Questions Answered by Dr. Naviaux

[BurnA]

He said the Suramin is very cheap

It's as rare as hens teeth apparently.

 

[perrier]

Can't really be called a magic bullet when it hasn't even been tried in someone with ME/CFS yet.

Dear Hixxy,
Perhaps I should have put ' dream' in italics. You get my drift, I'm sure.....

It truly grates me daily that we go into space, invent superb robots, etc., yet we can't deal with this, and save the young people.

 

[melihtas]

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.

I wouldn't trust any information online about any drug's availability, especially in Africa. I contacted to many pharmacies and doctors in Kenya too and they said it is not available from any of their distributors.

 

[Wonko]

It's as rare as hens teeth apparently.

https://www.theguardian.com/education/2006/feb/23/research.highereducation

 

[hixxy]

With this company setting up to produce the drug and fund trials I wonder if they will be awarded a patent for a low dose formulation of this drug intended specifically for treating ME and autism? I can just imagine what the pricing will be if this is the case.

 

[BurnA]

It truly grates me daily that we go into space, invent superb robots, etc., yet we can't deal with this, and save the young people.

On the plus side if they can convince a company to sponsor the trial it would be a very significant investment.

Profit is the big motivator for any serious investment, the sooner we can attract biopharma to ME the sooner we will all get better.

With this company setting up to produce the drug and fund trials I wonder if they will be awarded a patent for a low dose formulation of this drug intended specifically for treating ME and autism? I can just imagine what the pricing will be if this is the case.

I did wonder how a company might make money from a drug that's off patent.
I am not sure how they can, unless a dose is patentable.

 

[Wonko]

Customer service is one way, only give the drug to their own distributors/doctors and only they can inject it, £10k per shot delivered with a doctor to administer it anywhere in the world, or whatever figures gives a reasonably absurd profit.

 

[BurnA]

Customer service is one way, only give the drug to their own distributors/doctors and only they can inject it, £10k per shot delivered with a doctor to administer it anywhere in the world, or whatever figures gives a reasonably absurd profit.

But if it works and if there is money to be made, anyone can make it?

 

[Wonko]

But if it works and if there is money to be made, anyone can make it?

Might not be worth it tho if they don't have a plant set up to do so, presumably doing so would displace something they are already making money from. But yes, it's a risk.

 

[Jesse2233]

Profit / patent are good if they motivate a company to produce the drug and fund trials

 

[perrier]

Profit / patent are good if they motivate a company to produce the drug and fund trials

It might be a motivator: autism, CFS, ptsd, etc etc.
The thing is: I'm not sure how Dr Naviaux is certain it will work. I'm not able to figure out the science he is using to come up with this.

 

[Kati]

Good clinical trials take time and money. There are many hurdles to go through including forming a team, going through ethics review, safety review, FDA approval building the protocol, establishing dosage, reporting adverse events and on, and on and on. A drug has to go through many phases to be approved as a treatment and there are very good reasons for that, mainly for the safety of patients and to accurately determine efficacy of the drug.

N=1 very seldom brings information that can be useful to a patient population other than having patients rushing to buy supplement or a drug out of India/Africa, and risking their health or their money in the process. If you like the researcher's work, support him through a gift of money, or by fundraising.

 

[Neunistiva]

The thing is: I'm not sure how Dr Naviaux is certain it will work.

He's not. Thus the years of work and three trials he's planning to do.

 

[duncan]

Like most, I am hopeful of Naviaux's work.

Here's a potential problem, at least in my eyes: He cannot prove it's not an active infection at play in a significant portion of ME/CFS patients, regardless of whether it's IOM or CCC or ICC criteria, or much lesser diagnostic iterations.

 

[Murph]

It might be a motivator: autism, CFS, ptsd, etc etc.
The thing is: I'm not sure how Dr Naviaux is certain it will work. I'm not able to figure out the science he is using to come up with this.

At a broad level the idea is ATP is a signalling molecule that brings on cell danger response (among other roles!). This drug inhibits ATP leaking from cells.(please correct me if i've got this wrong) I think there is a theoretical basis for it maybe working. Whether it works in actual reality is a very hard question to answer!

 

[JES]

Like most, I am hopeful of Naviaux's work.

Here's a potential problem, at least in my eyes: He cannot prove it's not an active infection at play in a significant portion of ME/CFS patients, regardless of whether it's IOM or CCC or ICC criteria, or much lesser diagnostic iterations.

I used to think of CFS as an active infection, becaues it's how I feel, as if I had some active infection. But I'm less certain after the recent developments, including the success of Rituximab in phase 2 trial. The Rituximab phase 2 results, assuming that they carry over to phase 3, contradict at least in a certain sense the active infection theroy. If there was an active infection, and assuming that it was tied to B cells, then Rituximab should have resulted in rapid improvements. But instead what happened was that patients started seeing the improvements several months later, even up to half a year.

 

[duncan]

I used to think of CFS as an active infection, becaues it's how I feel, as if I had some active infection. But I'm less certain after the recent developments, including the success of Rituximab in phase 2 trial. The Rituximab phase 2 results, assuming that they carry over to phase 3, contradict at least in a certain sense the active infection theroy. If there was an active infection, and assuming that it was tied to B cells, then Rituximab should have resulted in rapid improvements. But instead what happened was that patients started seeing the improvements several months later, even up to half a year

Eh.

 

[Jesse2233]

@melihtas

Do you know if the suramin research chemical is identical to what is used pharmacologically?

 

[RL_sparky]

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: The link had a problem. I will figure it out another time and repost.

 

[Jesse2233]

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.

How much money does he need to keep it open? Perhaps a crowdfunding campaign could be arranged