Robert Naviaux' Lab - News - from 2019 onwards

I haven't been following the Suramin research. Doesn't M.E affect the CNS? I'm confused.

"Suramin is a medication used to treat African sleeping sickness and river blindness. It is the treatment of choice for sleeping sickness without central nervous system involvement".

 

Robert K. Naviaux Receives United Mitochondrial Disease Foundation’s Vanguard Award

https://vchs.ucsd.edu/blog/2023/07/...drial-disease-foundations-vanguard-award.html

 

Research Roundtable: Cell danger response (CDR) inhibition of salugenesis—molecular and mechanical mechanisms and possible treatments in ME/CFS

Date & Time
Jan 24, 2025 01:00 PM

Description
Robert Naviaux, MD, Professor of Genetics at UCSD. Dr. Naviaux directs a core laboratory for metabolomics at UCSD. He is the co-founder and a former president of the Mitochondrial Medicine Society (MMS), and a founding associate editor of the journal Mitochondrion.

He is the discoverer of the cause of Alpers syndrome---the oldest Mendelian form of mitochondrial disease---and the developer of the first diagnostic DNA test for it. He is a Salk-trained virologist, and molecular and cell biologist, the inventor of the popular pCL retroviral gene transfer vectors, and was trained at NIH in tumor immunology and natural killer cell biology. His work in ecosystem dynamics has guided new work in microbiome ecology and metabolism in autism spectrum disorders. His 2013 paper reporting preclinical studies on the role of purinergic signaling and the cell danger response in autism was ranked the #1 most-viewed report of 2013 on the Simons Foundation autism web site.

He was the director of SAT1 trial, the first FDA-approved clinical trial to study the safety and test the effects of suramin on behavior and language in children with autism. “ME/CFS is a human dauer syndrome that is maintained by persistent activation of the cell danger response (CDR) through purinergic signaling.”
LINK

 

My biological switches are disrupted. I can't map them onto any danger response. Albeit a misbehaving switch is bound to alarm my cells

Some biochemical switch can make me too hyper-alert to sleep, or too foggy to think much. But its not mapped onto any danger response.

Once truncating a task sequence, this switch can typically disconnect an alarming conscious alert. Disconnect the alert from the action that actions the alert. Maybe its fused some unconscious cellular danger response (edited for clarity)

However. If I am right. Then. Maybe this switch involves parts shared by some danger response sequence. And shared by sequencing circadian rythms. And shared by un-trammelled info-processing

 

So cell danger response may not be the source of my red alerts. Hard to tell since I was rigorously trained to ignore and over-ride all red alerts, all being unacceptably re-set.

I agree its not an acceptable re-set. The alert is re-set along with the limit it alerts to. The re-set limits are also unacceptable.

The organism and cellular responses to danger are not acceptable either. As formatted to get evaluation, and action or other management. So resolving the danger ends the unacceptable response. These responses might arise at any stringent limit

I don't accept the ME/CFS resets lightly, myself. It remains unacceptable nevertheless. And it remains. That is a highly motivating predicament

But however unacceptable to me and to everyone else on the planet, it was not thereby eliminated as intended. Not eradicated as expected by measures still taken.

So it had to be excluded. Its in me to be excluded. Or its my personality that is excluded. Or its my ethics and my reason. But maybe its not a cell danger response. Nor an organism danger response.

Albeit reviled, verbally abused, blacklisted, eliminated, excluded, and highly edited across all medical and public records. Rendered. Strange. Estranged. Never making the grade

Such extremely systematic exclusion is dangerous, risky and harmful, injurious indeed. Grievous. GBH. Catastrophic (i.e permanent disability, permanent decline, death).

But in other such excluded classes it does not induce ME/CFS

Maybe ME/CFS alarmed every cell in my body. Just being so ill, at first. Also then being so excluded. Or, as indicated to the Naviaux lab, maybe it was all triggered and maintained by a wayward cellular alarm.

Or a social alarm or a mental alarm or an environmental alarm or other insults which may also trigger and maintain a cellular alarm, some say

No matter. Whatever the facts revealed they can be translated by behaviouralists into a model of aberrant thought and behaviour, without worrying about dualistic chicken and egg duels

So the Naviaux discovery of a perpetuated biochemistry with all its aberrant signalling can still be attributed to Psyche if not attributed very firmly to something else.

But even so the attribution to Psyche has already staked claim to all of biology and all of humanity, if said to be aberrant

 

Ah, but Dr Naviaux is trained and adept to find more than a cause, in his field

Upon finding a cause, he may also find a diagnostic test. And find vectors for the management and treatment of health. In his field. Effectively out-performing the crud

That would deter, and preclude, ineffective budgets for every nation to buy up the promotion of exercise. Traded at unbelievable expense. As if exercise needs promotion to maintain and remedy health. Also it would preclude, and deter, the other behavioural and psychic approaches

Psychic because that approach insists an ill person must take psychic control of illness. And an unfit person must take psychic control to exercise their way to be fit. For work

And treatment would also out-class national budgeting to buy in other complements. Eg as preferred by rumours of a new USA regime.

If Dr. Naviaux's prospective treatment is eminently affordable it would free up population budgets for the extra cost of a population's healthy safe diet. To maintain and remedy food-related health. Otherwise consigned to junk on sub-prime incomes.

And his prospective treatment can also stop the trade in fools' gold glitter: less effective, more or less unsafe programs, for the pandemic aftermaths, and for these ME/CFS increases

 

This is in 25 minutes. Here's the Zoom registration link again:

https://us06web.zoom.us/webinar/register/3717346297191/WN_P2S--MwEQiump3yng5RKFw#/registration

 

Only just seen this. Maybe they recorded it and will put it on YouTube at some point.

 

Wow that was quick. They uploaded it to YouTube one minute ago:

https://www.youtube.com/watch?v=MwtUgX5HQrE

 

I think I might have drifted off already at the ME Spine conditions.

All I can think about is that I hope someone lets the nice woman doing the intro know that using crappy Zoom backdrops makes it look as if she's wearing several live birds as hair.

Hopefully it'll get better.

 

I've completely lost track of this whole cell danger line of inquiry. How is it going?

 

Pharmaceutical chemists needed to produce new drugs

thankyou for the noticing @Mij, and thankyou for the timely reminder @forestglip, much appreciated

I am still not sure of the danger model being an origin, but nevertheless it looks like it can lead to some open door

I gather from the talk that the pharmaceutical chemists could soon provide for a shelf full of trial drugs if only they got interested

I gather the drugs purposed need to act on the periphery without crossing from the blood into the brain.

Then its much safer without the side effects from hitting the brain while its signalling is still drowned out, locally, by peripheral mayhem, to be settled down (loads of signalling detail given)

No wonder my neural signal transmission just truncates for the duration. Must I say, that may have been for the best?

Also a low dose is important or you might get into symptoms of things like congestive heart failure, or otherwise make things worse

And the drug is just temporary to get started, stopping the flaff to normalise an encyclopaedic detail of biochemistry

Reminding me now of the temporary use of nutrients as recounted by @Creekside, to stop a symptom, and a good idea to stop the dosing after a while, see if its still needed

One of the audience recounted the prescriptions they took that improved the lab results but made some part of the "fatigue" worse. This may be discussed further over a beer (Robert Naviaux's proposal)

It was also lovely to see some young researchers pursuing their interest in ME/CFS, and alongside those with longer experience, from across the globe and across various fields

Robert Naviaux touched upon the need to find common language which can take months as researchers in different fields talk FM and AM to eachother so it was not immediately communicating

 

I watched it live. While I zoned out many times, the gist I could follow was this:

Any number of insults the body experiences, like infection, trauma, or CCI, lead to the cell danger response (CDR). For the cells to recover back to health they need to go through some healing stages.

Extracellular ATP is a signalling molecule, a type of purine, too much of which prevents the healing. Naviaux believes cells are stuck in the CDR in numerous chronic conditions, including ME/CFS, LC, post-Lyme, and autism and that a drug which inhibits the eATP, or a "purine inhibitor", such as suramin, would allow healing to progress.

He said there is evidence of improvement in autism using suramin in a small trial of 10 people. I searched and found a later, larger trial of 44 people. The results in the second trial aren't anything spectacular, in my opinion, but there were some significant and some non-significant improvements over placebo.

This is just the shallowest summary, though, and there's more detail about everything in the video.

 

Sorry, I gave up at 10 minutes and went back to learning Lad O'Beirne's.

I was worried about dislocating my eyeballs rolling them.

(I accidentally pressed Post too soon. More sorries.)

 

We seem to be 80% different and 20% the same, chemically

In ME/CFS etc, he found around 80% of signs are different in each person, so he focused on the 20% we have in common

And keeps returning to this focus

I think that was an observation of the biochemistry in metabolism. He likes metabolomics.

He finds questions of the different, triggering insults, and the .... ... all return to the same biochemistry he observes

 

Suramin is impractical and its effect won't last

What is Suramin acting on?

As explained by Robert Naviaux:

I think he said he has not trialled Suramin in ME/CFS yet. Only in autism. And maybe on mice with induced illness

There are similarities and comparisons, being drawn between autism and ME/CFS, In people, and maybe in mice

He needs the chemists to find new drugs

Suramin can only be given intravenously. The effects don't last

An autistic child may speak in sentences for the 1st time. Then the effects wear off and they can't. That is how important it is to trace these ways and paths (I guess it may restore some sequencing)

Suramin only effects a maintenance. It is not the deeper, permanent correction he seeks.

I think he has only researched it in autism (and in induced ill mice, maybe). He says there are massive ethical matters, in research permissions, for experiments that load people in any way

Suramin is only licensed to use in Africa, only for the sleeping sickness (parasite?). It is illegal to even import it (without permitted reason). It is over 100 years old. The patent ran out

So its very hard to see a way to make it profitable. But there is a manufacturer, perfecting a special version of it, ready to trial on autism, soon. But no money in sight to also trial it on ME/CFS (the new version)

I guess a newcomer to this kind of lab-work might not grasp how to use it safely

He insists that chemists could find the shelf-full of drugs, which he would love to avail of for stopping this symptomatic spillage, of ATP. (EDIT) He says they are not looking yet, but if they do it would not take them long

I think he said that this excess of spilt (extracellular) ATP, that got out of the cells, is reduced by sleep?

I was reminded of this, when reading back to the 2020 posts, on this thread. Posts detailing the other things sleep (and pacing) may do, or allow for. Eg house-keeping at the level of cellular metabolism

I found it important to make sure professionals understand this is cellular metabolism gone awry. Otherwise, some may assume the reference is to the metabolism of nutrients, to the metabolic disorders like diabetes etc, and to the metabolism that can't be awry if regaining and maintaining weight, etc

All I knew was, what was indicated to me by ATP research: - on a cellular level, we seem to have inefficient conversion of oxygen, and nutrients, into energy. I guess the "energy molecule" was ATP.

I wondered if any research had also been done, on the failure to convert into tissue growth, and repair. And convert for weight-gain.

And how a body might divvy up an inefficient supply, between energy, and tissue repair or growth. It now looks like that is happening in a poisoned environment. It sounds like a poison in effect, this excess of eATP

I can't picture how it might also starve one of ATP. On a grosser level, I am often drained, poisoned and starved. As @PrairieLights said, its like stencils overlaid on each-other

It sounds like Suramin may inhibit eATP, but something else is needed to stop its over-production, or use it up.

I wonder if its the excess (of eATP) perpetuating the loop. I wonder how come this blockaded healing (salugenesis) can, nevertheless, so often get me back on track, just not sustainably

And as Suramin kills some kind of parasite, what else might it be killing?

And how do Suramin and eATP involve the conversion of nutrients into energy, and/or to grow and repair tissue, and/or to grow and regain mass

I don't recall the talk detailing eATP doing material damage, if any

.

EDIT was to clarify: he is not saying the new drugs will soon emerge, he is saying IF the chemists look it won't take them long

 

I'm glad some folk could get past the talk of how the displacement and laxity in cranio-cervical instability link somehow to the cell danger response.

It sounded so contrived I couldn't make myself take it seriously. And anyway, as soon as CCI comes into a conversation about ME/CFS I'm away on my toes.

 

He answers this question from another researcher at 2:16:20.

In short: no.

In slightly longer: there might be higher ATP levels in the "unstirred" fluid surrounding a cell, because this contains over 100 times the concentration of ATP in the blood and other easily measurable fluids, and this area better represents the local ATP signalling processes in question.

But also ME/CFS may be due to hypersensitivity to ATP, where normal amounts can maintain CDR?

I'm not sure if he's giving two possible mechanisms, or if he thinks they are both present.

 

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File attached gives the 9 minute intro

In the file attached is a tidied-up version, from YouTube's transcript, of the introduction to this Robert Naviaux talk. Eventually I cut out some ums and ahs

This intro-file is just the 1st 9 minutes of the video, as introduced by the Renegade Research ladies, explaining the developments leading them and others to converge on this cell danger reponse

Then the next 30 minutes is RN's talk on cell danger response. Starting about 9 minutes in

In RN's bit of intro, he outlines his talk, saying the 1st third is about the mechanicals.

So the rest of his talk, on the CDR, starts about 20 minutes into the video

Then the questions and discussion, between the researchers (from different fields), starting at 41 minutes

And at the end, some patients start more discussion:

- eg, at 2hrs 3minutes, a caller who is taking the drug that lowers uric acid, also the brilliant blue stuff (related to Suramin I think) and some Lidocaine cream

- with some meticulous tracking of changes in his lab-work and symptoms. The caller's previous 20yrs of abnormal tests were corrected. But little sign of symptomatic improvement. And some type of "fatigue" got worse.

I wish Robert Naviaux and his caller much Skol when they get around to fathom that

Note: The transcript starts off referring to CCI as "chronic, complex illness"

EDIT: aaaarrrghhh was working out how to attach which file so it can be opened in the browser with one click, instead of having to download and save and open it on desk-top