Naviaux Lab Newsletter: ME/CFS Research Plan for 2020

[Gemini]

[excerpt]
In 2020, we will launch a new study to examine the network connections between the metabolome and exposome. Using advanced machine learning and network dynamic analysis, this new study will help pave the way for the future suramin ME/CFS treatment trial.

Other exciting studies include a new collaboration with the brilliant virologist, Dr. Bhupesh Prusty at the University of Würzburg, Germany. Using a new, cell-based assay system, we are hot on the trail of both the identity and the biological control of the activity in ME/CFS blood that causes fatigue.

This “fatigue factor” looks like it could be the same thing that coordinates the mitochondrial and metabolic features of the cell danger response (CDR) and inflammation5, changes impedance in the nanoneedle10, inhibits recovery from illness by blocking the healing cycle9, induces a dauer-like state11, and triggers collagen remodeling over time that can cause acquired forms of Ehlers Danlos-like syndromes.

If successful, these studies will help fill in missing details in how suramin, copaxone, and elamipretide (SS31) might work to treat ME/CFS.

http://naviauxlab.ucsd.edu/wp-content/uploads/2019/12/Naviaux-Lab-Newsletter-Winter-2019_v10_sm.pdf

[my bold & paragraphing]

 

[Canned]

That are really good news! I think the „something in the blood“ is the right path to get a treatment.

I wonder what this cfs-particle is.. it might lead to the cause of mecfs. When it’s identified, maybe the pharmaceutical industry gets finally interested in us.

 

[Gemini]

I think the „something in the blood“ is the right path to get a treatment...I wonder what this cfs-particle is.. .

Agree @Canned!

Bhupesh Prusty's presentation at the NIH ME/CFS Conference in April 2019 explores possible particles (see 27-minute YouTube video).

It's good to hear his important work will continue with a collaboration with the Naviaux Lab.

 

[MonkeyMan]

The newsletter says, "Suramin is now being made by a new company that will be sponsoring the next clinical trial in autism spectrum disorder. "

I wonder if that company would allow patients like us to try it (out of compassion), if we sign all the waivers?

 

[roller]

there is a list of covid trials and there meds...

https://www.cebm.net/covid-19/registered-trials-and-analysis/

Suramin sodium Antiparasitic; mode of action not known; used to treat first-stage African trypanosomiasis and onchocerciasis

 

[Dufresne]

That are really good news! I think the „something in the blood“ is the right path to get a treatment.

Unless the "something in the blood" is part of an intelligent process that keeps us alive.

 

[Canned]

Unless the "something in the blood" is part of an intelligent process that keeps us alive.

I accually thought about that quit some time.
If prustys findings are correct, then there might be an infection, for example in the brain. Shutting down the cells via „something i t blood“ might stop the infection to get worse (antiviral phenotype).

But i could also be some overdriven sicknessresponse. Something that has no purpose, like autoimmunity.

I think that is more likely to be the case. People do get better on non antiviral treatments like methylprednisolon or L-Glutamine.

Anyway i see 3 Treatment options:

• Target the infection
• Inhibit the factors in the blood
• Restore the cells/mitochondria

Hopefully we will see something like that very soon..

 

[Dufresne]

I accually thought about that quit some time.
If prustys findings are correct, then there might be an infection, for example in the brain. Shutting down the cells via „something i t blood“ might stop the infection to get worse (antiviral phenotype).

But i could also be some overdriven sicknessresponse. Something that has no purpose, like autoimmunity.

I think that is more likely to be the case. People do get better on non antiviral treatments like methylprednisolon or L-Glutamine.

Anyway i see 3 Treatment options:

• Target the infection
• Inhibit the factors in the blood
• Restore the cells/mitochondria

Hopefully we will see something like that very soon..

The problem with the search right now is that many of these scientists still believe we're these pristine systems that somehow go awry. They're willing to believe there was perhaps a pathogen to kick it off, the hit and run idea, but that the infection is now long gone. They trust that PCR's are plenty sensitive and that we'd be able to detect an infection. This is just not true. Even Ron Davis, who I respect and who's work is important, has voiced this opinion.

Dr Naviaux, however, suggested the CDR could be in place to protect us from intracellular infections spreading. I believe this to be the case. I also think MCAS plays a bigger role than is currently recognized, and this does a good job of further messing up the terrain. Autoimmunity is certainly possible. But I don't think this just happens because the immune system is bored. Our researchers need to up their bug hunting game in a big way. And frankly I don't trust Ian Lipkin, so I'm not holding my breath on that one.

 

[Canned]

On the Naviaux homepage are some updates.
„
We think the CDR-activating factors that can be transferred to healthy cells in the lab from ME/CFS patient serum, and from the medium from iHHV-6 containing cells in the lab, are responsible for the post-exertional malaise (PEM) that is so devastating to patients with ME/CFS.
„
Also prusty tweeted that he has an explanation for PEM some weeks ago.

I wonder if these factors are something produced from the body or something from a virus.

 

[MonkeyMan]

On the Naviaux homepage are some updates.
„
We think the CDR-activating factors that can be transferred to healthy cells in the lab from ME/CFS patient serum, and from the medium from iHHV-6 containing cells in the lab, are responsible for the post-exertional malaise (PEM) that is so devastating to patients with ME/CFS.
„
Also prusty tweeted that he has an explanation for PEM some weeks ago.

I wonder if these factors are something produced from the body or something from a virus.

Thanks for finding and posting this. Slowly but surely, these researchers are closing in on the Ghost in the Machine. It can run but it can't hide forever ...

In my opinion, the factor(s) are produced by the body itself - an abnormal immune response or something along those lines. This would explain why some of us feel better if we don't get a full night's sleep - less of the stuff is produced.

 

[Wishful]

This would explain why some of us feel better if we don't get a full night's sleep - less of the stuff is produced.

Sleep also flushes out waste products from our brains. There was a thread a while back about that. We have fluid channels in our brain for this, and astrocytes pump the crap out while we are in the appropriate sleep mode. Astrocytes are part of our immune systems, so any abnormalities in immune response (and sleep) could hamper the waste removal.

 

[MonkeyMan]

Sleep also flushes out waste products from our brains. There was a thread a while back about that. We have fluid channels in our brain for this, and astrocytes pump the crap out while we are in the appropriate sleep mode. Astrocytes are part of our immune systems, so any abnormalities in immune response (and sleep) could hamper the waste removal.

Very interesting; I hadn't seen that. Thanks for posting this.