Naviaux to Speak on CDC Conference Call May 25

[Alvin2]

I want to add to this conversation right now but my brain just crashed.

As long as your brain didn't get the Blue Screen Of Death

Think it's time for a happy dance!!!

I think many of us will need to settle for a virtual happy dance

 

[Kati]

Do you guys know if the replication study that Naviaux was talking about from OMF is the Severely Ill cohort or are they talking of the self-pay Gordon cohort? @Janet Dafoe (Rose49) (only if you have time and have had a shower and a cup of tea)

 

[Neunistiva]

Do you guys know if the replication study that Naviaux was talking about from OMF is the Severely Ill cohort or are they talking of the self-pay Gordon cohort? @Janet Dafoe (Rose49) (only if you have time and have had a shower and a cup of tea)

I believe it is neither. He was probably referring to the Metabolomics Validations Study which is looking to replicate the first metabolomics study which was done on 84 samples and published in PNAS.

ME/CFS Severely ill Big Data Study looked at 20 severely ill ME/CFS patients. Phase I is over and I believe nothing else will be asked of these patients due to the severity of their illness.

On the other hand Metabolomics Validations Study has more samples and they were newly collected:

“We have exceeded our original goal of 110 samples. We have collected 72 samples from females (36 CFS + 36 Controls), and 54 samples from males (28 CFS and 26 Controls). The total in-house is 126 samples.

 

[melihtas]

Here is a very detailed information about cell danger response by Naviaux. He also explains why most of us feel better during summer. Pieces are coming together.

Lİnk: Metabolic features of the cell danger response

Bolding mine.

3.2. Summer and winter metabolism
Large trends in the seasonal variation of metabolism can be placed in context by considering the evolutionary forces that have acted on our ancestors. Seasonal changes in calorie availability were the rule. Summer was a time of plenty, when the environment provided abundant calories, which were harvested with physical exercise. This was a natural time for cell growth, during which building blocks were polymerized to produce new cells and increase biomass. Physical exercise ensured that the added biomass was functionally efficient. The master fuel sensor in the cell during summer is mTOR (mammalian target of rapamycin) (Yang and Ming, 2012). mTOR facilitates protein synthesis and growth using new materials taken in from the environment. mTOR inhibits the internal recycling of used or damaged cellular resources by autophagy. The pathways supported by mTOR are Janus faced. In cells capable of dividing, mTOR promotes rapid growth with net polymer synthesis, without inflammation. Used or damaged proteins, lipids, glycans, RNA, and DNA are diluted by new synthesis from fresh building blocks obtained from rich summer ecosystems. In differentiated cells that cannot dispose of excess calories without hypertrophy, mTOR excess results in the accumulation of old and damaged macromolecules like oxidized or aggregated proteins, and produces chronic inflammation—oxidizing conditions that act as a thermodynamic break on the inexorable accumulation of intracellular polymers like lipids, proteins, glycogen, and nucleic acids from their monomer building blocks.

Winter was a time of caloric restriction and a time when resources stored in the summer and fall had to be used with great efficiency if survival was to be assured. The master fuel sensor in the winter is AMPK (AMP activated protein kinase) (Salminen and Kaarniranta, 2012). AMPK optimizes energy efficiency and stimulates the recycling of cellular materials in autophagy. This cycle occurs to a lesser extent each night and during fasting. The pathways activated by AMPK support regeneration and are anti-inflammatory because they work to break down damaged proteins, lipids, glycans, RNA, and DNA. AMPK facilitates the resynthesis of these macromolecules from newly synthesized monomers and refreshed building blocks. Monomer synthesis and polymer synthesis are balanced for winter maintenance. Historically, before the 1980s, most human nutrition research was focused on disorders of deficiency. After the 1980s, much of human nutrition research has been redirected to disorders of caloric excess. Indeed many of the genes that have been found to guard against age-related diseases like diabetes, cancer, and heart disease are found to be “winter genes” coordinated by AMPK, while the “summer genes” coordinated by mTOR lead to chronic disease and inflammation when combined with caloric excess and physical inactivity. Technological progress and industrial scale farming practices have been a double-edge sword for the health of populations around the world. Many developed nations now experience an “endless summer” of calorie availability, decreased physical exercise, and an absence of the historical norm of winter caloric restriction. This has led to modern epidemics of obesity in both adults and children, and to a growing tide of chronic disease traceable to cellular inflammation.

 

[Aroa]

During CDR, the cell's channel receptors react by discharging ATP. This causes the mitochondria to produce more ATP, which can exhaust resources within the cell

How will this fit with the hypothesis that glycolysis is shut down ?

That is what Fluge & Mella and Dr, Davis suggested.

 

[natasa778]

I have started a new thread on Dr N's suramin trial, paper out today (26 May)

http://forums.phoenixrising.me/inde...autism-trial-publication-and-interview.51753/

Results from suramin autism trial are now available and they are very encouraging. Detailed information is available on No of One website including this interview which contains extensive information not available in the actual paper.

 

[Janet Dafoe]

Do you guys know if the replication study that Naviaux was talking about from OMF is the Severely Ill cohort or are they talking of the self-pay Gordon cohort? @Janet Dafoe (Rose49) (only if you have time and have had a shower and a cup of tea)

It is neither. It is what he calls his North American cohort, with patients not just from around San Diego, to replicate with geographical diversity.

 

[Solstice]

Between Naviaux's CDC presentation and the OMF announcement of the three new additions to their SAB "Dream Team".. I've been excited and pumped up all day!!!

Think it's time for a happy dance!!!

Knock yourself out, aslong as you, you know, don't knock yourself out.

 

[Gemini]

I'm not the most fluent person here, but can try to summarize just a portion....you can compare a bit of what I said with his powerpoint...

Excellent summary, @Diwi9!

My favorite Powerpoints:

Chart 8 triggers of CDR: Injury, infection, trauma, toxins, radiation, pollution, solvents, mutagens, heavy/trace metals/ food chain degradation, ecosystem disruption

Chart 9 "It takes more energy to relax than to react:" hallmarks of a low energy state: anxiety, restlessness, irritability, fear of change, OCD behaviors, sensory & chemical hypersensitivities, meltdowns, and bouts of hyperactivity, and even seizures [my underlining]

Chart 11 Metabolomics Permits Diagnosis of ME/CFS: graphs of ME/CFS vs controls [Naviaux PNAS paper].

Chart 12 Pathway Abnormalities between ME/CFS and Post-Zostavax Vaccination. [ Li paper "Metabolic phenotypes of response to Vaccination in Humans" hot-off-the-press, published 18 May 2017.]

Edit to add Powerpoint link:

https://www.omf.ngo/2017/05/24/dr-naviaux-cdc-presentation/

 

[Neunistiva]

OMF's Facebook page just posted this:

"The call was recorded by the CDC. The audio recording and a transcript will be available in a couple weeks. We will share the links at that time."

 

[ash0787]

thats interesting, I never heard of that before, I have an impression that I do a lot worse at this time of year, but then I do have moderate hayfever so that might explain most of it

 

[melihtas]

thats interesting, I never heard of that before, I have an impression that I do a lot worse at this time of year, but then I do have moderate hayfever so that might explain most of it

Yes, I do worse at this time of year too because my health level gradually declines all through the winter and at the end of the winter I am at my worst condition. During summer I improve gradually and at the end of summer my health level reaches the best condition. Spring is my worst, fall is my best time of the year. Summer heals me but does it slowly and doesn't last long.

 

[Groggy Doggy]

Yes, I do worse at this time of year too because my health level gradually declines all through the winter and at the end of the winter I am at my worst condition. During summer I improve gradually and at the end of summer my health level reaches the best condition. Spring is my worst, fall is my best time of the year. Summer heals me but does it slowly and doesn't last long.

I do the worst in the summer months because I suffer from heat intolerance. Fall is still to warm. I come alive in the Winter! And in the early spring I feel like I am blooming.

 

[ash0787]

Did he say how much the CDR can scale and whether they have been able to link it proportionally to illness severity ?

I don't disagree that the CDR is switched on but it doesn't seem likely to be the root cause, and if it is I doubt it would be as easy to switch off as altering the levels slightly of various chemicals because something would have to go seriously wrong for it to be switched on all the time, otherwise cfs/me would be a lot more common.

 

[alex1989]

It is neither. It is what he calls his North American cohort, with patients not just from around San Diego, to replicate with geographical diversity.

Hi Janet, feel free to ignore this if you can't answer, but I'm sure I'm not alone in wondering whether Ron has the same interest in Suramin as a prospective treatment for CFS as Bob Naviaux?

 

[Neunistiva]

Hi Janet, feel free to ignore this if you can't answer, but I'm sure I'm not alone in wondering whether Ron has the same interest in Suramin as a prospective treatment for CFS as Bob Naviaux?

Judging from the OMF's YouTube video: Q&A on ME/CFS Research with Dr. Ron Davis I would say yes:

"Ron Davis: Robert Naviaux has suggested that this is a ‘cell danger response’ in the body, and that it’s a metabolic state that is designed to protect the organism. He believes that we should be able to find something, to turn it back on.

I think that’s highly likely - that that’s what’s going on with this disease, given everything we’ve done. And we certainly have not found anything that’s inconsistent with that.

I think that’s what we want to look for, as a drug. It’s likely that a single drug will work; it could be though that we have to use combinations of drugs. That’s easily tested with this device [chip] if we get to that point. I’m optimistic that we can find something; I don’t think that it’s likely to be a cocktail of different nutrients – that’s what a lot of people have tried, and it hasn’t really worked. I think it’s going to be a drug – and possibly a very surprising drug, that nobody’d ever occurred to them that it would actually work."
​

Bolding is mine. Here's a transcript if someone is too tired to watch the video.

 

[alex1989]

Judging from the OMF's YouTube video: Q&A on ME/CFS Research with Dr. Ron Davis I would say yes:

"Ron Davis: Robert Naviaux has suggested that this is a ‘cell danger response’ in the body, and that it’s a metabolic state that is designed to protect the organism. He believes that we should be able to find something, to turn it back on.

I think that’s highly likely - that that’s what’s going on with this disease, given everything we’ve done. And we certainly have not found anything that’s inconsistent with that.

I think that’s what we want to look for, as a drug. It’s likely that a single drug will work; it could be though that we have to use combinations of drugs. That’s easily tested with this device [chip] if we get to that point. I’m optimistic that we can find something; I don’t think that it’s likely to be a cocktail of different nutrients – that’s what a lot of people have tried, and it hasn’t really worked. I think it’s going to be a drug – and possibly a very surprising drug, that nobody’d ever occurred to them that it would actually work."
​

Bolding is mine. Here's a transcript if someone is too tired to watch the video.

Yes, I understand they have the same basic theory of the disease. But Ron has spoken of (I believe, has begun) testing a vast array of drugs in the hope of isolating one that works, whereas Naviaux, to judge by the slides, seems to believe that we probably already have the answer in Suramin - thus my question.

 

[Neunistiva]

@alex1989 I understand why you asked, and that's why I bolded the part where Dr. Davis said it's possibly a very suprising drug that nobody thought of before. At that moment it sounded to me like he had a specific drug in mind already, so when Dr. Naviaux mentioned Suramin it was like a puzzle piece falling into place in my mind.

But I am just guessing all of this, so I will stop taking up space with my speculations and let someone who actually knows what they're talking about answer

 

[necessary8]

So I guess the question is - when can we expect a suramin trial in ME/CFS patients?

Also, does anyone intend to try it themselves? I'm not sure how safe it is. It's an IV, from what I'm seeing. Maybe one of you who has a good ME/CFS specialist as a doctor could suggest it to them?

 

[alex1989]

@alex1989 I understand why you asked, and that's why I bolded the part where Dr. Davis said it's possibly a very suprising drug that nobody thought of before. At that moment it sounded to me like he had a specific drug in mind already, so when Dr. Naviaux mentioned Suramin it was like a puzzle piece falling into place in my mind.

But I am just guessing all of this, so I will stop taking up space with my speculations and let someone who actually knows what they're talking about answer

I hope you're right – it just seems a little odd to me, as Naviaux has been talking about Suramin for quite a while (it was bandied about a bit, for instance, when his paper on ME was published last year). If Ron also thinks its probably Suramin, why didn't the OMF just fund a trial once they uncovered evidence that CDR was central to the disease (which seems to have been at least a year ago)? Seems a bit curious.