Naviaux to Speak on CDC Conference Call May 25

[Gemini]

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.

@alex1989, Dr. Naviaux indicated the CDR trigger has to be removed first before the "metabolic tank" can be refilled, is how I interpreted his "Treatment Strategy for ME/CFS" [chart 20.]

Perhaps that's why they're searching for a drug as well?

I thought it interesting during the Q&A Dr. Naviaux indicated treatments will most likely be individualized, that the sequence of interventions could be different for each patient.

 

[jimells]

Did he explain why the receptors do this?

Dr Naviaux explained that cells release ATP into the extracellular environment as a chemical messenger warning to neighboring cells. Obviously ATP that is used as a messenger is not available to power the cell.

Dr Naviaux didn't talk about this, but one very important cell type that can be signaled by extracellular ATP is the mast cell:

https://www.ncbi.nlm.nih.gov/pubmed/22948816

Extracellular ATP mediates mast cell-dependent intestinal inflammation through P2X7 purinoceptors.

Abstract
Mast cells are known effector cells in allergic and inflammatory diseases, but their precise roles in intestinal inflammation remain unknown. Here we show that activation of mast cells in intestinal inflammation is mediated by ATP-reactive P2X7 purinoceptors.

We find an increase in the numbers of mast cells expressing P2X7 purinoceptors in the colons of mice with colitis and of patients with Crohn's disease. Treatment of mice with a P2X7 purinoceptor-specific antibody inhibits mast cell activation and subsequent intestinal inflammation.

ATP-P2X7 purinoceptor-mediated activation of mast cells not only induces inflammatory cytokines, but also chemokines and leukotrienes, to recruit neutrophils and subsequently exacerbate intestinal inflammation. These findings reveal the role of P2X7 purinoceptor-mediated mast cell activation in both the initiation and exacerbation of intestinal inflammation.

How many of us here have gut problems?

 

[Groggy Doggy]

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.

I view CDR more loosely to mean that we have atleast one ongoing switching malfunction (most likely multiple broken switches) and our cells respond by compensating in some way. Like Newtons 3rd Law states, "for every action (force) in nature there is an equal and opposite reaction."

I feel we are just scratching the surface to get a better understanding of the mechanisms behind chronic illnesses. We still have a long way to go. OMF will continue to "follow data" and I expect we may see some twists and turns along the way.

It's exciting and fascinating to watch from the sidelines.

 

[bspg]

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

From slide 20 of the Naviaux presentation:
"Pilot study of low-dose suramin in CFS is seeking funding to launch later this year."

Click here to donate: http://naviauxlab.ucsd.edu/support/

I believe he said they are going to trial it on 10 patients but don't quote me on that.

 

[bspg]

Also, for anyone who is interested, the San Diego Union Tribune has written an article about Naviaux's trial of Suramin on Autism Spectrum Disorder. Included in the article is a video interview with Dr. Naviaux and an excellent visual description of the cell danger response.

I highly recommend watching the video!

http://www.sandiegouniontribune.com/business/biotech/93415735-132.html

 

[Gemini]

I feel we are just scratching the surface to get a better understanding of the mechanisms behind chronic illnesses...It's exciting and fascinating to watch from the sidelines.

Exciting indeed!

Liked when Dr. Naviaux said nine "other" diseases have been studied; much needed in ME/CFS research.

Liked his using a "daisy" to illustrate the common set of abnormalities found among diseases {the center of the flower} and each disease a pedal around it.

Comparing pathway abnormalities found in ME/CFS to post-Zostavax vaccination, i.e., the immune response to herpes zoster vaccine [chart 12] is a very interesting discovery!

Link to the vaccination paper:
https://www.ncbi.nlm.nih.gov/pubmed/28502771

 

[Groggy Doggy]

Exciting indeed!

Liked when Dr. Naviaux said nine "other" diseases have been studied; much needed in ME/CFS research.

Liked his using a "daisy" to illustrate the common set of abnormalities found among diseases {the center of the flower} and each disease a pedal around it.

Comparing pathway abnormalities found in ME/CFS to post-Zostavax vaccination, i.e., the immune response to herpes zoster vaccine [chart 12] is a very interesting discovery!

Link to the vaccination paper:
https://www.ncbi.nlm.nih.gov/pubmed/28502771

Yes, exactly!!! Thanks!!

It's validating to hear a researcher present materials that I can relate to regarding my version or subset of ME. From my recollection, I was not in 100% agreement with the entire presentation ... but 90-95%. I feel he is on the right track, and highly motivated to find more answers. And his Q & A session was spot on! I can't wait to hear the recording, because I plan to listen to it at least 2-3 more times to be sure I understood him correctly. He is an excellent presenter and comes across very credible. I appreciate he took the time to (hopefully) bring more awareness to the CDC, Unger, etc, about where his research is and where he plans to take it.

 

[Diwi9]

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.

I can't answer your question, other than to say that Naviaux believes this is the basis for CHRONIC illnesses in general, that the healing process has not been completed.

 

[voner]

From slide 20 of the Naviaux presentation:
"Pilot study of low-dose suramin in CFS is seeking funding to launch later this year."

Click here to donate: http://naviauxlab.ucsd.edu/support/

I believe he said they are going to trial it on 10 patients but don't quote me on that.

i donated.

I really appreciate that he is such a clear written and verbal communicator. he clearly lays out what he's doing and why.

 

[necessary8]

I wonder what actually are the costs of a trial. Is suramin expensive? His autism trial was 1.2 million. I know thats still super cheap compared to other trials, but what is that money actually spent on? Why can't he just get 10 volunteering patients and give them the drug and see what happens?

 

[alicec]

Why can't he just get 10 volunteering patients and give them the drug and see what happens?

You don't want patients to be in a medical facility where proper monitoring of any potentially adverse effects of the drug can be done, no ongoing examination of patients and extensive laboratory testing, no documentation before during and after, including the onerous trial approval process?

 

[Diwi9]

I wonder what actually are the costs of a trial. Is suramin expensive? His autism trial was 1.2 million. I know thats still super cheap compared to other trials, but what is that money actually spent on? Why can't he just get 10 volunteering patients and give them the drug and see what happens?

He mentioned in the talk that they used a metabolic profiling piece of equipment valued at $500,000. Maybe that was purchased for the trial?

 

[Jesse2233]

He mentioned in the talk that they used a metabolic profiling piece of equipment valued at $500,000. Maybe that was purchased for the trial?

Hopefully they can use it again

 

[joshualevy]

I wonder what actually are the costs of a trial. Is suramin expensive? His autism trial was 1.2 million. I know thats still super cheap compared to other trials, but what is that money actually spent on? Why can't he just get 10 volunteering patients and give them the drug and see what happens?

Actually, I think that 1.2 million for a phase-I (10 person) trial is neither cheap, nor expensive. It's pretty average. For clinical trials of this size, I've heard costs anywhere from $200k (which is really cheap) up to $10m (very expensive), but the majority are around $1m.

 

[Demepivo]

Hi, anybody know if a recording of the talk is up on the CDC website?