Lorenzo's Oil for Autism

Post Reply New Topic

please point out where I mocked. I would like to apologize for mocking. I do not mock intentionally.

thank you

Merle

You disarded his views as being without substance, like static on a television. It was the way you wrote your response. You spoke down, as though his opinion was just a minor thing. You included a bunch of negative concepts when stating things, like conspiracy theory, misinformation, bogeyman... and discarded the evidence he's provided in other threads as being without merit.

I'm sure you didn't want to mock him intentionally, and I can understand why you said what you did. But his opinons deserve the same consideration as anyone else.

AspieDave, I'd rather try to cross the Bridge of Death, or defend myself against a horde of fruit-wielding maniacs than deny the comedic genius of Monty Python.

Why is it that whenever someone doesn't think Autism is 100%, absolutely, fully and completely caused by genetics, that they must be of one point of view, and that's that they believe that Mercury did it? There's more than Genetics and Mercury, you know, and who says that the symptomology of each disorder on the spectrum is all stemming from one cause? They've got hundreds of causes for cancer, and all the different types of cancer; Though I'm not saying that Autism is a disease, but making a comparison of how there can be more than one cause for anything.

I don't know what causes Autism, and I think people should stop trying to put a hexagonal block into a triangular hole. The ony proven case where it was proven that Autism was genetic occurs in less than one percent of autistics. When the numbers are higher, I'll put more faith into it; But at this point in time, we're taking a speculation as fact, which is pretty short-sighted.
Look how the church did with a flat earth. Many a ship lost at sea was said to have sailed off the edge of the world, or was claimed by a Kraken or other monster from the deeps. It's similar effects, being attributed to something else entirely. Like cats, rats, and the plague. Rats carried the plague, and the cats would catch the rats. They saw so many cats, and thought that the cats were causing it, and so they killed the cats.

I for one am welcome to all discussion, all opinions of the causes of Autism. But I generally dislike it when people decide that they don't like certain beliefs, and try to stifle their opinions, mock them, discard their opinions, or make them out to be crazy. If you want to present that Autism is genetic, and give reasons, and make points, you've got the right to do so, and you're more than welcome to present your views. But to mock, taunt, and belittle someone because you think their views aren't as good as your own, that is unacceptable.

They have as much right as you do to say what you think about Autism. They deserve the same freedom to express their opinions without the mockery and jeers that people have been directing at them. Do others jeer and mock your beliefs that Autism is genetic, and make snide remarks?

I respect your opinion. I only wish you could return the gesture.

Because it is about people and their lives. Using therapies that are unproven, or which have not been proven just well enough, can put children's health at serious risk. It can also give leeway for charlatans to make money off a "therapy" which they may know in advance not to work (or to be overly dangerous), and for parents who are either too desperate and/or too selfish to go ahead and use these "therapies" on their children regardless of the consequences. For one, I am afraid that this is already taking place.

It is not about something so vague and abstract as beliefs - it is about people, LIVING PEOPLE, and one's attitude towards them.

At least, it is so for me, I don't know about what anyone else thinks about this.

However, I agree that nobody should be put down or ridiculed because of their opinions.

I'll keep this post short and sweet. Speaking for myself - I regard anyone who denies the long established fact that Autism is genetic in origin, and further relies on junk science to contradict it is worthy of ridicule. And in the case of Zendell there are other factors attached (such as the claim that cancer didn't exist 100 years ago - which is in the same vein as claiming Autism didn't exist before 1931).

Now if the mods disagree with this, please let us all know.

No doubt cancer has existed since the beginning of time, and no doubt it has increased exponentially in the modern era. That's hardly controversial.

In an ideal world, noone would ever express a thought or opinion without knowing their stuff inside out, and noone would ever dismiss another person's thoughts and opinions without interest and respect.

Oh ideal world, where art thou? *stands on tall mountain, shading eyes, vainly searching horizon*

I don't think people who have no experience, knowledge or interest of/in alternative medicine and treatments realize how frustrating it is to have everything across the board dismissed as quackery. I have ten years experince of it (not professional) and I credit it with my survival. I don't listen to quacks, I KNOW ENOUGH TO AVOID THEM. The responsibility is on patients/parents to educate themselves and check their doctors' credentials whether they are dealing with alternative or allopathic medicine.

I'd need to see proof that Cancer has increased at all, let alone exponentially. The only way that seems possible is if you're counting that people live longer.

And there is SO MUCH dangerous psudeoscience out there, and IMO it shouldn't be tolerated. It isn't safe, and it detracts from people getting real help. (Not to mention how infuriating it is to see people believing in magic...)

You make Big Pharma proud. The problem with your opinion is that it costs millions of dollars to prove treatments effective. The only treatments that will ever be studied enough to prove them effective are pharmaceutical drugs and other patentable treatments that can make the owner millions. Alternative treatments are natural, safer, cheaper, and often more effective than artificial drugs but they will never be studied enough for them to be considered proven because no one can make any money off of them. You simply can't sell vitamin C for $10 a pill.

The problem is that your opinion has already been disproven. You are ridiculing people for relying on science instead of personal beliefs. I regard anyone who denies the fact that Autism is not genetic in origin (in at least some cases), and further relies on junk science to contradict it is either dishonest or uninformed.

The fact is that the cause of autism in the majority of cases is unknown. Everyone knows that genetics play a role, as they do in many other environmentally caused conditions. However, that does NOT mean that genetics cause autism. Genetics play a role in heart disease and cancer and they tend to occur more often in the same families although everyone agrees that they can be prevented in most cases by lifestyle changes. Both genetics and tobacco use contribute to lung cancer but I think any rational person would focus on the factor that can be changed. You have to label the majority of autism research as junk science to continue believing that autism is 100% caused by genetics in 100% of the people diagnosed with it. The CDC website states that a virus is a known cause of autism. Do you believe there is a government conspiracy against the autistics on this site? What evidence do you have to support this conspiracy theory?



I really don't want to debate cancer. I should have wrote it may have increased after vaccinations instead of stating it didn't exist before them. I haven't studied it. I'm just skeptical based on what I've read and I avoid vaccines for many other reasons.

Are these people, and their lives, less important than others?

Using medications with a whole host of negative side effects is the same. Alternative treatments, if they're safe, like the treatment that started this thread, are not bad. There always has, and may always be those who prey upon people with fake treatments. Show me a child who's died through an alternative; And not one killed by the doctor screwing up, or an attempted exorcism.

Why not give them the benefit of the doubt? Ask them the questions that people ask about other treatments. Listen to their opinions, and try to concile them with your own beliefs. It's the clash of the beliefs over what causes Autism, and the idea that there can only be one, that truly drives conflict between each other. I'm amazed that no one before now has ever suggested that there may be more than just one, and only one cause.

I'm glad that you feel that way.

Open comment: People who don't think the same way as you, aren't all the same, and it's a sadly prevalent assumption and stereotye that if Person A does not believe belief B, they must be of belief C by default. Not everyone is cut into such black and white reliefs, and to treat the issue of treatments and cures as black and white, for us or against us, is madness. I'm amazed that such smart people are willing to not just abide, but promote such a stupid concept. If you recognize it, you should know that it's a bad belief to either be friends or enemies, and those alone. If that was the case, the Cuban Missile Crisis would have left the world a smoking crater, and we wouldn't be alive to have come up with such a useless and negative concept.

Irisrises, excellent post.

Wolfpup, I think smoking has been the leading increase. And just look at that industry! Billions of dollars, and it's proven to be bad for your health.

Not all other treatments than drugs are garbage. Those that actually work aren't so bad, but if we can live healthier without having to take drug cocktails, then it's hardly any worse than the myriad of side effects that can occur. Until it's proven harmful or safe, I don't really think we should be prejudging every other alternative by other alternatives. It's judging all by one, and in people, that's stereotyping. Each shoud prove their merits, and those that can prove beneficial will win out, and those that aren't, won't.

And magic hardly has anything to do with it. Alternatives have included exorcisms, but they aren't all like that any more than Ritalin to a fancy placebo.

My complete responses to this thread are as follows:

OP quoted:
Five years ago his son, Frederick, was diagnosed with autism. The doctors told him there was no cure and warned him to prepare for a lifetime of struggle. But he refused to give up. As a fervent believer in the power of natural remedies, he decided to develop his own autism treatment.

To which I replied:

I hope he finds it.

Bless him and his efforts, no one likes to feel they have no remedy, or can't 'fix' it. Even if he does not find the 'cure' he feels he is doing something and hey, he might be onto something!


My next post in this thread:
don't mean to offend anyone, but what gets hurt is the patent's pocketbook.
I work with older folks and their Medicare the old age medical insurance in The States. I hear from their own lips how the chelation therapy is necessary for their health, how it is going to help this ailment or that disease.
They call me because the durable medical equipment for the therapy is paid for by medicare, but the chelation serum is not, and that comes directly from the patient having the therapy.

the singular common thread in all those chelation patients is their nearly rabid desperation because they have been convinced they need the treatment, and secondly, how narrow minded it is that Medicare did not spring for the rather expensive chelation catalyst.

anecdotal, but perhaps 30 calls in the last year, that I remember working with their claims

and then:
Some people are narrow in their focus, that is true. In 1908 my grandfather was alive, my father was born in 1912, so it really wasn't back in the dark ages ( I promise!) The idea that cancer is some new disease is just one of those things you shake your head at while trying not to chuckle - not at someone's ignorance, but at the idea someone would not just do one little Google search to keep from being chuckled at.

one pass of Google gave me 10,600,000 hits just for history of cancer, alone.

And then:

yet, you (zendell) could not resist responding. Look, I know you have put in a lot of effort and energy to form your views. I know you have invested time and learned about your subject. Dave and TLPG forget you can catch more flies with honey than with vinegar ( and watch, they well ask me why I would want to catch flies, anyway! right guys. .you thought about it, didn't you but I beat you to it!)

but my point is, not everything has a bogeyman in the bushes, not everything is a conspiracy theory. You certainly have the right to your opinion, but when it misinforms people looking for hard scientific evidence, it becomes a community problem.

I am sure someone has pointed that out to you before, too. Hence the 'controversy' continues.

all the best,

Merle

Joeker,
My words are just that, flat words on a page, I am not responsible for what is read into my comments, that someone take my respectful and mild critisism as scathing distain.
I am not so naive to not know that others use gentle critisism and respectful words mocking and distainfully. However I would like to assure you that I do not.

and as for the topic. I have no experience with Autism or Asperger's Syndrome other than just having the condition. I do not follow zendell's comments in other threads, I am not involved in cure vs no cure nor would avail myself of it if there were, but I wish everyone well in their quest . . .in short. . .I have no dog in this fight.

I am certain you were not trying to impune my reputation, Joeker, perhaps in the give and take of the conversation you might have been less than discerning at my own contributions and lumped me into the general tone of other responses. Thank you for remembering we are not an united front against or for, but individuals that deserve to be considered as such, and all our individual opinions deserving of as much respect as zendell's.

all the best,

Merle

Last edited by sinsboldly on 28 Feb 2008, 12:32 pm, edited 2 times in total.

Sure, but THEY have a whole host of side effects too, only they aren't tested. Not for side effects, and not for whether they actually do anything.



Exorcism is EXACTLY the type of thing we're trying to protect people against. People who weren't properly educated and don't understand the scientific method are prone to falling for these scams.



Because they don't want their treatments subjected to science. They're perfectly willing to rake in the billions they their industry makes every year, and don't want reality interfering with it.

True.



False. Comparisons of incidence among identical and non-identical twins show that ASD are about 80% genetic in origin, though in most cases it is not known what specific combination of genes caused the condition (autism is far from the only condition known to be at least partly genetic but for which the specific genes involved are not known, or only some are known). In something like 10% of ASD cases at least one related gene is known.




Nobody is saying that it is 100% genetic in 100% of cases - that's just a straw man argument. What has been said is that it's mainly genetic, and that vaccines have nothing to do with it - statments supported by the bulk of peer-reviewed science.
As has been said, there's big money in the alternative-medicine industry, but they're a) not forced by regulation to actually test their products and b) not interested in verifying that they actually work (it would hurt sales of those that were shown not to work). Since they rake in lots of money, if they believed their products work then scientifically proving it would surely be good for marketing them and a good investment.
According to you, is there anything wrong with the world that is not caused by vaccines? Out of the blue and with zero evidence you're claiming they cause cancer, what's next? Did they cause the sinking of the Titanic?

Alternative treatments are tested for safety and effectiveness. For example, a recent study found chelation safe and effective in treating autism. http://www.autism.com/danwebcast/presen ... /adams.pdf

Alternative doctors want these treatments studied and subject to science. The problem is that no one really makes any money off of these treatments because they are sold by several companies at a very low price. The only reason Big Pharma can afford expensive studies is because they can patent their drugs which prevents anyone else from selling them and allows them to charge more for them. Most of the alternative autism treatments only cost a few dollars and are sold by hundreds of companies. The only way to get them fully studied like drugs would be to allow a drug company to patent the treatment, bar everyone else from selling it, allow them to charge $100/month for it, and force insurance to pay for it.

Condemning Big Pharma and praising chelation is like condemning the oil industry and then going out to fill your tank.

The comparison isn't valid. ASD is actually five conditions grouped together. That 80% concordance rate among identical twins includes cases where one person is LFA and the other identical twin has a mild case of AS. Exact same genes - very different outcome. There has to be a non-genetic reason for that. Some people claim biomedical treatments turn their LFA kids into HFA kids, more evidence for non-genetic factors that shows the importance of looking at something other than genetics. Studies that look at classic autism in identical twins, find that when one twin has autistic disorder there is only a 36-50% chance that the other twin has autistic disorder. That would mean that non-genetic factors are involved the majority of the time.



From the responses I got, it seems like many people here think it's 100% genetic. I was told that non-genetic factors can't cause autism but can only cause autism-like symptoms.

I'm not sure whether vaccines are involved because they have never been adequately studied to rule out their involvement. All the autism-vaccine studies I've read except one lacked a control group. Many people here described similar quality studies as junk science. The one I read that had a control group found that the autism rate was higher in the group receiving thimerosal-containing vaccines compared to the group receiving thimerosal-free vaccines. There is good evidence that thimerosal doesn't significantly contribute to autism (despite a lack of high quality studies) but I think other problems in vaccines are more likely to cause autism.



I think most people practicing alternative medicine want the products tested. Most of the main alternative treatements have already been tested, just not as thorougly as prescription drugs. Expensive testing would be a terrible investment because hundreds of companies sell these products. The one company paying for the test would receive very little benefit due to the increased sales being spread out over 100 companies that all have very low profit margins.

Merle, I'm assured.
My apologies for any rudeness towads you(unintentional, though it's still rude) on my part, and I look forward to future discussions with you.

Wolfpup: That's why we need more research into it. However, when you can make much more from compounds that only you can make, it's much more lucrative. I'd like to see a little more emphasis on whether or not they actually work, and not on a 50-200 dollar perscription.

Exorcism is not the same as an alternative treatment, any more than corporal punishment is to parenting. Alternative treatments aren't all the same anymore than all pills are the same. If someone tried to replace Ritalin with Aspirin, it'd be just as silly.

You'd find that not every alternative is a science-fearing con. Several alternative treatments have undergone scientific study, and found to be effective. Most notably, vaccination. It was THE alternative treatment, the unknown. People scoffed, and laughed, and jeered, it was considered quackery, and until he proved that it prevented what they were vaccinated for, he was a laughingstock and had no credibility in any scientific circles. Afterwards, i was touted as one of the mst important discoveries of that century.

Billions? You must be mistaking industries. The Health industry(that which runs hospitals), and the Pharmaceutical companies(that make drugs), are the ones who rake in the billions.

pbcoll: I admit, I omitted that evidence by accident. My apologies. However, my point remains, in that it's about 80%, then what's the other 20%?

I could quote the person who said it, but I won't bother. Suffice to say, they dismissed Zendell on the grounds that Autism is genetic, and therefore cannot be anything else. I am certain you don't mean to support that kind of statement, and I am dropping it. *I thusly, with much ado, drop it.*

But Science is supposed to be flexible. It's not reliant on something like the Vaccine Trials to determine the possibilities of the causes for Autism. There's no real problem with the fact that there is a belief that Vaccines caused Autism, as they are peer-reviewed, and if they are not adequate, they are not valid. Hypothetically; If in the future, vaccines are found to have any effect in causing Autism, if even but less than in one percent of all cases, then the legal ruling would likely cause problems. Peer-reviewed science is the Court of science. What was so wrong with that, when the majority of peer-reviewed science states that Autism is mainly genetic, and that there's little to no evidence that Vaccines cause Autism.

Sarcasm is unbecoming of you.

srivv345: Alternative does not simply equal Chelation. Not all therapies are Chelation, like not all pills are Aspirin.

Open: Perhaps it could be done free of charge, in the interest of public health? Maybe those hundred of companies could chip in money for those extensive tests, and then agree to use a label to show that their products are compliant with regulations for testing, are approved by the organization who performed the tests, and are certified by whichever organization is in charge. Were I to be acting in the interest of health, I'd exhaust every possible option. Test every possible thing to determine if it's of use. Just my opinion.