Ubiquinone/CoQ10

[pberggren1]

Jolanta, that sounds good in theory, but the truth is that if national mandates for research are put into place it would be the end of nutritional supplements. Who has the money for that research? Where is the source of such unification? It doesn't exist. And you can't trademark nutrients the way pharmaceutical drugs are.

I'd like to see requirements for supplements to contain what they claim to contain, but beyond that, it's not a pretty picture.

Most people don't realize there are already quite restricting controls on supplements. For example, you can't say a supplement is good for the flu (prevention or treatment), even when there is abundant research demonstrating it. Vitamin D is one example of this. Dr Andrew Weil got smacked by the FDA last year for having the audacity to say on his website that vitamin D is good for flu. You would've thought the sky fell down. There was a lot of pressure to sell flu vaccines last year and he was interfering with those sales.

Amazingly, MDs can prescribe a drug "off-label" when there is ZERO testing for that use. An example of this lunacy is cytotec-- a synthetic prostaglandin that's approved for preventing stomach ulcers. Doctors are using it to stimulate labor, even though it has a very high rate of causing uterine rupture. There's no testing required for them to try it out like this. It's literally killing women and infants, but it's legal. Many women are having to undergo hysterectomies after giving birth because their uterus was so damaged by the drug. Or they can't give birth again, etc.... There are long lists of examples like this.

I find it incredible that we're equating such risks with vitamin C and aloe vera juice. Fear is an effective way of controlling people. Follow the money, as they say.

You hit that one on the head of the nail. I have to agree with you 100%.

[Sangye]

A new drug to treat MS was just approved by the FDA today. I thought this quote says it all:

"We don't know for sure what's going to happen until the drug is on the market and it's been on the market a while and a large number of people have been treated with it." -- Dr. Nicholas LaRocca, Vice President of Health Care Delivery and Policy Research for the National Multiple Sclerosis Society.

[Jack]

There is always some degree of uncertainty when a new drug gets out into the real world, but I don't think you should read this statement as "We'll give it to people and see what happens". The industry is so highly regulated that the pre launch drug trials run for years and cost millions, but as I know well from my own experience in industry, you can't test for every eventuality.

You have to ask yourself, what is the alternative? Longer trial periods? Don't release anything new at all? Just release and let the patient take the risk? I'm sure that most of us want to see new drugs come to the market and this process is already hampered by the testing requirements. Indeed, it probably accounts for the shortage of drugs available to treat rare conditions where little profit can be made.

[elephant]

You said it right Jack!

[Sangye]

Actually, to some degree it is a case of "We'll give it to people and see what happens." The problem is that the wolves are in charge of the henhouse. The safety trials for FDA regulation are done by the manufacturer, who stands to gain millions if it goes on the market. This is why-- in recall after recall-- they learn that problems with safety were known before the drug hit the market. Where are the FDA protections at that point?

When a drug is allowed on the market despite safety problems during FDA trials, the number of people damaged or killed becomes obvious because it's magnified by the larger sample size. Look at how many drugs have been taken off the market only after they damaged or killed huge numbers of people. It's actually quite rare that unanticipated problems force a drug's removal.

One example of this was the original rotavirus vaccine that was marketed in the 1990's (I forget the year). They knew from clinical trials that it caused a high rate of intussusception in infants. This is an extremely painful acute condition where part of the intestine telescopes into the rest. It can be deadly or at a minimum cause part of the intestine to die. Not until almost 100 infants were killed by this (and hundreds damaged) was it removed from the market. Meanwhile there was money to be made.

What's the solution? In my opinion, we need to
1) Have tighter regulations and transparency on manufacturer-subsidized research
2) Fix the loophole that allows the FDA to look the other way on pre-market studies that show unacceptable risks.
3) Explicitly inform consumers of the loopholes in the FDA approval process that allow for catastrophic mistakes. People are under the impression that FDA-approval means "safe."

Something an MD once told me has haunted me for years. We were discussing newly marketed drugs, and he said, "It's common practice among MDs not to take a drug until it's been on the market at least 5 years." He said he'd never give a newly-marketed drug to a family member. Would I take rtx if it hadn't been used for so long to treat NHL? I don't know. In my case there weren't options. But it sure would have kept me up at night.

[sue7211]

Thank you for the thoughtful conversation I agree that it's difficult to find trustworthy nutritional supplements. There is an organization called the US Pharmacopia that tests herbal and nutritional supplements to see if they actually contain what they say they do. They are not just tested once but are continued to be every few months.

People who take statins are also depleted of ubiquinone. I learned that CoQ10 is converted by the body to ubiqinone but not every person converts it the same so it's probably better to take ubiquinone originally. I was looking for things to help lower blood pressure and heal kidneys since neither seem to be going really well for my son. He can't take ACE inhibitors because his creatinine and potassium are too high. It is the National Institutes of Health (US) that has information about it and it's possible benefits.

I have asked his nephrologists and they haven't gotten back to me about it yet. They have said that he can take D-Ribose which is also something that is found in the body naturally and gets depleted. It can contribute to energy levels.

[Sangye]

Great info, Sue. Most supplements that are only sold through health professionals do rigorous testing that surpasses what is required. Many of them test each batch for nutrient content. That's unheard of in OTC brands.

[Sangye]

Today the FDA announced Avandia (diabetes drug) can stay on the market but only for people whose Type 2 diabetes can't be controlled with other drugs. This, despite a 43% increase in cardiac ischemic events (including heart attacks) and other major problems.

This article from last month discusses the problems with the FDA drug approval process and shows how easy it is for the pharmaceutical companies to "game the system" and put millions at risk.
Avandia Approval: FDA's Drug-Safety Protection in Doubt - TIME

If there's a supplement on the shelves linked to a 43% increase in heart attacks, I'm all for taking it off the market, too.

[jola57]

Sangye, i agree to disagree, still think that to be taken seriously the holistic/natural medicines must have the same types of experiments to show their efficiency.

[pberggren1]

Sangye, i agree to disagree, still think that to be taken seriously the holistic/natural medicines must have the same types of experiments to show their efficiency.

Hmmmmmmm!