What is Ron Davis' financial relationship with OMF?

[Davsey27]

I've noticed that Dr. Ron Davis doesn't respond to ideas from patients, only researchers. I sent him an email about immunotherapy for ME that was never responded to. Also, I think his ME foundation OMF demands all patent rights and ownership be surrendered which it very intimidating. Does he take a salary from the foundation? Does he have any ownership of it and/or agreement of a percentage of revenue derived from patents? Where are their financials?

I sent a brief discussion of the immunotherapy approach I am working on in the email that went unresponded to. I won't waste time sending detailed information to people who show their lack of interest by not even bothering to respond to an email. Also, I have some concerns about the ownership rights post-research in their agreement. Surrendering ownership to OMF will just deter a lot of self-experimenters who may discover new knowledge.
@Janet Dafoe

Good questioning Mr Gbells.I don't know much about the politics but it would be nice to get nice to get some more patient involvement

 

[jaybee00]

I don't see why price would matter since an approved therapy/cure would be covered by insurance anyway.

Yeah, those well-functioning government health insurance programs in Pakistan, Democratic Republic of the Congo and Egypt are sure to cover the costs of any treatment. Come on, dude.

 

[JES]

But given the big improvements some ME patients see treating individual chronic viruses like enterovirus and EBV with antivirals it seems this is the direction with the most promise and the shortest time to research (apoptosis inducers). There is no point re-inventing the wheel if you just have to tweek nature a bit chemically to get the result you need.

Davis has tested his severe group of ME/CFS patients against all DNA viruses, they found that ME/CFS patients had on average less DNA viruses than healthy controls, quote from this article below:

By comparing the DNA sequences of the microorganisms they found to the DNA of all known microorganisms, the researchers could find if patients had elevated levels of any known microbe. Scientists can even identify organisms no one has ever studied before, finding close DNA relatives to microorganisms by scanning for partial matches. However, they found no unusual microorganisms, or evidence that there was a significant difference in microorganism population between patients and healthy controls.

I don't totally disagree that they should perhaps focus more on researching the hypothesis that pathogens cause ME/CFS, but I think they are still at a stage where they try go generate hypotheses based on observations and pursue forward with the most promising ones. If they cannot find the viruses, it's a major issue that should be addressed first before putting all eggs into one basket.

 

[gbells]

Davis has tested his severe group of ME/CFS patients against all DNA viruses, they found that ME/CFS patients had on average less DNA viruses than healthy controls, quote from this article below:


I don't totally disagree that they should perhaps focus more on researching the hypothesis that pathogens cause ME/CFS, but I think they are still at a stage where they try go generate hypotheses based on observations and pursue forward with the most promising ones. If they cannot find the viruses, it's a major issue that should be addressed first before putting all eggs into one basket.

That would explain their blind spot. I think they were just doing PCR testing of blood, not tissue biopsies. That isn't sensitive for already infected, immortalized tissue cells. Antibodies and a short lifespan for RBCs would be expected to prevent DNA blood detection.

Gow et al. reported on the detection of enteroviral RNA in muscle biopsies from 53% of 60 ME/CFS in comparison to 15% of 41 controls [93]. Furthermore, quadriceps muscle biopsy samples from 20.8% of the 48 ME/CFS patients were found to be positive for enterovirus sequences by reverse transcription (RT)-PCR, while all 29 control samples were negative [94]. In a study by Bowles et al. [95], molecular hybridization detected enteroviral RNA in muscle biopsies from 41 of 148 patients with ME/CFS, 25 of 96 patients with inflammatory muscle disease, and only two of 152 controls. In an earlier study, the same group had postulated that the enteroviral persistence in the muscle might be caused by a defect in the control of viral RNA synthesis as they found approximately equal amounts of enteroviral positive and negative RNA strands, in contrast to lytic infections, in which positive RNA strands dominate [96]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6167797/

 

[Abrin]

What we need are protests to get NIH to pony up the money.

People have been protesting. ME/CFS and Fibromyalgia Awareness Day began in 1993!

The biggest problem is it is hard to show up in real numbers when a huge percentage of the people are bedridden.

 

[gbells]

People have been protesting. ME/CFS and Fibromyalgia Awareness Day began in 1993!

The biggest problem is it is hard to show up in real numbers when a huge percentage of the people are bedridden.

Online petitions, viral videos, etc.

But it won't do any good if the university researchers are barking up the wrong tree. Which would explain the lack of progress.

 

[Abrin]

Online petitions, viral videos, etc.

I highly encourage you to organize any and all of these if you believe you will be able to bring better awareness and action then what has been going on previously.

But it won't do any good if the university researchers are barking up the wrong tree. Which would explain the lack of progress.

What would also explain the lack of progress is if this condition is outside our current medical awareness. It wouldn't be the first time that happened.

 

[Peterz]

Quote from gbells:
"I think they were just doing PCR testing of blood, not tissue biopsies. That isn't sensitive for already infected, immortalized tissue cells."

https://bpa-pathology.com/covid19-pcr-tests-are-scientifically-meaningless/

 

[gbells]

Quote from gbells:
"I think they were just doing PCR testing of blood, not tissue biopsies. That isn't sensitive for already infected, immortalized tissue cells."

https://bpa-pathology.com/covid19-pcr-tests-are-scientifically-meaningless/

This isn't relevant.

 

[Davsey27]

Good points here

I think the society as a whole needs to come around not just scientists.Starts from the bottom up

I wonder if at schools they had more students attend teacher and principles meetings if things be different and society would be more open

I think over the years that collectively people giving their power away to consumerism may contribute to a culture that is less concerned with CFS systemically

 

[maybe some day]

@gbells
Not sure how long youve been health challenged. Im pushing 30 years. My point is, OMF wasnt even around until recently. Before that, we would gets blips on the radar about this illness, but thats it. Forced to push through that maybe something will be around the bend. Years after years would pass.

Now I agree like many, that research should be faster, no doubt. But be aware, heres a man (Ron) who works tirelessly for you, us, and everyone globally. His son is very severe. He has a marriage, a family. Not to mention finding time for himself. Naturally, he doesnt have the resources to cover everyones concern.

Researchers could easily say f-it, it cant be solved, and leave us all. OMF put a bulls eye on the map for all the doubters in the medical field to take a second look

Just have an open mind, and see how far things have come, and will come.
Peace

 

[gbells]

Constructive criticism is never a bad thing. Effective leaders know this.

 

[Davsey27]

@gbells
Not sure how long youve been health challenged. Im pushing 30 years. My point is, OMF wasnt even around until recently. Before that, we would gets blips on the radar about this illness, but thats it. Forced to push through that maybe something will be around the bend. Years after years would pass.

Now I agree like many, that research should be faster, no doubt. But be aware, heres a man (Ron) who works tirelessly for you, us, and everyone globally. His son is very severe. He has a marriage, a family. Not to mention finding time for himself. Naturally, he doesnt have the resources to cover everyones concern.

Researchers could easily say f-it, it cant be solved, and leave us all. OMF put a bulls eye on the map for all the doubters in the medical field to take a second look

Just have an open mind, and see how far things have come, and will come.
Peace

Yeah that's true

I emphatise with him dealing with a severe son and
the nature of balancing life.Its a societal problem

 

[gbells]

From a public health standpoint I think we need research showing that HHV6 and EBV vaccination immunity can prevent mice from developing ME vs control group when intentionally infected. This would protect the kids and stop new cases at least.

 

[raghav]

How many grant applications have been submitted by OMF till now ? How many of them have been approved ? Ron Davis is over worked and so likely exhausting himself. So is he likely to become a single point of failure ? Maybe yes is my humble opinion. I feel OMF needs a major revamp. When people questioned Linda Tannenbaum for lack of accountability she said OMF only collects funds and is not accountable for results. It is supposed to be under the purview of researchers. I feel OMF needs a major revamp. Now I am ready for the brickbats.

 

[lenora]

How many grant applications have been submitted by OMF till now ? How many of them have been approved ? Ron Davis is over worked and so likely exhausting himself. So is he likely to become a single point of failure ? Maybe yes is my humble opinion. I feel OMF needs a major revamp. When people questioned Linda Tannenbaum for lack of accountability she said OMF only collects funds and is not accountable for results. It is supposed to be under the purview of researchers. I feel OMF needs a major revamp. Now I am ready for the brickbats.

B

I'm not questioning whether OMF needs a major revamp, it possibly does. I know it has done good work, provided not just good speakers, but people who have led incredible lives, gone on to write books and its attracting some of the best and brightest in America today. Maybe a change in that direction is needed; not one back to the days of old.

 

[percyval577]

Science can be supported ... ... ... but science can not be forced.

A researcher needs to follow his own uncertain ideas ... ... ... there is no other way.

Your opinion on immonotherapy, @gbells , is nothing else than this: an idea.


You can discuss different ideas of course, and this is needed, but if everybody thinks that his idea is the one which is the right one and researchers would take these ideas as fact ...

In my experience, after four years experimenting and reading any research, (my) CFS in its core turns out to be an imbalance of selenium (too low) and manganese (too high) actions on nerves, presumably in the putamen.

 

[gbells]

Your opinion on immonotherapy, @gbells , is nothing else than this: an idea.

I did an extensive medical history, have lab testing in support and am documenting results. The main thing is that it is consistent with other research and our understanding of viral pathophysiology. My opinion is not without some evidence, though it is early stage.

 

[jaybee00]

I feel OMF needs a major revamp. When people questioned Linda Tannenbaum for lack of accountability she said OMF only collects funds and is not accountable for results. It is supposed to be under the purview of researchers. I feel OMF needs a major revamp.

OMF can’t be held responsible for results any more than any other medical research charity can. Many billions of dollars are spent on cancer research, but millions still die of cancer.

OMF’s performance benchmarks need to be fundraising, not cures.

OMF *could* do a better job of providing regular detailed technical research updates—say twice per year, which could include a preview of upcoming milestones for the next year.

@raghav Also, one thing the Indian and Indian-American community could do to advance the cause is to pressure Vinod Khosla to step-up his philanthropy here. He has given to OMF, but can afford to give more. He is on twitter—get into his feed.

 

[lenora]

Online petitions, viral videos, etc.

But it won't do any good if the university researchers are barking up the wrong tree. Which would explain the lack of progress.

It doesn't do any good anyway....I've been in this game for about 34 years or more, and I can assure you of that one!