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

ballard said:
Here's my salute to Francis Collins who happily took credit for the research using the nanoneedle that found a blood marker for ME.

According to Janet Dafoe, "That NIH grant was TERMINATED about 2 years ago because NIH said they didn't want to fund that technology anymore. That grant had funded the initial development of the nanoneedle on cancer cells & bacteria. All the ME/CFS work started AFTER that & was FUNDED BY PATIENTS@OpenMedF"

When I heard that Collins had taken credit, I actually felt like I had been physically punched, given the fact that the NIH's failure to fund research has caused me and millions like me to suffer for decades.


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Stunning artwork my friend @ballard. The questions is: are they actually planing on funding future studies or are they simply taking credit but are never going to be from again?
 
Alvin said:
Well can they turn this around on NIH taking credit, since you are very proud of the nanoneedle we need "more" funding to further develop it. How about $10 million dollars?
No? But you "got" us this far, the media will give you even more good press if you "further" support our research.
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You dont say. I REALLY hope they have´nt done this just for the credit and then abandon us further.
 
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If the NIH funded the earlier nanoneedle work then they still deserve some credit. They aren't doing as much as they should but they're still doing something, which is more than most other funding bodies are doing.

I find it concerning that on Twitter anything the NIH does in relation to ME/CFS gets mostly negative responses. They are one of the few people actually trying to help and doing useful things.
 
As I understand it, this piece of nanoneedle technology was initially designed for other purposes related to cancer and antibiotic research and funded by NIH. That particular funding was withdrawn, I don't know why - perhaps that's normal when new technologies are developed- they get seed funding for initial development, then, as Ron himself has describe for other projects by his department, they get spun off into startup companies to be developed commercially. As far as I can work out this doesn't seem to have happened with the nanoneedle.

The point is, that withdrawal of funds was nothing to do with ME research, since it happened before Ron Davis decided it might be re-purposed for ME research and got OMF to fund this further stage of development.

I've just got around to reading the article. I don't think it actually says anything inaccurate on the funding.

It says:
Support for development of the device was initially provided by NIH’s National Human Genome Research Institute (NHGRI).
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and:

Funding: NIH’s National Human Genome Research Institute (NHGRI) and the Open Medicine Foundation.
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Those are both, as far as I can see, accurate statements.

I see nothing wrong in NIH publishing an article drawing attention to this further development of something they initially funded. It might even give a higher profile to any bids for further funding from Ron's team to NIH to research it further.
 
Trish said:
As far as I can work out this doesn't seem to have happened with the nanoneedle.

The point is, that withdrawal of funds was nothing to do with ME research
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As far as I recall, Rons aim was to develop the technology to, in the long term, save the NIH money (using it to test drugs on particular illnesses); they (the NIH) said that this was not a priority.
It was on one of the early conference videos.
 
Dudden said:
Stunning artwork my friend @ballard. The questions is: are they actually planing on funding future studies or are they simply taking credit but are never going to be from again?
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Probably the latter
Dudden said:
You dont say. I REALLY hope they have´nt done this just for the credit and then abandon us furthermore.
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The safe money is abandonment. They are welcome to prove me wrong.
 
rvallee said:
Well, it would be temporary, until Stanford can secure the patents with no possibility of challenge. Once this hurdle is passed they will publish every bit of data. It's annoying but.. them Yankees and their profit motive golden calf.
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One of the things which have been on my mind about this is that initially the "something in the blood" which was effecting cellular energy production in ME was labelled as possibly an autoantibody. I posted that if it were an autoantibody then rituximab would have worked; however, rituximab didn't work therefore it wasn't an autoantibody.

I wonder if it was pretty obvious that there there were other candidates for causing this change in cellular energy production i.e. exosomes.

I think what Prusty brought to the equation was the change in mitochondrial morphology (shape) presumably caused by micro-RNAs in exosomes - after that there was no point in referring to "potentially --- autoantibody". Ron Davis etc. don't choose how the world is (Universities/profit motive); however, they have to work with it.
 
chrisb said:
Yes, but it is also possibly about what you wish people to infer from the statements. It is easy to draft documents so as not to allow people to mislead themselves.
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I don’t think it’s easy to do that at all. Some people will mislead themselves over 2+2=4.

*edit* not talking about anyone in particular on this site.
 
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One suggestion--

If folks still have questions on the methods of this paper, a suggestion would be to see if @JaimeS might be able to send Esfandyarpour an email to see if he would be willing to answer questions on this forum. Suggested Jaime rather than doing it myself because I assume that Jaime likely knows him and he would therefore be more likely to respond positively.

Most academics have some community outreach/service component as part of their work plan and if he participates, we could write a note of acknowledgement.
 
Anthony Komaroff has had a commentary on the study published in the NEJM Journal Watch

Requires a subscription to read it.

https://www.jwatch.org/na49222/2019/06/04/diagnostic-test-chronic-fatigue-syndrome


Diagnostic Test for Chronic Fatigue Syndrome?
Anthony L. Komaroff, MD reviewing Esfandyarpour R et al. Proc Natl Acad Sci U S A 2019 May 21

An electrical impedance assay distinguished CFS patients from healthy controls.

Many biomarkers — objective measurements that distinguish cases from healthy controls — have been identified in people with what is now called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Collectively, these markers demonstrate an underlying organic pathology in this illness. Yet no identified single biomarker has the high sensitivity and specificity needed for a diagnostic test.

Researchers developed a nanoelectronics assay to measure the impedance of electrical circuit as it was passed through mononuclear white blood cells (incubated in plasma collected from an individual patient) before and after osmotic stress. In all 20 samples from people with ME/CFS, but in no sample from healthy controls (20), impedance rose precipitously following the osmotic stressor. The investigators currently are studying the biological explanations for this clear difference in impedance.

COMMENT
This test achieved perfect sensitivity and specificity for identifying ME/CFS, and the nanoelectronics device used is inexpensive to manufacture and easy to use. However, only a small number of ME/CFS patients and healthy controls were evaluated, and the investigators did not test people with other fatiguing illnesses (such as multiple sclerosis or depression). Larger and more diverse sampling will be needed before this impedance assay can be deemed a diagnostic test. Whether or not this becomes a diagnostic test, studies of impedance might reveal important information about the underlying biology of illness in ME/CFS patients.
 
This test achieved perfect sensitivity and specificity for identifying ME/CFS........the investigators did not test people with other fatiguing illnesses (such as multiple sclerosis or depression).
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Does specificity mean something different than I think it does?

As I would have assumed, until reading the second bit, that the first bit means that it's specific to ME/CFS.
 
Wonko said:
Does specificity mean something different than I think it does?

As I would have assumed, until reading the second bit, that the first bit means that it's specific to ME/CFS.
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Maybe the meaning of specificity is being abused somewhat? Just saying it distinguished extremely well between pwME and the other people tested ... i.e. the healthy controls.
 
BurnA said:
I don't think it's being abused under the conditions of the test.
It did show specificity between pwme and healthy controls, which is what the test was about.
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I guess I misunderstand what specificity means. I was thinking it meant unique discrimination of a given disease, full stop.
 
Barry said:
I guess I misunderstand what specificity means. I was thinking it meant unique discrimination of a given disease, full stop.
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A reasonable thought Barry when this is written
Komaroff said:
This test achieved perfect sensitivity and specificity for identifying ME/CFS
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rather than "This test achieved perfect sensitivity and specificity for identifying the people with ME/CFS in this small trial."

I guess the latter is what Komaroff meant.
 
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