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

Even if this is complete happenstance it could serve to establish the elements of a patent I described, so university attorneys would not object. Had the paper made replication too easy they might have.

I really hope you are right about a second paper with more detail already on the way. I think this likely, even if there is more to the story behind the scenes. Ron Davis has the best of motives, but he is one individual who must deal with an entire university/industrial ecosystem. Getting funding is a constant concern, and the pennies we patients can contribute are unlikely to go far.

Painful experience does not stop me from thinking about attempts to profit from government and charitable funding. We've all had a number of surprises about charitable foundations just this year. Also, recall what happened yesterday concerning a medical treatment option that was worth billions. Could behavior get more corrupt?

Good and honorable people have to be aware there are others around with worse motives. If they don't protect themselves, they are likely to end up in court through no fault of their own.

 

https://twitter.com/user/status/1124238145103568896

 

Looks like Nanoneedle technology is still being developed by Ron Davis's teams at Stanford for other purposes. This is a current NIH grant for a cancer project. Title sounds very futuristic.

NANONEEDLE MICROROBOTS FOR SINGLE CANCER CELL MANIPULATION AND GENOME EDITING

 

That's Stanford. Private universities have a commercial mandate in the US. They think very differently, it isn't just academic, they're in the business of making money first, a good education is just the product they sell to achieve that but income comes first in their priorities.

 

$314K. That's peanuts compared to the private funding from patients.

wE're HeLPiNg

 

The paper lists NIH grant number R01 HG000205. The grant ran from 1994 and ended in 2016 (coincidentally after Ron complained that NIH wouldn't fund his ME/CFS work). It was a massive grant ($5MM in 2016).

REVOLUTIONIZING BIOMEDICAL AND CLINICAL RESEARCH THROUGH INNOVATIVE TECHNOLOGY
https://projectreporter.nih.gov/project_info_history.cfm?aid=9130903&icde=44461818

According to Twitter above this funded the earlier nanoneedle work for other applications.

The grant funded work that resulted in a lot of papers and patents. NIH lists 2 nanoneedle patents resulting from this grant.
https://projectreporter.nih.gov/project_info_results.cfm?sp=1&aid=9130903&icde=44461818

 

I found another patent filed in 2013 and granted in 2016. 9,434,983. This one has images. Would seem to cover most bases. [EDIT: This seems to have tip 212 - the recent ME/CFS paper did not mention these tips, so could be different]
http://patft1.uspto.gov//netacgi/nph-Parser?Sect1=PTO1&Sect2=HITOFF&d=PALL&p=1&u=/netahtml/PTO/srchnum.htm&r=1&f=G&l=50&s1=9434983.PN.&OS=PN/9434983&RS=PN/9434983

PDF View
https://pdfpiw.uspto.gov/.piw?PageNum=0&docid=09434983&IDKey=36A1BC601C6F &HomeUrl=http://patft1.uspto.gov/netacgi/nph-Parser?Sect1=PTO1%26Sect2=HITOFF%26d=PALL%26p=1%26u=%252Fnetahtml%252FPTO%252Fsrchnum.htm%26r=1%26f=G%26l=50%26s1=9434983.PN.%26OS=PN/9434983%26RS=PN/9434983

 

Could this be the relevant patent application - 17 January 2019 [filed July 12, 2018]
http://appft.uspto.gov/netacgi/nph-Parser?Sect1=PTO2&Sect2=HITOFF&p=1&u=/netahtml/PTO/search-bool.html&r=1&f=G&l=50&co1=AND&d=PG01&s1=Esfandyarpour.IN.&OS=IN/Esfandyarpour&RS=IN/Esfandyarpour

These are the claims of this patent application

Rahim has a long list of patents applications - 36 in total. It looks like he uses a different first name for official patent filings, perhaps his official name.
http://appft.uspto.gov/netacgi/nph-Parser?Sect1=PTO2&Sect2=HITOFF&p=1&u=/netahtml/PTO/search-bool.html&r=0&f=S&l=50&TERM1=Esfandyarpour,+Hesaam&FIELD1=IN&co1=AND&TERM2=&FIELD2=&d=PG01

 

Thanks to all those continuing to toil on this thread. Took me awhile to realise how little I understood of the detail of this method and how out of my depth I was.

Though I’m assuming that, regardless of my ignorance of the black box, if the results replicate and hold up using sick controls, the method will still be useful.

Think I’ll leave you to it.

 

would it be interesting to see blood , urine, tissue samples of the same patients after extensive exercise ?


ETA: or perhaps a diving session ?

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5450642/

 

aquaporins breaking down ? too many, too few, something wrong with them or uninteresting ... ?
1.5h was when most of the healthy showed some beep
should be easy to test when healthy blood would react similar after 3-5 hours
the healthy signal looks cut at 2.5h

https://www.sciencedirect.com/science/article/pii/S0006291X05024253

Spoiler: curve

 

Yea I remember reading a paper; the research (from memory) was done way before the paper was published. I read the conflicts section and yes they had a patent. So it occurred to me that the reason it took so long to publish the paper was that they delayed until they secured the patent.

 

I'm with @Simon M here i.e. I'm not much interested in the black box bit; however, I'm very interested in whether it is a diagnostic test. Also, when will we see it delivered here in the UK/EU? ME Action are lobbying for the delivery of a diagnostic test
https://www.meaction.net/2019/02/26/announcing-millionsmissing-2019-join-us/

Bear in mind that the NIH study found roughly a third of participants in the "ME/CFS NIH Intramural Study" did not have ME [http://simmaronresearch.com/2019/03/nath-intramural-chronic-fatigue-study/].
So there are a lot of people with a "looks like ME" diagnosis who do not have ME. There may be viable treatments for some of those people; we need clarity.

 

Thanks @Trish. Ron Davis, speaking recently, said that when you ask an MS doctor whether (MS) patients have fatigue they say "yes but it's caused by MS not ME". I think Ron went on to say that doctors assume that all of your symptoms are caused by one disease. This supports your view i.e. some (unknown proportion) will have 2 diseases; one of which is ME.

Currently, as you are aware/more aware than me, people are diagnosed as having ME on the basis of persistent disabling fatigue and the absence of another known disease - diagnosis by exclusion. The nano-needle (Ron Davis)/morphology (Bhupesh Prusty)/Oxygen Consumption (Karl Morten) "tests" show that the cells return to normal once you filter out the exosomes in the plasma. In 2016, Fluge and Mella proposed that "ME/CFS is caused by immune interference with an unidentified target, potentially a signaling factor" [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5161229/]. We now "know"(?) that the signalling is via micro-RNAs (Prusty) in exosomes. So ME is beginning to look like a reversible cellular energy production problem, which is caused by a signalling factor (micro-RNAs) in exosomes.

I'd be very surprised if a very large portion (one third or whatever) of people labelled as having ME:

• do not have ME [i.e. fail a test using one of the above methods - Davis/Prusty/Morten]; or
• have ME and another disease.

Either way those people need an accurate diagnosis; for some at least of these people there are currently treatments - treatments they are now missing out on.

The issue you highlight is relatively easily resolved. The UK Government spent 5 million pounds on the PACE trial. Testing of a large group of people with ME, using one of the above methods [Davis/Prusty/Morten], could be commenced immediately and would cost less than 5 million pounds. That would help to establish the level of ME misdiagnosis - my guess is that is that one third may not be wildly out.

ME Action are lobbying for the delivery of a diagnostic test
https://www.meaction.net/2019/02/26/announcing-millionsmissing-2019-join-us/

@EspeMor @JaimeS

 

I'm thinking that Gulf War Syndrome (GWS) might be a really important disease to test the nano-needle against.

Nancy Klimas says that the GWS and MECFS are symptomatically indistinguishable. I don't know if that extends to objective measures of dysfunction, like a 2-day CPET, but it might.

Given the similar symptomology, if the nano-needle can distinguish between GWS and MECFS, you could probably rule out that it's detecting common consequences of the diseases, like deconditioning, anxiety, belonging to an online support group, etc.

If it can't distinguish between GWS and MECFS, then it might be detecting a similar underlying process, which would be important if relatively few other diseases showed the same signal.

 

I don't think these articles have been shared yet in the thread, so here goes:

Discover Magazine: Scientists Are Closer to Developing a Chronic Fatigue Syndrome Blood Test

STAT News: An experimental test may help confirm cases of chronic fatigue syndrome

 

I really don't see the problem with the nanoneedle also identifying other diseases. It could even be a good thing if it brings funding from multiple sources. The pool of diseases that cause this level of exhaustion is tiny so reducing the differential diagnosis search space from hundreds of possible explanations to a handful is still extremely positive, for us and others who could be identified by it.

In most of those cases the disabling nature of extreme levels of exhaustion is downplayed and misunderstood as well, it could bring benefits to a very large population and avance our general understanding of what physiological fatigue is, something that has completely eluded science so far.

Plus the fact that it was not tested against other diseases is entirely down to the fact that funding for a larger study was denied. We're always facing extra obstacles and the gloating of saboteurs about how successful those obstacles are can be ignored as noise. Science is about following evidence where it takes you. It's happening against intense ideological opposition, which is a feat in itself.

The thing about what the signal shows possibly being anxiety or subjective perception of fatigue or whatever is just desperation and misdirection, none of them actually believe that, they're just nervous about their stupid ideology being sent to its rightful place alongside phrenology and the psychosomatic models of peptic ulcers. Fatigue as defined as the subjective perception of tiredness has nothing to do with this, no matter what these fools say.