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Open Medicine Foundation (OMF)
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LarsSG
Senior Member (Voting Rights)
A strange video, seems they still haven't managed to test the nano-needle on blood from people with other diseases, still talking about making it cheap, but stalled on further development because NIH won't fund the electrical engineering. More on a RBC deformability device, but nothing new. Also, looking for viral or other infectious DNA or RNA in blood, stool, etc. Something about neutrophils, but it seems like just something they are looking at.
I used to be a big believer in 2017 in what Ron Davis was doing. It seemed like he had the proper credentials and equipment to do proper science and it seemed that he was building something solid. But alas, i was naive. Sometimes you need a reality check i guess. In hindsight, Janet talking on phoenixrising about how they were hoping to find a cure in a few months was a red flag.
This long awaited video update is the final nail in the coffin.
- The first thing he talks about is pathogens. Once again, they think the illness can be caused by a chronic infection. They are going to once again look in the blood for pathogens. For the 200th time. We have never found anything there, why don't we look in the tissues and CSF? Many researchers including dr. Nath from the NIH have said that pathogens residing in the tissues do not necessarily end up detectable in the blood. An example of this (if i remember correctly) is Measles encephalitis. I have myself talked to many researchers who are experts in metagenomic analysis and most of them think the technique is nowhere near sensitive enough to find viruses in the blood if they are hiding inside the cells in certain tissues. We have been stuck on this basic point for decades and we cannot even figure out if there are persistent pathogens or not in the patients. I understand that tissue and CSF studies are invasive, but if we are not going to do something properly we might as well save ourselves the trouble and not do it at all.
- If the nanoneedle test is reliable as he claims, why has nobody else tried to replicate this result (especially with all the long covid funding)? Nobody at all? Still hasn't been tested in other illnesses because they want to develop a more efficient instrument first (can only do two samples at a time) and the NIH doesn't want to fund it. But OMF has millions laying around. They have the money. So now he came up with the excuse that actually it doesn't matter how much money the patients put in, if they don't get an NIH grant the electrical engineer that is building this new instrument will be kicked out of the university lab. I'm sorry but this just seems ridiculous to me. If they have the money, which they do, and the thing is so promising (remember the p value?), how is it possible that not a single university professor, company or anyone else is willing to give them a lab to work in? With all the connections Ron has at Stanford (apparently he is also funded by a billionaire) he cannot achieve this? How can this be possible? This work has been stalled for like what 4 years now?
- He also says they cannot get patients with other illnesses to analyze their samples. Again, with all the connections it seems a bit difficult to believe.
- Red cell deformability - still stuck developing a device, slow progress because the guy working on it "doesn't have much capacity".
- What happened to the metabolic trap? No updates. 3 years ago he said in a symposium he "was convinced it's the metabolic trap". The genetic testing in all the 70 patients confirmed it. No follow up? It's a simple genetic test, what could possibly be the holdup. Janet said on twitter the UK biobank data doesn't confirm this finding because (she claims) the UK biobank patients do not really have ME/CFS. So why not get some more carefully selected patients, maybe in different countries and try to see if there is a statistical difference. I know many associations in many countries that would be happy to collaborate on this. Nothing has been done. Could it be because they are afraid the result would not be replicated?
- Remember the "something in the blood"? No updates.
- He talked about looking at neutrophils, another device needs to be constructed for it. He "hopes the OMF will support it". At the moment it's hung up "because of the pandemic". I hope it doesn't turn out like the fluorescent microscope saga where they claimed to be stuck for a whole year because they couldn't afford a 30K $ microscope. Speaking of, what happened to that?
- No updates on the FDA approved drugs they were testing.
This video could have been from 4 years ago and aside from him talking about the pandemic we wouldn't even notice. It is not my nature to be confrontational but i think it's about time patients start holding OMF accountable, considering all the money that has been raised.
Ron appears to want this device to cost very little, so I am assuming that’s why he won’t put it in a company, raise capital and develop it as a product. Or — it’s bc it’s just not reliable enough to form a company on? I would prefer the device cost money and existed in the world as an approved diagnostic than cost a few dollars and was stuck in some researchers lab, uncommercialized. Surely insurers, Medicare, NHS etc will pay for tests using an FDA and EMA approved device — so why is the cost such a big deal?
LarsSG
Senior Member (Voting Rights)
More importantly, who cares what the device costs if all it tells us is this person is sick in some unspecified way. They've yet to show if the nano-needle indicates ME or just some general state of illness. If all it does is the latter, it doesn't matter what it costs, it isn't going to be widely used (unless someone else comes up with another clinical use for it that probably wouldn't be directly related to ME). We can hope that it indicates something more specific, but they need data to show if that's the case or not.
It completely boggles my mind that they have been talking about the electrical engineering of the nano-needle for more than five years and yet they have not managed to run any tests with blood from people who have other diseases over those five years.
It completely boggles my mind that they have been talking about the electrical engineering of the nano-needle for more than five years and yet they have not managed to run any tests with blood from people who have other diseases over those five years.
More like they have to rule it out, rather than they think it’s a cause.
OMF has raised about $35 million. Probably need about 10 times that to make decent progress. For example, cystic fibrosis (cystic fibrosis foundation) for which they found the gene in 1989, has raised billions of dollars, and currently have a 500 million dollar campaign—they have been making progress on treatments for CF.
https://www.cff.org/node/1441
Here’s Janet (Ron’s wife) from YouTube comments
“Janet Dafoe45 minutes ago
Unfortunately this interview didn’t quite ask the right questions of Ron. There are quite a few things that he’s very excited about happening in the lab and having to do with a metabolic trap and a few other things. I will try to interview him myself and get that stuff out there. Please don’t lose hope. We are very hopeful.”
“Janet Dafoe45 minutes ago
Unfortunately this interview didn’t quite ask the right questions of Ron. There are quite a few things that he’s very excited about happening in the lab and having to do with a metabolic trap and a few other things. I will try to interview him myself and get that stuff out there. Please don’t lose hope. We are very hopeful.”
Am also confused that Ron said being up all night and asleep during day typical for ME patients. Not for me. Is it really typical for many? I haven’t heard many say this. More that people when severe cannot fall asleep (insomnia) which did happen for me at my worst.
There’s a discussion thread about sleep here https://www.s4me.info/threads/sleep-problems-in-me-cfs-discussion-thread.23020/
alktipping
Senior Member (Voting Rights)
i have had this sleep reversal since i first got sick .the first decade of practising so called sleep hygiene just made things worse .
Agreed. It is absolutely ridiculous. They have been talking the last 5 years about making a more efficient nanoneedle instrument and every time they have an excuse. First it was funding, now it's tenure. Just use the machine you already have if you cannot make a better one for goodness sake! So what if it can only do 2 samples at a time. It's been 5 years!!! You have had more than enough time to analyze samples from other illnesses, no matter how slow the machine is.
I can't help but think they already have tried analyzing patients with other illnesses, some of them tested positive, they didn't like that so now we are being strung along. Same with the metabolic trap: The UK biobank data didn't confirm the findings so now instead of testing new patients they just stalling for as long as they can.
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I see the tag line of OMF is 'Leading Research. Delivering Hope'. I'm not sure how long that has been there.
As Mango said a while back, for many of us, hope that doesn't harm needs to be based in reality. Hope is lost if there is no credible evidence of progress.
I would hope that the aim of OMF is in fact not to deliver hope, but, eventually, to deliver knowledge.
In my discussions with patients over the years its not common under 3 years of illness, and very common over 10 years of illness. That was my pattern for like 20 years, after an initial 30 years or so without it, just insomnia or hypersomnia. His views are probably formed more from severe patients than mild patients, and this might be an issue that becomes worse the more severe the illness becomes. We lack the proper research to say anything definitive.
In the last five years or so my inverted circadian rhythm has become shattered, there are times when I do not have an inverted sleep cycle or any sleep cycle. Also for most of the last two decades or so I will rapidly go into non-24 if my sleep shifts, and it only stabilizes inverted, and even then only for a few weeks or so.
Yes, that video is a bit concerning, especially in the context of the vagueness of reports from other OMF funded researchers
In my past life, I was involved in investment funds. Institutional investors could be brought in on a good story, hope and having people that seemed to have relevant expertise. But to maintain credibility, the investment organisation had to continually, accurately report progress.
I think that OMF needs to work a lot like a good investment fund. Reporting looks to be something that OMF could improve. Chats from researchers are good, we get a sense of the person and their dedication. But we also need metrics - clarity around what projects have been funded, what are the milestones, what other funds have been obtained to bolster progress on the projects. This vagueness about what is being done, and what is being proposed, and timeframes - it's not helping OMF's credibility.
I've had it said to me that patients are not who OMF is really targeting its communications to - the tiny amounts of money that most patients are able to contribute don't make the difference. I think that's wrong though. Some patients do have sizeable amounts of money to contribute, or can influence those who do. And any smart potential investor is going to look at what people are saying about the organisation, as well as the shiny promotional material. I think we need to see OMF being more accountable; it needs to lift its game with respect to clear reporting. I want OMF to be successful - to achieve that, I think it needs to show patients more respect by being transparent. I'd also like to see it acknowledging the feedback it is getting, and engaging better with people with ME/CFS.
In my past life, I was involved in investment funds. Institutional investors could be brought in on a good story, hope and having people that seemed to have relevant expertise. But to maintain credibility, the investment organisation had to continually, accurately report progress.
I think that OMF needs to work a lot like a good investment fund. Reporting looks to be something that OMF could improve. Chats from researchers are good, we get a sense of the person and their dedication. But we also need metrics - clarity around what projects have been funded, what are the milestones, what other funds have been obtained to bolster progress on the projects. This vagueness about what is being done, and what is being proposed, and timeframes - it's not helping OMF's credibility.
I've had it said to me that patients are not who OMF is really targeting its communications to - the tiny amounts of money that most patients are able to contribute don't make the difference. I think that's wrong though. Some patients do have sizeable amounts of money to contribute, or can influence those who do. And any smart potential investor is going to look at what people are saying about the organisation, as well as the shiny promotional material. I think we need to see OMF being more accountable; it needs to lift its game with respect to clear reporting. I want OMF to be successful - to achieve that, I think it needs to show patients more respect by being transparent. I'd also like to see it acknowledging the feedback it is getting, and engaging better with people with ME/CFS.
Art Vandelay
Senior Member (Voting Rights)
I'm glad to see I'm not the only one who has problems with OMF's messaging and transparency. The lack of information is leading to rumour and speculation.
Rumours have been circulating online along these very same lines from people who claim to have inside knowledge. I won't reproduce them here.
Moreover, what happened to Mark Davis' work on t-cell clonal expansion? As far as I can see, there's been no update since 2018 apart from (yet another) rumour that someone from OMF said at a conference that they failed to replicate the finding.
ETA: and if findings haven't been replicated, they should at least be publishing these results somewhere (even on their website).
Rumours have been circulating online along these very same lines from people who claim to have inside knowledge. I won't reproduce them here.
Moreover, what happened to Mark Davis' work on t-cell clonal expansion? As far as I can see, there's been no update since 2018 apart from (yet another) rumour that someone from OMF said at a conference that they failed to replicate the finding.
ETA: and if findings haven't been replicated, they should at least be publishing these results somewhere (even on their website).
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Yes.
Thinking about the investment fund analogy, I think a problem with OMF is that it has pushed the 'celebrity researcher' angle too much, most obviously with the Davis/Dafoe family, but generally. If a fund manager is reporting to investors, they shouldn't focus on the project managers, they should focus on the projects.
So I think it would be better to see videos about specific projects - what are the aims, how big is it, what will be done, why is it important? When will there be updates, when will the results be published, who are the researchers involved, why are they qualified to do this work? who is on the patient advisory team for the project? What is the budget, what is OMF contributing, have funds been obtained from elsewhere to create leverage of the OMF investment? And then there's an update, and later, an explanation of the published paper.
These videos need to be presented by people who know what they are talking about - not the researchers, but a smart science communicator who really understands the project and can splice in comments from the relevant people. I don't want the researchers to be responsible for getting the messaging right, partly because they have important work to do, and partly because so often they aren't very good at it. It doesn't help us if they are distracted trying to craft a promotional message, and then later distracted when the feedback about their effort is largely negative.
There needs to be a beginning and an end to each project - a getting in and a getting out as quickly as is possible. Most of the time, something needs to be published. Funding by OMF, at least the final tranche for a project, should be contingent on the scientist publishing something. Publishing about a project gives everyone a chance to learn something. It's ok if the result was that the idea was a dead end, at least for now. That doesn't kill hope. It's this holding on to dead projects until they start to smell really bad that kills hope, because the hope lies in OMF being a competent research programme manager.
Thinking about the investment fund analogy, I think a problem with OMF is that it has pushed the 'celebrity researcher' angle too much, most obviously with the Davis/Dafoe family, but generally. If a fund manager is reporting to investors, they shouldn't focus on the project managers, they should focus on the projects.
So I think it would be better to see videos about specific projects - what are the aims, how big is it, what will be done, why is it important? When will there be updates, when will the results be published, who are the researchers involved, why are they qualified to do this work? who is on the patient advisory team for the project? What is the budget, what is OMF contributing, have funds been obtained from elsewhere to create leverage of the OMF investment? And then there's an update, and later, an explanation of the published paper.
These videos need to be presented by people who know what they are talking about - not the researchers, but a smart science communicator who really understands the project and can splice in comments from the relevant people. I don't want the researchers to be responsible for getting the messaging right, partly because they have important work to do, and partly because so often they aren't very good at it. It doesn't help us if they are distracted trying to craft a promotional message, and then later distracted when the feedback about their effort is largely negative.
There needs to be a beginning and an end to each project - a getting in and a getting out as quickly as is possible. Most of the time, something needs to be published. Funding by OMF, at least the final tranche for a project, should be contingent on the scientist publishing something. Publishing about a project gives everyone a chance to learn something. It's ok if the result was that the idea was a dead end, at least for now. That doesn't kill hope. It's this holding on to dead projects until they start to smell really bad that kills hope, because the hope lies in OMF being a competent research programme manager.
The more I see of celebrity anything, in any context, the more I think we should stay away from it.
Seems too often a problematic and costly way to do things, including to the celebrities themselves.
Particularly in a highly contentious and charged debate, on the most serious of matters.