The Constitution of Medical Knowledge... - Advanced Prostate...

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The Constitution of Medical Knowledge (Part 3 of 3)

Tall_Allen profile image
105 Replies

Distrust of Institutions

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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105 Replies
BB_1 profile image
BB_1

Tim,

I like your posts. All thought provoking. Medical tyranny has now become unstoppable. No true consensus decision making any more. Medical studies do not take into consideration other data that conflicts with their data. $$$ corrupts the process at the expense of the patient. At one time many held the medical community as ethical and honest. Not to mention that big Pharma is in bed with the government. I have no faith in our corrupt Government. There has to be a better process to provide better care to all. Proud to be a pure blood. Keep on posting. Thank you.

Magnus1964 profile image
Magnus1964 in reply to BB_1

Well said.

BB_1 profile image
BB_1 in reply to Magnus1964

Thank you. We are in the minority. The truth shall set them free.

maley2711 profile image
maley2711 in reply to BB_1

the truth as you see it???

wilcoxsaw profile image
wilcoxsaw in reply to maley2711

3 sides to every story. Your side, their side, and the truth😉.

Tall_Allen profile image
Tall_Allen in reply to BB_1

Medical studies published in peer-reviewed journals, always looks at conflicting data. $$ provides the funding to acquire high level evidence. The medical community is ethical and honest, on the whole. There is no conspiracy with Big Pharma and Government.

mperloe profile image
mperloe in reply to BB_1

Please be more specific. Can you share cases where the government was corrupted by big pharma? I have to strongly take issue with your statement that "medical studies do not take into consideration other data that conflicts with their data." Which studies? Studies conducted by whom? Was there a data and safety monitoring committee? Was there Institutional Review Board oversight? Medication costs are obviously skyrocketing. While some of that is due to pharma profits, a large part is due to the astronomical cost of performing statistically valid research that tests a given hypothesis. Unfortunately, science and research do not provide us with the truth. Instead they provide us with the best attempt to understand the truth based on currently available data.

The sheer volume of published research and the necessity to curate and evaluate each study become an impossible task. So much of what may seem to be corruption is due to mountainous volumes or published data of conflicting data. While financial considerations may interfere with best practices, I fear that sowing the seeds of distrust against science and the promotion of conspiracy theories without facts is a much greater risk to our health.

CAMPSOUPS profile image
CAMPSOUPS in reply to BB_1

Proud to be a pure blood.I'm afraid to ask but here goes. What the heck do you mean by pure blood?

One-Eyed-Jack profile image
One-Eyed-Jack in reply to CAMPSOUPS

Pure Bloods = Anti vaxxers down here in South Texas.

dhccpa profile image
dhccpa in reply to BB_1

Somethin's gotta give!

At least, I think it does. Like many others, I ain't waitin' on it.

chickgreen profile image
chickgreen

I am enjoying reading your writing, but I'm afraid I may be what you want to label a conspiracy theorist, in that the past two years of Covid has eroded my trust in medical institutions, particularly the CDC and Dr. Fauci. The good doctor is a lost cause for me, after publicly admitting to lying to the public about Covid related policies and being entirely opaque about the potential fiscal ties between himself and the pharmaceutical companies. The CDC for many of the same reasons, although I believe that there are somewhere in the agency people who really do intend to do good for people. Just not at the top, apparently.

The truly unfortunate (?) outcome is that some of this distrust of top level medical policies has filtered down to how I approach my cancer. I am questioning much more, reading much more and asking many more questions that I would have before. I am not sure that this is a bad thing, however.

Tall_Allen profile image
Tall_Allen in reply to chickgreen

Yes, I agree that, based on your comments, you are a conspiracy theorist. I wonder if, as some believe, it is an epistemic rabbit hole, or if there is any way of coming back from it. I know it is destructive to health, so the question about whether delusional conspiracy theories can be reversed is not just an academic question. Ironically, maybe the CDC should study people like you.

Timfc profile image
Timfc in reply to Tall_Allen

A great reply to a perfect example of what you are talking about.

monte1111 profile image
monte1111

Chemo, Xtandi and etc. have kept me going five and a half years. If there's a conspiracy, I want to be part of it. Survival statistics are going up, not down. Time to thank the researchers, doctors, and yes, patient advocates who do so much for us. Does the system suck? Sure it does. It always has. Ask Jesus.

mperloe profile image
mperloe

Institutions are not perfect. Often financial considerations interfere. While many safeguards are put in place to protect study data those looking to meet financial goals or promote their career do not always have science and truth as the primary goal. justice.gov/usao-ndga/pr/em...

Timfc profile image
Timfc

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.

MrG68 profile image
MrG68 in reply to Timfc

Why do you think this is necessary. Are you saying that there are people pushing anti-science where people are taking that advice detrimental to them?Can you give some examples ?

mperloe profile image
mperloe in reply to MrG68

Politics?

Timfc profile image
Timfc in reply to mperloe

Yes

maley2711 profile image
maley2711 in reply to MrG68

Covid vaccine.

WSOPeddie profile image
WSOPeddie in reply to Timfc

I don't see it that way. I see it as someone who wants to dominate discussion on this site. I joined to become better informed, not brow beaten and lectured.

Magnus1964 profile image
Magnus1964

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.

readsludge.com/2022/01/06/b...

theepochtimes.com/instituti...

nytimes.com/2022/04/13/busi...

eppc.org/publication/the-fd...

washingtonmonthly.com/2022/...

Tall_Allen profile image
Tall_Allen in reply to Magnus1964

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?

Magnus1964 profile image
Magnus1964 in reply to Tall_Allen

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.

Tall_Allen profile image
Tall_Allen in reply to Magnus1964

I have always done just that, and will continue to. I imagine that you have done the same (I don't read posts not directed to me). How is that changed?

Magnus1964 profile image
Magnus1964 in reply to Tall_Allen

Then let us keep it that way.

MrG68 profile image
MrG68 in reply to Magnus1964

Yeah, I just have no reason to believe this is necessary. I agree with you when you say this forum needs to be open. TBH, it just looks like some push at silencing people who have an opposing view. I thought that being open was one of the strengths of this site.

I don't need saving. I can read both sides of an argument and make up my own mind. I presume that others can do the same.

Science should be able to withstand opposing views by using the science - not by silencing people.

Magnus1964 profile image
Magnus1964 in reply to MrG68

Excellent comment. You have said it all. Openness IS the strength of the forum.

Magnus1964 profile image
Magnus1964 in reply to MrG68

If science can not stand the scrutiny, then the science is faulty.

lokibear0803 profile image
lokibear0803 in reply to MrG68

Magnus stated this forum needs be open to the concerns of all.

I agree. I don’t see how TA’s post isn’t included in this principle, and I don’t see how this principle isn’t being honored in general for everyone. Just like Magnus, TA has the right to have his concerns and express them.

You’ve stated it just looks like some push at silencing people who have an opposing view. I’m not sure who is being silenced here. So far my takeaway is that a handful of members don’t like (or agree with…etc) what this post is saying, and they’ve expressed themselves. There is apparently some disagreement. Not a lot of silence from what I can tell.

I agree that you don’t need saving, and that you can read both sides of an argument and make up your own mind. It sounds like you’re doing just that.

I agree that science should hold up to scrutiny, without resorting to silencing opposing viewpoints. It seems like that’s just the kind of thing this forum is doing. Bottom line, if you have an opposing viewpoint, speak your mind and be ready to back it up. That is, as you suggest appropriate, “using the science”.

mperloe profile image
mperloe in reply to MrG68

Both sides assume each side offers valid evidence to support a claim. Following this thread suggests one side refers to findings supported by best available evidence while the other side relies on suppositions and anecdotal evidence to support their positions. Moral equivalency is neither moral or equivalent.

lokibear0803 profile image
lokibear0803 in reply to Magnus1964

If there were a drug/treatment that was life transforming, how would it be something that wouldn’t also yield profit? In which case, it wouldn’t be ignored. Seems like supply and demand would take care of that, no?

If there are budget cutbacks in any kind of business or research, wouldn’t it make sense that they narrow their focus to optimize ROI? otw, they’d not be able to continue operations.

FTM I’m not sure why “profit” has become some kind of pejorative. IMO there’s nothing inherently evil about profit. I personally kinda liked it when I was running my businesses.

Magnus1964 profile image
Magnus1964 in reply to lokibear0803

If there is no profit, no company will endure the cost of trials to bring it to market.

noahware profile image
noahware in reply to lokibear0803

Fair points, but I think the issue lies not with the profit motive itself but with how it is applied in our current system. It is not simply "bring the best and most effective products to a free market, where customers will pay a market price." (I suspect that may be how YOUR business realized profit, but it is not applicable to modern healthcare.)

If you are a "big pharma" company, it makes the most sense to approach the desire to profit by starting at the end: we want a very expensive, high-margin product that the FDA will approve such that Medicare will be forced to pay our very high prices. Should it be a REALLY good product? Sure, but it doesn't have to be.

The company can command the same high price and realize immense margins with a product that's barely mediocre, because they have "customers" who are going to pay regardless. (Note the direct customers are not the patients themselves, but rather the third-party payers of governments and insurers, who then raise taxes and premiums.)

So the real goal here is FDA approval (and mass distribution and widespread use of the product) and is NOT always "how do we make a real impact on survival with a truly great product." The fact is, the companies do not have to care about ANY highly significant increase in overall survival, so long as a product can get approved and find the desired demand by virtue of the design and statistical success of the RCT.

If it happens that a hugely expensive product with a heavy side effect burden can delay progression without showing an actual OS benefit of more than a month or two, and that looks statistically good enough to get approval, does the company really care that the product isn't really doing all that much to extend life or impove QoL? Of course not.

Why riskily pursue game-changing or ground-breaking "cures" when the big money and easy money can be had by making the slightest incremental gains in patient benefit?

The goal is NOT always going to be to get a game-changing OS difference, or to get a better SE profile. And the goal IS NEVER to make a modestly-priced product... simply because we have a system based in paying exaggerated prices with the use of Other People's Money.

In a market system, no customer except the very wealthiest would be able to buy an extra month of life for the low, low price of only $1.1 million. Insurance companies would cover such a thing only under the most expansive and expansive policies.

In a market system, you would still be able to buy "cheap insurance" really cheaply, because the premiums of the healthy young folk would not all go to pay for the care of the sick old folk whose insurers (whether private or government) are getting billed $80k for every visit to the ER. (Oh, false alarm? That will still be $80k, please.)

In a market system, price gouging is solved by market competition. What we have now is a gouging system, because third-party-payer inits current form is a hybrid of socialism and for-profit that lacks transparency, accountability, and any desire to reign in prices. If we have no way to return to more of a market-based system, we should just turn to fully socialized medicine in this country. (Socialized systems HAVE to watch costs.) The current paradigm is not sustainable.

Magnus1964 profile image
Magnus1964 in reply to noahware

Good point. As I have said we live in highly unregulated capitalistic society. Everything is a commodity, even healthcare. Healthcare should be a right not a privilege. If that is socialistic, so be it.

Tall_Allen profile image
Tall_Allen in reply to noahware

Your assertions have no basis in reality in a capitalist system. When I was in B-school, I wrote up a case study on Pfizer. They looked for an unfulfilled need, produced a drug that filled that need, tested it and sought FDA approval. Pricing was based on similar products and was different in different countries. The profit potential is (Demand x Price) -Fixed/development/allocated costs -variable costs. Sometimes there are tax incentives too, as there were for orphan drugs or Covid drugs. In the US, Congress has failed to allow for Medicare-negotiated prices. (Hopefully, they will pass the new bill that allows that.)

Usually, but not always, they are required to prove that the new product increases overall survival compared to the standard of care. They are also required to do a safety trial proving that the drug meets quality-of-life goals. So it is indeed in their best interest to develop drugs that accomplish that.

Now the insurance system in the US needs a lot of reforming - that I can get on board with.

noahware profile image
noahware in reply to Tall_Allen

"Your assertions have no basis in reality in a capitalist system."

Well, that's my whole point: we don't LIVE in a purely capitalist system where the end consumer pays for what he consumes, so far as healthcare goes. We live in a system that is SEMI-socialist, where for-profit firms take advantage, when possible, of a third-party-payer system.

And who can blame them? The US gov't is an entity that essentially wears a sign on its back that says, "Please Steal From Me." I think essential reading for understanding the impact of "free money" is urologist Anthony Horan's "The Big Scare." He details the changes and perverse financial incentives he saw first hand from the 1970s through the 2000s.

I'm not saying a company isn't required to prove SOME increase in overall survival or to do safety trials. I'm saying the market incentive to do BETTER is at least partially taken away by the system.

Suppose you wanted to market a$100 (wholesale cost) bottle of wine. The quality would have to be reasonably high to merit the high price, if being sold to end consumers who knew their wine. Now suppose the marketer had a bulk customer that only required the wine meet a lower passing standard but it could still be sold for $100. Why would the marketer concentrate on the effort and expense of securing the very best wine when the middle-man will buy all he can produce of a lesser product at no impact to his sales?

The nature of modern corporations and efforts directed nearly exclusively toward "shareholder value" and executive compensation almost make it an imperative that they game the system to some degree, when the rewards are so high and risks so low. The Medicare system has driven it that way, because that's where the big money is... and you need only have a product JUST GOOD ENOUGH.

That doesn't mean you never put out great products, or search for "miraculous" gains in life extension. It just means that you can still hit a Home Run without doing that, because the key the HR is in FDA approval and not just in the degree of benefit to the patient or to society.

When Pfizer settled a multi-billion dollar lawsuit regarding false claims and kickbacks, among other things, the company's general counsel said then that it regretted "certain actions in the past."

Which actions, do you suppose? I suspect ones that were NOT all about bringing the best and most effective products to a free market.

HCA paid fines years ago for conning Medicare. I can assure, they still are. (I know several people who work at HCA hospitals.) The difference is, now they probably do it (mostly) legally, because it is so easy to do. And... it creates shareholder value and executive bonuses!

Brysonal profile image
Brysonal

A very interesting series. I am UK based where we have a big government funded institution - The National Health Service- free health care at the point of delivery, funded by tax revenues. Our private system is staffed by NHS payroll doctors working a second job as it were and in both systems ‘Standard of Care’ is king, the NHS of course has limited resources and privately penalties can and are applied to consultants going too far off the ‘standard of care’ path even privately.

Yet APCa is not cured by SOC. The side effects of SOC are fundamentally life changing for the worst and new developments in the pipeline are often not available as clinical trials in a timely manner for the individual.

Here in the UK nobody in my medical team that told me I was 1/1000 to develop mets from a G3+3 post HIFU mentioned Lu-177 was in the pipeline. It was here on this community that I read experiences of pioneers who had used it whilst hormone sensitive and then I did the research and presented it to my team.

It was here I read the whole story of an inspirational member who is indeed likely cured given the time that has elapsed since he underwent a trial of multiple early chemos. My own local onco said I’d probably never be the same again after chemo.. when my Lu-177 onco suggested adding 3x Docetaxel I remembered the success of that inspirational member from here and was given courage to say yes.

On here I learnt of ice caps, ice gloves, ice slippers, fasting pre chemo. I used them all.

I have learnt much from so many, ignored much too .

My local onco is now telling the hormone sensitive about Lu-177 abroad he tells me plus the combo with Docetaxel he accepts has ‘done no harm’. He wasn’t impressed by by 2 brachys I took after my 20 VMAT all pelvis radiation and gave me ‘the look’ when told I’d gone ahead. All smiles now my PSA has hit undetectable though but the treatment plan I followed was very far from the SOC he suggested.( nothing else was ‘in his gift ‘ was what he said at the time)

I am still looking to explore other treatments if I stay stable after a decent recovery time. The J591 trial/ personal experience report I only know from here but am very interested in.

Whether it’s clinical trial reports or personal experience reports I want to hear it all and I want to decide myself whether to ignore or investigate further.

In my opinion we have to assume all are educated enough to be aware that information has different degrees of validity, you can choose to take note or not.

Unfortunately in the UK you cannot get full holistic information from your medical team. You will usually get great treatment but it will be standard of care. If you want standard of care plus you have to advocate for yourself. And travel. To do that you need information about ‘what else is happening in the wider world’.

But even without my APCa , I firmly believe that all are entitled to a voice. That will mean I read some things I find ‘nutty’ and just move on from.

It’s a small price I feel to ensure we don’t end up on a ‘cancel culture’ road or in an ‘echo chambe’ or as nazism was mentioned in this thread ‘burning books’ we don’t approve of.

MrG68 profile image
MrG68 in reply to Brysonal

Yes, I agree. I see no need for people to impose these restrictions.

maley2711 profile image
maley2711 in reply to MrG68

What am I missing......I've seen nothing about restrictions here.....other than perhaps where someone has been overly hostile to another participant...good manners and politeness are always a good idea......even when tempted to slam some outrageously ridiculous comment???

Magnus1964 profile image
Magnus1964 in reply to Brysonal

Beautiful. Well said, Bravo.

Brysonal profile image
Brysonal in reply to Brysonal

I feel the need to reply to myself as to why I mentioned ‘book burning’ and a nazi reference. The original thread has been moderated or amended so the flow of the original thread is lost.

CAMPSOUPS profile image
CAMPSOUPS

I believe so. Disguised as anti-vax. Or in addition to.

MrG68 profile image
MrG68 in reply to CAMPSOUPS

Really?

HarGreg profile image
HarGreg

So well put! I truly believe it will get worse! There is no cure for stupid or willful ignorance.

MrG68 profile image
MrG68

I read that comment like it meant their blood wasn't 'contaminated' with vaccines.You read it as something else. Funny how people see things totally different to confirm their bias.

MrG68 profile image
MrG68

So why do you believe that this is necessary on this site? Do you think that people have took advice of people that have had consequences of their health?Can you supply us with examples of where that would be the case?

Tall_Allen profile image
Tall_Allen in reply to MrG68

People who ignore the advice of medical institutions die of cancer at almost 3x the rate of others who adhere to the guidelines of medical institutions. Here's what the data show:

academic.oup.com/jnci/artic...

MrG68 profile image
MrG68 in reply to Tall_Allen

Why do you feel that this is applicable on this site? Why do you feel this is necessary here?

Tall_Allen profile image
Tall_Allen in reply to MrG68

Because this site is here to support men with prostate cancer, not to make them worse off.

MrG68 profile image
MrG68 in reply to Tall_Allen

What examples do you have where you believe that this has happened on this site.Please be specific.

Tall_Allen profile image
Tall_Allen in reply to MrG68

I know you are new here. I suggest you search the archives.

MrG68 profile image
MrG68 in reply to Tall_Allen

You’re the one pushing this through. You should be to validate why you’re doing it better instead of asking me to do that for you.I haven’t seen any evidence of that.

maley2711 profile image
maley2711 in reply to MrG68

Out of a desire to help some men think twice about following questionnable treatment paths, whether medication, supplements, etc etc. Nothing is being imposed by TA's post......expressing what more than one of us has often thought.

No one is stopping anyone here from believing what they want to believe...are they?

MrG68 profile image
MrG68 in reply to Tall_Allen

That resource you’ve included includes all kinds of cancers. This might be the case where alternative medicine in general has a lower life expectancy.However, since you’re using this to justify your view for THIS site, which deals with prostate cancer, I should point out the following what the paper says:

‘Notably, there was no statistically significant association between AM use and survival for patients with prostate cancer. ‘

Sometimes I get the impression that you just post these papers without reading them.

Tall_Allen profile image
Tall_Allen in reply to MrG68

The reason he excluded prostate cancer is that the time until death was too long. As you see, for breast cancer the mortality rate was almost 6 x worse. Sometimes I get the impression you comment on these papers without understanding them.

MrG68 profile image
MrG68 in reply to Tall_Allen

Yet again you attempt to use ‘science’ as some vehicle to push your beliefs.You posted this resource as some proof of a discussion related to prostate cancer and life expectancy.

It’s obvious you didn’t read your own reference because the very topic of prostate cancer is not significant - as stated in the paper.

Try and justify it as you want. This is

exactly what you did.

It should be obvious to you that you are using the scientific information out of context. For prostate cancer it is not significant. This is your own reference which argues against your point. Period.

Tall_Allen profile image
Tall_Allen in reply to MrG68

You misunderstood the study. His goal was to see whether alternate therapies caused death sooner than SOC therapies. It did. In fact, in subgroup analysis, the mortality rate was over 5 x greater for women with breast cancer. He excluded prostate cancer patients from the analysis because the time from diagnosis to death is so long, but the results hold true for all cancers. People who peddle alternative therapies are pedaling death.

MrG68 profile image
MrG68 in reply to Tall_Allen

If prostate cancer was excluded, why did you include it as a reference for an issues related to prostate cancer.

Tall_Allen profile image
Tall_Allen in reply to MrG68

Because it is true for ALL cancers - not just subgroups. See my article about it for an explanation:

prostatecancer.news/2018/07...

MrG68 profile image
MrG68 in reply to Tall_Allen

I'm not concerned about other cancers. The one of interest to me is prostate cancer.I come to this website because of prostate cancer - none of the others.

There is no data in this paper that supports your argument on prostate cancer.

None.

This is what you said:

'People who ignore the advice of medical institutions die of cancer at almost 3x the rate of others who adhere to the guidelines of medical institutions. Here's what the data show:...'

The data doesn't show what you are suggesting for prostate cancer.

You either didn't read your own resource or are trying to use other cancers data to validate your argument.

I suggest you attach better resources.

Tall_Allen profile image
Tall_Allen in reply to MrG68

Read this:

prostatecancer.news/2018/07...

Tall_Allen profile image
Tall_Allen in reply to Tall_Allen

Why on earth would you imagine it applies to all other cancers but not prostate cancer? As I wrote:

"Although these observational studies did not follow prostate cancer patients long enough to detect differences in survival, we see the damage that use of both complementary and alternative medicines had on patients with more virulent cancers. Patients who get complementary medicine are more likely to refuse conventional treatments (even though they received at least one conventional treatment) and are about twice as likely to die because of that decision."

MrG68 profile image
MrG68 in reply to Tall_Allen

Maybe I got this wrong: First this article is something you wrote, is that correct?

No one of the references used in this article is the EXACT article we are debating. You use this article as a validation to the thing we are trying to validate? Really?

As for the other reference included in your piece.

-> It also isn't specifically related to prostate cancer. There are other cancers included, as the other paper. Again.

-> It is a paper on Complementary Medicine - not Alternative Medicine.

I could be wrong but I can't see anywhere that specified alternative approaches.

It also have conflicts of interest.

It has a lot of limitations specified:

Our analysis is limited by its retrospective and observational nature. The use of CM was likely underascertained given patients’ hesitancy to report its use to clinicians and for database registrars to code this use reliably. However, this factor was likely a highly specific variable, which includes only those who actually used 1 or more forms of CM. In addition, it is possible that clinicians were more likely to document the use of CM when patients were using noteworthy therapies that may have resulted in refusal of CCT. There are inherit limitations in retrospective large data collections such as treatment facility selection bias, which may exist because only Commission on Cancer–accredited hospitals contribute data to the NCDB, although the NCDB still captures 70% of newly diagnosed malignant neoplasms and the NCDB has extensive quality assurance mechanisms in place to ensure correct data capture. Consistent with this, we observed that assignment of CM differed significantly by facility. We attempted to account for this variability by clustering by the reporting facility. Other limitations to the data include unmeasured confounders that could influence survival, including lack of data about aversion to cancer screening, refusal of treatment of noncancer-related comorbidities, body mass index, smoking history, burden of disease, functional status, individual income and educational levels, details about incomplete or dose-reduced treatments, and cancer-specific survival. As patients receiving CM were more likely to be female, younger, more affluent, well educated, privately insured, and healthier, we hypothesize that our sample was biased in favor of greater survival for patients who used CM (vs no CM). Information about toxic effects of treatment is not available within the NCDB, and any potential benefits of a treatment modality should be weighed against the possibility of harm and include patient preferences. Last, the absence of information regarding the type and total number of CM modalities used is a limitation. Types of CM previously identified include herbs and botanicals, vitamins and minerals, probiotics, Ayurvedic medicine, traditional Chinese medicine, homeopathy and naturopathy, deep breathing, yoga, Tai Chi, Qi Gong, acupuncture, chiropractic or osteopathic manipulation, meditation, massage, prayer, special diets, progressive relaxation, and/or guided imagery.4 Therefore, we cannot comment on any specific type of CM and its association with survival. Regardless, except for mind-body therapies that have been shown to improve quality of life,6 there is limited to no evidence that these therapies have been shown to improve cancer survival as a CM.

Do you have anything better than these?

Tall_Allen profile image
Tall_Allen in reply to MrG68

I wrote the article on prostatecancer.news about Skyler Johnson's study, and after discussing it with the author (discussion available on the Malecare site on youtube). If that's not enough for you, your confirmation bias is blinding you.

MrG68 profile image
MrG68 in reply to Tall_Allen

I dont care of you wrote it with the blessing of the Pope.No it isn't good enough.

It uses the lowest form of evidence, observational studies, and had conflicts of interests and a list of limitations longer than your arm. Why would I ever find that acceptable evidence?

But yet AGAIN you ignore the criticism and brush them away as confirmation bias.

You’re supposed to prove things with science. Isn’t this what you’ve been saying all the while. Yet when confronted by anyone you default to either conformation bias, or randomization rhetoric and say the person isn’t understanding what the data says.

Top tip: to to actually use some credible science to prove your point.

Tall_Allen profile image
Tall_Allen in reply to MrG68

Testing everything with a clinical trial would be prohibitively expensive and time consuming. So scientists use screening procedures. Here's how such things are screened by scientists: if a lower level of evidence detects a problem, then it is screened OUT and no further trials are done. If a lower level of evidence detects a benefit, then it may advance to testing with a higher level of evidence. But very few substances that are beneficial at a low level of evidence, prove to be beneficial.

If you want to use a substance that has safety concerns at a lower level of evidence, that is your choice. The rest of us don't want to take that risk, but it is your body, your life.

MrG68 profile image
MrG68 in reply to Tall_Allen

Just more waffle with terminology and procedures thrown in there that don’t answer any of the previous posts concerns.Nothing you’ve said there justifies how you’ve tried to use poor evidence papers as your best evidence you’ve got available.

If you had better, you’d have shown it.

You have a habit of ignoring what people are saying and then calling them illiterate or incapable of understanding. Yet the evidence you’ve supplied here is very poor quality - and I’m being nice there. Then you claim that you’re some bastion of science. It’s incredible really.

Tall_Allen profile image
Tall_Allen in reply to MrG68

If you don't want to hear or because of your confirmation bias, you are incapable of hearing the answer- why ask the question? I will ignore all future responses from you to me.

MrG68 profile image
MrG68 in reply to Tall_Allen

There you go again. Conformation bias… blah blah. Totally ignore any issues.I have no problem you ignoring my posts.

But I will continue to post where I see you posting nonsense or content of extremely weak evidence made to look more than it’s worth by creating an opinion piece based on it. Things like that.

You should, IMO, stick to your advice on drugs. You add value to people asking for advice about that.

noahware profile image
noahware in reply to MrG68

This is my problem with the CDC: they use the lower and weaker levels of evidence as valid to support whatever policy or meds they are pushing, because "that's the best science we have at the moment," but anything they are NOT pushing gets the "there-are-no-RCTs-so-this-is-not-safe" treatment.

Tall_Allen profile image
Tall_Allen in reply to noahware

There have been many RCTs since covid, so I have no idea what you are talking about.

Darryl profile image
DarrylPartner in reply to Tall_Allen

youtu.be/whWPtWZIBGs

Gearhead profile image
Gearhead

I understand Tall_Allen's concerns in his Part 3 essay. I think the main tool available to most of us to deal with these concerns is simply good critical thinking skills.

London441 profile image
London441

We already knew that.

maley2711 profile image
maley2711 in reply to London441

I'm a dummy...I didn't know that !!!!!!

monte1111 profile image
monte1111

This post has been a pure joy. Good night everyone.

jac_j_sp profile image
jac_j_sp

The best way for pharmaceutical companies to promote their products would be to get unsolicited endorsements from satisfied customers in an internet forum.

mperloe profile image
mperloe in reply to jac_j_sp

Or consider the cutest TV commercial with the best music.

MrG68 profile image
MrG68 in reply to mperloe

Ha, with people walking through fields, smiling in the sunlight with their arms outcast and spinning every now and then….Only to have the sped up disclaimers at the end… may cause diarrhea, hair loss, galloping foot rot or death.

mperloe profile image
mperloe in reply to MrG68

I particularly wonder about the pink lady who smiles, dances and rubs her tummy while singing about diarrhea. Luckily when it comes to deciding on ADT we can do better than TV commercials.

BB_1 profile image
BB_1

Amen brother!

wilcoxsaw profile image
wilcoxsaw

Unfortunately, many on this site are intolerant of any view but their own

michael00 profile image
michael00

Thank you, great writing.This takes me back to when I was first diagnosed. I had no groups like this to lean on and a bad oncologist who would not explain things. Of course I went to the internet for information which was all outdated and half of it just personal opinions. I had myself convinced I would be gone in about 8-9 months. 4+ years later I'm still here and learned to ignore things that have no basis in scientific fact and documented trials. With all the crap out there about cancer, covid, pharma, etc they never have facts to back up the claims.

I rely on real science for my decisions.

Hailwood profile image
Hailwood

Beautifully written. Thank you

Magnus1964 profile image
Magnus1964

I hope this concludes any further discussion on science vs openness. Let's get back to the very important subject that brings us here, prostate cancer.

PabloK profile image
PabloK in reply to Magnus1964

From your lips to G'ds ear - this was a great exercise and points out how things are changing and have been supercharged with the internet, social media, and social trends - but this forum is very important to me and many others - and has been an incredible resource that may have saved my life.

Magnus1964 profile image
Magnus1964 in reply to PabloK

Then let's keep it the way it is and get back to prostate cancer.

Tall_Allen profile image
Tall_Allen in reply to Magnus1964

All of this is definitely about prostate cancer. Do you imagine that prostate cancer diagnosis and therapy is magically created outside of medical science? You are free to participate in any discussion you like.

anonymoose2 profile image
anonymoose2

“ It had always been a fringe group, but in the US, a third of the population did not get vaccinated against Covid-19”

North of 100 million. That’s a big number for our little country.

Personally I didn’t take the shot. As I’m pretty much a hermit but do a lot of outdoor activities without many humanoids present. Nice part of living in the country. If I lived on stacks of people in a commune I would most likely take the shot.

One think I don’t understand is my friends who I don’t see often but do communicate all have had the shot and all have gotten Covid from mild to severe. And not just once but twice and one 3 times. All were pretty Sick for a week taking anti virals. The better half didn’t take the vaccinations and works as a cashier in Walmart. All her coworkers have had Covid with and without the shot. No one died. She has been around 250k people over 2 years (conservative figure) and Im convinced God has given either a protective covering or her genes 🧬 just don’t allow her to get sick from Covid. I find that very interesting.

Gemlin_ profile image
Gemlin_

Tell people a conspiracy theory and and quite a few will immediately believe it's true. Tell them the paint is wet, and they have to touch it to be sure.

Shams_Vjean profile image
Shams_Vjean in reply to Gemlin_

“There are three kinds of men. The ones that learn by readin’. The few who learn by observation (one exp. being peer reviewed clinical trials). The rest of them have to pee on the electric fence for themselves.”

- Will Rogers

lokibear0803 profile image
lokibear0803

Thanks, TA, for the 3-part series. I’ve enjoyed reading through things, following some links, and thinking about the replies that followed.

Not being facetious about enjoying that last part. As Joan Rivers advised, “Relax. It’s all funny.”

Andy1569 profile image
Andy1569

I am not aware of ANY other "Group Site" that contains as much back and forth between members. Please keep up the good work. Just don't ever forget that this is a PCa site.

😉

WSOPeddie profile image
WSOPeddie

I'll second (third?) people are turned off by his overbearing and yeah know-it-all attitude

in reply to WSOPeddie

You're right,I've watched him pull people down. He uses the system to defend himself and his clingons. People like him divide the world and I'm sick of it. I enjoy my garden and my organic world and will continue to travel my journey as close to God as I can....

Magnus1964 profile image
Magnus1964

Throughout my years on this forum the one thing I have always stressed to members considering supplements is to always tell your doctor what you are taking. I don't think I have ever used the term alternative medicine. I prefer complimentary medicine. Use foods and supplements WITH standard order of care. There have been members who have said they were going to take the alternative path with prostate cancer. I tried to convince these members to use supplements WITH the treatment their doctor recommends. I see nothing wrong with this. Even our own government has websites on complementary medicine and these web sites use the the term “alternative” medicine.

cancer.gov/about-cancer/tre...

nccih.nih.gov/

If the United States Government can be approving of complimentary medicine why can’t we.

WSOPeddie profile image
WSOPeddie in reply to Magnus1964

Yes and my GP, urologist and cardiologist always ask what prescription drugs and supplements I take and I provide that info. No big deal regarding supplements. I wonder why some here make such a big deal out of them. An increasing point of contention on this site driven largely by one person.

Magnus1964 profile image
Magnus1964

This is all mute I have been informed by Tall_Allen that the monitors are already in place. I am slowly being deleted from the form. Good luck.

CAMPSOUPS profile image
CAMPSOUPS in reply to Magnus1964

You know how to contact Darryl. Do so. Then try to tell us you are being "deleted".

Monitors, Monitors. look out they are falling from the sky.

I repeat what I said in your "being erased post":

I hope I dont have to blame you for losing quite a few compassionate compadres whose compassion and comradery I truly appreciated.

This whole "the forum is changing conspiracy thing" has caused that loss of special guys and gals. Doesn't matter what their treatment beliefs are. Can take or leave or even argue against them. But behind that when the chips are down they were here with their caring words. Gone now thanks to the nonsense "sky is falling" crap said by you and a few others.

swwags profile image
swwags in reply to CAMPSOUPS

If you know where they went (and I think I know of whom you speak), can you PM me because I too followed a couple of them and would like to continue.

CAMPSOUPS profile image
CAMPSOUPS in reply to swwags

Im sorry but if they "went somewhere" I don't know where.Some of them said they will retain there "membership" here but not interact.

You could reach them by finding their username and sending them a PM.

Others truly closed their account and their username becomes the name "hidden".

Darryl profile image
DarrylPartner in reply to Magnus1964

Brother Magnus. I respect your thoughts, but your comment about being deleted from the platform is pure nonsense. Please refrain from scaring people with comments that are not true.

CAMPSOUPS profile image
CAMPSOUPS in reply to Darryl

Amen. Thank you!You hit the nail on the head.

Darryl profile image
DarrylPartner

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.

The ability to reply to this post has been turned off.

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