Search for a Biomarker: Ron Davis interviewed on ME/CFS Alert

nandixon

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Lets say that if you have MS and you test positive using the nano-needle; are the other tests (for MS) sufficient to say "you have MS not ME"? I think that if the other tests (MS etc.) are sufficiently accurate then testing positive on the nano-needle isn't a problem.
I think the problem is that with a positive nanoneedle result you wouldn't have to rule out just one or even two other diseases. You'd have to rule out many other diseases. I only mentioned a handful. There's also Sjogren's, sarcoidosis, etc.

I'm in favour of simply doing a large study of people with ME, and also other diseases which have significant fatigue as a symptom (MS etc.), i.e. using the nano-needle.
I'd much rather see future money going to using the nanoneedle to help identify what the "something in the blood" is. That way we could potentially obtain both an actual diagnostic biomarker specifically for ME/CFS as well as a (hopefully) much better understanding of what treatment may be needed.
 

RL_sparky

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, but with the very large caveat that a drug that normalizes the nanoneedle may not necessarily have a beneficial effect on ME/CFS symptoms
This is something I've been thinking about lately also. We know that Copaxone normalizes the nanoneedle but we have only had one patient report that it worked on her ME/CFS symptoms, where a number of patients have reported no improvement while trying Copaxone.
Some of the other drugs tested, SS-31 and Suramin have not yet been tried in patients so to date we have yet to hear of a a drug tested on the nanoneedle that modulates the signal that has been shown to actually improve ME/CFS symptoms in patients.
 

SlamDancin

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I’m pretty sure at least one patient here did not improve on the Naviaux Suramin protocol. Fwiw I am going to try Black Seed Oil (Thymoquinone) as it’s cheap comparatively and had positive results in a similar impedance experiment done by Alain Moreau (sp?). I’ll check back on that. Ativan was reported to work as well by Ron Davis and Benzos are helpful for me and Ron’s son as well.
 

bread.

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I’m pretty sure at least one patient here did not improve on the Naviaux Suramin protocol. Fwiw I am going to try Black Seed Oil (Thymoquinone) as it’s cheap comparatively and had positive results in a similar impedance experiment done by Alain Moreau (sp?). I’ll check back on that. Ativan was reported to work as well by Ron Davis and Benzos are helpful for me and Ron’s son as well.
who is that person?
 

FMMM1

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I think the problem is that with a positive nanoneedle result you wouldn't have to rule out just one or even two other diseases. You'd have to rule out many other diseases. I only mentioned a handful. There's also Sjogren's, sarcoidosis, etc.


I'd much rather see future money going to using the nanoneedle to help identify what the "something in the blood" is. That way we could potentially obtain both an actual diagnostic biomarker specifically for ME/CFS as well as a (hopefully) much better understanding of what treatment may be needed.
I think one of the benefits in pursuing the nano-needle as a diagnostic test is that it tells the medical profession that you have a biomedical abnormality. Most of the PACE stuff etc. is based on a psychological theory; I assume that it would be more difficult to propagate a psychological theory if there is biomedical evidence of an underlying problem. Also, I'm also hoping that the nano-needle may help to identify the underlying mechanism for diseases such as depression, anxiety, schizophrenia -- so testing a wider range of diseases sounds great.

I'd be cautious about assuming that other diseases will produce a positive signal i.e. until a study has been done regarding those diseases.

I agree that the something in the blood looks like a great diagnostic biomarker and that the nano-needle could help to identify it i.e. by narrowing down the size of the particle/exosome causing the change.
 
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nandixon

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I think one of the benefits in pursuing the nano-needle as a diagnostic test is that it tells the medical profession that you have a biomedical abnormality. Most of the PACE stuff etc. is based on a psychological theory; I assume that it would be more difficult to propagate a psychological theory if there is biomedical evidence of an underlying problem. Also, I'm also hoping that the nano-needle may help to identify the underlying mechanism for diseases such as depression, anxiety, schizophrenia -- so testing a wider range of diseases sounds great.
Testing a wide range of diseases will be extremely expensive and time consuming. Why spend the very limited resources we have on developing the nanoneedle as a diagnostic test that is possibly equally likely to show you have a psychiatric illness versus a physical one, when you can spend a lot less money and more importantly time to use the nanoneedle as an analytical tool to find an actual ME/CFS biomarker. Especially when that biomarker could lead to a treatment.

Edit: Not that I don't believe that psychiatric illnesses are actually physically based, of course, but the point is that the psychological BPS crowd is going to use that against you.
 
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FMMM1

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Testing a wide range of diseases will be extremely expensive and time consuming. Why spend the very limited resources we have on developing the nanoneedle as a diagnostic test that is possibly equally likely to show you have a psychiatric illness versus a physical one, when you can spend a lot less money and more importantly time to use the nanoneedle as an analytical tool to find an actual ME/CFS biomarker. Especially when that biomarker could lead to a treatment.
If you look at Ron Davis's son Whitney he passes every standard test i.e. he's not ill according to those tests. I've spoken to people/their families who've been told by doctors that there is nothing wrong with them/their family member. One consequence of this is that it reduced funding i.e. since ME is not a biomedical disease. So even at a purely selfish level, i.e. to increase funding for research, the development of a diagnostic test (using the nano-needle) may be in the interest of those with ME/their families.

My understanding is that there is a commonly held view, among medical professionals, that psychiatric illnesses do not have a biomedical/biochemical basis. E.g. the discovery of an autoimmune form of NMDAR encephalitis, which responds to immunotherapy, which has the symptoms of schizophrenia was treated as an amazing discovery. ME is of course viewed in the same way.

I think you're correct about the identification of the compound causing the change in cellular respiration i.e. it would be a very good biomarker (can't think of a better one). E.g. you could use the levels of that compound to assess drugs. So yes it's worth pursuing; however, I think the use of the nano-needle as a diagnostic test could be a game changer.
 

FMMM1

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Hi you may be interested in Andy's interview with Karl Morten [https://www.s4me.info/threads/video...pt-2019-part-1-and-2.11298/page-2#post-202214]

Karl mentions L-form bacteria (they have no cell wall).

Also, on the subject of possible pathogens, check out Bhupesh Prusty's presentation at the NIH Conference in April 2019. Bhupesh found evidence of increased mitochondrial fragmentation in ME. Virus's (HHV-6); possibly bacteria can also fragment mitochondria.
Also, possibly looking at mitochondrial fragmentation versus the nano-needle. Are people with ME positive for the nano-needle and mitochondrial fragmentation?

Maybe @nandixon is correct i.e. use the nano-needle to help to try to identify what the something in the blood is. E.g. use the nano-needle to narrow down the fraction which contains the chemical affecting the cells and then test that fraction (mass spectrometry or whatever). This might help to bring some clarity to this "something in the blood".