Trustworthy Sites

There seems to be a lot of mis-information out there. It is difficult to know what is legit and what is not. We navigate through a plethera of information (some good, some bad) in the quest for some useful knowledge.
We surf in hopes that someone or some company has discovered a cure or viable therapy.
I had contacted my neurologist by phone today to inquire about some trial that was being conducted in the US. She politely informed me to be cautious where I retrieved my information. She kindly directed me to a site used world wide to register clinical trials.
Clinical trials
All legitimate organizations are required to register trials they are conducting, about to conduct, or are recruiting for, on this site. This website also gives reliable information regarding results of therapies, and drugs.
Please be diligent in making sure the information you are viewing is correct, obtained through a reliable source, and most important of all it doesn’t lead you in the wrong direction.
Safety is very important when it comes to the internet and information we seek out.

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Good advice! Yes we need to check on sources. When we are facing a diagnosis or disorder of any type, there’s always somebody trying to make money off ‘new cures’ or just stirring up a whole lot of fear…

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Thanks Hutchy for providing this link.

Another source of unbiased information is the Cochrane Collaborative. In general it is wise to be skeptical of any study sponsored by private interests who stand to profit and this includes clinical trials which are often gamed overstating benefit and understating risks or in some cases withholding pertinent information. Any sites sponsored by those who stand to profit or who advertise product should also be viewed skeptically.

It would be highly unethical for a researcher to withhold data. In fact, if discovered, they would not be doing research usually. I am not saying that it never happens, but that would be an unwise career move for a researcher. What they do often is to define entry criteria for the study so that you have people with only the disorder being studied. There is also the big issue of the lack of diversity of study participants, Som if you are not a white male with only one disorder, drugs and devices are usually not studied on people like you.

Thanks Linda,

It is not necessarily the researchers that are withholding data but the companies that sponsor the research. I am referring primarily although not exclusively to pharmaceutical trials where companies routinely massage data and withhold unfavourable studies (they are not required to submit them for patent approval in most countries).

Many such instances about, Celebrex and Vioxx, Oxycontin, HRT therapy, statin therapy for primary protection, and certain SSRI’s are but a few instances. When companies are caught misrepresenting harms and benefits they are typically fined a small amount in relation to profit and are allowed to continue marketing these inherently flawed drugs.

Drug trials have moved from the universities and teaching hospitals to third parties who conduct them for commercial gain on behalf of companies who wish to gain patent protection. It has become big business and many prominent physicians who collaborate with drug companies are unwilling to speak out.

Even before drug companies started to outsource trials to third parties researchers and institutions who were too rigorous were punished by having their careers ruined and funding withheld.

There is no doubt that drug trials, approval, and patents are big business and we should be suspicious of the research—particularly that sponsored by by drug or device companies. After all, it costs a lot to have a trial, and the companies want them to succeed so they can make money. I guess I do not think there is as much hiding information as you do. I see the problem as more not looking for it, but there is no doubt that flawed drugs do get out.

I can’t help but think of healthcare as an industry reliant on folks being ill.
Don’t get me wrong, I am forever grateful for the caring, compassion, and professionalism displayed by nurses and drs.etc.
But imagine for a moment if you will, the magnitude of the money/jobs that would cease due to the cure of say cancer of some form or all forms. Employment would end. Funding would no longer be required. Healthcare equipment wouldn’t be needed. Drug companies would suffer because drugs used in treatment would no longer be required and so on.
Call it a bitter sweet end.
The magnitude of economic loss would be astronomical.
Just a thought.

Unfortunately, some of this is definitely true. There is a physician in Houston,Texas that was having huge success in treating certain types of cancer. The FDA spent 60 million dollars in attempts to discredit him and attempts to steal his patents. The National Cancer Institute and US Government attempted to indict him several times in attempts to get his patents as well. They tried to make him look like a charlatan. Many of his patients testified in his behalf.

You can read about it. His name is Dr. Stanislaw Burzinski. When I first found out I had SCA 8, my neurologist admitted that less research was being done for SCA due to fewer people diagnosed with it thus less money to be made. Very disappointing and sad news.

athlete, I’m gong to ask that you provide proof of misrepresentation of drugs and therapies when you name names. I’m not saying it doesn’t happen but I am saying it’s not always understood by the general public as to what’s happening and why.

Specifically at this point I’m referring to Vioxx. I worked for Merck-Medco when the first law suit happened. Merck originally said they would never settle, the research was there, the medication wasn’t being used as advised in the case in question and so on and so forth. Then the commercials trolling for “victims” started. Then the class action law suits happened. Then the widow of a cancer patient who was on chemo and also taking the max amount of advised Vioxx a day who died in his sleep was awarded damages from Merck by a jury. The jury even said: “The FDA approved the drug. It was on the market, you know, so that weighed into my mind, too. It was approved. They did everything they were supposed to do. They ran the tests they were supposed to run, but they could have done more.”

BUT THEY COULD HAVE DONE MORE.

Really? The company does everything expected, runs all the tests and trials, writes the warnings and side effect info include with every prescription, jumps through every FDA hoop and yet they could have done more? Notice no one said what “more” would have been.

Every time you choose to take a drug you choose to accept the side effects. You make the personal decision to balance your risk. Not the drug company, who should not be held responsible for your decision. Vioxx is actually no more dangerous than Celebrex, Bextra, or Naproxen (all of which are still on the market) but there was a legal run on the perceived deep pockets of Merck and blame was thrown on Vioxx. Eventually Merck was forced to withdrawal the medication from the market, not because the research and approvals were disproved, but because non-medical juries said “They Could Have Done More.”
https://www.npr.org/series/4807807/merck-found-liable-for-death-in-first-vioxx-case

When you list drugs and state they are inherently flawed please provide links to back up that statement.

azurelle

There are many documented instances of information being withheld; Opiods and addiction is one of the latest and biggest.

The concern of business is to maximize profits and to do so they often have to massage or lie about benefits and understate risks; they have shown to be quite willing to do so.

Don’t forget the only thing they need do is to show that their drug performs better than placebo and they are not required in most countries to publish studies that don’t show positive results.

There no requirement to publish studies with negative findings because journals operate independently of the FDA and the journals often have no interest in such articles. The FDA cannot control that.

The FDA certainly can not require publication of what they probably never see, too. After all, if the study does not show results, an application for approval would never be written and submitted.

Regarding opiates, everyone knew they were addictive. The extent of the implications of the problem was unknown. After all, parients who just had surgery or who are dying of cancer certainly can experience lots of pain and need the opiates. And, most everyone thinks they should get them. Nobody really knows what to do to let people who need them get them while preventing the deaths.

Rather than providing links for the other drugs I mention you might google them yourself to be satisfied that I am not providing biased information.

There are many studies for statins both for primary and secondary prevention. The absolute reduction in heart attack for primary prevention is around .5% over five years and is not statistically meaningful. Secondary benefit, post heart attack, of <4% is defensible but exercise and diet could overwhelm this benefit.

The harms of long term HRT therapy are now well known and widely published.

The harms of SSRI’s including the risk of suicide in the young have also been widely published.

The addictive qualities of oxycontin are now well known as is the fact that Purdue was well aware of this and did not disclose this harm.

If 10 trials are unsuccessful and 2 show benefit the FDA should have all of the information to decide if the benefit is real. It has nothing to do with the journals who undoubtedly would like to publish this information so the studies can be properly assessed for bias.

The Managing Editors of the Lancet and the New England Journal of Medicine both raised the issue of non-disclosure and the doubt with which trials can be relied upon.

And, no, Purdue did not disclose the addictive qualities of oxycontin.

Hi Linda,

I am enclosing some links that address the issues I raised:

htthttps://www.drugwatch.com/manufacturers/ps:

//www.cbc.ca/news/health/clinical-trial-results-not-published-1.3865785

https://foreverconscious.com/former-pharmaceutical-executive-speaks-out-about-the-corrupt-industry

http://thehealthcareblog.com/blog/2016/01/30/there-is-nothing-free-about-the-health-care-market/

regards

I do not think there are multiple trials for the same drug. There may be multiple locations, in order to get a sufficient sample size, but usually that is all part of the same study and the data is examined altogether. I do certainly agree that the FDA should take all the available data about safety and effectiveness into consideration when deciding to approve a drug. Unfortunately, as in the case of HRT, the full data is not available until later. The other problem is that the drug may be tested on such a limited population, the full effects on everyone who might take it are not known.

Linda, you are correct, having been in several dozen human trials over the years I can tell you that there is one trial for a specific use of the medication that takes place in multiple locations. And you’re also right, there’s simply no way to trial a large enough population to discover everything that could happen with a drug. That comes with use by the population at large.

Medications are approved for a specific use via the FDA. Any other use is considered “off label” and is not approved by the FDA - which does not stop it from being prescribed but can open up a host of negative outcomes since the medication was never intended or tested for off label use. Basically, doctors are wild cards in the use of medications.

As an example, the max daily dose of vioxx was 25mg. My husband was prescribed 50mg as a starting dose! So he was actually prescribed by a medical professional what amounted to an overdose. So of course he immediately had high blood pressure, too.

As another example, this of negative outcomes that weren’t published… I was in the human trial for Bextra (a NSAID) to have it approved for the treatment of migraine. The human trials failed utterly. It was a miserable experience all the way around so the attempt to get FDA approval was dropped and the entire trial was cancelled. There’s really no reason to publish what you aren’t doing so the case was simply closed, but some people feel that the negative/failed trial should be published even though the treatment is not going to be pursued. One one hand I see the point that negative information is as important as positive information but then again, I’m never going learn to fly by flapping my arms, do I really need to publish a paper explaining how I’m not going to be flying?

azurelle

Hi Linda,

I did not intend to start a controversy over clinical trials but only to encourage individuals to do their own research.

Indeed multiple locations are used with the intent of getting reproducible results however those that do not do are not published. This is standard practice across the industry.

The Cochrane Collaboration is a non-profit organization that reviews all studies of individual drugs for evidence and can generally be relied upon to provide unbiased information as to the risk/benefit relationship of many pharmacueticals.

I don’t want to argue with you either, since I really do agree with you. There is no doubt that drug and device approval is big business,and the focus is certainly not on the needs of people like us. We need to consider drugs with that I’m mind, look at all information available with a very critical eye, be aware we do not have access to all information we need, and make our own decisions.

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Of course trials are conducted in many jurisdictions not only for scale but to see if effects are the same of diverse populations.

I have no trouble with drug companies not publishing data on products that are to going to be approved or marketed.

I do have a problem when individual studies of approved drugs having gone through clinical trials without reproducible results are not published. This is common practice and it will continue as long as those who stand to profit pay for the trials; as in any other business it is not in their interest to self-regulate.