern California --
Ron Davis and Janet Dafoe are based in Palo Alto, which is right next to Stanford, both of which are in (northern) California, not too far from San Francisco. The OMI website says it is based in Mountain View, California, which is near Stanford. And the OMF website says it is based in Agoura Hills, (southern) California. But a registered headquarters address doesn't tell you where the main activity is based - it can just be a postal address.
 
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Vasha

Senior Member
Messages
119
Hi Mary, I'm slightly confused as well.

The OMF is definitely a non-profit foundation and is the place to make donations.

But i don't understand what the function of the OMI is, or its relationship to the OMF. The OMI website lists Ron as the board director but, today on Twitter, Janet Dafoe seemed quite adamant that Ron works with the OMF, not the OMI. Perhaps the OMI is mainly a private clinic and is the clinical (patient-focused) part of their work, and perhaps it doesn't carry out research? (It seems to be based in a hospital.) Hopefully Janet will return to this thread and might be able to clear things up for us.

The OMF is the place to make donations.


Ron Davis and Janet Dafoe are based in Palo Alto, which is right next to Stanford, both of which are in California, not too far from San Francisco. The OMI website says it is based in Mountain View, California, which is near Stanford. And the OMF website says it is based in Agoura Hills, California. But a registered headquarters address doesn't tell you where the main activity is based - it can just be a postal address.

Hi @Bob and @Mary --

---
UPDATE by Vasha--my info was out of date with regard to the independent foundation, OMF--see @Rose49 's post below for the full story.
Thanks @Rose49 and everyone at OMF for all you are doing for us!

The salient point remains: donations to OMF. :)
--

Yes, they are connected entities. OMI is an umbrella organization that includes the clinic, as well as some testing services and things they provide to other service providers. That is where those of use who see Drs Kaufman and Kogelnik go.

OMF is the research foundation arm. This is indeed where to donate.

Research, as I understand it, is happening within the same building as OMI, at labs at Stanford (just up the road), and maybe other places. (Mountain View/Palo Alto/Stanford are all connected suburban entities in Silicon Valley. Stanford is the university of course; it has its own post code.)

I give samples for the research every time I can when I go for an appointment. :)

I think OMF is listed in Agoura Hills because that is where Linda Tannenbaum is--as someone noted, it can be incorporated there but have the research happen further north.

There used to be just one website, but as they have grown and developed and gotten the foundation off the ground, now there are two:
http://www.openmedicineinstitute.org/
http://www.openmedicinefoundation.org/

Hope this is accurate and that it helps! I think the main thing is that donations go to OMF, so far as I can tell. :)

-Vasha

edited to clarify a bit and add the links.
 
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