BurnA
Senior Member
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It's as rare as hens teeth apparently.He said the Suramin is very cheap
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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It's as rare as hens teeth apparently.He said the Suramin is very cheap
Dear Hixxy,Can't really be called a magic bullet when it hasn't even been tried in someone with ME/CFS yet.
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.
https://www.theguardian.com/education/2006/feb/23/research.highereducationIt's as rare as hens teeth apparently.
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.
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.
But if it works and if there is money to be made, anyone can make it?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.
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.But if it works and if there is money to be made, anyone can make it?
It might be a motivator: autism, CFS, ptsd, etc etc.Profit / patent are good if they motivate a company to produce the drug and fund trials
The thing is: I'm not sure how Dr Naviaux is certain it will work.
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.
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
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.