Update from Ron Davis April 2019 Interview with BenH

from your transcription, @Forbin
"But the biggest interest is really to try to see if we can find some drugs that might abolish that signal.

It's not necessarily a cure, or even a treatment, but it's possible and it would be worthwhile [to see] what kind of compounds can reduce the signal."
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Sly Saint said:
watched this earlier today.
One question to others re something raised towards the end of the video; from memory so excuse if not entirely accurate, but Ben said that pwME don't sweat as much as healthy people.
Is this other peoples experience?
I sweat a lot, particularly at night and find during the day I also need a fairly constant intake of fluids.

eta: another thing, Ron seemed really exhausted, and he's 77; worrying.
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I could not sweat during the day but none the less had nightsweats.

Later more and more parts of my body started sweating during the day. I am pretty sure that was part of the healing process.
 
Sly Saint said:
Ben said that pwME don't sweat as much as healthy people.
Is this other peoples experience?
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Now that you mention it, I get a lot of hot flashes but don’t find I sweat a lot from them. So I would agree I don’t sweat as much as I used to.
 
unknown is

- in how many blood samples the particle was found,
- if it is indeed the thing that influences the signal
- if its even too big to be an exosome (in the vid its "quite large", no mention of exosome)
 
I sweat if stressed or overheating and it's a completely different odor to the smell of healthy sweat (TMI)
It's yuck. I've noticed it from illness onset. Has anyone else experienced change in body odor. Probably the reserve of the severe.:confused:
 
Sunshine3 said:
I sweat if stressed or overheating and it's a completely different odor to the smell of healthy sweat (TMI)
It's yuck. I've noticed it from illness onset. Has anyone else experienced change in body odor. Probably the reserve of the severe.:confused:
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I noticed it.
Farts smelled diffferent too.
 
alex3619 said:
If the unknown substance in the blood causing an abnormal signal is a particle, it might be a fragment from a destroyed cell, or pathogen fragment, or it might be a cluster of molecules bound together. It raises, again, the possibility of prions.
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alex3619 said:
If the unknown substance in the blood causing an abnormal signal is a particle, it might be a fragment from a destroyed cell, or pathogen fragment, or it might be a cluster of molecules bound together. It raises, again, the possibility of prions.
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Why can this "particle" not be captured and examined in brain cross sections, or in tissue, or blood? So much research has gone into CJS and other prion diseases in animals, and humans.
 
Given that there are many thousands of different molecules of different sizes, bits of broken up cells, and whole cells etc in blood, I can't see how they can separate out the one that's possibly causing us problems if they don't know what it is.
 
BurnA said:
My question is what is a 'particle' ?
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I assume that by 'particle' is meant more than just a molecule like a protein. That implies some sort of raft or aggregate of proteins or lipids. A large immune complex containing fifty antibody molecules and fifty antigen molecules all cross linked would be a particle. Proteins are about 10 nanometers across. Bacteria and mitochondria are about 1000 nanometers. Suspect the idea is of something somewhere in between - maybe 100 nanometers. Exosomes are probably in this sort of range. Viruses are in this range.

It would be possible to test for various possible sorts of particle using dissociation with detergents, acid pH or perhaps enzymes that removed adhesive sugar residues etc. There are standard techniques for classifying 'mystery agents' in this sort of way but they involve tedious extraction procedures that tend to lose 90% of what you looking for so it is months of work. I spent 3 months extracting 'particles' from placenta once in order to identify a protein layer that turned out to be important in arthritis. Did me the world of good having to do some hard work and find all the stuff down the drain and have to start again about once a week.
 
Ben H said:
The mould testing is on a smaller scale as far as I know, and the mercury too. Perhaps it may tease out potential subgroups or additional comorbidities.
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What I took from this part of the interview is that Ron Davis is trying to respond to what patients are telling him – some ME patients have serious and long-standing concerns that issues with mould or heavy metal toxicity could have triggered or worsened their disease. Many clinicians just regard these as half-baked internet theories and dismiss them out of hand, but if researchers rule them out without any investigation, they risk missing a potentially important clue.

My instinct is that they're unlikely to underlie most cases of ME, but I find it really encouraging that researchers like Dr Davis are willing to listen and consider whether there are straightforward, inexpensive ways of looking a bit deeper.

If we feel frustrated and disheartened – and I do, having endured this bloody illness for nearly 45 years – I can't imagine what it must be like for Ron Davis. Even with access to world-class facilities and a global network of researchers, plus all the learning from his own illustrious career, he's still having to watch his child endure a living death, unable to do anything about it. Honestly, I'd rather be a patient with lifelong ME than a parent in that position.

The NIH conference might not have brought us much sense of a major breakthrough in the near future, but it could be a whole lot worse if we hadn't got the Davis/Dafoe family, Linda Tannenbaum, and all the researchers who've entered the field in recent years (and are still coming in).
 
Perrier said:
Why can this "particle" not be captured and examined in brain cross sections, or in tissue, or blood? So much research has gone into CJS and other prion diseases in animals, and humans.
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Presumably its hard to find, probably because there may not be many of them. In prion infected brains the cells would be loaded with faulty protein. If you don't know what it is, you cannot design a test to find it. If its in low concentration, tests need to be very sensitive. Lots of reasons for problems to occur.
 
Jonathan Edwards said:
I assume that by 'particle' is meant more than just a molecule like a protein. That implies some sort of raft or aggregate of proteins or lipids. A large immune complex containing fifty antibody molecules and fifty antigen molecules all cross linked would be a particle. Proteins are about 10 nanometers across. Bacteria and mitochondria are about 1000 nanometers. Suspect the idea is of something somewhere in between - maybe 100 nanometers. Exosomes are probably in this sort of range. Viruses are in this range.

It would be possible to test for various possible sorts of particle using dissociation with detergents, acid pH or perhaps enzymes that removed adhesive sugar residues etc. There are standard techniques for classifying 'mystery agents' in this sort of way but they involve tedious extraction procedures that tend to lose 90% of what you looking for so it is months of work. I spent 3 months extracting 'particles' from placenta once in order to identify a protein layer that turned out to be important in arthritis. Did me the world of good having to do some hard work and find all the stuff down the drain and have to start again about once a week.
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A long time ago I used to separate proteins using gel electrophoresis...admittedly this was crude food species type work....back In the day when haddock was being used to adulterate cod fish fingers (shock horror).

I seem to remember another project where we had a problem with a cocktail of stuff (proteins lipids polysaccharides etc) and we used the same technique and cut out the bit of polyacrylamide gel that was of interest to look at the protein component, but in more detail. I guess there is lots of stuff in blood though. Even throwing all the separation techniques at our project (liquid and gas chromatography, molecular filters, microscopy etc etc....we only really got into the region of what was causing the problem and we had much less going on.

It does seem to be taking a long time since the initial finding so I’m guessing this is pretty complicated to isolate with traditional methods. They should however have a long list of what it isn’t and can probably guess whether it’s a protein/protein complex by now I would have thought...even if they don’t know enough about it yet.
 
Binkie4 said:
@Ben H
While you are here - well done by the way- do you know what is being looked for in the spinal taps in Uppsala? Is it hypothesis testing? It’s a fairly invasive test so I would imagine it is for something specific. Actually I think the NIH are doing spinal taps in their battery of tests for their large study- someone please correct me if I am wrong.

ETA post#3 in this thread, I have added a link to Dr Bergquist’s lecture at the OMF conference earlier this year where he talks about tests using csf. I wish I had more science so as to understand more.
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Hi @Binkie4

I don't know unfortunately. I think previously it has been for antibodies but this time I am not sure-I had no idea they were potentially injecting kynurenine into the CSF so that was quite surprising. If I find out I'll update.


B
 
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alex3619 said:
Presumably its hard to find, probably because there may not be many of them. In prion infected brains the cells would be loaded with faulty protein. If you don't know what it is, you cannot design a test to find it. If its in low concentration, tests need to be very sensitive. Lots of reasons for problems to occur.
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arewenearlythereyet said:
It does seem to be taking a long time since the initial finding so I’m guessing this is pretty complicated to isolate with traditional methods. They should however have a long list of what it isn’t and can probably guess whether it’s a protein/protein complex by now I would have thought...even if they don’t know enough about it yet.
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Yes, but haven't they already had success in removing the "particle" via microfiltration? Isn't that how they've determined its size. They've conducted many gradual filtrations by size and retested the "blood" on cells in the nanoneedle and/or in the salt-work test? That alone would help narrow down the possibilities and be able to expedite collection and concentration of the particle. I'm surprised we haven't gotten a size number on the particle yet.
 
I wonder if this "particle" might also be found in healthy controls, just at a lower concentration.

"The dose makes the poison," as Paracelsus said.*


(*Yes, I had to look that up.)
 
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