How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?

[frozenborderline]

Life expectancy thirty years shorter??? That number sounds way wrong, where are you getting it? I think it’s closer to 4 years shorter if treated

 

[ScottTriGuy]

Drugs don't cure AIDS, they can keep you chronicany ill, very ill actually with a life expentancy 30 years younger than people who are cured (aka healthy).

Wrong.

Any one diagnosed with HIV in the last few years that has access to HIV medications has virtually the same life expectancy as a non-HIV individual.

HIV meds do not keep people chronically ill. They keep people from dying and allowing them to live normal productive lives.

As someone living with HIV since 1998, I can attest that it does not impact my life even 1% of how ME does. And 99% of people with HIV (and meds) are healthier than 99% of people with ME.

 

[Diwi9]

Wrong.

Any one diagnosed with HIV in the last few years that has access to HIV medications has virtually the same life expectancy as a non-HIV individual.

HIV meds do not keep people chronically ill. They keep people from dying and allowing them to live normal productive lives.

As someone living with HIV since 1998, I can attest that it does not impact my life even 1% of how ME does. And 99% of people with HIV (and meds) are healthier than 99% of people with ME.

A testament to what funding biomedical research can accomplish. I'm just sorry that while you are able to manage HIV, you still have the ME to contend with.

 

[suevu]

Wrong.

Any one diagnosed with HIV in the last few years that has access to HIV medications has virtually the same life expectancy as a non-HIV individual.

HIV meds do not keep people chronically ill. They keep people from dying and allowing them to live normal productive lives.

As someone living with HIV since 1998, I can attest that it does not impact my life even 1% of how ME does. And 99% of people with HIV (and meds) are healthier than 99% of people with ME.

Well in my country the most known icone of HIV patient has died recently from another inmunological disease related to it:

https://es.wikipedia.org/wiki/David_Delfín

If any patient with any disease call it ME or HIV needs to live on a medication, can't be considered cured.

Do you think HIV has nothing to do with you getting into ME?

 

[ScottTriGuy]

Do you think HIV has nothing to do with you getting into ME?

I have yet to meet another person living with HIV (and I've worked in the HIV industry since the early 2000s) that has ME.

I wonder if the HIV meds are keeping me less sick with ME, especially due to the anecdotal reports of improved quality of life of some ME folks who take Tenofovir.

 

[Pyrrhus]

I have yet to meet another person living with HIV (and I've worked in the HIV industry since the early 2000s) that has ME.

I have met someone with both ME and HIV. However, they contracted HIV many years after falling ill with ME.

Dr. Chia, who has treated thousands of ME patients, says that only 4-5 of his patients have HIV.

 

[suevu]

I have yet to meet another person living with HIV (and I've worked in the HIV industry since the early 2000s) that has ME.

I wonder if the HIV meds are keeping me less sick with ME, especially due to the anecdotal reports of improved quality of life of some ME folks who take Tenofovir.

Id rather have HIV than ME if I had to chose, there are drugs that keep it at bay nowadays but no means they cure it like someone said in a previous post.

I have little trust in drugs as the take very long to be on the market, many cause more harm than good, and here we are, in 2019 and nothing to turn to in the whole science scene. All medicine has done to us is harm.

 

[Hip]

@adamjfpickering @melihtas

Do we know the concentration of suramin that Ron Davis used in his nanoneedle test? I wonder if the experimenters in this thread trying suramin actually took an injectable dose which matched that nanoneedle concentration?

The problem with suramin is that it has a very high plasma protein binding of 99.7%. Ref: here

That means almost all (99.7%) of the suramin you inject is going to be lost, because as it binds to proteins, it becomes biologically inactive. (This is known as the free drug principle, which states that the portion of the drug which binds to proteins becomes inactive).



I note that people here experimenting with suramin used 1000 mg doses. If we assume the body contains around 40 liters of fluids in which any administered drug will distribute to, then 1000 mg distributed in 40 liters equates to a concentration of 25 μg/ml.

But that 25 μg/ml is the total concentration of suramin in the blood: the sum of the free and protein bound suramin. We have to subtract from that the 99.7% of the suramin which is protein bound, in order to calculate the concentration of free and active suramin.

So the free suramin concentration will be 25 * (100 - 99.7) / 100 = 0.075 μg/ml = 75 ng/ml.


Thus 75 ng/ml is the blood concentration of free suramin you will get when injecting 1000 mg of suramin.

We need to compare this 75 ng/ml to the concentration of suramin that Davis used in vitro in his nanoneedle test. If this blood concentration is much lower than the nanoneedle concentration, that might explain why it did not work.

 

[dreamydays]

I believe Piperine could help with this but Suramin is quite toxic
https://pubmed.ncbi.nlm.nih.gov/28948673/