New Open Medicine Foundation Video: Ron Davis Reports on "Fast-Tracking" ME/CFS Research

[Hutan]

I have the greatest admiration for what the OMF are doing, and I support them financially every month, but removal of that quote would be something that I'd really support.

Yes, I'm a donor to and supporter of OMF too. The politics and the science of ME are minefields.

I hope the comments on the Crawley reference (including mine) haven't caused Ron and his team stress.

I thought Ron was looking very tired. I hope people around Ron and Janet will help them play the long game and take some time to rest. We need them to stay well.

 

[Ben H]

Hi guys,

All is okay. The video was sent out too early and was not meant to have gone live, hence why it was taken down. Nothing untoward! Same with the newsletter and therefore adjustments have been made.

It will be uploaded again, don't worry!


B

 

[perrier]

Yes, we are very lucky to have Dr. Davis working on this disease, such a smart, practical, driven man......thanks to the highest spirits for this.

There was a doc. about Warren Buffet on HBO Monday night. He has donated Billions to the Bill and Melinda Gates Foundation. They are working on many of the world's greatest health problems. It seems like a good idea for a Dr. from Silicon Valley reach out to the man who practically put a computer in every home for money to solve one of the world's most neglected and damaging diseases.

Has OMI reached out to the Gates Foundation? I think if the Gates heard Dr. Davis speak and heard/saw Whitney's story (along with the rest of our stories) they might be moved to donate to the research.
@Ben Howell

I was just thinking the very same thing. I think that for sure if Gates met Dr Davis he would try to help. Is there no way some billionaires could be contacted. AIDS received huge money.

 

[A.B.]

The OMF actively seeking out wealthy philantropists might just work.

There is an opportunity here to make a difference and there have to be philantropists around looking for the best way to make a difference.

 

[Riley]

The OMF actively seeking out wealthy philantropists might just work.

There is an opportunity here to make a difference and there have to be philantropists around looking for the best way to make a difference.

Especially being in Silicon Valley. This is a perfect opportunity for a tech philanthropist to finance something useful and innovative.

Plus I think your money goes a lot farther with this cause. That guy from google (or microsoft maybe) gave 100 million dollars for equipment to fight Ebola after the epidemic was mostly over. I applaud him for wanting to help, but lord knows where that money actually went. Think of how much science OMF could do with 100 million dollars!

 

[AndyPR]

The video is back, the reference to Crawley's study is no longer there. @Murph maybe edit your original post so that it links to this new version?

 

[TiredSam]

 

[Janet Dafoe]

Updated link to the video. We edited out the part about the prevalence study due to the problems noted in your comments and the distraction that caused from the message about the research. Thanks to you vigilant people:

 

[Janet Dafoe]

Yes, we are very lucky to have Dr. Davis working on this disease, such a smart, practical, driven man......thanks to the highest spirits for this.

There was a doc. about Warren Buffet on HBO Monday night. He has donated Billions to the Bill and Melinda Gates Foundation. They are working on many of the world's greatest health problems. It seems like a good idea for a Dr. from Silicon Valley reach out to the man who practically put a computer in every home for money to solve one of the world's most neglected and damaging diseases.

Has OMI reached out to the Gates Foundation? I think if the Gates heard Dr. Davis speak and heard/saw Whitney's story (along with the rest of our stories) they might be moved to donate to the research.
@Ben Howell

It's OMF. And yes we are working on this.

 

[Janet Dafoe]

Interesting, the video seems to have been taken down from YouTube and the post on the OMF FB page seems to have gone as well. I really hope it is so they can edit it and take out the mention of Crawley's study. No, she isn't named but, as others have said, she would find out eventually and we would then never hear the last of it "the OMF quoted my work, so I don't know what issue the patient population has with it" sort of thing.

I have the greatest admiration for what the OMF are doing, and I support them financially every month, but removal of that quote would be something that I'd really support.

Yes. We did just that!

 

[Tuha]

If prof. Davis is trying to invent some new cheap technologies which could serve to move ME research and also health science in generally we can try to create a project on Kickstarter. I think Kickstarter audience like new technologies projects.

 

[geraldt52]

If prof. Davis is trying to invent some new cheap technologies which could serve to move ME research and also health science in generally we can try to create a project on Kickstarter...

I know nothing about the ins and outs of Kickstarter, but that sounds like a fantastic idea to me, if someone has some experience doing such things and could organize it. If it can be about a novel technology which lacks any other financial support, with CFS only lurking in the background, it would be more likely to attract interest among people who would otherwise have zero interest in CFS...which, honestly, is most people.

 

[trishrhymes]

If prof. Davis is trying to invent some new cheap technologies which could serve to move ME research and also health science in generally we can try to create a project on Kickstarter. I think Kickstarter audience like new technologies projects.

I thought Kick-starter was used by private individuals or small companies wanting to fund early stages of a product development that could go on to be commercial, with the investors getting the promise of some reward if the development succeeds.

In Ron Davis's case the development is being done by a team in a University department. I'm not sure a university could use kick-starter, and what ownership rules are for products they produce.

They still need to raise funds to do the work, as for any research project, but it would normally come from a government body or charitable foundation like OMF.

 

[Murph]

If prof. Davis is trying to invent some new cheap technologies which could serve to move ME research and also health science in generally we can try to create a project on Kickstarter. I think Kickstarter audience like new technologies projects.

The super thin needle for injecting things into mitochondria is precisely the kind of technology that could create a bit of buzz and raise a chunk of funding. (Everyone can appreciate a simple concept like a super thin needle, and many would like to feel a bit more energy!)

However OMF is associated with Stanford and I suspect there may be rules about such crowd-funding. Would need to check. @Ben Howell ? Also Indiegogo might be a better platform for it? From what I see Kickstarter is more for art projects, and if your project is not fully funded it goes nowhere. Indiegogo has a few university research projects listed. There's also https://experiment.com/ and https://consano.org/ which are both specifically for funding research.

My understanding of the way these crowdfunding platforms work is you need a killer short video to capture attention. When I think film-makers and ME/CFS I think @JenB, but I'm sure there's many others out there! I have made a few videos myself even, I'd be happy to help. I think the hard part would be getting access to the engineers in question though, so someone located in or near silicon valley might be needed.

 

[ash0787]

Kickstarter is meant for products which consumers can buy

Ben and rose I have a question for when ron does his livestream thing that was mentioned about a month ago,
has ron encountered the stories of people that have experienced PEM with their 'CFS' but subsequently cured the illness for example when it turned out to be undetectable hypothyroidism ? what does he think about that in the context of current knowledge / research direction ? could it provide some sort of clues as to what causes PEM and what to look for when trying to find out what is altering the metabolism ?

 

[Heart Face]

This is great to hear, thanks to Ron for all his hard work. Thanks for amending too. So many people are ready to tear Ron to shreds for the smallest inaccuracy (they are so sick, but they don't die) We know what Ron meant, but when we need financing and so many people are unsupportive, it's got to be right to avoid the open criticism and damage chances of funding IMHO

 

[Janet Dafoe]

Thanks!

 

[Barry53]

I was just thinking the very same thing. I think that for sure if Gates met Dr Davis he would try to help. Is there no way some billionaires could be contacted. AIDS received huge money.

This might exclude the Gates Foundation as potential a source of funding:-

 

[Neunistiva]

ME/CFS truly is an orphan disease.

Gates Foundation probably doesn't fund health problems that occur commonly in developed countries because they assume government funding is covering that. I bet they can't even imagine there are million of desperately sick people in rich countries who are left on their own.

(I shudder to think of hundreds of thousands, if not millions, of severe ME/CFS patients in poor countries. Despite having almost no life to live, I at least have warm bed and food every day.)

 

[Sasha]

Just got this as part of an email from OMF (broken up for readability, with my bolding):

Dr. Davis' Genetics Component update:

"Our lab has received immune cells from the patient samples of Dr. Naviaux’s metabolomics study. We will conduct extensive DNA sequence analyses looking for alterations in the sequence that indicate decreased functioning of genes that might correlate with the variations in the metabolic results.

The goal is to determine if some of the differences in metabolites seen between patients can be explained by genetic differences.

This analysis may explain some of the varied symptoms experienced by patients. It is possible that what appear to be subtypes of this disease are caused by genetic differences interacting with a basic metabolic process.

There could be a fundamental mechanism common to all ME/CFS patients. We would like to find a treatment that impacts a fundamental mechanism."

Ronald W. Davis, PhD

Interesting point there - we've been thinking for some time that there could be a dozen or more diseases under the ME/CFS umbrella but what if it's just one after all?