There has been growing distrust of institutions among lay people, sometimes with good reasons. There were abuses like “p-hacking” that fostered distrust. Until recently, publications did not require authors to be transparent about potential conflicts of interest. Often, negative findings were not published (the US government now requires all registered clinical trials to publish their findings). Budget cutbacks at the NIH decreased funding for medicines and technologies that did not have profit potential. Mistakes and abuses were publicized in the media and over the Internet. Institutions are valuable not because they don’t make mistakes, but because they correct mistakes and abuses. Retractions and corrections are published. Researchers who lie are found out and excluded from future publication.
The other threat to truth came from an unlikely source – conspiracy theorists. Before the Internet, they were just isolated “nut jobs.” But social media provided the means for them to find others with enough common beliefs to form a “non-truth” community. On the patient forum, Malecare's HealthUnlocked, I’ve seen several who point to a supposed Big Pharma/FDA conspiracy. Although they are still a minority, they can have outsize influence by dominating conversations, mixing truth and lies, purveying lies so outrageous that some believe there must be some truth to them, and by blinding the conversation with so much bullshit that reasonable people despair of ever discerning the truth. On Facebook, Twitter and YouTube, bad actors can stage a concerted campaign to “like” and “share” content they want to use as propaganda. They can “troll” serious posts to render the conversation harder to follow.
Because institutional knowledge was not readily comprehensible to laymen, and because distrust mounted as abuses were well-publicized, the Internet (Dr. Google) became a substitute for expertise. Laymen believed they understood the subjects as well as experts and their institutions, and they were able to find others on social media willing to tell them so. When biases are confirmed by media personalities they become particularly pernicious. We always believe relatable people we know and like (from TV, videos, and podcasts) versus strangers who author incomprehensible studies full of numbers and jargon we don’t understand. This cognitive error is called “the availability heuristic” – it’s why you may believe the claims of someone you know on an Internet forum over high-level statistical evidence. The danger of substituting personal knowledge for institutional knowledge in medicine became apparent with the anti-vaxxer movement. It had always been a fringe group, but in the US, a third of the population did not get vaccinated against Covid-19.
I'll leave suggestions on what can be done to a separate post
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Tall_Allen
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This 3-part series by TA has been the most impactful and insightful post since I joined healthunlocked. This series should open the eyes of all of us to so much more than our own little prostate cancer world. We all spend a lot of time online, and we are regularly bombarded with information from so-called "experts" in everything from healthcare, to investments, to travel, and of course, to politics. So much of it is nothing more than a reflection of personal opinion and conjecture rather than well-studied and carefully-researched actual data. Right now we need to fully understand what Tall Alan is explaining to us, and we need to diligently filter out all the other nonsense to make this the life-extending forum it was intended to be.
You have said "Budget cutbacks at the NIH decreased funding for medicines and technologies that did not have PROFIT POTENTIAL." I do not find that comforting. In other words potentially life transforming drugs and treatments are being ignored because they will not yield profits. This does not inspire my confidence in the NIH.
In your post it appears you believe the abuses of our government institutions are in the past. Perhaps the articles I added to my previous post were not timely. Here are some updated articles on the same problems, all published this year.
In 2011-8, to avert another government shutdown and defaulting on US bond interest due to limiting the debt ceiling, Congress passed an immediate cap on domestic and defense spending that would yield some $917 billion in deficit reduction. This included extreme cutbacks to NIH, which effectively stopped a lot of government funding for cancer clinical trials. During the time, private industry had to pay for the research if there was any research to be done. NIH budgets have now been restored (62.5B in 2023), and we are likely to see a boom year next year in government funding for research.
You still have not responded to the question of specific instances of governmental abuses. If you are merely imagining they could occur, is that any reason to disbelieve any NCI-sponsored trial? If so, which?
Thank you for that history of the US budget. Interesting. Restoration of the NIH budget did not stop the revolving door between the FDA and pharmaceutical companies. But I digress. I am tired of beating this dead horse.
My bottom line is that this forum needs be open to the concerns of all. Why do you find it necessary to save those of us who are interested in all forms of information from ourselves? Can't you present your argument for or against a supplement or treatment? I am sure if you presented good information against a supplement or treatment the members would listen respectfully.
You state a lot of truths TA, but I and many like me still have trouble trusting the FDA. So many of their former employees end up working for big Pharma at multiples of their own salaries. That conflict of interest is a big concern. What the FDA did to allow the opioid crisis to occur is enough on its own to blow up their credibility. This was no small thing. Literally hundreds of thousands of people died because they allowed Purdue pharma to label their drug as non addictive and to promote it to doctors and hospitals as safe and non addictive. Trust journalofethics.ama-ad this from what i think you go dude a credible source. The AMA.
This went on for many years and there were exactly zero studies to support the position the FDA allowed Purdue to promote . The FDA was warned numerous times over the years and did nothing. Add that to their promises that the vaccine would prevent COVID and lock downs help (a John’s Hopkins study proved that wrong) and you can see why there is skepticism by many of us. You don’t have to be a conspiracy theorist to have reservations about trusting the FDA. I’m aware tho that’s it’s better than hypothesis and conjecture but I’m just sayin…
I notice that all the drugs you've taken are FDA approved, so in fact, you really have no problem trusting them when it comes to your actions, and your life.
I agree that what Purdue Pharma did was unconscionable. But how is the FDA involved? Should they not approve pain killers? I know many people with cancer who are grateful they did.
The FDA never promised the approved vaccine would prevent Covid. That is entirely in your imagination. They claimed it would prevent many hospitalizations and deaths, which is exactly what the vaccines have done. You seem to have joined the epistemic bubble - you are presenting fictional information as fact.
"The FDA never promised the approved vaccine would prevent Covid. " It sounded that way to me and millions of others. If this is not the case, then their silence spoke volumes.
If you misunderstood, that is on you. This was a life-or-death matter, so most of us listened more carefully than you did. They are not silent, and have never been silent. If you read the above, you might realize that the knowledge bubble you have wrapped yourself in screens out information that doesn't confirm your biases.
While I agree that I use FDA approved products, I do so after doing my own independent research to try and confirm the efficacy of those products. I also use non FDA approved treatments like the “triplet therapy”(before it was proven to work) and Provenge while hormone sensitive. Clearly the FDA is the best source we have and far better than others. But that does not mean they are immune from unethical behavior.
With your incredible base of knowledge I can’t believe you ask “how is the FDA involved” with The OxyContin abuses. The FDA is widely considered complicit in the opioid crises because they approved labels that had zero evidence to support those labels. Purdue then used those FDA approved labels to convince doctors it was safe to prescribe. Most damning is that the actual FDA doctor that approved the labeling, went to work for Purdue shortly thereafter.
Here is some fact based evidence of the FDA involvement written by sources like CBS news and the AMA:
On April 16th 2013 the FDA took the following action with zero evidence to back it up.
“FDA has determined that the reformulated version of OxyContin has abuse-deterrent properties and has approved new labeling that indicates that the product has physical and chemical properties that are expected to make abuse by injection difficult and to reduce abuse via the intranasal route.”
You cannot go through the trial records the way the FDA does. You have to rely on them to do that. Your own research is just looking at the tip of the iceberg. None of the drugs available to you would have been available without the FDA testing process. Once they approve a drug, a doctor can prescribe it for any indication off-label. Companies seek approval for on-label indications to extend their patents and to get insurance to cover it.
It appears that the FDA screwed up on Oxycontin and that is too bad. So is your solution to get rid of the FDA or would you just institute whatever reforms are required to make it work better?
We've had a nice run of replies. Malecare, founded in 1999, but actually begun by me in 1997, is one of the pioneers of health related remote/online support, as well as an in-person support group network. We've learned a lot since day one, right up to this moment. We will always work harder to be better. That creed makes our work fun and gratifying. We know we are helping people live longer and happier lives, and for that, each of us is honored. For now, replies are turned off. Further conversation about community management can be had with me via direct message (click on my avatar).
This is a prostate cancer support community. Let's us focus on helping ourselves, our brothers and our sisters. Replies for this post are now turned off.
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