Make Visible Podcast: Interview with CEO Linda Tannenbaum by Emily Kate Stephens
OMF BioQuest News
July 14, 2025
The following is a transcription of 10 minutes of an 65 minute interview that specifically spoke about ME/CFS biomarkers and the OMF BioQuest project to find a ME/CFS Biomarker Signature.
Emily Kate Stephens of Make Visible Podcast interviews Open Medicine Foundation Founder and CEO Linda Tannenbaum.
Largest Scale Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) Biomarker Study - BioQuest News
Key Points
* BioQuest will measure 1200 Samples, 600 with ME/CFS from repositories in Uppsala, Sweden and Harvard University against patients with other diseases to differentiate the diseases in order to find a ME/CFS Biomarker Signature (ME/CFS Biomarker Panel).
*BioQuest will measure Proteins, Metabolites, and Cytokines, because they can be turned into a commercial test.
* BioQuest has raised $ 1 Million dollars USD out of the $2.4 Million dollars needed to test the samples.
* Open Medicine Foundation has been approached to commercialize a test if they can validate a Biomarker Signature for ME/CFS
Transcription:
00:48:50 Emily Kate Stephens: “Let us touch on a new study. I don’t know how far you’ve got with this now. But a new large scale study that you are working on. That is the BioQuest study. You previously done at least eleven biomarker studies. Eleven studies to try and find a biomarker. And as I mentioned before you’re looking at the multi-omics, metabolites, (keurinine), and looking at mitochondrial function, there are so many areas of our systems that you are looking at. Can you tell me a little about how you are approaching the BioQuest study? Which is to try and find a biomarker for ME/CFS.
00:49:40 CEO Linda Tannenbaum: “That’s a good question. Specifically the other studies were really for looking for and at molecular cause and the molecular basis of the disease, hoping that something may show up as a biomarker or a diagnostic versus a actual project searching for a biomarker- as is BioQuest.
The reason we want to do BioQuest is most of the studies that have been done, including ours, including everybody’s, have been done with 20-30 people and we wanted to do something on a very large scale so that way it would have meaning, really looking for more of a biomarker signature. We know it’s not going to be a biomarker, like one thing. But looking for a Biomarker Signature and looking for patterns. And with A.I., we think that with these new tools looking at it like we’ve never been able to look at it before. So it’s now a good time to do a large-scale study like this and then have A.I. work it, to look for patterns across metabolomics, proteomics, and cytokines. You might have these three things are low, when these three things are high and together it’s a biomarker signature. And before with our eyes looking at the answers, we might not have been able to pick up those patterns. As much as, hopefully, A.I. tools will be able to pick up some patterns that we will not normally have done.
So the purpose of this, of course, is to test as many samples as we can, at the same laboratories, so we get rid of the variables between laboratories which we have seen because different researchers test at different laboratories, different mechanisms, different technologies, different results come up.
So we want to take about 1000 or 1200 samples, and half of them being ME/CFS. This will be a ME/CFS biomarker discovery study and take a look at half people that have the disease and then a lot of different people with different diseases that need to be differentiated with the disease.
If a person walks into a doctor’s office with symptoms, we want to know what the doctor needs to differentiate it from. So we want to use that as well. And then healthy, compared to healthy.
The advantage is we have enough samples that are already collected. And so from our studies that we have done in Uppsala, Sweden and frozen away in biobanks, and studies that have been done via other institutions that are now housed by NIH. We have access to samples that are already frozen away and collected. This saves a couple years of work collecting and recruiting and all the other work that needs to be done in doing that.
So it’s really low hanging golden fruit that we just couldn’t pass up. And no ones ever done anything in this scale.
So we want to take that many and do all the testing, take all the samples, collect all the samples together in one place and then test them all on the same system, same technology, and then compare the results and see what happens. So this is something that we are just in the process of tweaking which tests to do, how much the budget will be. We have already raised $1 Million dollars USD to do this because everyone knows this is so important to have a diagnostic signature. And this scale, if we can’t find it in this, then we’ll stop looking in the blood this way.
There are other people who are doing things, and we are also doing electronic medical records search which is another part.
So the BioQuest itself is literally testing samples and then doing a validation later one whatever Biomarker Signatures we find. Then doing a prospective study, either in another cohort that’s already collected or, depending on the results, or actually drawing new patients and seeing and validating it that way. Obviously is a whole other area that’s going to have to happen on the validation side. But additional to that, at the same time as that, we have actually 3 of our centres looking at the electronic medical record of patients and seeing if there is anything we could learn from the electronic medical record of all the tests that have been done and those are the clinical tests of course, not the research: metabolomics, proteomics. It’s looking at 2 different paths: one is the clinical side, pathology side, where the doctor has ordered tests and the results have come in the electronic medical record. The doctor has done an assessment. The person has written if the person knows if they had an initial viral infection, or if they had an exposure to mold, or they had something else that triggered it, that they think might have this. But we will learn a lot from the electronic medical record as well. And again, because A.I. is with us now with these tools, we are able to gather these de-identified information from electronic medical record now and really massage it and see if there’s questions we can ask it and see what other patterns might show up. There’s a whole other world that’s going to open up with us. We are very very excited about the new scientific A.I. tools that are coming up.
So these two together are two different paths, looking to see what we learn and what we can learn, either different subsets, or biomarker signature, what can we learn, when we look at all of these things together. “
00:54:48 Emily Kate Stephens: “It is incredible that we are doing this now, we, you are doing this now. I am saying we as the globe. It’s incredible that you are doing this. Now is the time we actually have the access to that. Because that is changing what you are able to pick up. And now you are able to find things you didn’t know you were looking for because of the nature of
Linda Tannenbaum: Exactly.
Emily Kate Stephens: “because of the way a human brain has to go through and see, I’m looking for this, but the A.I. approach is just absolutely fascinating and the scale to which it can be done is absolutely revolutionary.
My one question is that looking at all that multi-omics, that research side of it, is, if you find a Biomarker Signature, how do you then roll out something that involves that level of testing, that research level of testing, rather than a normal pathology level of testing? How do you create something then that is actually able to scale out to your average patient? Perhaps once they’ve been to see the General Practioner (GP). What do you call that in the States? Primary care doctor. And then perhaps they get referred to a hospital. How do you have that Biomarker Signature, that is then relevant to those patients who get tested at that stage who are not in a specialized clinic?
00:56:24 Linda Tannenbaum: “So that is the million dollar question. Literally. But we do know people that are interested and able to take, if we have something that’s validated, to translate it into a commercial type of test. And it depends on what it is. It depends on what the results are. If there’s something that can be done, to scale, and we’re able to, and it will be a long process, but the first benefit of course will be in research, because then you’ll be able to do it in research and be able to know exactly what patients you want to test, because you’ll be able to use this as a diagnostic.
And it will either be a algorithm that some of our researchers are looking into, there’ll be an algorithm of do all this testing and the algorithm will be the identifier or a group of tests that you go and get an anemia panel or a thyroid panel, and this is an ME/CFS panel which is the dream, we would like to have. It will be a path, but there are people who take information. Like there’s people in pharmaceutical companies to make a drug, there’s people that want to take the information of the laboratory results and create a commercial test.
But it has to be something that can be commercialized. So there’s some studies, that are being done that may show a suggested biomarker, but it’s not something that can be commercialized. And we need something that can be commercialized, not just in the research lab. We are looking in this area specifically, in metabolomics and proteomics because you can take proteins and metabolites, and make a commercial test, and cytokines, and make a commercial test out of it. So it depends, but there are people, that we will then approach, and have them take it. We hope they make a billion dollars on this later on. We want that to happen.
This is it. Then we share it and say, “Now you can get a test for this. Go ahead and get a test for this and let people know about it. “ Because then our most exciting forward issue would be how do we disseminate this information that this available and that is what we then hope we will be able to do. And focus on later. Getting it in the hands of doctors. Getting it in the hands of patients.
And it would really start if we had that, with letting the patients know about it, because then the patients will want the test. Then they start wanting the test, their doctors will start learning about the test and it will go viral, as you say. It will be a big process, but it has to start. It’s not something easy. We’ve all looked for something easy. It’s not something easy. So we have to go and look and see, and then get a company to take this to commercial. But we have people who have approached us and said, if you had something, we would love to commercialize it, because there’s always people who want to set up a business and a start-up to do that kind of thing.
00:59: 05 Emily Kate Stephens: “That is so exciting. That is so really reassuring, for the community, because I think there a lot of people, who have the best () in the world to find something or to create something, but without really that through line, of how do you bring it to the people that need it. And that just exemplifies your approach because you came to this from wanting to work out how you could help your daughter and people like her, you’ve always got that idea that at the end of this there is a patient, who is a normal person, who needs to have access to the treatment, care, cure. So I think that approach, top down, bottom up, flipping it. I’ve read it, wherever you’re mentioned, your signature in everything is “Gives hope to patients.” I wish you the absolute best of luck and with your other 50 studies. The 50 research projects that you currently have ongoing.”
Linda Tannenbaum: “Thank you. Yeah, thank you. Thank you. It’s a lot.”
Link to the Podcast: https://madevisible.podbean.com/
Donate to BioQuest: https://omf.ngo/me-cfs-new-biomarker-study/
Link to Linda Tannenbaum’s previous interview about BioQuest.
Thank you 🙏
Thank you a lot!