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

Rufous McKinney

Rufous McKinney

Senior Member
Messages
13,489
Rufous McKinney

Rufous McKinney

Senior Member
Messages
13,489
perrier said:
Treated with what? Anti-virals?
Click to expand...

Prusty mentioned the three things- that I thought had already been tried in the Stanford nannoneedle and corrected the signal.

Maybe we just need to correct a signal. Maybe the virus just keeps signalling. Maybe we just keep-thwarting the signal somehow, thru some treatment or pill or miracle we feel we deserve to have.

i don't know- we are just 1000s of sick people stuck in a dark forest following the few bread crumbs provided.

Then we lose half the breadcrumbs we found- or can't remember where they led?

I send money for research- why should i have any clue whats going on?
 
xebex

xebex

Senior Member
Messages
840
perrier said:
Treated with what? Anti-virals? Haven't scores of people done this with Montoya, not necessarily with great success. I must say, our family member has tested with high titters for Human herpes viruses.
Click to expand...
I dont believe the mystery thing in the blood is a virus they know what they look like and how to detect them, new viruses are being quickly discovered all the time, in my totally naive opinion it is actually an unknown substance possibly some kind of Hormone that induces dauer like states possibly triggered but the virus, but my onset was 2 days after a vaccine so that would suggest the hhv6 virus lies dormant waiting for a trigger and then the Mystery substance is releases. if it was a virus there are still lots of viruses that don’t respond to existing antivirals.
 
R

raghav

Senior Member
Messages
818
Location
India
I am posting the email response I got from the organizer of the crowd funding. Her contact details are given below.

Visitor Message from Sonja Kohl:

Dear Raghav,

Thank you for your message and your kind words.

Please understand that neither we nor Dr. Prusty know when he might publish
his results. Unfortunately, in science, that cannot be planned. You have to
know that every scientist must be certain before he can publish. The
results must be replicated and validated. A paper must be written, reviewed
and approved.

Furthermore, it is not yet known whether there is only one or more factors
(see -> Cascade). Of course, before the campaign we were in contact with
Dr. Prusty to find out exactly which project has the highest priority for
him and his team. We also had to consider what amount of money would be
realistic as crowdfunding. As described in detail in our text, this is a
subproject in collaboration with Dr. Robert K. Naviaux. Dr. Prusty's work
is the fundament and is of great importance for the whole project.

After three months Dr. Prusty cannot automatically deliver results. This is
unfortunately not possible. Science is influenced by more factors than just
time. Luck, coincidence, but also money for financing plays a major role.

Please bear in mind that we are also urgently looking for a solution. We
hope as well. Our team is suffering from ME/CFS too. Some of us severely.
In this way we hope to be able to provide a basis for further state
financing for Dr. Prusty. This will only be granted if the researcher can
provide sufficient data to support his hypothesis.

A drug exclusively for ME/CFS will take many years (see FDA approval).
However, as described in our text, Prusty and Naviaux think that there are
already drugs on the market that could help us. It is not yet possible to
say whether these drugs can cure.

I hope we were able to answer all your questions. You should find all the
answers in the text. We are very happy about your support and hope along
with you.

Many thanks and many greetings - Sonja


***

#GOfundMECFS | Support Scientific Research on ME/CFS

Sonja Kohl
Van Oldenbarneveltstraat 71a
NL-6512AV Nijmegen

sonja.kohl@gmx.net
+49 157 540 63 663
+31 24 750 53 69
 
Annikki

Annikki

Senior Member
Messages
146
This is great, thanks for sharing this!
I looked up HHV-6 and CFS and found this blog owner swearing on a stack of Bibles that it couldn't be HHV-6 at work in CFS. BTW, I think this blog writer is flat out wrong:
https://cfsremission.com/2016/09/21/viruses-retrovirus-and-chronic-fatigue-syndrome/
Maybe there is a way to counter the action of the chemical behind the mitochondrial breakdown. I also found another chemical which adversely affects mitochondria, though it may or may not be related to these findings:
From Wikipedia:
Apoptosis-inducing factor
https://en.wikipedia.org/wiki/Apoptosis-inducing_factor
Apoptosis inducing factor is involved in initiating a caspase-independent pathway of apoptosis (positive intrinsic regulator of apoptosis) by causing DNA fragmentation and chromatin condensation. Apoptosis inducing factor is a flavoprotein.[2] It also acts as an NADH oxidase. Another AIF function is to regulate the permeability of the mitochondrial membrane upon apoptosis. Normally it is found behind the outer membrane of the mitochondria and is therefore secluded from the nucleus. However, when the mitochondrion is damaged, it moves to the cytosol and to the nucleus. Inactivation of AIF leads to resistance of embryonic stem cells to death following the withdrawal of growth factors indicating that it is involved in apoptosis.[2][3]

Function
Apoptosis Inducing Factor (AIF) is a protein that triggers chromatin condensation and DNA fragmentation in a cell in order to induce programmed cell death. The mitochondrial AIF protein was found to be a caspase-independent death effector that can allow independent nuclei to undergo apoptotic changes. The process triggering apoptosis starts when the mitochondria releases AIF, which exits through the mitochondrial membrane, enters the cytosol, and finally ends up in the cell nucleus where it signals the cell to condense its chromosomes and fragment its DNA molecules in order to prepare for cell death. Recently, researchers have discovered that AIF's activity is dependent upon the type of cell, the apoptotic insult, and its DNA-binding ability. AIF also plays a significant role in the mitochondrial respiratory chain and metabolic redox reactions.[4]
Click to expand...
 
Diwi9

Diwi9

Administrator
Messages
1,780
Location
USA
This is one of those research issues that seems really promising, but I remain cautious. Still, I donated. Until we have solid ground on the mechanism of this illness, I'm all about giving researchers the opportunity to try their hand at it. Also, I believe it is beneficial for people with ME/CFS in Germany to have their resident researchers contributing to the science. My hope is that it will raise the profile of ME/CFS in Germany.
 
ShepherdK

ShepherdK

Messages
73
Location
Richmond, VA
Annikki said:
This is great, thanks for sharing this!
I looked up HHV-6 and CFS and found this blog owner swearing on a stack of Bibles that it couldn't be HHV-6 at work in CFS. BTW, I think this blog writer is flat out wrong:
https://cfsremission.com/2016/09/21/viruses-retrovirus-and-chronic-fatigue-syndrome/
Click to expand...
CFSRemission is pretty legit - he just heavily subscribes to the "gut dysbiosis" theory of ME/CFS. I don't think he is wrong at all, however I don't believe he is correct either.

My theory on ME/CFS:
  1. Trigger Event (Viral, Bacterial, Fungal, etc)
    • EBV, CMV, VCV, HHV6, HHV7, Lymes, etc
    • Probably requires a severe or prolonged event to knock the body out of homeostasis.
  2. Negative Feedback Loop
    • Underlying genetic / environmental susceptibility
    • Immune metabolic changes leading to viral reactivations
    • Gut dysregulation / dysbiosis causing further inflammation and immune stress
    • Immune metabolic changes leading to hypersensitivity
    • Disrupting the negative feedback loop probably stops disease progression, however we don't know how to kick off a positive feedback loop in the other direction.
  3. Diseased Homeostasis
    • Body eventually reaches new homeostasis that represents a severe ME/CFS patient
    • Large effort to reset / reboot multiple systems to restore healthy homeostasis.
 
RYO

RYO

Senior Member
Messages
350
Location
USA
I sometimes wonder whether this “transferable” factor originates in the gut. I don’t necessarily think a chronic viral infection is the cause although not impossible.
It would be nice if Dr Prusty’s work could somehow dovetail with the immune findings of Dr Unamatz.
 
ShepherdK

ShepherdK

Messages
73
Location
Richmond, VA
Rufous McKinney said:
We know that LPS is coming from the permeable gut....seems like if THAT must not be the something...

Yet- its sure hush hush. All these researchers looking but nothing but random hints as to whats up.

Leaving us with little oxygen.
Click to expand...

I think the transferrable factor ("something in the blood") is an antibody of some sort. I assumed this would have been closely studied, but it seems like novel antibodies are being discovered every couple of years. Antibodies would explain why some people recover (B-Cells vs long lived Plasma B-Cells), while others have the disease for years/indefinitely. There are also diseases that share many ME/CFS traits that are induced by mitochondrial auto-antibodies. If this is the case, then potentially the quickest way out would be rebooting the immune system entirely through an autologous stem cell transplant. Rituximab would only work in very early-stage patients, but identification is a challenge + Rituximab has serious side effects.

There are ways to control LPS introduced through the gut - I use NAC 500mg-1g daily during major probiotic and antibiotic regimens to handle the die-off response.
 
Rufous McKinney

Rufous McKinney

Senior Member
Messages
13,489
ShepherdK said:
I think the transferrable factor ("something in the blood") is an antibody of some sort.
Click to expand...

Makes sense....that the "something" would be tied to- the body's response to meeting a virus and or bacterial creature...our Lyme or Eppstein Barr of HHV-6 or whatever. The body meets this creature- and the something else factors influence the immune response- the resulting body response- which generates the SOMETHING .

I just sometimes wonder- if its SOMETHING tied to- cell die off. So it would be fun to just do a big lottery and we could vote and put pennies in a Jar for the winner. And then wait- for our answer to be revealed.
 
You must log in or register to reply here.
Back