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

Tally

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Stomach ulcers where thought to be caused by stress until it was proven wrong. Smoking was good for you until it was proven wrong.
You are just proving my point. It was an opinion until scientific proof emerged. There was never any proof that stress causes ulcers.

Also it could well be that einstein was wrong, wasn't he in denile about spooky action at a distance?
Denial = opinion.

--------------------

Homeopathy doesn't work on two levels:

1. Theoretical - As you said yourself, everything we know about water would have to be questioned in order for homeopathy to work. But water is far too ubiquitous. It is used in medicine, physics, chemistry... and no one has ever run into anything that would contradict what we know about water. It always does exactly what scientists expect it to do.

2. Practical - Despite contradicting laws of physics, scientists really gave homeopathy a fair shot, despite what you say. A total of 57 systematic reviews, containing the 176 individual studies, focused on 68 different health conditions - and found there to be no evidence homeopathy was more effective than placebo on any.

If it doesn't work in theory and it doesn't work in practice, it's time to accept it doesn't work.

Really, we shouldn't be discussing this anymore than we should discuss if a tonic made of urine sold out of a horse-drawn carriage is going to make your hair grow if you rub it on your head.

There is no such thing as homeopathic suramin,
 
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sb4

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You are just proving my point. It was an opinion until scientific proof emerged. There was never any proof that stress causes ulcers.
Not really sure the point you are trying to make here. I am sure the scientist that said ulcers where caused by stress had "proof". It was just faulty proof. It took up until that doc who ate h pylori to prove that that proof was faulty. Just like it took until einstien to prove newtons proof was faulty.

. Theoretical - As you said yourself, everything we know about water would have to be questioned in order for homeopathy to work. But water is far too ubiquitous. It is used in medicine, physics, chemistry... and no one has ever run into anything that would contradict what we know about water. It always does exactly what scientists expect it to do.
I will definitely challenge that water does exactly what scientists expect it to do. Current science has some shaky explanations for some of the weird aspects of water and some they will even openly admit they don't know how it works. I remember reading recently about current theory how water is pulled up xylem/phloem in plants and how they admitted that there are big holes in these theories. They don't seem to satisfactory explanations for the size of exclusion zones water has been shown to produce, nor things like why water climbs up tissue paper/etc, how much energy the sodium ion pumps/etc would need to operate, surface tension of water seems to be a lot stronger than current theory can account. All these things are better accounted for, in my amateur opinion, by structured water theories.

2. Practical - Despite contradicting laws of physics, scientists really gave homeopathy a fair shot, despite what you say. A total of 57 systematic reviews, containing the 176 individual studies, focused on 68 different health conditions - and found there to be no evidence homeopathy was more effective than placebo on any.
I have heard of this before not read the review although it seems to be a decent counterpoint however this is the problem with studies. How do we know the scientist where going in with minimal biases, did they account for this somehow? How much pressure would they be under to produce a result inline with current theory? Challenging the dogma of water theory appears to be career ending according to scientists in this field. You might be tempted to confirm your original baises and mess with p-values / whatever so you can actually have a career in research.
Studies are a good tool, but they are not the be all end all.
 

raghav

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25 year ago my aunt (my mother's elder sister) was diagnosed with gangrene in her right leg and the specialist allopathy doctors (all 3 of them) said it has got to be amputated. She had a case of uncontrolled diabetes. She was scared of swallowing tablets. (A bizarre phobia). So it came to that stage. She consulted a homeopathic doctor nearby in my city itself and the lady doctor cured her gangrene in around 3 years. That was amazing !

My sister has asthma and the same lady doctor said she will cure it. But her asthma became so severe, she asked us to rush my sister to the nearby allopathic hospital. They gave her steroids and it subdued immediately. After that we never went back to the homeopath. Now my sister uses the inhaler which is standard for this problem.

So it is just not right to sweep aside homeopathy as a placebo effect or quack. It works in some diseases and disorders. So dont close the door on it. By the way India has the second largest no. of homeopathy doctors after Germany.
 

debored13

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@Tally I understand your position but I don't put so much faith in mainstream scientific opinion being correct. I think there is too much bad science, ego, bias, financial incentive, etc in our current scientific method and this has lead to, in my opinion (based on my experiences and limited knowledge accumulated), many false conclusions.

I think Gerald Pollack, Gilbert Ling, and Albert Szent-Gyorgyi are more right about water than current mainstream theory. And if they are right, everything we "know" about water will come into question.

Of course this doesn't mean homeopathy works, or that everyone selling homeopathy is honest, but if I had to guess I would err on the side of it working under specific circumstances.
I am learning more about ling's work and szent-gyorgyi's work, but I reject the logic here. while these scientists having alternate views of--say--water, cell biology, etc.. than the mainstream and being correct, may lead one to think the opposite is always true... I don't think that that is the right way to look at it. they are still scientists, still interested in the empirical and sound theory... ray is too, he wouldn't cite so much research in his work if he was totally uninterested in the empirical. we still must retain the ability to discriminate between what's right and bullshit... for the good of our health, etc. This doesn't mean that the dominant scientific theory, or consensus, is always right, at all! Knowing that science and scientists and consensus is fallible doesn't mean that we should throw out the concept of empirical evidence totally.

I mean homeopathy is unlikely to harm anyone so let people do it , but i have seen very little compelling evidence in favor of it. Still working thru pollack's book, but in my opinion, the interesting and somewhat speculative stuff about the cell membrane theory, and water structuring has also been pounced on to sell lots of stuff that might be bullshit, structured water and more... the theory I think is good, the fact that it's being used to promote what seem like new age lifestyle products... I like that Ray has never really attached himself to any brand, or sold anything besides progestE which is a really straightforward and reasonable product idk
 

JES

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25 year ago my aunt (my mother's elder sister) was diagnosed with gangrene in her right leg and the specialist allopathy doctors (all 3 of them) said it has got to be amputated. She had a case of uncontrolled diabetes. She was scared of swallowing tablets. (A bizarre phobia). So it came to that stage. She consulted a homeopathic doctor nearby in my city itself and the lady doctor cured her gangrene in around 3 years. That was amazing !

My sister has asthma and the same lady doctor said she will cure it. But her asthma became so severe, she asked us to rush my sister to the nearby allopathic hospital. They gave her steroids and it subdued immediately. After that we never went back to the homeopath. Now my sister uses the inhaler which is standard for this problem.

So it is just not right to sweep aside homeopathy as a placebo effect or quack. It works in some diseases and disorders. So dont close the door on it. By the way India has the second largest no. of homeopathy doctors after Germany.
Just because a vague psychosomatic condition like fear of swallowing tablets got better, we cannot conclude that homeopathy works. Same with the asthma flare getting better. There is a reason that mainstream medicine does placebo-controlled trials to see if something works. Even if it was not placebo, how can we rule out all other potential reasons? I had bad asthma when I was younger, which now got better, with no treatment. But let's assume I did seek homeopathic treatment for my asthma, would you then claim my asthma got better because of the homeopathy?

First it needs to be demonstrated that homeopathy is better than no treatment (null hypothesis). These anecdotal reports are available for every faith healing method as well, so they prove nothing.
 

sb4

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@debored13 I agree with most of what you say, perhaps I wasn't clear in my position. Good scientific research is essential. The scientific method is the best tool we have to figure this stuff out. Studies are very useful in context and with caveats. I just think there are a whole lot of studies out there that are BS for one reason or another (bias, financial incentive, ego, ulterior motives, bad science, etc).

This means we have to take studies with a grain of salt. Now in an ideal world, I would thoroughly read through that big study looking at various homeopathic treatments and finding them ineffective, and I would try to see if it holds up. I would also need to educate myself in the scientific background required to fully digest it, and I would need to hope the scientist conducting it didn't fudge any data, etc. This would take many many hours, and effort which I'm not prepared to invest.

So I look at it and think, hhm, that adds more weight to the homeopathy is BS stuff, but I cannot know how legit it is.

I'm also not saying that Szyent Giorgi or Ray Peat believe in homeopathy. I don't know what there positions are on it. I'm saying they and others who seem to be legit are saying the current model for water is significantly lacking and they will still be called quacks for this by the people in charge until it is proven correct, if it is indeed correct.
 

Tally

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I just think there are a whole lot of studies out there that are BS for one reason or another
ME/CFS is one of the most contentious diseases in the history of human kind, with many scientists having bias and conflict od interest to prove we're crazy, but still majority of researchers found objective evidence of physical illness and when IOM looked at the large enough number of trials (9,000+) they concluded without a doubt that ME/CFS is a physical illness.

It's one thing to claim some groups of researchers in some countries are corrupt, biased or incompetent. It's a whole other thing to claim that about all the researchers, in every country in the world, all the time.

Homeopathy: 57 systematic reviews, 176 individual studies, 68 different health conditions and it wasn't more effective than placebo in any.

And besides, it's water.

Now, can we please stop discussing homeopathy in this thread? I am following this because I am interested in developments about Suramin and Dr. Naviaux but every time I get alert, it's about homeopathy. And not even about homeopathic suramin (which still doesn't exist and is just water without memory ), but just general fights about homeopathy. It doesn't belong here @Sushi
 

debored13

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@debored13 I agree with most of what you say, perhaps I wasn't clear in my position. Good scientific research is essential. The scientific method is the best tool we have to figure this stuff out. Studies are very useful in context and with caveats. I just think there are a whole lot of studies out there that are BS for one reason or another (bias, financial incentive, ego, ulterior motives, bad science, etc).

This means we have to take studies with a grain of salt. Now in an ideal world, I would thoroughly read through that big study looking at various homeopathic treatments and finding them ineffective, and I would try to see if it holds up. I would also need to educate myself in the scientific background required to fully digest it, and I would need to hope the scientist conducting it didn't fudge any data, etc. This would take many many hours, and effort which I'm not prepared to invest.

So I look at it and think, hhm, that adds more weight to the homeopathy is BS stuff, but I cannot know how legit it is.

I'm also not saying that Szyent Giorgi or Ray Peat believe in homeopathy. I don't know what there positions are on it. I'm saying they and others who seem to be legit are saying the current model for water is significantly lacking and they will still be called quacks for this by the people in charge until it is proven correct, if it is indeed correct.
I have similar conundrum, although I don't really apply it to homeopathy as homeopathy is a little out of my frame of reference of even considering the possibility of it's validity possibly? lol. but I have the same conundrum when applied even to peat et. al's ideas. Peat cites lots of studies in his work and i think i have a decent amount of understanding of some of his theory--the alternate ideas about aerobic glycolysis, reductive stress. But I couldn't--say--argue with someone and convince them why peat is right--my understanding is not on that level, b/c i'm too sick to really take in detailed info. If a science-literate person or doctor were to tell me that peat was wrong tho I would just sorta nod and totally throw out that conversation in my head, though. Not because I can't take into account criticism, but because i'm not cognitively able to deal with vetting secondary sources for accuracy, and because I don't fully understand the primary source... I'm tired enough that i can't do this, so all this would do to take the doctor or scientist seriously is demoralize me, without getting any closer to understanding peat's work. I have also known science literate people on both sides of these opinions re: peat, whcih is comforting, but what I'm saying is that I understand the need to maintain openness to something, sheerly because u can't cognitively do the work necessarily to engage with it. i'm surprised i even wrote this paragraph lol--maybe the progestE peat suggested helped a tiny bit. have been too tired to think for the most part

that said, my intuition is that most of homeopathy will not be vindicated. Feel differently about other "alternative" stuff tho, like yogic physiology. the pranarupa blog on the yogic breathing, headstands and naturietic peptides, C02--all that stuff is interesting.
 

sb4

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It's one thing to claim some groups of researchers in some countries are corrupt, biased or incompetent. It's a whole other thing to claim that about all the researchers, in every country in the world, all the time.
I'm not claiming that. Also you don't have to be corrupt to do bad science, or have biases/ego.

Homeopathy: 57 systematic reviews, 176 individual studies, 68 different health conditions and it wasn't more effective than placebo in any.
The looked at 1800 studies and decided that only 225 where good enough quality to accept. How did they come to this conclusion, where there own biases at play? Did they scrutinize extra hard the ones with positive results and determine that something must be wrong? Or where the studies generally low quality and they were right to dismiss them? IDK, which is my point. I don't have time to work it out, so I'm going to file the study away as a maybe.

Equally, some homeopathic shool found "Of the 104 papers in total, 43 (41%) reported positive findings; 5 (5%) were negative; 56 (54%) were non-conclusive." So the exact opposite. Do they have a bias? Of course! But do the other researches have a bias? Maybe... it would probably be career suicide for them to say maybe homeopathy is legit.

general fights about homeopathy. It doesn't belong here
I'm happy to continue this in another thread or over PM.

@debored13 yeah this resonates a lot with me. It's very hard to tell who's right and wrong. Even the most reasonable people have biases, etc. I have come across many things that contradict peats ideas that I think have validty. I have also experienced negative effects from things he said should have no problem, as have many others. I think he will be right about some things in certain contexts but yeah it's hard man.
 

Sushi

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This thread has gone off topic. If you want to discuss homeopathy (other than the possibility of homeopathic suramin), please continue the discussion in an existing thread about homeopathy or start a new thread. In this thread, we need to stick to the topic: "How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?" Any further off-topic posts will be removed. Thanks.
 

roller

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Holy shit, thats a lot of regulation for a drug with absolutely no black market use. I wonder why its so strict.
Also, mad props to going to such lengths. You did a great job to explore all those options.
i find this also very strange.
opioids, black boxed antidepressants and what not are available, painkillers and sleeping pills are otc.
cannabis made legal.

but suramin is so restricted.

and there has never been a substitute for it.
 

suevu

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Why would you want to get another drug when most of us have fallen into this disease with drugs?
 

suevu

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most of us have fallen into this disease with drugs? Where do you get that idea
Haven't you taken many drugs before falling sick?

I dont know any patient yet who has never taken many drugs (I mean legal drugs, of course), specially antibiotics prior to get CFS. And i have several hundreds of references.
 

debored13

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Haven't you taken many drugs before falling sick?

I dont know any patient yet who has never taken many drugs (I mean legal drugs, of course), specially antibiotics prior to get CFS. And i have several hundreds of references.
and many many more healthy people who have taken lots of drugs and don’t have cfs. I don’t think you have a very statistically strong argument here. I’m not a huge fan of suramin but what do you propose people do besides trial drugs, to find a cure for this disease ? Drugs cured aids. Drugs treat cancer, drugs cured TB
 

Rachel Riggs

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i find this also very strange.
opioids, black boxed antidepressants and what not are available, painkillers and sleeping pills are otc.
cannabis made legal.

but suramin is so restricted.

and there has never been a substitute for it.
Ultimately it was not the FDA or the CDC that prevented Naviaux from getting the drug, it was Bayer. They said no after a year of stringing him along. It's a good thing that he is no longer beholden to them. He's awaiting drug form a new manufacturer and it will never be a problem in the future.
 

suevu

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and many many more healthy people who have taken lots of drugs and don’t have cfs. I don’t think you have a very statistically strong argument here. I’m not a huge fan of suramin but what do you propose people do besides trial drugs, to find a cure for this disease ? Drugs cured aids. Drugs treat cancer, drugs cured TB
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). They treat cancer, sometimes they cure it many others don't and in all cases they reduce life expentancy between 10-15 years if no relapse.

I propose finding the best microbiome donors in the world to focus on us.

I agree that many healthy people have taken antibiotics and drugs and not fallen into CFS, because we all are different they probably get other diseases we don't (and they actually do), probably some DNA issues are related to CFS too, but DNA that many other people without CFS share with us (we don't even know), because they haven't taken enough drugs or bad diet / habits.

Native people don't have CFS or FM and before the antibiotic-drug era these were very strange diseases not afeccting millions like now and growing every year.

Is there any patient with CFS that has never taken drugs or antibiotics, born by natural birth (no c-section) and being breastfed and followed a healthy diet?

I highly doubt it.

Ron Davis has found already in the video that we lack many non human metabolites we need to be healthy, many patients recover at Taymout, its pretty clear the issue is microbe related but these are very hard to modulate for every person, we should simply start to take action. Drugs if ever any is developed for us, will take at least 10-20 years to be on the market... Do you wan't to wait that long and even with not guarantee of having one?

I don't.
 

debored13

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Can AIDS be cured and I haven't heard about? :D
AIDS used to be a death sentence and now it’s basically an annoyance. There are members on the forum that have spoken to how treatable aids is vs cfs and that is due to massive investment in research and yes, DRUGS. Cured—not yet. All but cured? Yes. Although there have been two bone marrow transplants or some recent experimental treatment that did cure it in a patient without any drugs so I think we’re close.