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

[borko2100]

Based on his findings, I think that it's possible that something like this might be going on:

1. A bunch of cells are get infected with HHV6 (or other virus).
2. The cells start releasing some sort of substance(s) into the bloodstream which act as a SOS signal.
3. The released substance is an immune modulator (undiscovered?) that puts the body into sickness / recovery mode. Namely, it activates the immune system and reduces the energy output of other cells, this way the body is forced to rest, making recovery quicker.
4. This process is supposed to stop once the infected cells are healed.
5. If however the initially infected cells do not stop releasing that substance, then the process goes on indefinitely and you have ME/CFS. This might be because: (1) the infected cells cannot clear the infection or (2) the infection is cleared, but the cells don't realize that and keep releasing the substance anyway.

 

[Rufous McKinney]

Here is a review article on cryptic peptides...involved in doing many things and in this case affiliated with collagen....(humm!).

https://www.ncbi.nlm.nih.gov/pubmed/27173646


Cryptic Peptides from Collagen: A Critical Review.
Banerjee P, Shanthi C1.
Author information
Abstract
Collagen, a predominant structural protein in extracellular matrix (ECM), is now considered to have probable roles in many biological activities and hence, in different forms have found application as nutraceutical or pharmaceutical therapy option. Many of the biological properties are believed to be due to small hidden peptide residues in the collagen molecules, which come into play after the biodegradation or biosorption of the parent molecule. These peptide regions are called cryptic peptides or by some, as cryptides. The proteolytic hydrolysis of the ECM protein releases the cryptic peptides with many novel biological activities not exhibited directly by the parental protein which include angiogenic, antimicrobial, mitogenic and chemotactic properties. The research for understanding the role of these cryptic peptide regions and making use of them in medical field is very active. Such an understanding could lead to the development of peptide supplements for many biomedical applications. The prolific research in this area is reviewed in this paper.

Another:....

https://www.ncbi.nlm.nih.gov/pubmed/17245751


Biopolymers. 2007;88(2):190-8.
Cryptides: functional cryptic peptides hidden in protein structures.
Ueki N1, Someya K, Matsuo Y, Wakamatsu K, Mukai H.
Author information
Abstract
Peptidergic hormones, neurotransmitters, and neuromodulators are extracellular signaling molecules that play central roles in physiological signal transmissions between various cells, tissues, and organs. These factors are primarily translated as inactive precursor proteins according to the genetic information. These precursor proteins are then cleaved by various proteases including signal peptidases and processing enzymes to produce matured bioactive factors. During these processes, various fragmented peptides are also produced from the same precursor proteins. Such fragmented peptides may have various unexpected biological activities that have not been identified yet because these peptides are considered to be produced and released along with mature factors at the same secretary pathways. Recently, we found that various fragmented peptides of mitochondrial proteins that are produced during the maturation processes, such as fragments of cytochrome c oxidase, activate neutrophils whose functions are distinct from their parent proteins. These findings suggest the existence of many different functional peptides whose functions have not been identified yet. These unidentified peptides may play a variety of roles in various regulatory mechanisms, and therefore, they are expected to provide novel regulatory and signaling mechanisms, "Peptide World".

 

[Rufous McKinney]

Recently, we found that various fragmented peptides of mitochondrial proteins that are produced during the maturation processes, such as fragments of cytochrome c oxidase, activate neutrophils whose functions are distinct from their parent proteins

Above- mentions Mitochondrial proteins that are fragmented peptides.....

These sound like very likely candidates for-being SOMETHING.

 

[Rufous McKinney]

If however the initially infected cells do not stop releasing that substance, then the process goes on indefinitely and you have ME/CFS. This might be because: (1) the infected cells cannot clear the infection or (2) the infection is cleared, but the cells don't realize that and keep releasing the substance anyway.[/QUOTE

Just now pondering how this type of- theory of ME (which sounds good to me at the moment) seems quite different from the Phair' metabolic trap theory. Yet it seems like BOTH could be at work.

Something genetic (the trap)....then after the virus fails to clear or goes into hiding (I think its in hiding)....we have the constant Something in the Blood sending messages.

Or how about this- that the hiding viruses are managing to weaken the collagen which is releasing peptides which become Something in the Blood sending- the wrong message or too many of certain types of messages...leading to the response in the body we see....ME.

Ok: now lets just fix all that.

 

[lauluce]

the collagen link is certainly interesting... could it be the link between the cases of ME or ME-like syndromes caused by structural anomalies in the spine, skull and the spine-cranial junction? I, personally, sorry if I said it a million times, have an aparently severe vitamin c deficiency, soon I'll start a treatment with IV vitamin C, I wonder what the results be? I'll report the results in the forum

 

[Mary]

Folks, NIH has an event on April 22nd
NIH ME/CFS Special Interest Group Public Lecture
April 22, 2020
12:30-1:30 p.m. ET
Masur Auditorium, Clinical Center/Building 10, NIH Main Campus

Is it possible for us to raise a unified voice asking them to invite Prusty to give a lecture on his latest findings ? Who knows then Prusty might reveal the mystery molecule in the serum ?

All these acronyms and meaningless names are spinning my brain! The NIH ME/CFS Special Interest Group which is presenting the lecture appears to be an offshoot of the NIH Intramural Study on ME/CFS (I think! ) The special Interest Group is led by Avi Nath, the NINDS Clinical Director and Primary Investigator of the Intramural ME/CFS initiative, and is moderated by his Lead Associate Investigator, Brian Walitt. I have no idea what the substantive difference is between the NIH ME/CFS Special Interest Group and the NIH Intramural Study on ME/CFS.

There's also something called NANDS Working Group for ME/CFS Research, not quite sure how it's different from the NIH ME/CFS Special Interest Group or the NIH Intramural Study on ME/CFS.

In May of 2018 the National Institute of Neurological Disorders and Stroke (NINDS) announced the creation of a Working Group of the National Advisory Neurological Disorders and Stroke (NANDS) Council focused on how best to advance research on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS).

So someone is spending a lot of time coming up with groups that appear to me at least to be indistinguishable from one another. This may be why nothing is getting done at the NIH for ME/CFS.

However, the thing about NANDS is that it includes @JenB as member, as well as Rochelle Joslyn, Ph.D, both of MEAction. So I'm wondering if perhaps @JenB might have someone's ear at the NIH ME/CFS Special Interest Group or at least know who to contact re possibly getting Dr. Prusty to make a presentation. So I'm tagging @JenB here in the hope of getting her attention!

 

[Badpack]

@bctjr1993 its many things that sum up. He showed that something in the serum is making us sick. So he is the 3rd independent lab after Ron and Moreau now, which makes it a real possibility to be real and impactful for the disease. He showed that the serum creates an environment which is extremely uninhabitable for viruses. He showed that the serum is cause for mitochondrial fission which can be a real cause of fatigue and exhaustion. He promises to deliver 2 methods of testing for Cfs and 1 blood marker hopefully this year. His findings go hand in hand with many other scientists, like Rons electric measurement and the something in the blood. One key element in Rons experiment was SS31. A peptid which stabilises mitochondrial membranes. And what a suprises, it stops mitochondrial fission. Exactly what Prusty now showed. Fluge and Mella told us they think the problem is PDC. Which again is located in the mitochondria. It just seems like its finally coming together and Prusty did an awesome work connecting the dots if it holds true of course. So the hype is big. Lets hope it all comes finally together now.

 

[bthompsonjr1993]

@bctjr1993 its many things that sum up. He showed that something in the serum is making us sick. So he is the 3rd independent lab after Ron and Moreau now, which makes it a real possibility to be real and impactful for the disease. He showed that the serum creates an environment which is extremely uninhabitable for viruses. He showed that the serum is cause for mitochondrial fission which can be a real cause of fatigue and exhaustion. He promises to deliver 2 methods of testing for Cfs and 1 blood marker hopefully this year. His findings go hand in hand with many other scientists, like Rons electric measurement and the something in the blood. One key element in Rons experiment was SS31. A peptid which stabilises mitochondrial membranes. And what a suprises, it stops mitochondrial fission. Exactly what Prusty now showed. Fluge and Mella told us they think the problem is PDC. Which again is located in the mitochondria. It just seems like its finally coming together and Prusty did an awesome work connecting the dots if it holds true of course. So the hype is big. Lets hope it all comes finally together now.

Okay thank you for summing it up for me! Prusty seems like a great guy. I think people like him are how things get done. He has a true passion for solving puzzles that have baffled others, you can tell. Reminds me of Ron in that way. I am in "believe it when I see it" mode about a biomarker. Seems OMF has been saying they have one for a number of years now. Yet it is nowhere to be found in any doctor's office, and doesn't seem like it will be any time soon. I get frustrated about that. But I know there is plenty to be excited about. Man, if I had my hands on some SS31 I would be trying it TODAY. Anyway, I really want a peer reviewed paper from Prusty to be publishes detailing exactly what it is in the blood, and then I want someone to say I know how to fix that!

 

[Badpack]

@bctjr1993 yeah, same here. Trying to get SS31/Elamipretide for some time now. Sadly its not that easy and the only way right now is Alibaba with some shady stuff for moon prices. So the only thing is wait right now. Its in fast track mode for Barth Syndrom and could be available at the end of the year as off label use hopefully.

 

[Badpack]

@bctjr1993 From looking at what Prusty has said over the last weeks my guess would be like that:

1. Test: looking for the mitochondrial surface count / fission in healthy vs Cfs
2. Test: using the blood to cultivate viruses in healthy vs Cfs

1. Bloodmarker: sncRNA U14 as sign of virus reactivation

 

[Hopeful1976]

Prusty's tweets are really exciting. Is it just me and my hopeful optimism, or does he seem to be hinting at some serious discoveries for us?!?

 

[Jessie 107]

Hi Badpack, I'm as eager as you are to try it, but unfortunately SS31 is NOT (as of right now) on fast-track for approval. The FDA granted it Rare Pediatric Disease (RPD) designation, but that's different.

https://www.biospace.com/article/re...ipretide-for-the-treatment-of-barth-syndrome/

This is disappointing, so how long do you think we will have to wait for this drug?

 

[MonkeyMan]

This is disappointing, so how long do you think we will have to wait for this drug?

I was wrong. My apologies. Badpack was right. SS31 HAS been granted fast-track approval. I can't answer your question, though.

https://mitochondrialdiseasenews.co...signation-for-elamipretide-in-barth-syndrome/

https://www.stealthbt.com/programs-pipeline/#pipeline

 

[Badpack]

@Jessie 107 End of the year seems like a possible availability. If denied in the first instance bc of further studies/data needed mid 2021 is my guess.

 

[xebex]

Prusty's tweets are really exciting. Is it just me and my hopeful optimism, or does he seem to be hinting at some serious discoveries for us?!?

I feel like its THE most important discovery in ME so far and believe it could possibly be the root cause but I can’t help but wonder if it’s just the discovery of one of the malfunctions. Possibly the immune malfunction. I’d love to know how this could affect autonomic regulation and the neurological aspect of the disease. Maybe it’s to do with where the damaged mitos are in the body?

 

[stefanosstef]

I feel like its THE most important discovery in ME so far and believe it could possibly be the root cause but I can’t help but wonder if it’s just the discovery of one of the malfunctions. Possibly the immune malfunction. I’d love to know how this could affect autonomic regulation and the neurological aspect of the disease. Maybe it’s to do with where the damaged mitos are in the body?

Perhaps damaged mitochondria can cause a very diverse list of symptoms, or a multi system disease.I am saying this because of fluoroquinolone toxicity syndrome.In that case, when enough mitochondria are damaged there are many systems that can get dysfunctional.

 

[Murph]

I watched the Prusty talk. Lots in there. very promising. Seems he thinks small non-coding rna from HHV6 is causing mitochindrial fragmentation and a cell danger response.

 

[Badpack]

looking at those prices im curious what the finished market price will be. https://www.alibaba.com/product-det...539.html?spm=a2700.9099375.0.0.7c114e598NZNGr Ron said its easy to produce in the lab. Maybe its time for him to start the presses haha...

 

[maple]

Complete transparency and peer review are required. I wait.

 

[Learner1]

So, I've read through all of the above and am very appreciative of all of the links and tweets.

Without all of this knowledge, I've been working away at my own issues with the help of my doctors and getting better. I think we perhaps did things that may have solved some of the problems discussed here, without having to wait for SS31. Steps taken:

1. 20 months of Valcyte for EBV, HHV6, CMV
2. 2 years of reducing peroxynitrites which damage mito membranes, using high dose folate, B12, and recentky Kuvan.
3. 2 years of repairing mito membranes with NT Factor and IV phosphatidyl choline.

It's been long, hard, and expensive, but I can do most of what I want to physically, brain is clear, and I no longer get PEM.

I'm all for a quicker and cheaper solution but I think that stopping what's creating the whatever in the serum and damaging mitochondria and repairing the damage makes sense, given what I've read in this thread.