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

[keepontruckin]

It has just crossed my mind that maybe sending emails to various Women's equality and gender government organizations might raise awareness of the funding problem. If it is the poorest funding disease affecting a predominantly female population, it might be a good idea to appeal to them to raise awareness of this as an injustice to women. I think these bodies have very diverse range of issues they document and maybe there is nothing to lose. Someone may have time and an inclination to explore this.

 

[5vforest]

Yes. There was that "Pineapple" donor a few years ago who gave $5 million to OMF. Wonder if they might be willing to help again?

There are more millionaires and billionaires being made every day in the cryptocurrency world. (Example: https://www.vox.com/recode/2021/3/2...e-biden-ftx-cryptocurrency-effective-altruism)

If I were in the fundraising world, I would probably consider some sort of outreach to them.

 

[JES]

This will sound silly but OMF people should look for HHV-6 and EBV latent infection, didn't they say that they usually work with a small number of severe patients ? well what if none of the patients they are looking at have me/cfs thats caused by this mechanism ? maybe if they looked at a wide variety of moderate patients they would find this pathogen they are looking for. The research doesn't correlate as usual.

OMF has looked for herpesviruses in the blood of the severe ME/CFS patient group, they did it already in 2017. There were no statistically significant differences. I reckon Ron saying they found less viruses on average than in healthy people. What they haven't done yet is look for enteroviruses, fungi and some other pathogens, progression has been really slow on that front. Quote from this web site:

No significant differences were found for any major DNA viruses between patients and controls using cell-free DNA from the blood. By using cell-free DNA it was possible to look for even the viruses that can hide behind the blood-brain barrier escaping detection by normal means. In addition, the blood of patients was examined for new pathogens by isolating particles from the blood and using DNA sequencing. No new pathogens were found.

 

[Pyrrhus]

OMF has looked for herpesviruses in the blood of the severe ME/CFS patient group, they did it already in 2017. There were no statistically significant differences. I reckon Ron saying they found less viruses on average than in healthy people. What they haven't done yet is look for enteroviruses, fungi and some other pathogens, progression has been really slow on that front. Quote from this web site:

Good point, @JES !

By using cell-free DNA it was possible to look for even the viruses that can hide behind the blood-brain barrier escaping detection by normal means.

By the way, this statement is highly controversial, to say the least...

 

[Reading_Steiner]

It seems they feel confident they have confirmed the tryptophan metabolic trap exists. Therefore the theory that we could be unsprung: does seem to have considerable validity.

And I'll hold out hope for: rapid testing results. But rapid just often never seems to apply.

Yes definitely, not sure if they have confirmed it in humans yet ( ? ) just yeasts. I can't see that it necessarily causes chronic fatigue syndrome though, it seems to be a bit of a leap, maybe it just makes people a little more tired or makes their hair fall out or something weird. I feel like they are putting all their hope on it just because there isn't many other ideas.

 

[ljimbo423]

By the way, this statement is highly controversial, to say the least...

How could a virus get into the brain and yet no viral DNA get back out into the bloodstream?

 

[Rufous McKinney]

yet no viral DNA get back out into the bloodstream

Viruses don't have DNA typically, they use ours.

There is some viral ghost phenomenon, where parts of viruses exist but not the original virus itself....

What did Dr. Prusty report in this podcast?

 

[Rufous McKinney]

I feel like they are putting all their hope on it just because there isn't many other ideas.

The Swedish group also sponsored by OMF just published a major hypothesis looking at the ICU patients and nothing there involved Tryptophan.

 

[andyguitar]

Viruses don't have DNA typically, they use ours.

Some have DNA others RNA.

 

[Rufous McKinney]

Some have DNA others RNA.

oh: I guess my friend Eppstein is a DnA virus...

anyway- it seems the viruses have agenda's they have not yet discussed in detail with us viral victims.

 

[ljimbo423]

I guess my friend Eppstein is a DnA virus...

Yes, HH6 is also a DNA virus.

 

[Rufous McKinney]

Yes, HH6 is also a DNA virus.

Dr. Amy Proul (part of the...Harvard...team?) was discussing the ghost viruses...that they are leaving these parts lying around.....

 

[Rufous McKinney]

Dr. Prusty is in Germany and Prof. Tyson is in England. Very thankful Dr. Davis and Janet Dafoe for waking up or staying so early to do this.

Hopefully Dr. Prusty and Dr. Davis reveal a bit more information on Dr. Prusty's recent discoveries.

I listened to most of the interviews...Prusty has TWO substantial grants which he is happy about. One will compare us with Long Haul folks (autoantibody related) and the other will be...approaching $900K, multi year, long haul and ME and look at specific cells and their respective mitochondria fragmenting.

Listening to Janet Dafoe describe what she has given up, to care for her son- is a form of DOUBLE or Triple crime. Whitney himself on hold, but doing better! and Janet having to end her career to care for him, and then you husband is often at a lab, missing, so add that.

Warning- that section left me feeling pretty distaught. It would be valuable for caregivers to listen.

 

[Rufous McKinney]

It has just crossed my mind that maybe sending emails to various Women's equality and gender government organizations might raise awareness of the funding problem.

I'm going to think about this more.

Listening to Janet Dafoe in the interview- its really hit me what SHE has given up. How many women have to give up their careers or other interests to try to take care of sick family members abandoned by a system that pretends we never happened?

 

[Pyrrhus]

How could a virus get into the brain and yet no viral DNA get back out into the bloodstream?

The fluid in the brain is washed out into the lymph nodes, where it is processed before returning to the blood stream. It's controversial to say that pathogen DNA might somehow survive this processing step.

 

[Learner1]

I just had positive PCR HHV6 show up after being negative 6 weeks earlier. I had over a year and a half of significant treatment for it 4 years ago. I wouldn't underestimate these viruses hiding out only to reappear.

 

[junkcrap50]

I just had positive PCR HHV6 show up after being negative 6 weeks earlier. I had over a year and a half of significant treatment for it 4 years ago. I wouldn't underestimate these viruses hiding out only to reappear.

Dang, that's crazy. What prompted the testing and retesting?

 

[Canned]

I‘m a little bit disappointet with the prusty talk to be honest.. He basicly said that Research takes time and we shouldnt expect a breakthrough any other month. But didnt he said about 6 month ago, that hes close to a biomarker? Mhh

 

[BrightCandle]

I‘m a little bit disappointet with the prusty talk to be honest.. He basicly said that Research takes time and we shouldnt expect a breakthrough any other month. But didnt he said about 6 month ago, that hes close to a biomarker? Mhh

This is one of my fears with what he said in January where he said this was the year of the cure. Unless he was sitting on something that genuinely worked that was false hope. I can't help but think now this update is the exact opposite of his new years statements.

 

[bensmith]

This is one of my fears with what he said in January where he said this was the year of the cure. Unless he was sitting on something that genuinely worked that was false hope. I can't help but think now this update is the exact opposite of his new years statements.

prusty and whitney said that last winter?

yes i hear you.