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Livestream: Ron Davis to speak at Columbia University
Hoopoe
Senior Member (Voting Rights)
The big news is that SS31 is the most effective drug tested so far. It completely normalizes patient results on the nanoneedle. It also has no toxicity at the doses used so there shouldn't be a problem taking it for life, if that was necessary.
The other big news is that blood cell deformability is again abnormal. The tests were it was normal were done in a different medium than patient plasma. In patient plasma, it is abnormal.
Again it is something in the blood.
The other big news is that blood cell deformability is again abnormal. The tests were it was normal were done in a different medium than patient plasma. In patient plasma, it is abnormal.
Again it is something in the blood.
Marky
Senior Member (Voting Rights)
I guess one should do some pilot studies to see if the no impedance findings has any relevance to symptoms. I would probably do that before pursuing it as a diagnostic marker?
Why
And can someone just make a short little list of the main takeaways from the talk? Thanks.
I'm so discouraged, so heartbroken, by reading the bits in the thread....
Pray tell, why is it so hard to crack this? Is it that the thinking really is that this is a whole slew of diseases?
And can someone just make a short little list of the main takeaways from the talk? Thanks.
I'm so discouraged, so heartbroken, by reading the bits in the thread....
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wigglethemouse
Senior Member (Voting Rights)
Please remember that this was a talk to psychologists and psychiatrists that were present with some science folks at two other locations. It was mostly stuff we had heard before. What I hadn't heard before was the introduction to Ron Davis where the presenter described some of his achievements to basic science throughtout his career - very impressive. And also two new possibly diagnostic tests have been added to the suite of tests he would like to add to patient sample testing.
We had a full day Symposium 2 months ago dedicated for ME folks.
Without significant NIH funding to build the team further we will have to make do with what we get. Dr Davis described in the talk how difficult it is to decide where to spend the precious money donated by patients. The team is trying hard to submit proposals to NIH......
Thanks so much Wigglethemouse for the reminder that this was for 'shrinks.' Still, for the severely ill, who wait, this is all too hard. Look, even prisoners know when their release date is. The severely do not know when relief will come.
And I fear that as there is nothing coming through, more and more folks will just go back to the quackery, because there is no relief whatsoever from medicine. There is nothing at all to take for the flu feeling that plagues patients. There is nothing to relieve the malaise, which, for the severely ill is there non stop. And then there are those who will just say, I can't do this anymore.
Why can this not be cracked? There are in the world specialists of all sorts, why can't they all come together and crack this nightmare. This is hitting the young; I know of so many young people whose lives are destroyed.
Yes, Dr Davis is brilliant, that is not ever at issue; and he is dedicated beyond compare; and he pushes through even at an advanced age. And he does understand the urgency..all this we appreciate profoundly. There is too much on his shoulders perhaps and not enough help coming in from all the other brilliant folks in the world.
wigglethemouse
Senior Member (Voting Rights)
Wilhelmina Jenkins
Senior Member (Voting Rights)
Does anyone happen to know the status of the research proposals that Dr. Davis submitted to NIH this year? I believe that there were 4 of them. I had heard that 1 was turned down, but I haven’t heard about the others.
Good science takes time. While it may seem that nothing is happening, several teams are working hard at it and organizing, collaborating, etc.
Dr Davis is a researcher and not a clinician. Testing hypothesis for patients, via pilot studies and clinical trials would be one of the next steps that need to be undertaken (wooopsie, i forgot we still need a biomarker) and for that he needs to be associated with a clinic that is seeing patients like us day in, day out, and that has the capacity to run clinical trials. This represents a whole range of knowledge, research skills, and coordination, staff and money. It looks like Stanford is building their clinic (or perhaps rebuilding) which is great news.
Nothing comes fast enough with this disease but without knowing anything of what is happening behind the scenes, i know that researchers are at it.
Dr Davis is a researcher and not a clinician. Testing hypothesis for patients, via pilot studies and clinical trials would be one of the next steps that need to be undertaken (wooopsie, i forgot we still need a biomarker) and for that he needs to be associated with a clinic that is seeing patients like us day in, day out, and that has the capacity to run clinical trials. This represents a whole range of knowledge, research skills, and coordination, staff and money. It looks like Stanford is building their clinic (or perhaps rebuilding) which is great news.
Nothing comes fast enough with this disease but without knowing anything of what is happening behind the scenes, i know that researchers are at it.
Regarding diagnostics and markers, it would be nice to have something to show skeptical doctors from Davis' research. Obviously they have already found lots of things, the nanoneedle etc., but how would you explain that to a layman or even a doctor in a couple of minutes? There needs to be something published, which would unequivocally show something is very much wrong in biochemistry of ME/CFS patients. My impression is that the current findings are not yet enough to make a really big impact on people outside ME/CFS research circles.
Hi @Perrier I wasn't able to watch Ron's presentation yesterday. OMF responded to my email on whether we can access this talk later:
"We have requested a copy of the talk but we do not yet know if we will be receiving one. It is yet to be determined.---
If we do get a copy, we will send out an announcement."
So hopefully we can access this later.
I'm not sure whether this is good news or bad i.e. it may be good news if you can diagnose (nanoneedle) and treat (SS-31).
@Marky I think you're correct; we need to know if the nano-needle result is real or some strange artefact. Bhupesh Prusty has provided evidence that the something in the blood causes mitochondrial fragmentation (NIH Conference April 2019). Bhupesh is hoping to publish more results soon. Perhaps Bhupesh's findings might help to identify the something in the blood i.e. what causes mitochondrial fragmentation possibly something which causes β1-adrenergic receptor signalling [https://www.ahajournals.org/doi/full/10.1161/circresaha.117.310725].
The fact that those diagnosed with ME, i.e. by an experienced Doctor, seem similar (based on metabolic tests?) is interesting. Possibly Ron means that there is one disease; however, based on genetics our responses are different.
Ron has previously mentioned the difficulty in looking for bacteria in blood samples; it's difficult to eliminate contamination of samples (bacteria on skin etc.). So perhaps this may be a reason for the difficulty in understanding this disease.
The comments about low T3 are interesting; how come low T3 is a potential issue - do we not have good biomarkers/diagnostic tests for low T3?
Thanks for the info everyone.
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Ben H
Established Member (Voting Rights)
Hi guys,
For those that missed it or were not able to watch it I summarised some of the points from the video on Twitter:
1.) For those of you not able to watch Ron speak, they are developing a $200 dollar instrument to look at the plasma/what's in blood as current $30,000 machine only enables very small amount of fractionation (I forget exact word). New $200 dollar instrument can do a huge amount more.
2.) Talking about Copaxone and SS-31. Copaxone is used for MS by injection and almost normalises nanoneedle impedance signal.
3.) SS-31 is being used/trialed in heart failure and ameliorates damage to mitochondrial inner membrane and helps negate oxidative stress. Again, seems to normalise nanoneedle impedance signal.
4.) Mentions Juan Santiago's blood deformability study, the result of that may have been affected by the fact the cells were removed from the plasma and the plasma 'factor'/something in the blood may be causing the deformability.
5.) High mercury found in some patients hair tests along with low selenium. May be due to fish intake. Selenium very important for multitude of reasons T4-T3 conversion, binding mercury, antioxidant function etc.
6.) Ron mentions 20 BILLION lost each year due to patients not being able to work etc....with around $10 million being spent on the disease. Outrageous.
Hopefully this is a little informative if you missed it, apologies if it's already been posted elsewhere.
B
For those that missed it or were not able to watch it I summarised some of the points from the video on Twitter:
1.) For those of you not able to watch Ron speak, they are developing a $200 dollar instrument to look at the plasma/what's in blood as current $30,000 machine only enables very small amount of fractionation (I forget exact word). New $200 dollar instrument can do a huge amount more.
2.) Talking about Copaxone and SS-31. Copaxone is used for MS by injection and almost normalises nanoneedle impedance signal.
3.) SS-31 is being used/trialed in heart failure and ameliorates damage to mitochondrial inner membrane and helps negate oxidative stress. Again, seems to normalise nanoneedle impedance signal.
4.) Mentions Juan Santiago's blood deformability study, the result of that may have been affected by the fact the cells were removed from the plasma and the plasma 'factor'/something in the blood may be causing the deformability.
5.) High mercury found in some patients hair tests along with low selenium. May be due to fish intake. Selenium very important for multitude of reasons T4-T3 conversion, binding mercury, antioxidant function etc.
6.) Ron mentions 20 BILLION lost each year due to patients not being able to work etc....with around $10 million being spent on the disease. Outrageous.
Hopefully this is a little informative if you missed it, apologies if it's already been posted elsewhere.
B
rvallee
Senior Member (Voting Rights)
Our knowledge of physiology is still very superficial. I'd be curious to know what % of all there is to know most physicians think we have achieved? 40%? 50%? I doubt many would estimate it at above 50%. We still have a whole order of magnitude to go by until we can comprehend the many active processes in the body. A blood draw is such a crude measure, like taking a photo and trying to decipher movement without any references but most diagnoses still depend on this crude measure.
However because of long-standing myths both those propositions are true: there are many, many things we don't know about health and disease but it is laughable that problem X is among those. Somehow, even though that's literally always been the case. Literally the definition of insanity: doing the same thing over and over again and expecting different results.
And now we have this stupid BPS thing that takes the completely backwards approach of assuming those things we don't know about 100% mean psychology and anyone suggesting otherwise is insane, in effect creating a paper-thin caricature of human behavior as a crutch to this ignorance. So it's not so much as the limits of our ignorance but a toxic mix of ignorance with human failure. It doesn't have to be this way, most of the resulting problems are choices made by people, but here we are. The same mistake, just happening at a different scale.
Feels like a Stephen King novel, where even though there are monsters out there it's usually the behavior of stupid people that ends up being the worst threat out there. I used to dislike his novels because of that but damn does he understand human nature well.
I think $200 was the target. However, until we're sure it is diagnostic (at least of a problem - even if the same problem occurs in other diseases) then I'm not sure why you would adapt it for general release.
Ben H
Established Member (Voting Rights)
Nope. That's the initial rough fabrication price and knowing Ron, somehow he'll probably get that down further.
B
wigglethemouse
Senior Member (Voting Rights)
When everyone was exiting the livestream a message came up to say who was leaving. I was happy to see a "kmorten" and that he is keeping tabs on ME presentations. I'm so hoping he stays engaged in ME research as I think he is very creative in looking at the disease.
I think it is more likely less than 5%, almost definitely less if you include the brain, if you would count all the various bodily interactions it is probably less than 1% of what can be known. This is without symbiotic liveforms we live with.