Autism-Mitochondrial Dysfunction Link: 1 in 200 At Risk

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I decided not to respond to most of the ridiculousness posted on this thread over the weekend, but I'm in a cheery mood this morning. So I'll note two things:

(1) I do know people how have survived for "very long" after chemo.

(2) Studies of intravenous vitamin C have shown some promise (as far as whether it's "better" than chemo, I can't say), as the blood levels of the vitamin are quite high. Oral vitamin C has been well studied and has shown no benefit whatsoever. I agree that further studies are needed, especially since there's likely to be a large population of patients with relapsed cancer who might not want to undergo another round of chemo.

(3) I agree that direct advertisement of prescription drugs ought to be banned again. It's proven to be a gigantic disaster.

(4) Re: DCA: Evangelos Michelakis recently published a study in a peer-reviewed journal noting the apparent promise of DCA. You're right that Big Pharma has no interest in funding his planned bigger studies, so he's raising the funds himself. However, he's also deeply concerned about the spread of news/hysteria re: DCA on the internet, because it's apparently leading people to formulate and use the compound outside of the context of a controlled trial. Here's what he said of it in Science:

Michelakis and other researchers are worried by the development. Although DCA seems safe overall, they point to a clinical trial that was stopped early because those taking the drug developed damage to their peripheral nerves (P. Kaufmann et al. Neurology 66, 324–330; 2006). Without a control group, they point out, it will be impossible to tell whether any improvement in the patients' condition is caused by the drug. Patients could also be taking DCA that is not of pharmaceutical grade and might contain harmful impurities.

Michelakis says the patients could end up undermining efforts to do a controlled clinical trial if, for example, some develop harmful side effects and the drug earns a bad reputation. "It's destroying efforts to do this right," he says. "Any way you look at this, it's a negative development." An FDA spokesperson told Nature that the agency is looking into the matter.
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Autism-Mitochondrial Dysfunction Link: 1 in 200 At Risk

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burun wrote:
scarlettrose wrote:Well, I don't know one person who has had chemo and survived for very long.

I know about three dozen.


I can list a few myself, relatives included.
They were treated with care and dignity and are alive today.
My guess is that my father in law would have died from his lymphoma had he not gone through the treatments. This stuff is like rust - you have got to kill it or it will take over. I just don't see how anything but drastic measures can work.

Prevention and avoidance, eating and living healthy are naurally the best philosophies, but if the cancer comes, time for the heavy artillery.

Put another way, I'm sure more people have survived cancer by taking chemo than those who did not. People are free to choose not to take it, because it's a shitty way to live, but my guess is that they don't make it, because cancer rarely just "goes away."

-A
Itchy McGoo wrote:I would like to be a "shoop-shoop" girl in whatever band Alex Maiolo is in.

Autism-Mitochondrial Dysfunction Link: 1 in 200 At Risk

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Mark Hansen wrote:
burun wrote:
scarlettrose wrote:Well, I don't know one person who has had chemo and survived for very long.

I know about three dozen.


I know quite a few also.


Did somebody miss the part where neither one of us said "Don't try chemo"?

Most people with cancer don't survive very long with or without chemo. I guess 'very long' should be defined for the sake of this conversation. Everyone is free to post their own empirical evidence related to chemo success. It's not going to match. Some will know people who lived longer using chemo, others won't. I personally know examples of both.

Here's what I said:
clocker bob wrote:People should, using their smart adult minds, explore alternative medicine regarding cancer. There's definitely a problem with too much false hope invested in chemo and radiation also.


I said broaden your horizons. Don't let your doctor convince you that chemo and radiation are your only options.

Autism-Mitochondrial Dysfunction Link: 1 in 200 At Risk

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Wood Goblin wrote:
Michelakis says the patients could end up undermining efforts to do a controlled clinical trial if, for example, some develop harmful side effects and the drug earns a bad reputation. "It's destroying efforts to do this right," he says. "Any way you look at this, it's a negative development." An FDA spokesperson told Nature that the agency is looking into the matter.


Patients are 'undermining' efforts to do controlled clinical trials because Big Pharm is dragging their feet on supporting these trials, so people are volunteering themselves to themselves as guinea pigs out of impatience. What is destroying efforts to 'do this right' is the lack of funding more than it is the eager patients. I'm more inclined to bash big pharm for withholding money than I am inclined to bash desperate people who may only have years to live.

Autism-Mitochondrial Dysfunction Link: 1 in 200 At Risk

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clocker bob wrote:
Wood Goblin wrote:
Michelakis says the patients could end up undermining efforts to do a controlled clinical trial if, for example, some develop harmful side effects and the drug earns a bad reputation. "It's destroying efforts to do this right," he says. "Any way you look at this, it's a negative development." An FDA spokesperson told Nature that the agency is looking into the matter.


Patients are 'undermining' efforts to do controlled clinical trials because Big Pharm is dragging their feet on supporting these trials, so people are volunteering themselves to themselves as guinea pigs out of impatience. What is destroying efforts to 'do this right' is the lack of funding more than it is the eager patients. I'm more inclined to bash big pharm for withholding money than I am inclined to bash desperate people who may only have years to live.


I'm not bashing people who are willing to participate; I think it's great that they are. However, these so-called "trials" will lack clinical utility, because they lack a control group and insurance that a high-quality, standardized agent will be used, which is why Michelakis doesn't like them.
My grunge/northwest rock blog

Autism-Mitochondrial Dysfunction Link: 1 in 200 At Risk

357
Anyone heard of the book, "Sharks don't get cancer: how shark cartilage could change your life"? The nutty thing is, sharks do get cancer.

I'm all for any safe and effective treatment for cancer, "alternative" or otherwise. But I find the above example all too common in the "alternative" health field--too much stuff that's simply made up, or based only on anecdotal evidence, etc. Sure there's a ton of money to be made in the pharmaceutical industry, but there's also quite a bit being made on books like the above, and supplements like shark cartilage.

There are companies that make a lot of money selling vitamin C; I'm sure they'd be happy to help prove that C can cure cancer. As well as many researchers who are honestly interested in helping people and curing diseases, and not in enriching drug or supplement companies.

Autism-Mitochondrial Dysfunction Link: 1 in 200 At Risk

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alex maiolo wrote:
burun wrote:
scarlettrose wrote:Well, I don't know one person who has had chemo and survived for very long.

I know about three dozen.


I can list a few myself, relatives included.
They were treated with care and dignity and are alive today.
My guess is that my father in law would have died from his lymphoma had he not gone through the treatments. This stuff is like rust - you have got to kill it or it will take over. I just don't see how anything but drastic measures can work.

Prevention and avoidance, eating and living healthy are naurally the best philosophies, but if the cancer comes, time for the heavy artillery.

Put another way, I'm sure more people have survived cancer by taking chemo than those who did not. People are free to choose not to take it, because it's a shitty way to live, but my guess is that they don't make it, because cancer rarely just "goes away."

-A


Oh yeah, I'm not saying chemo is ineffective. I just personally haven't known anyone to live long, and it is rather depressing/discouraging really. I am glad others know those who have had success. My 7yo daughter's friend is currently going through it and the outlook is not too hopeful, the poor little sweetie.

Autism-Mitochondrial Dysfunction Link: 1 in 200 At Risk

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clocker bob wrote:
Wood Goblin wrote: However, these so-called "trials" will lack clinical utility, because they lack a control group and insurance that a high-quality, standardized agent will be used

And who organizes proper trials? The patients? The patients are like driftwood floating in the ocean. Big Pharm makes the tides of the ocean rise and fall.


Plenty of trails happen without Big Pharma funding. The CDC, NIH, NIAID, WHO, US Army, etc. fund trials, not to mention academic societies and universities.
My grunge/northwest rock blog

Autism-Mitochondrial Dysfunction Link: 1 in 200 At Risk

360
clocker bob wrote:
Mark Hansen wrote:
burun wrote:
scarlettrose wrote:Well, I don't know one person who has had chemo and survived for very long.

I know about three dozen.


I know quite a few also.


Did somebody miss the part where neither one of us said "Don't try chemo"?

Most people with cancer don't survive very long with or without chemo. I guess 'very long' should be defined for the sake of this conversation. Everyone is free to post their own empirical evidence related to chemo success. It's not going to match. Some will know people who lived longer using chemo, others won't. I personally know examples of both.

Here's what I said:
clocker bob wrote:People should, using their smart adult minds, explore alternative medicine regarding cancer. There's definitely a problem with too much false hope invested in chemo and radiation also.


I said broaden your horizons. Don't let your doctor convince you that chemo and radiation are your only options.


I don't think anyone who responded here indicated that they interpreted yours, or Scarlettroses's, remarks as saying people shouldn't use chemo as one part of a cancer-fighting regime.
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