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Questions Answered by Dr. Naviaux

RL_sparky

Senior Member
Messages
379
Location
California
I saw this on FB in a closed group and have the permission from the board moderator to post this on PR.
I'm having problems with it formatting correctly here but wanted to post it anyway. I'm including the link at the bottom of this post to the original link for those who might want to view that.

Update: I was now asked by the FB board moderator to take this down. Dr. Naviaux will be making revisions and once done I or someone else will re-post it again. Sorry!

Update: Here is the revised copy. I'm fried from today so I'm just posting the link and maybe someone else will post it here. I want to add that it was brought to my attention that Dr. Naviaux's lab is running low on money. He wants it known that he needs financial support for his lab as it WILL SHUTTER if it does not receive funding.

Please consider donating to Dr. Naviaux's research:

http://naviauxlab.ucsd.edu/support/

Revised link: https://lookaside.fbsbx.com/file/Dr. Naviaux Irreverent Group QA.doc?token=AWxe06siUWTNIsk047ZYYKs3PcrYXSe4Ux2BBl_z0PUJCI6uGAMVsXgXQQFOr4RMRcZJGTnJNBN9YtPC39pQBqfAF6QVRBEZOthlVQ9MGVl5HPdJYcHhxYQkLMNBkG6FItCI0g0ZG_pwsaCh0OU0OvVYekCG82_kfJb-fJt50_6RT4ruU_Cnt0q-3Gq8lozYCt-R7GyaG1BH8vU5mkih4-zX
 
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lansbergen

Senior Member
Messages
2,512
  • We have learned from metabolomics that although there are dozens of different stresses that can trigger ME/CFS, these are all just different paths to the same disease. People with the same “core symptoms” of ME/CFS have the same metabolic abnormalities. It doesn’t matter whether the trigger was EBV, HHV6/7, Lyme, Enterovirus, organic solvents, or a pesticide, or an industrial exposure. Once you develop ME/CFS, the same core symptoms are present.
  • A major misconception in medicine is that diseases that are “caused by different triggers are different diseases”. I believe this is wrong. The vast majority of chronic diseases are caused by the body’s response to stress or injury, and not the initial injury itself. In other words, over half of all chronic disease is caused by blocks in the healing process caused by pathological persistence of the cell danger response (CDR). This is a categorically different way of think than the way we need to think about acute diseases like a broken leg or a heart attack. “Chronic” disease needs to be analyzed and treated in a completely different way.

Thank you
 

perrier

Senior Member
Messages
1,254
Thanks very much. Thanks. After reading the responses, the impression I have is that the Suramin will fix the holes in the cells, and thus, all else.

Someone please help me with the following: on what basis is this founded? The Autism study was tiny.

Of course, I'm desperate for something for a family member.

But I'm worried: is this a magic bullet dream?

Someone more knowledgeable please help out. ( my academic background is not science.)
 

perrier

Senior Member
Messages
1,254
Did I read correctly that the company that will be making the Suramin will need 2 years? Doesn't this mean the trial won't start until then? I heard the factory that originally made Suramin has closed. Thus, I'm having a bit of difficulty sorting out the planned time line.

This is all very exciting.
 

Mary

Moderator Resource
Messages
17,290
Location
Southern California
Did I read correctly that the company that will be making the Suramin will need 2 years? Doesn't this mean the trial won't start until then? I heard the factory that originally made Suramin has closed. Thus, I'm having a bit of difficulty sorting out the planned time line.

This is all very exciting.

I got the same idea and have the same question - will it take 2 years for the study to even start because of the time required to make the drug?
 

melihtas

Senior Member
Messages
137
Location
Istanbul Turkey
Naviaux has been my favorite researcher for a while now. His CDR theory is the only theory that explains all my symptoms in a single mechanism.

Apparently Suramin is at least seven years away from being commercially available for patients. I cannot wait that long.

I tried to find Suramin to conduct my own N=1 trial. I contacted pharmacies and doctors all around Africa. Unfortunately Suramin is only available via WHO in every African country except South Africa. In South Africa it is sold via pharmacies but each prescription has to be validated by MCC (Medicine Control Council) and it is only approved for African Sleeping Sickness patients. So, no Bayer's Suramin for us.

My next step will be trying to buy it from chemical suppliers as a raw material. They are very expensive though. It costs 600-1200 USD per gram. If my budget was not very limited, I would have already tried it.
 
Messages
2,087
I got the same idea and have the same question - will it take 2 years for the study to even start because of the time required to make the drug?
Me too. Logically though this doesn't make much sense. I would have thought if only 10 patients are in the first study then it would make sense to proceed with that before anyone commits to funding more.

That assumes that they can get enough suramin for the initial pilot trial. If not, then it might explain the wait.
 

perrier

Senior Member
Messages
1,254
Me too. Logically though this doesn't make much sense. I would have thought if only 10 patients are in the first study then it would make sense to proceed with that before anyone commits to funding more.

That assumes that they can get enough suramin for the initial pilot trial. If not, then it might explain the wait.
He said the Suramin is very cheap.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Thanks very much. Thanks. After reading the responses, the impression I have is that the Suramin will fix the holes in the cells, and thus, all else.

Someone please help me with the following: on what basis is this founded? The Autism study was tiny.

Of course, I'm desperate for something for a family member.

But I'm worried: is this a magic bullet dream?

Someone more knowledgeable please help out. ( my academic background is not science.)

This does not look like a cogent scientific basis for trailing suramin to me. I cannot see what autism has to do with ME/CFS. There seems to be no clear theoretical model for ME/CFS beyond vague generalisations about the ways diseases work, which I am not sure I particularly agree with.
 

perrier

Senior Member
Messages
1,254
Naviaux has been my favorite researcher for a while now. His CDR theory is the only theory that explains all my symptoms in a single mechanism.

Apparently Suramin is at least seven years away from being commercially available for patients. I cannot wait that long.

I tried to find Suramin to conduct my own N=1 trial. I contacted pharmacies and doctors all around Africa. Unfortunately Suramin is only available via WHO in every African country except South Africa. In South Africa it is sold via pharmacies but each prescription has to be validated by MCC (Medicine Control Council) and it is only approved for African Sleeping Sickness patients. So, no Bayer's Suramin for us.

My next step will be trying to buy it from chemical suppliers as a raw material. They are very expensive though. It costs 600-1200 USD per gram. If my budget was not very limited, I would have already tried it.
This is discouraging, and not many who are severe have this kind of time to wait. I checked on line there seem to be some pharmacies in Kenya selling it. But I wouldn't risk this without medical help. But there must be a way for doctors to get this.

I hope we aren't all in a dream. Remember how Valcyte was going to be the new Eden.
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
This does not look like a cogent scientific basis for trailing suramin to me. I cannot see what autism has to do with ME/CFS. There seems to be no clear theoretical model for ME/CFS beyond vague generalisations about the ways diseases work, which I am not sure I particularly agree with.

What are your thoughts on blocking purinergic signaling in the context of improving mitochondrial function and ATP production?
 

melihtas

Senior Member
Messages
137
Location
Istanbul Turkey
This does not look like a cogent scientific basis for trailing suramin to me. I cannot see what autism has to do with ME/CFS. There seems to be no clear theoretical model for ME/CFS beyond vague generalisations about the ways diseases work, which I am not sure I particularly agree with.

Haven't you seen his metabolomics studies on ME and Autism patients? Metabolic abnormalities are almost exactly the same and in his Autism trial, Suramin reversed those abnormalities.
 
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perrier

Senior Member
Messages
1,254
This does not look like a cogent scientific basis for trailing suramin to me. I cannot see what autism has to do with ME/CFS. There seems to be no clear theoretical model for ME/CFS beyond vague generalisations about the ways diseases work, which I am not sure I particularly agree with.
Thanks for your contribution Dr. Edwards.
 
Messages
2,087
Just copying sections relevant to timelines to help people figure it out.

The new commercial sponsor for the ME/CFS studies will be the same company that wants to develop suramin for autism. The first committed step is that they will need to make their own suramin. This might take another 2 years
Also:
We are in negotiations with a commercial sponsor who is planning to make all the suramin we need for the clinical trials.



The first Phase I/II of suramin in ME/CFS will cost about $400,000. If successful, it will take another 3-4 trials culminating in a multi-center Phase III trial of suramin in about 10 centers and 200-300 patients with ME/CFS. The total cost of clinical trials over the next 5 years would be about $20-30 million.
These additional Phase II studies can take another 3 years after a successful CFS1 Phase I/II study. If no safety issues are encountered and suramin is found to be effective when given as a few doses over about 6-month, then a pivotal, multi-center, Phase III trial could be started in about 4 years.

Go figure!