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Invest in ME Conference June 2nd 2017

Messages
2,087
Ron has been talking a lot about his diagnostic technology, with reference to his impedance chip I got to ask him if he has tested suramin on it, and he said yes he has, and it appears to make the cells normal.

But, there is always a but, supply of suramin, even for testing is a big issue.
 
Messages
2,087
Just a few more notes from today.

These are from my quick notes so may be incomplete ...

Ron mentioned that he has a lot negative results, they are still results but just negative. For example DNA in the blood is not a marker, they looked at viruses and didn't find anything. Although they did notice patients had less TT viruses than controls, might be related to immune activation.

The armband mentioned above can measure lactate, glucose sodium and potassium, in sweat, armband is just demo, idea is that it could be placed anywhere on body and will induce sweating in people who can't sweat.

Also looking at pluripotent stem cells, allows study of otherwise inaccessible tissues.

The impedance chip I mentioned above has been tested in about a dozen or so patients of various severity and always gives same result profile. They need to compare it to other diseases, other diseases being ones that might be confused with ME. They plan to test all FDA drugs on this chip, using different doses. If they notice a response they will look at dosing even more closely.

Also looking at magnetic levitation, patients have lighter white blood cells.

It seems Bayer are closing down their Suramin production facility and wont have one online again for another year or more.
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
Ron has been talking a lot about his diagnostic technology, with reference to his impedance chip I got to ask him if he has tested suramin on it, and he said yes he has, and it appears to make the cells normal.

But, there is always a but, supply of suramin, even for testing is a big issue.

That's very interesting, hope he discusses this further in a Q&A
 
Messages
2,087
A few other highlights of my day :

I met @Mike Harley ! Such a great guy.

Delighted to meet @charles shepherd who generously gave me a copy if the MEA purple book.

Lovely to meet other members of the PR family, @MEMum and @OverTheHills

Said hello to the wonderful @AshleyHalcyoneH who was busy taking photos at every opportunity.

Spoke to the lovely Oystein Fluge stand-in, Ingrid Rekeland, who told me a few things about the cyclome trial. She said that breast cancer patients who take cyclo never want to go back to the clinic, but even though ME patients seem to get worse reactions to cyclo they come back looking for more! She confirmed that some rtx non responders do respond to cyclo, but the overall numbers in the trial of rtx non responders are small, so hard to know what this might mean.

Ron Davis talk was the highlight but also personally enjoyed Nancy Klimas and the Norwegian talks of Olav Mella and the aforementioned Ingrid Rekeland. Olav Mella mentioned that they used seahorse technology in their trials, looking at OCR.
( I mention this because it was discussed recently on another thread relating to NIH study)
He also mentioned that a 2 year follow up such as in rtx trial can have problems because patients can forget what it was like for them before. Also in placebo trials patients may not report an improvement in case they were placebo and they don't want to be embarrassed.
One thing he did stress was that in patients who improve, all their symptom improved at same time.

If I think of more I'll let you know.
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Very interesting, did he mention any observed changes in OCR in RTX responders?

I'd be keen to know if anyone else knows more about this. From my fuzzy recollection I think he said oxygen consumption was higher in ME patients?

Resting O2 consumption is something I saw drop quite significantly between several CPETs taken either side of remission. Of course it just got explained away as "its an unreliable measure, you were probably just in fight or flight mode the first times"....
 

Nickster

Senior Member
Messages
308
Location
Los Angeles, CA
Ron has been talking a lot about his diagnostic technology, with reference to his impedance chip I got to ask him if he has tested suramin on it, and he said yes he has, and it appears to make the cells normal.

But, there is always a but, supply of suramin, even for testing is a big issue.
If the cells became normal, does that mean this is a potential cure? This new technology and its capabilities are new to me. Fascinating!
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
If the cells became normal, does that mean this is a potential cure? This new technology and its capabilities are new to me. Fascinating!

It's very exciting! But we should temper our optimism a bit. Pyruvate and healthy donor blood also make the cells normal but only temporarily, and aren't good candidates for other reasons. Suramin may be different because it's working on a signaling pathway but we don't yet know what that means in vivo
 

OverTheHills

Senior Member
Messages
465
Location
New Zealand
"Oystein Fluge has fallen off a ladder, can't be here"
Oh no! :(..............................what was he doing up a ladder?
Mending his roof apparently.

The conference was a really great experience.
MeMum and I took lots of notes and we' ll turn these into an article or two soon. But of course I'm completely and utterly brain fried now.Time for rest and sleep.
 
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ash0787

Senior Member
Messages
308
good point ryan, I noticed that too but I never mention it because it seems unscientific,
its especially noticable when I try and wear one of those pollution masks, even if its only FFP1 rating

I think the trouble with suramin might be that if its used for parasites then it likely to be a once off type of thing,
maybe nobody knows what happens if you keep giving it to somebody everyday.