Ron Davis on Possibly Explaining (Almost) Everything in ME/CFS: The #MissingMillions Talk

Cort

Founder of Health Rising and Phoenix Rising
Staff member
"We can make a model for that (mitochondrial problems) and explain almost everything about what we see in this disease" Ron Davis

What an exciting presentation took place at the San Francisco #MissingMillions protest site on May 25th. Not only did Ron Davis of the Open Medicine Foundation say that he thinks (very early in the OMF's End ME/CFS project, by the way) that not only do they believe that they're really onto something, but that they're already pursuing compounds that might help and talking with drug companies.

Obviously, it's early days yet, but the OMF clearly believes they may have opened an important new beachhead in this disorder - one that could explain much.

First some ME/CFS and OMF news....

The Consortium Approach Wins Out

[fright]
Merger.jpg
[/fright]Ron must have been smiling when NINDS ME/CFS project director Vicky Whittemore outlined the broad strokes of the Working Group's strategy to reinvent ME/CFS research. About a year ago on one of her frequent trips to Washington, Linda Tannenbaum, the Executive Director of the Open Medicine Foundation, plopped Ron Davis's plan to end ME/CFS down on Vicky Whittemore's desk.

Whittemore's eyes widened: here was a comprehensive plan featuring some of the top researchers in the country. I wouldn't be surprised if the mere presence of this plan featuring these figures helped convince Whittemore ithat she could successfully push the NIH hard to take ME/CFS seriously.

The plan proposed that a consortium of researchers from across the country participate in a methodical effort to understand and cure ME/CFS. Yesterday, Vicky Whittemore proposed that the NIH fund a consortium of research/treatment sites that would work in unison to solve ME/CFS.


Big Data is In: Harvard / Stanford to Produce Unique Computer Program for OMF

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[/fleft]Ron Davis said he would get the best and he is. Two days ago the Open Medicine Foundation announced a partnership between Stanford and Harvard to develop a unique computer program to analyze the millions of data bits the End ME/CFS study is creating. The program, which will be used the first (Severely Ill Project) and the second phases of End ME/CFS program (examining more moderately ill patients), will be able to answer the following questions:
  • How do ME/CFS patients’ particular biological test results compare with or differ from healthy people and with people with other diseases?
  • Is there a biological footprint for ME/CFS patients, are there defined subsets, and how do they compare to healthy people or people with other diseases?
  • Will some treatments for other diseases of similar symptoms also work on ME/CFS?
Vicky Whittemore wants a central data network for the Consortium; could this be the model? Find out more here

Transcript of Ron's talk at ‪#‎MillionsMissing‬ protest in SF - From Janet Dafoe (Ron's Wife)

I’m Ron Davis and my son is missing.

Can you hear?

OK.

Haha, thank you.

Linda Tannenbaum has really helped us a lot in raising funding.

[fright]
Davis_Ron.jpg
[/fright]We have enough funding that we managed to assemble a very small team at the Stanford Genome Technology Center. This team is really excellent in doing research. And we are making progress.

Crowd: "yeeeey"

Now, it is very clear what is needed: We need more people doing research in this area. I don’t want all this money just to fund my own lab. I want to recruit other people in other labs that are specialists in things that need to be looked at. And we are now doing that.

Crowd cheers

I think that we are very close now to finding a molecular diagnostic marker.

Crowd: "yeeeeeeeeey!"

And we also think we have a bit of an understanding of what this disease is.

A lot of the ideas that have been around about what this disease is, I think are wrong.

And, it`s only because they look at one of the symptoms.

I think what this disease is, is a fundamental shutdown of the energy generation system in the body. And we can see that from all the molecules we look at. So our type of research is collecting massive data. And we have developed a lot of the technologies that in fact allow you to see massive amounts of data. And we have fantastic people to analyze that data.

And it really looks like it’s a mitochondrial problem. And in fact it doesn’t generate very much energy. And that can cause almost all the symptoms we see. We can make a model for that and explain almost everything about what we see in this disease. It explains the immune system problems; it explains the brain system problems, and so forth.

Now, the problem is of course, we have to figure out exactly what it is, and what’s going wrong. Probably we need more people to do that, and then we need to figure a way to undo it. We need to figure out a way to reactivate the energy generation system in the body.

I`m optimistic that we can do that, now that we can begin to understand what the problem really is. And so in fact we are actively pursuing compounds and drug companies that might offer some help. We want to do this on a fast track basis.

So we want to figure out what it is, figure out a way to do a diagnostic, and then look for things that might treat it. We want to do that as quickly as possible. I do NOT want to wait another thirty years.

But this is not gonna happen without what?

Crowd: GOVERNMENT FUNDING

Ron: Absolutely,

I have a lot of fights with the government about this, because I don’t think they actually understand research. The two grants that I put in, they didn’t like it because it had no hypothesis. I said "of course not!".

[fright]
NIH-funding-ME-CFS.jpg
[/fright]What you have to do when you start looking at a new disease is to make a lot of observations and figure out what it is. And from that you make a hypothesis and then do a test. They have it all wrong. They said they turn down a lot of grants because they don’t have a proper hypothesis. That’s not the way to solve this problem.

When we launched the Human Genome Project, we did not have a hypothesis. It was incredibly successful, and it’s totally revolutionizing medicine right now. So it’s going from one treatment fits all, to personalized treatment. And that is absolutely what we need for ME/CFS. We think that probably a lot of the patients are slightly different in their behavior, and this shutdown, and the consequences of that, and probably do need specialized treatment.

Once we figure out what it is and then some treatments, we also have to figure out a way to disseminate all those ideas to the medical community, so that everybody can get treated.. That’s a daunting task, and that’s not going to happen without what?

Crowd: GOVERNMENT FUNDING!
Ron: Absolutely,

But I am upbeat and optimistic that we will get somewhere.....if we can just get..

Crowd: GOVERNMENT FUNDING!

Ron: Absolutely, thank you.
 
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I've had a really rough couple of days (well weeks really) and I'm just about to go back to bed over here in the UK, but I'm so glad I read this before I did. I'm trying not to get too excited but could there be hope on the horizon . . . ?
Everything crossed, metaphorically at least as physically hurts too much.
 

HMBCheryl

Member
Thanks for posting this transcript! I was there, but missed Ron and the other speakers (Carol Head, Linda Tannenbaum and Janet Dafoe) because I was meeting with the Regional Director of HHS, along with 3 other people with ME/CFS. Although I'm not sure of the impact that meeting will have, I do know that the protest itself was amazing! So many courageous people, so many committed caregivers, such an empowering, uplifting experience! I feel more hopeful than ever that a change is coming for us!
 

Hello!

Well-Known Member
Thanks for posting this transcript! I was there, but missed Ron and the other speakers (Carol Head, Linda Tannenbaum and Janet Dafoe) because I was meeting with the Regional Director of HHS, along with 3 other people with ME/CFS. Although I'm not sure of the impact that meeting will have, I do know that the protest itself was amazing! So many courageous people, so many committed caregivers, such an empowering, uplifting experience! I feel more hopeful than ever that a change is coming for us!
What can you tell us about that meeting?
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Thanks for posting this transcript! I was there, but missed Ron and the other speakers (Carol Head, Linda Tannenbaum and Janet Dafoe) because I was meeting with the Regional Director of HHS, along with 3 other people with ME/CFS. Although I'm not sure of the impact that meeting will have, I do know that the protest itself was amazing! So many courageous people, so many committed caregivers, such an empowering, uplifting experience! I feel more hopeful than ever that a change is coming for us!
Glad to hear it Cheryl. Can you tell us more about the meeting?
 

Janet Dafoe

Active Member
Thanks for posting this transcript! I was there, but missed Ron and the other speakers (Carol Head, Linda Tannenbaum and Janet Dafoe) because I was meeting with the Regional Director of HHS, along with 3 other people with ME/CFS. Although I'm not sure of the impact that meeting will have, I do know that the protest itself was amazing! So many courageous people, so many committed caregivers, such an empowering, uplifting experience! I feel more hopeful than ever that a change is coming for us!
Cheryl and Cort,
I have some videos that people might like to see and hear but I'm not sure where to post them.
1. Ron's comment about Whitney, after Laurel spoke (maybe I should transcribe this)
2. Ron and me singing an Honor Song for the patients and for those who've died.
Still needed:
3. my talk
4. Laurel Crosby's talk.
We have video that includes Linda's talk, but it's not been transcribed. It's posted several places.
Any suggestions?
Janet
 

Laurie P

Member
@Janet Dafoe. (Does this mean Janet will get an alert? I don’t know how this works).

Janet, I can never thank you, Ron, Whitney and Ashley enough for the research that is happening, for your activism, your outreach, for allowing the public into your home and for Whitney allowing the public into his room. I can't wait until we're all being helped and Whitney is well enough to see and read and hear all of our well wishes and gratitude for his courage and activism. I can't wait until things are so much on the right course that you and Ron can take a long vacation! You are each in my heart. Thank you so very much.
 

Laurie P

Member
I was at Phoenix Rising reading about Ron Davis at the San Francisco Rally and people were making donations to the Open Medicine Foundation.

Here is the link for people in this forum who want to make donations:
http://www.openmedicinefoundation.org/donate-to-the-end-mecfs-project/

(I'm going to repost what I posted at PR.)

People can also help support the Open Medicine Foundation by choosing the Open Medicine Foundation as their charity when they shop online; at stores such as AmazonSmile, who will donate a percentage of their purchase price to the charity of their choice.

Tell everyone about our greatest, most wonderful, bravest advocate, Whitney Dafoe. Tell everyone about the extraordinary Davis-Dafoe family. Tell everyone about the team of exemplary scientists and the work being done at the Open Medicine Foundation. Ask them to make direct donations to the Open Medicine Foundation and/or donations through online purchases.

We also need to stand together in demanding substantial funding for the essential work that the Open Medicine Foundation is doing researching severe patients and all patients. We desperately need research and outreach into the population of severe ME/CFS patients. Severe patients can't wait.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cheryl and Cort,
I have some videos that people might like to see and hear but I'm not sure where to post them.
1. Ron's comment about Whitney, after Laurel spoke (maybe I should transcribe this)
2. Ron and me singing an Honor Song for the patients and for those who've died.
Still needed:
3. my talk
4. Laurel Crosby's talk.
We have video that includes Linda's talk, but it's not been transcribed. It's posted several places.
Any suggestions?
Janet
Hi Janet!

If the video's are on Youtube you can download them into the comments section by clicking on the media button (under the font family button in menu bar). if they're not you could try including them as an attachment.

I hope we can get that video of you guys singing. What is an honor song?
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
@Janet Dafoe. (Does this mean Janet will get an alert? I don’t know how this works).

Janet, I can never thank you, Ron, Whitney and Ashley enough for the research that is happening, for your activism, your outreach, for allowing the public into your home and for Whitney allowing the public into his room. I can't wait until we're all being helped and Whitney is well enough to see and read and hear all of our well wishes and gratitude for his courage and activism. I can't wait until things are so much on the right course that you and Ron can take a long vacation! You are each in my heart. Thank you so very much.
I believe it will give her an alert. I'm a bit behind on this as well. (lol)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I was at Phoenix Rising reading about Ron Davis at the San Francisco Rally and people were making donations to the Open Medicine Foundation.

Here is the link for people in this forum who want to make donations:
http://www.openmedicinefoundation.org/donate-to-the-end-mecfs-project/

(I'm going to repost what I posted at PR.)

People can also help support the Open Medicine Foundation by choosing the Open Medicine Foundation as their charity when they shop online; at stores such as AmazonSmile, who will donate a percentage of their purchase price to the charity of their choice.

Tell everyone about our greatest, most wonderful, bravest advocate, Whitney Dafoe. Tell everyone about the extraordinary Davis-Dafoe family. Tell everyone about the team of exemplary scientists and the work being done at the Open Medicine Foundation. Ask them to make direct donations to the Open Medicine Foundation and/or donations through online purchases.

We also need to stand together in demanding substantial funding for the essential work that the Open Medicine Foundation is doing researching severe patients and all patients. We desperately need research and outreach into the population of severe ME/CFS patients. Severe patients can't wait.
Nicely said Laurie!
 

Laurie P

Member
This is the first time I've felt real hope since I've gotten ill 7 years ago...
same here, but I've been ill for 18 years
YES!! I believe his analysis so far is correct and I feel hope I have not felt before in the entire 40 years I have had this damn disease. WE NEED GOVERNMENT FUNDING!
I've been sick for 33 years; bedridden for almost a decade and I'm down to 98 lbs. now.

I am hopeful about this research too! 250 million dollars funding for this disease, Centers of Excellence, outreach to severe patients (including me) and the respect and care that we all deserve will give me even more hope!
 

Merida

Well-Known Member
The mitochondria question is interesting. Early on FMS researchers pointed out that about 70 percent of FMS patients have a mother who also has it. True for me. As I looked at the multiple structural issues in my maternal line, and in myself, I kept thinking that it was as if there was not enough 'energy ' in the developing fetus to complete various development stages completely and correctly. ( for example : small skull base, incomplete rotation of the gut, developmental hypoplasia of the maxillae, sacral hypoplasia as evidenced by small sacral holes, or foramina, heart malformations, and more).
 

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