A nanoelectronics-blood-based diagnostic biomarker for ME/CFS (2019) Esfandyarpour, Davis et al

To try to be fair to Ron Davis, here is my understanding of the situation.

He has taken on a huge task of trying to solve ME/CFS. While at the same time being not particularly well himself, in his late 70's, taking daily turns caring for Whitney, and still head of the whole Genome lab that runs lots of other projects. And giving talks about ME. He is clearly massively overstretched.

He has appointed teams of people to work on different projects, and OMF have raised a lot of money that is supporting projects by Ron's team and other teams around the world. That is all good, and he deserves a lot of credit for being part of it.

I think when Ron first held up his little prototype nanoneedle in a talk a few years ago, that many of us watched streamed online, he fully expected to be able to get NIH funding to take it forward quickly, and for the engineers in the team to be able to design and fabricate equipment that would make his hope of turning it into a tool that could be used in a doctors office within a year or two.

That clearly has not been possible, and they have designed a larger research machine that can handle lots of samples at the same time, so speed the process up. I think I read somewhere that orders have been placed for machines to be produced by specialist engineering companies, but delayed by the pandemic.

I think the big mistake Ron made, with the best of intentions, was to promise more than he could deliver. He wanted to offer hope to patients, but hasn't yet been able to live up to those promises. We don't know how close any of his various projects are to coming to fruition.

I think it's a pity Ron has had so much attention focused on him and what he may be able to achieve. It must be a very heavy burden to bear, while also watching daily his son's unbearable suffering.
 
Trish said:
That clearly has not been possible, and they have designed a larger research machine that can handle lots of samples at the same time, so speed the process up.
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but that's the bit that I don't get; I would have thought they would test the original on other illnesses even a few randomly, just to see if it is only ME patients that produce the results, before going to the expense and trouble of redesigning and producing the new equipment.
 
I agree that bit doesn't seem to make sense.

Maybe they could only get funding to develop the machine on the basis that it was originally designed for other purposes, and has been adapted for this use in ME/CFS.

I think at this stage with their prototype, it's not just a case of asking people to attend the lab, taking a drop of blood and putting it on the prototype. I think it involves a lot of work just to test one sample, and if they were going to test against other diseases adequately to publish their findings in a paper, they woud have to do significantly more than one person. Perhaps they have done a few but they are not ready for publication, or perhaps the prototype is no longer usable. I have no idea how durable it is.
 
re: nanoneedle findings:

Dr.Byron Hyde:
Multiple Disabling Pathologies: Most M.E. patients have multiple disabling pathologies and it is insufficient for any physician who finds one pathology to assume he has found the one and only cause of this complex illness. Too often I have seen physicians who have found one major cause of M.E. or CFS dysfunction and illness, treat it, and then criticize the patient for not getting back to work when in reality, what the physician uncovered was only the tip of the iceberg.
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Mij said:
re: nanoneedle findings:
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I don't think there is any claim that the nanoneedle findings are finding the root cause of ME/CFS. They are looking for a biomarker, which can be a downstream effect of something else, not necessarily the cause. So any drugs tested on the nanoneedle would presumably be aimed at reducing this downstream effect in these particular cells, and hopefully in other cells. It wouldn't necessarily reverse the disease.
 
Here's what I hear from Ron's presentation in the panel.

They're working on developing a new technology which can be easily and inexpensively used in any lab that clearly shows, using only a drop of blood, the presence of an illness. If the nanoneedle is medically accepted then when a person with ME first visits a doctor the test will be done and will, at minimum, show they are ill, alleviating the common situation where we do multiple tests and are told the tests are normal and we are fine. This in itself would be huge progress.

In the presentation Ron talks about how ridiculous it is that Whitney's blood test results indicate that he's a fit and healthy person. Test a drop of blood in the nanoneedle and it show's he's ill.

At this point we don't know if the nanoneedle is specific to ME (from the way the conversation is going a guess is that it's not), is specific to a group of diseases including ME (this would be a big step in diagnosing ME) or simply indicates the presence of one of many, many diseases.

Might not end up what we've hoped for nor align totally with what the previous statements led us to believe but I'm going to continue waiting to see where it goes keeping Trish's most thoughtful post in mind.
 
Sly Saint said:
but that's the bit that I don't get; I would have thought they would test the original on other illnesses even a few randomly, just to see if it is only ME patients that produce the results, before going to the expense and trouble of redesigning and producing the new equipment.
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It might be that they did have enough informal data, perhaps from a few personal contacts, to back a decision to continue development?

I guess researchers might employ these strategies to test their work, specially if money is tight and the process wouldn't raise major ethical concerns.
 
Helene said:
If the nanoneedle is medically accepted then when a person with ME first visits a doctor the test will be done and will, at minimum, show they are ill, alleviating the common situation where we do multiple tests and are told the tests are normal and we are fine. This in itself would be huge progress.
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But I can’t see any doctor or GP in the U.K. giving this test to any patient in any doctors surgery or clinic unless it is actually specific to ME/CFS. It doesn’t tell them anything for diagnostic purposes so why would they use it? They don’t even know what it’s showing. At most this would be helpful for research purposes to try to narrow things down further - but is it? Do they know what this test really shows, what it means, to help with further research? They haven’t said that either.

I think if they know now that it’s not specific to ME, they should just say. It almost seems like that’s what they’re saying, but then re-reading I feel confused. the ambiguity isn’t helpful. I was really excited about the nano needle when it came out. But it’s REALLY hard being so ill and having false hope and it getting dashed again and again. I just want to know what is what now. I know they’re developing a bigger machine but surely they have enough informal data by now to not be so ambiguous.
 
I think even if it were specific to a group of diseases rather than just ME/CFS, it could be a huge advance in diagnosis, particularly for those of us whose doctors continue to believe we have a psychosomatic condition. It could help in benefit and ill health retirement applications, getting appropriate medical, hospital and social care, getting accommodations at work, etc.
 
lunarainbows said:
But I can’t see any doctor or GP in the U.K. giving this test to any patient in any doctors surgery or clinic unless it is actually specific to ME/CFS.
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I don't think that really matters – if it shows that almost everyone with ME gives a signal, and almost no-one without chronic disease does, it's enough to derail for good the BPS approach.

In any case, surprisingly few diseases do have highly specific markers. Even well-characterised ones, where there is visible pathology, may require several different tests and symptom assessments to rule out alternative conditions before they can be diagnosed. I have psoriatic arthritis, which doctors have known about for decades and is highly visible (my finger joints are fused solid), but it took two years to diagnose it because there's no specific test. It's based on a clinical picture that takes into account several factors, and it still depends a good deal on the skill and experience of the rheumatologist and radiologist.

That type of approach is almost certainly what will happen with ME, even when we do understand a lot more.
 
Trish said:
He has appointed teams of people to work on different projects, and OMF have raised a lot of money that is supporting projects by Ron's team and other teams around the world. That is all good, and he deserves a lot of credit for being part of it.
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Thank you @Trish for putting it so eloquently. Lets remember Ron is reliant on the main author of the paper of this thread who is the one that invented the nanoneedle sensor (for different purposes) and who he has explained is the only one that has been able to make them so far.

He has explained how difficult the current measurement setup is - requiring specialised probing systems and faraday cages with very strict and rapid blood processing, and an 8 hour test that requires a researcher to work into the night to test one or two samples. This is expensive in researcher time too. A typical lab measurement instrument will measure 16-192 samples at once in a load and forget manner. The nanoneedle as used in the paper of this thread is a long way from that but Ron Davis has a vision to get there with sufficient funding and this is what he articulates.

He has previously explained that in 2019 Rahim Esfandyarpour, the lead researcher and inventor of the Nanoneedle, moved to UC Irvine to become a professor which involved establishing himself at the new university, setting up his lab, and recruiting members. He has explained that Rahim started working on a new design that should be capable of testing more than one or two samples a day but the pandemic hit which stopped progress. Ron has stated he has submitted grants to funding bodies to fully fund the Nanoneedle product development and research but they've been turned down.

My understanding is that many research labs in the US have been shutdown due to the pandemic which I expect will have affected progress of many of Rahims projects. Lets remember that Rahim too has to rely on others to carry out the actual work. I posted about Rahims new position and current work previously in this thread.
https://www.s4me.info/threads/a-nan...dyarpour-davis-et-al.9284/page-22#post-253676

If you go to his lab page he doesn't list the nanoneedle under projects. It seems he has many well funded projects to work on that produce publication worthy papers and news articles such as "UCI Biochip Innovation Combines AI and Nanoparticle Printing for Cancer Cell Analysis" that grab headlines.

Ron has to rely on the goodwill of other researchers to continue the work even with funding from OMF. Each of his lead researchers also have multiple other projects that need their time whether ME based projects or other. That's the same as many ME/CFS researchers around the world. It's a delicate balancing act.
 
Helene said:
If the nanoneedle is medically accepted then when a person with ME first visits a doctor the test will be done and will, at minimum, show they are ill, alleviating the common situation where we do multiple tests and are told the tests are normal and we are fine. This in itself would be huge progress.

In the presentation Ron talks about how ridiculous it is that Whitney's blood test results indicate that he's a fit and healthy person. Test a drop of blood in the nanoneedle and it show's he's ill.
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Yes, that in itself would indeed be massive progress, resolving one of the biggest injustices that people with ME/CFS have faced for decades and still face - being believed. As first steps go that would be a superb foundation on which to build.
 
[QUOTE="wigglethemouse, post: 326756, member:
Ron has to rely on the goodwill of other researchers to continue the work even with funding from OMF. Each of his lead researchers also have multiple other projects that need their time whether ME based projects or other. That's the same as many ME/CFS researchers around the world. It's a delicate balancing act.[/QUOTE]


Dr Davis is doing the utmost, and pushing himself far beyond what is recommended for a chap his age; he and Dr Dafoe, his wife, have a good deal of pressure on them. He did say if I recall that he has 16 researchers working for him. Now, that is not enough at all for a disease that is this severe. This is not his fault, but the lack of funds this disease is getting from the NIH, or from any donor. Very worrying.
 
lunarainbows said:
But I can’t see any doctor or GP in the U.K. giving this test to any patient in any doctors surgery or clinic unless it is actually specific to ME/CFS.
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Is that necessarily true? As you know I'm not medically qualified, so this is just conjecture, but I would have thought there must be other tests done for other conditions that maybe alone do not pinpoint an exact disease. Identifying a person actually does have a physical condition is a pretty good bit of pinpointing in itself I would have thought.

Either way, progress is very often in the form of stepwise refinement, and if the first important steps are dismissed, then you never get the chance to advance onto the further steps.
 
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