OMF/Ron Davis Research Update May 2018

[Indigophoton]

The latest brief (7 or 8 mins) update from Ron Davis,



Summary:

Most of severely ill study data collected and analysed, now trying to get it online for people to access, and writing a paper. Hope people will use it to develop hypotheses that can be funded by NIH.

Other work in the lab includes another big data analysis on a range of severities and a study in families.

Working on T cell activation with Mark Davis' group and Lars Steinmetz.

Sequencing on KIR locus - seems to be involved in interaction with viruses, severely ill data shows it is important.

Metabolomics, sequencing and pathway analysis combined allows examination of possible metabolic traps.

Things going slower than preferred, so are hiring more people. One person per project at present.

Have a paper on one of the biomarkers going out soon, and a second paper on the nanoneedle in progress. Biomarker will show illness is not being faked.

They are looking everywhere they can, want to hire expertise they don't currently have, and RD wants a cure, not just a treatment.

Edit: spelling

 

[Hoopoe]

KIR locus.

Edit: it's related to NK cells. See here https://www.ncbi.nlm.nih.gov/books/NBK10135/

 

[Indigophoton]

Thanks, @strategist, fixed!

 

[Hoopoe]

The best part is that they're going to publish their findings and make the severely ill study data available. This should stimulate interest.

 

[hixxy]

Thanks for the summary. I'm really not a fan of video blogs for disseminating information.

 

[Londinium]

The best part is that they're going to publish their findings and make the severely ill study data available. This should stimulate interest.

Agreed. Am pleased they are going to do formal publication as I think it’d been unclear in the past as to whether they’d focus solely on data sharing.

 

[Webdog]

"So far, in the nanoneedle, every patient shows a clear signal, and none of the healthy controls do." (at 5:50 mark).

 

[Alvin]

I'm a bit concerned about releasing the nanoneedle if it shows other conditions as well, in recent years instead of proving a process or product its more common to release a beta and improve over time. This has advantages and disadvantages, it gets things out faster but refinement is a never finished task it seems. That being true if it works and other conditions are found that can be identified by further tests then its viable but i do think if its widely used more conditions that cause a block will be found hurting the reputation of the test. That said i don't want to wait years or decades for it to be proven...

 

[adambeyoncelowe]

I'm a bit concerned about releasing the nanoneedle if it shows other conditions as well, in recent years instead of proving a process or product its more common to release a beta and improve over time. This has advantages and disadvantages, it gets things out faster but refinement is a never finished task it seems. That being true if it works and other conditions are found that can be identified by further tests then its viable but i do think if its widely used more conditions that cause a block will be found hurting the reputation of the test. That said i don't want to wait years or decades for it to be proven...

But as Ron says, it still shows something is up. That might be enough for now while he explores the other three biomarkers.

 

[Alvin]

enough for now

Thats the thing, enough for now, thats not a good biomarker.

 

[adambeyoncelowe]

Thats the thing, enough for now, thats not a good biomarker.

No, I agree. However, if it shows high frequency in, say, any illness with metabolic issues, but those other illnesses have adequate tests already, it's still better than what we have now. For instance, you could use the nanoneedle to prove something is wrong, and then an MRI to decide whether the patient has MS or ME.

 

[Trish]

Maybe biomarker is the wrong word in the case of the nanoneedle if the test is not exclusive to ME, but I still think it could be incredibly useful to patients for 3 reasons.
- It's a sign that there is something biologically wrong, so doctors have to stop the psychosomatic nonsense and take us seriously.
- It enables researchers to decide which patients to include in studies and clinical trials.
- And it's an indicator of whether a treatment has cured a patient if used after treatment.

 

[Alvin]

Maybe biomarker is the wrong word in the case of the nanoneedle if the test is not exclusive to ME, but I still think it could be incredibly useful to patients for 3 reasons.
- It's a sign that there is something biologically wrong, so doctors have to stop the psychosomatic nonsense and take us seriously.
- It enables researchers to decide which patients to include in studies and clinical trials.
- And it's an indicator of whether a treatment has cured a patient if used after treatment.

No, I agree. However, if it shows high frequency in, say, any illness with metabolic issues, but those other illnesses have adequate tests already, it's still better than what we have now. For instance, you could use the nanoneedle to prove something is wrong, and then an MRI to decide whether the patient has MS or ME.

I agree, it would just be nice to have a singular marker we can go after the PACErs with. And who knows this might even be it.

 

[andypants]

Dr. Davis has previously stated that they intend to test with blood from other, comparable, diseases as well, like MS, Lyme, diabetes, etc., so I assume they are aware of the possibility.

 

[Alvin]

Dr. Davis has previously stated that they intend to test with blood from other, comparable, diseases as well, like MS, Lyme, diabetes, etc., so I assume they are aware of the possibility.

But can they test every major disease and the common minor ones?
The answer is probably no.

I don't mean my recalcitrance to suggest not releasing this test, just that its not a silver biomarker bullet, at least not yet.

 

[Hoopoe]

It sounds like the nanoneedle biosensor is very sensitive as it can detect this abnormality even in mildly ill patients. Which probably means that there's going to be other illnesses with the same problem. It will still be revolutionary.

 

[andypants]

I don't mean my recalcitrance to suggest not releasing this test, just that its not a silver biomarker bullet, at least not yet.

Healthy scepticism is what this forum is all about, isn't it? Anyway, I agree. Still a step in the right direction, but probably more hurdles left to cross than we can imagine.

 

[TrixieStix]

I'm a bit concerned about releasing the nanoneedle if it shows other conditions as well, in recent years instead of proving a process or product its more common to release a beta and improve over time. This has advantages and disadvantages, it gets things out faster but refinement is a never finished task it seems. That being true if it works and other conditions are found that can be identified by further tests then its viable but i do think if its widely used more conditions that cause a block will be found hurting the reputation of the test. That said i don't want to wait years or decades for it to be proven...

I'd be interested in undergoing the test if available in future. To see what result is like in someone such as myself who met the criteria for ME and whose ME diagnosis has turned out to have been a misdiagnosis. I still have the ME-like & PEM-like symptoms, very low Natural Killer Cell function, multiple false positive Lyme tests all caused by autoimmune disease.

 

[Cinders66]

It's funny I never think of a cure, I'd be insanely grateful for just 10% lessening of severity

 

[Sid]

I suspect that the nanoneedle won't be specific to ME/CFS but if this test is validated and shows a clear-cut difference between sick and healthy people that would be amazing. Our first priority is to get authorities to have to admit there's a real problem and to stop sectioning people.