Robert Naviaux - ME/CFS Cell Danger Response + Autism trial science

[godlovesatrier]

I can't see this on the forum but if mods can remove this thread if it's already known to exist that would be great.

So it's only a theory but in 2017 Naviaux did a presentation with the help of the OMF about metabolic root cause and how it effects ME, with a specific presentation on how the Suramin drug worked in the autism trial. I found this very interesting as an adjunct to Suramin's ability to block CDR response in cells.

Full presentation here:

And here an explanation for how Suramin worked in the autistic trial and could have the same benefit in ME/CFS patients:

Naviaux is conducting another study this year 2020 with a 100 large cohort of autistic children to duplicate his original findings. He says they did the original trial to also prove that the drug was safe to use. He also states that only one dose was required to get the benefit.

I don't believe Naivaux is looking to do a ME/CFS Suramin trial until possibly 2021.

Hopefully this is useful to anyone interested in Suramin.

 

[junkcrap50]

What's the date of this presentation?

"Doing a study in 2020", can mean that they're only beginning to register patients into the study in 2020. Hopefully not, however. Hopefully Naviaux, since he sees autism patients, had already thought of / planned out some patient candidates, so he's not waiting around trying to find patients.

 

[godlovesatrier]

Hi @junkcrap50 I said in my above post 2017

Yes that's correct. The second autism trial is meant to happen this year though. So at least drug safety would be apparent.

 

[Hoosierfans]

Is Suramin available in the US? Is there any experience here w folks trying it?

 

[godlovesatrier]

@Hoosierfans

I found a suramin variety at high cost (I forget the exact cost) on a site, now whilst only a single dose is required to judge it's efficacy, which is money financially safe (for me) and should be medically safe, the initial cost was a fair bit. However the issue with suramin is that the mode of administration and specifics are simply not available online, I mean it's by IV but at what rate, it looks to be 20ml per litre of saline - but is that correct? Too many variables. Then there is the risk of sepsis putting an IV line in especailly if you have tiny veins and getting the right equipment, training, etc etc.

However the single dose lasting what I think appears to be a few weeks - is in my eyes pretty amazing if it actually does what it is meant to. Basically the drug is meant to stop mitochondrial fragmentation by preventing itochondrial cells from spilling apt fuel out into the blood stream. Personally I can see why that would be powerful.

Lastly whilst I think this is an exciting one, we won't know how long it works for in ME patients until the study is done. Suramin might only work for 24 hours in an ME patient at 20ml in 1 litre of saline, or it might work for a few days.

However I just looked up the suramin half life - which is a staggering 88 days (avg 50).

Now look at:

• ss-31 with a half life of 48 hours
• ubiquinol 24-48 hours
• Capaxone - 19 hours
• d-ribose - 15-25 minutes

I think these half life times are interesting, because I know if I take most things I crash quick or I crash over time and I can't even get to my next dose. Then also there's the medical efficacy, I know the only botanical that works for me (I apprecaite it doesn't work for anyone else) is siberian ginseng, which builds up in the blood exponentially over time, it can only be taken for 5 weeks before you have to stop for 14 days for full elimination. This is specific to me, but I am trying to figure out how it compares to suramin. Whilst it works, I can no longer take it due to side effects.

Lastly suramin has been around forever, you would assume if it was dangerous we would know. Saying that it does have a long list of side effects which aren't that pleasant. So there are some concerns there.

Suramin causes a fair number of side effects. Common side effects include nausea, vomiting, diarrhea, headache, skin tingling, and weakness. Sore palms of the hands and soles of the feet, trouble seeing, fever, and abdominal pain may also occur.