Dr Naviaux's Suramin & Autism Trial - publication and interview

[Jesse2233]

The pharmacometabolomics section of the study is fascinating. The focus is on purine changes but there are some pretty significant Krebs cycle corrections as well, specifically citric acid and cis-aconitate. Might suramin be restoring the function of some of these faulty metabolic enzymes that likely cause so many issusss?

 

[Rooney]

This was a single-dose trial with remarkable changes in metabolism 6 weeks later. I wish I lived around San Diego and could participate in a study of this drug for ME/CFS. He is planning for this, per his CDC presentation yesterday.

He needs support for this. http://naviauxlab.ucsd.edu/

 

[PeeWee]

Is there a way to get suramin (as a supplement, over the counter, from the doctor for some illness (& if so what illness?)

 

[Jesse2233]

Is there a way to get suramin (as a supplement, over the counter, from the doctor for some illness (& if so what illness?)

It's a pharmaceutical IV manufactured by Bayer. Not FDA approved, but used often in Africa for sleeping sickness. I believe the Red Cross can get special access to it in the US. It may also be available to US researchers

 

[BruceInOz]

One problem with the study is that the drug caused a rash in all recipients that compromised the blinding for parents.

They do sound like they have fully recognised the problem. One would hope they make sure in future studies that examiners are fully blinded to treatment group and the presence of rash and the mood of the parents. And exclude parent's perceptions from primary outcomes.

 

[hixxy]

They do sound like they have fully recognised the problem. One would hope they make sure in future studies that examiners are fully blinded to treatment group and the presence of rash and the mood of the parents. And exclude parent's perceptions from primary outcomes.

How would they blind a rash?

 

[BruceInOz]

How would they blind a rash?

That would depend on where it was. On the face and/or hands might be tricky.

 

[heapsreal]

Suramin is known to be effective against retroviruses. Seems to be a few hits on google bringing up studies on its antiretroviral effects.

 

[heapsreal]

Retroviral propagation crucially depends on reverse transcriptase (RT). We have developed murine models to test the biological effectiveness of the RT inhibitor suramin. The drug was active in our assay system, which includes (i) inhibition of RT activity in the murine T-cell tropic virus SL3-3 and Rauscher murine leukemia virus (MuLV), (ii) inhibition of plaque formation in the XC plaque assay, (iii) inhibition of viral infection of cultured murine T cells, and (iv) inhibition of splenomegaly induced by Rauscher MuLV in BALB/c mice. Suramin decreases viral titers significantly, even if started 36 hr after infection. Viral titers and number of infected cells increased to control levels after removal of the drug. BALB/c mice treated i.v. with 40 mg of suramin per kg twice per week following infection with Rauscher MuLV showed a 35% decrease in splenomegaly. Suramin is an active antiretroviral agent whose effect on retroviral propagation is reversible. We conclude that it acts as a virustatic drug and that long-term administration of suramin will be necessary if it is used for experimental treatment of human retroviral illnesses such as the acquired immune deficiency syndrome.

http://m.pnas.org/content/82/22/7733.abstract

 

[Countrygirl]

http://bolenreport.com/study-will-end-autism/

The Study Which Will END Autism!
And probably Chronic Fatigue Syndrome ME/CFS as well…
I always tell my students that when a scientific concept is finally understood the answer should be simple, elegant, and yes, even beautiful in its own way. That moment has NOW been reached in autism and the results published for the entire world to see.

I know there are FACTIONS in the autism community, as well as in the chronic fatigue syndrome (ME/CFS) community. But it is time to put those differences aside and unite to support this research. The FATE OF ALL OF US depends on joining together in common cause to end these epidemics.

 

[Aroa]

How moving for these parents and what a wonderful Dr. Naviaux´s work

What a shame this study didn´t have the proper funding. These children deserve a better future !!!

 

[Undisclosed]

How moving for these parents and what a wonderful Dr. Naviaux´s work

What a shame this study didn´t have the proper funding. These children deserve a better future !!!

N = 5. Not significant.

"The Study Which Will END Autism!"

FFS, N=5 This is premature and offering false hope. Well, let's be hopeful that these preliminary results will bring in some more research $$. Reminds of the Mikovits debacle.

 

[Kati]

N = 5. Not significant.

"The Study Which Will END Autism!"

FFS, N=5 This is premature and offering false hope. Well, let's be hopeful that these preliminary results will bring in some more research $$. Reminds of the Mikovits debacle.

None of the placebo- control group had any kind of significant response. That is significant.

This was a pilot study. They always start with very low numbers. Of course, this is still very early, they will need to go through protocols, drug dosing, safety and long term prognosis. This drug has the potential to save millions of kids from a lifetime of stigma and disability.

 

[Jesse2233]

None of the placebo- control group had any kind of significant response. That is significant.

This was a pilot study. They always start with very low numbers. Of course, this is still very early, they will need to go through protocols, drug dosing, safety and long term prognosis. This drug has the potential to save millions of kids from a lifetime of stigma and disability.

Right some of these kids spoke their first words ever after years of silence. A placebo effect is of course possible, but that's a remarkable improment even in an n=1

 

[Undisclosed]

None of the placebo- control group had any kind of significant response. That is significant.

This was a pilot study. They always start with very low numbers. Of course, this is still very early, they will need to go through protocols, drug dosing, safety and long term prognosis. This drug has the potential to save millions of kids from a lifetime of stigma and disability.

Well there is the rash issue to consider.

5 out of thousands of children with autism is not significant. So yes they need more subjects.

I doubt this will pan out.

I no longer have any faith that Naviaux will solve anything.

I am the mother of a child on the autism spectrum.

 

[shannah]

Well there is the rash issue to consider.

5 out of thousands of children with autism is not significant. So yes they need more subjects.

I doubt this will pan out.

I no longer have any faith that Naviaux will solve anything.

I am the mother of a child on the autism spectrum.

Yet others seem to think this is the answer. Can I ask why you think this won't pan out @Kina ?

 

[Kati]

Well there is the rash issue to consider.

5 out of thousands of children with autism is not significant. So yes they need more subjects.

I doubt this will pan out.

I no longer have any faith that Naviaux will solve anything.

I am the mother of a child on the autism spectrum.

Hi @Kina, thank you for sharing this private part of your family. I just hope that the work of Naviaux will prove you wrong and benefit the lives of millions, including your child and yours.

I just hope he's right. At this point, we don't know, but his work is a great start.
BY the way, I attended a science webinar talking about metabolomics. The attendees were in the thousands, from all around the world. And the CEO of Metabolon made a mention of how much of a breakthrough metabolomics profiling was a game changer for ME. The tide is turning.

 

[Orla]

It was a very small trial, so I'd agree with being cautious at this stage, but it looks worth pursuing further.

 

[daisybell]

It was a very small trial, so I'd agree with being cautious at this stage, but it looks worth pursuing further.

I agree.. the science is over my head, but I am cautiously optimistic. It seems to me that the CDR explains symptoms very neatly - and I've always been fascinated by how our symptoms overlap with other diseases/syndromes. The hypersensitivity to noise and light and difficulty filtering out irrelevant info is something that has always struck me as a strong common feature for pwme and autism.

 

[hixxy]

@heapsreal It seems unlikely it has anything to do with antiretroviral activity given that it had (mostly) the same effect in their mouse model of autism and very much doubt the mice were infected with a retrovirus by coincidence.