Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

[raghav]

I agree with you regarding profit motives in the long term. But I hope Prusty publishes the transferable factors list within 3 months openly so that other ME CFS researchers can take it up from there. This crowd funding will ensure that he publishes his findings within a few months otherwise people will be up in arms.

BTW Naviaux in his newsletter has given a diagram unifying all the major diseases/disorders including ME CFS which according to him are unified by his grand concept of metabolomics /exposomics (whatever) from the environment and the CDR. So he might use ME CFS as a proving stage and then try to extrapolate it to the other disorders in the diagram.

Anyway I hope we guinea pigs (which we already are) are given a decent treatment protocol at least in terms of relief from the debilitating fatigue and PEM as a first step. The total cure or comprehensive treatment will take a long time IMHO. We have to keep reminding the researchers that patients come first rather than their grand theories.

 

[Rufous McKinney]

But I hope Prusty publishes the transferable factors list

there is some ambivalence...I understand much of the world runs on $$. I'll do this, if you will help me pay my mortgage. Or whatever!

So you come up with a fabulous idea that might really help alot of people, and that took time and effort and people do deserve some reward for their efforts....

 

[raghav]

I hope Prusty does not hold us to ransom. He seems to be a decent guy and hope he comes clean. He will definitely claim his pound of flesh at least in terms of getting some limelight.

 

[Rufous McKinney]

He will definitely claim his pound of flesh at least in terms of getting some limelight.

Which is fine. Would we begrudge MAJOR HEADLINES? nope.

My sense is- he is Truely excited for both Us and Their Work.

 

[raghav]

You are exactly right in terms of him being excited. Very frankly he himself is surprised at the turn of events and how suddenly his work on not so important a virus like HHV-6 has propelled him to this height. His work on mitochondrial fission and fusion is outstanding. I give him full credit for that. I am still shell shocked why mitochondrial researchers did not see this fission and fusion phenomenon previously. I have been following mitochondrial research from around 2007 since my neuro said my brain damage is because of mito dysfunction. But he could not explain the kind of fatigue which I am experiencing. So I started reading up on mito research and nowhere is there literature on fission and fusion. Prusty has created a kind of nuclear explosion with his work. Hope and pray he delivers the goods.

 

[raghav]

I have one more fear which is what if some pharma company says to Prusty we will fund you with a cool 10 mil USD you just hand over the list of transferable factors to us and dont publish it publicly (like in the movie The Hulk). Because this list will open up pathways to curing many other diseases which is why Naviaux silently started a jv with Prusty. I hope Prusty does not get blinded by the dollars.

 

[MonkeyMan]

This is all so exciting! Could this actually be the breakthrough we've been waiting for? Time will tell, of course. And we patients have been let down so many times in the past, I'm reluctant to get my hopes up. But maybe, just maybe, this time it will be different.

 

[RL_sparky]

I hope Prusty does not hold us to ransom. He seems to be a decent guy and hope he comes clean. He will definitely claim his pound of flesh at least in terms of getting some limelight.

He seems like the real deal to me. I've seen too much over promise, under deliver by others over the years. I think he is really onto something.

 

[borko2100]

I have one more fear which is what if some pharma company says to Prusty we will fund you with a cool 10 mil USD you just hand over the list of transferable factors to us and dont publish it publicly (like in the movie The Hulk). Because this list will open up pathways to curing many other diseases which is why Naviaux silently started a jv with Prusty. I hope Prusty does not get blinded by the dollars.

Hopefully someone can replicate his work and find the factors as well. Then we don't have this problem.

 

[babeng]

Hopefully someone can replicate his work and find the factors as well. Then we don't have this problem.

Doesn't help if he patents his work or some kind of treatment that comes out of it...

Some researchers do patents and stuff just to protect their own research. Fluge/Mella patented the rituximab treatment with amino acids, but I do not think it was monetary motives.

If you are a researcher of this disease, you know the devastating effect it has on patients and their loved ones. If you still care more about money than helping these patients, then you are just not a good human being. And you probably wouldn’t have started with ME research in the first place. Naviaux will lose all credibility, being part of OMF that’s all about sharing research. That being said, when money comes to the table, people can and will change quite dramatically.

 

[Hopeful1976]

The JV of Naviaux and Prusty is news to me, and tbh it doesn’t look good.

Why? Why does it not look good

 

[IThinkImTurningJapanese]

If you still care more about money than helping these patients, then you are just not a good human being.

Many of us are not good human beings, and then many times we are. Fear is a fucked up principle.

 

[babeng]

Why? Why does it not look good

I see now that I may have misunderstood this JV thing. I interpreted this as they had established a JV company. That's what JV means where I come from, and for me this would signal a "for profit move". But if @raghav with a “jv” only meant their new collaboration (and not a JV company), I'm sure they have only good intentions

 

[Hopeful1976]

I see now that I may have misunderstood this JV thing. I interpreted this as they had established a JV company. That's what JV means where I come from, and for me this would signal a "for profit move". But if @raghav with a “jv” only meant their new collaboration (and not a JV company), I'm sure they have only good intentions

Ahh I see...
I read jv as joint venture? That's why I didn't understand. I really hope that their collaboration only means good things for us.

 

[raghav]

I meant the collaboration as JV. My mistake.

 

[raghav]

Anyway I never understood legal issues. Never my cup of tea. They can interpret it whichever way they like. For every word in the dictionary there are at least 10 to 20 contrasting synonyms. Lawyers find loopholes in everything.

Even Ron Davis said that the NIH objected to the term colllaboration the way defined by OMF and hence Davis changed it to Working Group. I also dont know what the terms and conditions of the collaboration between Naviaux and Prusty are. This crowd funding will help in getting some leverage over the research of Prusty at least in terms of the list of transferable factors.I hope somebody send a link to this forum and this thread in particular to Prusty so that he can get a sense of our fear, hopes and angst.

 

[RL_sparky]

".I hope somebody send a link to this forum and this thread in particular to Prusty so that he can get a sense of our fear, hopes and angst."

I did a quick Google search for his email and came up with: bhupesh.prusty@biozentrum.uni-wuerzburg.de
I doubt he has time to come here on the board but give him a try if you want. I figure he would at least answer a few questions. He has been hit or miss on Twitter.

 

[raghav]

".I hope somebody send a link to this forum and this thread in particular to Prusty so that he can get a sense of our fear, hopes and angst."

I did a quick Google search for his email and came up with: bhupesh.prusty@biozentrum.uni-wuerzburg.de
I doubt he has time to come here on the board but give him a try if you want. I figure he would at least answer a few questions. He has been hit or miss on Twitter.

Just now saw Prusty's tweet and am reproducing it below. This is really a very positive message for us sufferers

That is what for which we live our life. We care for those whose pain and suffering feeds our experiments. And we feel like rewarded when we see trust in the eyes of those people. Thanks to all for your trust.
https://t.co/VBjZoswc5H?amp=1

 

[babeng]

I really hope that their collaboration only means good things for us.

I have no reason to believe otherwise.

For any newcomers to this thread. Dr. Prusty is on track to identify the factor in the blood that disrupts the mitochondria and energy production in our cells. He lacks funding, so please consider to donate to his work at this fundraising campaign;
https://www.gofundme.com/f/gofundme...d=neIM37S3CNNzJvgGlEXb7AUR5MZoAEn5GW+0W0zxYHU=

 

[perrier]

Doesn't Dr Pridgen believe that Human herpes virus is at the core of the illness?