Burzynski: The Movie **SKEPTIC ALERT**

apple

from what i've seen in 'friends',

people who are for Burzinski are against vaccines.

go groupism.

bluedahlia

But, but, the immune system!!!!!!!!!!!!!!!!!!!!!!!!!!

Anonymous

http://zdoggmd.com/2011/02/immunize/

bluedahlia

hahahahahaahhahaahaha!

AnneW

Thank goodness for the "herd immunity" effect. The kids who DO get immunized actually help prevent the others from getting ill. So everyone out there who is NOT immunizing kids, please thank your neighbors and friends for taking on the responsibility of keeping your kids healthier.

In our state, 2 MMR shots are required for college. Yes, a student can sign a personal or religious exemption, but should there be an out break of measles, mumps, or rubella on our campus, only immunized students will be allowed to step foot in the classroom for the duration.

And a personal or religious expemption to the MMRs voids their ability to get any other kind of immunization at our clinic, whether it's an annual flu shot, or a tetanus shot for a wound, or vaccines for foreign travel with their department.

thenewme

Bwaahahaha, Z Dogg, MD, LOL!  The Big Pharma version of Weird Al

AnneW, I totally agree about herd immunity.  That's interesting that with an exemption to MMR you can't get other immunizations - I hadn't heard of that type of restriction.  It seems like a good thing for personal exemptions, but it must be concerning for parents of children who have a medical reason for declining.  IMO, it's too bad we don't have more recourse for those who simply choose to freeload off the herd immunity of properly vaccinated children.  

Beesie

How interesting that all the comments on my post have been from those who are not the conspiracy theory supporters.  

Which leads to another observation.  ;-)   I don't participate in this thread very often or very often get into discussions on this board with those who trash the "Medical Industrial Complex" and "Big Pharma". But when I do, usually it's in response to a discussion or question that can be easily disproven with reliable data.  Comments like:

"there's been no increase in BC survival over the past 25 years"

"the majority of women who have BC have a recurrence"

"it's only because we're women that we are treated this way; they would never do this /say this/propose this / about prostate cancer"  

"chemo doesn't increase survival rates" 

Just a few examples.  

When I see comments like those, against my better judgement I sometimes respond. Usually what I respond with is data and/or articles that contradict or disprove whatever was said.  Often I try to provide more than one data source and I try to provide information from data sources are that as reliable as they come (although I suppose if one believes that the conspiracy is really widespread, one might not consider SEER data or NCI data or The American Journal Of Clinical Oncology to be reliable/believable).  

What I find interesting is the response, which is often the same as the response that I got here to my post from yesterday.  No response.  At least no response from those who made (or applauded) the statement in the first place.  It appears that the strategy is that if someone (not just me, of course) presents data that can't be disputed, or logic that can't be defied, the best approach is to ignore it.  If it's ignored, then it's as if it didn't happen. And that means that the original statement wasn't disproved and later on, in another discussion, the same statement can be made again.  

Is it just me or has anyone else noticed this too?  

It's a shame, really. The proponents of alternate and complementary treatments have some very valid and interesting things to say but it tends to get lost in the rubble of mis-truths and misinformation and inflammatory statements. 

suzieq60

Totally agree with you Beesie. I'm basically a scientist (albeit a computer scientist) and I look to studies and proven treatments only, not some hairbrained diet or enema that 'might' help - might being the operative word.

Sue

althea

Beesie, I'll answer mainly because I think you are one person on this thread who will listen to what I have to say.  I don't think that is the case for many who populate this thread.  Frankly, I don't understand why people who insist on evidence-based-according-to-allopaths are spending so much time in this forum.  It's not that I don't think evidence is important.  To my mind, it's partially a difference in world views as to what counts as evidence.  I've never understood, for example, why case studies, aka anecdotal accounts, are dimissed out of hand.  Surely, there must be a point where enough anecdotes add up to the kind of evidence that would satisfy anyone and everyone.  And the first few accounts should surely count as clues to warrant further investigation.  To my mind, this is the path Burzynski is following, and he's getting grief with every step of the way.  Vitamin C is another example.  There are many case studies of people at the brink of death being saved with infusions of vitamin C, yet it is marginalized to this day, literally decades after Norman Cousens wrote Anatomy of an Illness.  

So when people demand to see the evidence-based study to explain why x y or z is or isn't so, it's frustrating to me because things that are dirt cheap (comparatively speaking) that could be effective are not receiving dollars needed for studies.  I don't see it as a conspiracy per se, but more as the type of climate we live in.  Our system is money driven.  It's a fact.  Yet, anyone who makes mention of this is declared to believe in quackery or to be a conspiracy theorist.  So what's the point in responding?  I personally spend my time learning more things every day.  I feel like a lot of people in this thread, and this forum in general lately, have already made up their minds about what they believe. And that's fine.  I just don't know why they're hanging out here in this forum when there's no likemindedness that I can see.  

To use an analogy, I see the accumulation of holistic health information I have amassed for the last several years as similar to effort put into learning a foreign language.   I noticed about 12 or 18 months into my learning curve, it seemed like all of a sudden, a degree of fluency seemed to appear out of nowhere.  Of course, it didn't appear out of nowhere.  I had to learn a new alphabet first, and a new way of forming a sentence. 

When I dont' respond to much of what goes on in this forum, it's because I feel like a person needs to have some genuine interest in learning a new language to get anywhere, and I frequently see questions adamantly posed in English without any inclination toward learning a new vocabulary.  I'll share with people who show interest.  That's my general rule for myself around here. 

pip57

An anecdote is defined as a story, narrative or tale.  That is why it cannot be considered 'evidence'. The 'story' gets altered, facts are left out and the results are glorified.  That is why we were so amused by the 'telephone' game when we were kids.

althea

I'm not suggesting one person's story should be considered evidence.  But why not consider it a clue?  Just as the telephone game invariably garbled the message as it passed around the circle, one voice at a time is prone to that.  Conversely, one hundred voices saying the same phrase at the same time will deliver a message loud and clear. 

pip57

I'm not sure that is true.  The mob effect is known to distort the accuracy of anecdotes.  

I do think that we should be paying attention to what is being said.  However, I don't believe we should put too much emphasis on anecdotes until they can be studied under specific conditions.   

rosemary-b

Once again this is not the alternaive forum. It is for people who embrace both traditional western medicine and complementry therapies. We want proof that both will work. I have changed my diet  and eliminated many toxins from my environment because those steps have been proven to help prevent recurrance by evidence based medicine.. There are many things I will not do because the evidence is shaky

thenewme

Althea,

You've made your position very clear that you don't think I belong here, but I just don't see where either BCO rules or common sense dictate that I wouldn't be allowed to start a skeptical discussion of a very relevant breast cancer-related topic, especially an important current event such as this.

You said, "Our system is money driven. It's a fact. Yet, anyone who makes mention of this is declared to believe in quackery or to be a conspiracy theorist."

I don't know where you get that idea.  I'm not sure if it was aimed at me or not, but I certainly don't disagree that our system is money driven.  It definitely is, and it's true for both alternative and conventional medicine, wouldn't you agree?  To me, a quack is someone who believes in quackery and a conspiracy theorist is someone who believes in conspiracies to explain things. Money doesn't necessarily define a quack or conspiracist, in my opinion, but it sure serves to delineate between innocent and ill-informed quacks and truly vile and evil quacks and snake oil salesmen.

You say Burzynski is trying to play by the rules and getting "grief every step of the way," but I don't see it that way at all.  Have you read the charges against him?  He's been "studying" and "researching" this quack theory of his for 30-something years now and at least as far as I can tell, he has absolutely nothing at all to show for it (except his bank account) in the form of verifiable, peer-reviewed, reproducible results.  By the "grief" is he getting, do you mean the Texam Medical Board lawsuit and, if so, do you know of anything that could even possibly exonerate him?  Do you believe him to be ethical, honest, and competent as a medical doctor?  Would you send your mother or sister or friend to him for medical care?  Seriously?  Do you believe that with the amount of money he's brought in over the years that he couldn't provide one single shred of evidence or potential success that would be recognized by any legitimate and credible source of medical or scientific research? 

As to why anecdotes can't be used for evidence, I'll defer to this very thorough and detailed analysis of the "anecdotal" stories from Burzynski's movie.  I'd love to know how Burzynski himself would/could respond to this sort of analysis, as the facts seem so clear.

http://anaximperator.wordpress.com/2011/11/22/burzynski-the-movie-does-it-prove-the-efficacy-of-antineoplastons-against-cancer/

Beesie

althea, thank you for responding to my post. I do understand what you are saying and I do understand some of the frustration, but....

It does happen that individual cases/anecdotes sometimes provide the start for more detailed research. In fact the basis of much of medical development starts with a theory that is tried out in one situation (maybe one person, maybe 5 mice, maybe in a petri dish), then expanded to a small study (maybe more mice or maybe a human study with just 20 people) and then is expanded further to a larger study that is statistically reliable and therefore can be used to support treatment changes. Along the way there are reviews and verifications to ensure that what's said to be happening really is happening, thereby warranting a continuation to the next step in the process. I don't know the specifics of the Burzynski case, but generally when there are individual anecdotes about a treatment but no one picks it up and studies it further, in most of the cases I've read about it turns out that the individual anecdotes are either too specific to one individual case (and therefore cannot be replicated on a larger scale) or there are other factors at play that suggest the results may not be due to the treatment.  But it is not an issue that the process that is used to assess and approve new therapies and drugs precludes individual cases from being the starting point in the development.  That's simply not the case at all.

To the point about the system being money-driven, I don't agree with you that this is a fact. The U.S. system is money-driven.  Other countries' systems are not.  In countries that have government funded healthcare (which is most countries), the goal is to find the most effective, less expensive treatments. Governments are responsible for the well-being of their citizens; the best possible scenario is a situation where they are able to ensure the best possible care, denying no treatments to any of their citizens, and they are able to do it affordably.  That certainly doesn't sound like a money-driven system.  And even within the U.S., not all of the medical system is profit-driven.  What about the National Cancer Institute?  The NCI spent $631 Million on breast cancer research in 2010.  Given that this organization is government funded and non-profit, why would their research choices be driven by money? 

It is true that the pharmaceutical industry is money driven, but then so is the "natural alternatives" industry.  It's important to note however that the pharmaceutical industry is not wholly located in the U.S. and the profitability of drug companies outside of the U.S. (including the subsidiaries of U.S. companies) is nothing like it is in the U.S..  And accepting that drug companies are in business to make a profit and increase shareholder value (anyone here have any drug companies in their 401k?), how do you explain acetylsalicylic acid (aka Aspirin)?  This is one of the cheapest drugs on the market and it's sold over-the-counter in both branded and in generic form. It seems that every couple of months, a new study is released that hails a new benefit.  Why are all these studies done on such an inexpensive, readily available drug?  Why is a simple Aspirin being recommended to treat/prevent/alleviate so many conditions, when a more expensive (and more profitable) drug could be recommended instead?

If the entire industry and all medical and drug development took place in the U.S., I could understand some of the concerns about how the profit motivation might be driving the direction of the research.  But consider all the development that takes place around the world.  Here in Toronto, we have the University Health Network - considered a world-wide leader in medical research, including cancer research.  http://www.uhnresearch.ca/  What about Cancer Research UK?  What about all the studies that we see coming out of Europe (Italy seem to have a lot of cancer studies)?  In all these cases the researchers and scientists work in organizations that are not profit driven. 

I do agree with one thing that you said.  "I feel like a lot of people in this thread, and this forum in general lately, have already made up their minds about what they believe."  That was my point in my earlier post.  It seems that even when overwhelming evidence is provided to contradict something said by a proponent of alternate treatment, the evidence is ignored or dismissed out-of-hand because too many of these individuals have already made up their minds.  And that's unfortunate because that's what pushes everyone into their corners and makes the discussion so difficult and contentious.  If someone says breast cancer survival rates have not improved in 25 years and someone else provides irrefutable proof that in fact BC survival rates have improved, it's hard to continue the discussion if that information is ignored.  There might be subtleties within that data that would be very interesting to discuss but if the data is dismissed out-of-hand we are never able to get on to that discussion.  And that's why each group ends up talking only to themselves.

suzieq60

The big question to ask is "Why does Burzynski take so much money from his patients?". If he really had a cure and wanted to help people, he wouldn't rip people off.

digger

Althea states:

Surely, there must be a point where enough anecdotes add up to the kind of evidence that would satisfy anyone and everyone.  

But Althea, my question is, if you're going to use the argument that enough anecdotes should eventually equal "evidence," why does that only apply to certain kinds of anecdotes?  For instance, for every "successful" anecdote that this doctor might put forth, there are even more "unsuccessful anecdotes."  It doesn't seem reasonable, therefore, to pick and choose your anecdote according to your argument.  That's why anecdotes and nice little stories don't hold up.

cycle-path

"I've never understood, for example, why case studies, aka anecdotal accounts, are dimissed out of hand."

I don't think anecdotal are always dismissed out of hand. Not at all. When Minoxidil (Rogaine) was first developed, it was a blood pressure medication. Some users found it caused them to grow hair, and eventually this was researched and eventually the product began being used as a hair growth treatment. That's an example of anecdotal evidence being accepted, researched further, and put into use. 

"Surely, there must be a point where enough anecdotes add up to the kind of evidence that would satisfy anyone and everyone."

Absolutely not! All the Catholics I know use birth control. Possibly every Catholic known to every person reading this board is a user of birth control. Does that mean all Catholics use birth control? No, it doesn't. Nor does it mean that the majority of Catholics use birth control. It only means that the Catholics known to the people here are users of birth control. 

The only way to determine if most Catholics use birth control is to attempt to query a large and randomly-selected group of Catholics. The friends of the people who read BCO are not a random sample -- they're mostly English speakers, mostly Americans and Canadians, mostly women, and mostly middle class. Not at all random. 

"And the first few accounts should surely count as clues to warrant further investigation."

Often they do. Perhaps not the first few accounts, but after a certain number of accounts come in, often some entity is motivated to do some research to determine the validity of the anecdotal evidence. Sometimes it's found to be valid, sometimes not. 

MariannaLaFrance

Wow, Yorkiemom. My school had me send over the vaccination proof weeks before school started, because they wouldn't let my son or daughter enroll without vaccinations. That said, I live in Texas, where Governor Perry tried to legislate the HPV vaccine for girls and boys. The manufacturers of that vaccine have marketed to any audience they think they can find -- they're determined that we accept it.

Now, vaccines have been good to our general population. A lot of us might not be here if it weren't for vaccines against disease like polio, etc.  But I do have to agree that we are OVER MEDICATED in general.

I get tired of hearing family members who run off to the doc to get an antibiotic prescription for a throatache or sinus problem ... or coworkers on Chantix until they have hallucinations.  You get the drift. Instead of concentrating on maintaining a healthy lifestyle, our society directs us towards meds, meds, meds as the answer for it all.  Half the drugs that get approved here wouldn't get approved in Europe.  

 

We (USA) are basically the test guinea pigs for the world. Ever wonder why our population is so fat? Well, our food is mostly GMO. In Europe, they have very strict standards against GMO foods, especially in France.  And if you don't believe me about how fat we are, just travel anywhere outside the USA, and you will be shocked upon re-entry into this country. We (as in general population-- certainly none of you fabulous ladies) look like the fat lounger people from the movie "Wally", with our Big Gulps, cruddy food, and sweatpants.  It's a nation of gluttony, but mainly because our population hasn't learned how to eat sensibly, and we haven't been presented with healthy, natural non-GMO foods.

 

Now I am ranting. I lived in France and Italy for a number of years, so I can tell you that the Americans are a laughing stock around the world for their health and physique.... all because we consume what is put before us by food manufacturers, pharmaceutical industry, etc, etc.  

 

 

rosemary-b

thenewme

Food for thought in your link. When is a cure not a cure? When there is nothing to cure.

lalisa

Hey thenewme, thanks for turning me on to scincebasedmedicine.org what an amazing site!

thenewme

Wow, yet another victim of Burzynski's quackery.  This is just so utterly tragic and I can't understand how he's allowed to continue or how anyone can defend him.    

 A Patient You Won't Hear about From Stanislaw Burzynski or His Apologists

rosemary-b

Oh how sad. I feel so bad for her family. Nobody should lose a child.

painterly

Hi beesie,

Your comment:  If someone says breast cancer survival rates have not improved in 25 years and someone else provides irrefutable proof that in fact BC survival rates have improved........

How do I find the answer to this question i.e. by how much survival rates have improved in the last 25 years? I was looking at National Cancer Institute for the answer but couldn't find it. I saw this though:

Estimated new cases in 2012 in the U.S.:   226,870

Deaths: 39,510 

Beesie

http://seer.cancer.gov/csr/1975_2008/results_merged/sect_04_breast.pdf

See table 4.6 on page 6 and table 4.10 on page 10.

Also see table 4.15 on page 15.  One example of the data:  15 year survival for those diagnosed between 1975-1979 was 56.1%.  For those diagnosed in 1993, it is 74.1%.  Based on the continued improvement in 10 year and 5 year survival rates for those diagnosed in more recent years, it can be expected that the 15 year survival rates, and the 20 year survival rates, will continue to improve as the data becomes available. 

Note: Edited to correct typo... "1993" was incorrectly typed as "1973" 

Anonymous

These stats cover up the fact that the new technology detects cancers much smaller and years earlier than they were detected years ago. So women are not surving longer, they're being detected earlier. They are diagnosed earlier in their lives and the measuring starts earlier, mimicking extended survival.

Basically breast cancer patients survive a few months more than the 1970s due to mostly palliative drugs for Stage IV patients.

The biostatistician in my study group explained this way: Being detected earlier "just starts the clock earlier" for how long we survive.

Beesie

The stats are the stats.  They aren't covering up anything.  It's just data.

Looking at the data, one can discuss and debate and speculate on what might be causing the improvement in survival rates.  Certainly it's true that BC is being detected earlier and that does "start the clock earlier" and therefore likely leads to longer life spans after diagnosis. But how much earlier?  And how much longer life spans? 

The stats show consistent increases in survival rates over 5 years, 10 years, 15 years and 20 years. Most women diagnosed with BC who won't survive their diagnosis don't make it 15 or 20 years.  So surely the increases in those survival rates are meaningful?  15 year survival is up over 30% between '75-'79 and '93 with 18% more women surviving 15 years.  That seems like more than "breast cancer patients surviv(ing) a few months more than the 1970s due to mostly palliative drugs for Stage IV patients". 

One could have this debate, but I won't. I've learned my lesson from previous discussions that trying to have a logical and open discussion on a topic like survival rates in this thread, for someone like me who tends to believe that the medical community is not out to get us and is not full of lies and cover-ups, is simply an exercise in frustration. I posted in response to painterly's question.  Now I'm out of here.

thenewme

Beesie, you're absolutely right.  Especially when posters seem to drop in out of the blue with hearsay from unnamed and anonymous "biostatisticians" in some super secret study group, whose information is apparently too important to share (?!).

ETA - Painterly, here's another source for survival rates increasing over time, from MD Anderson.  It also has some good links for further research if you're so inclined:  Increases in Five, 10-year Survival at Every Stage of Breast Cancer Over Six Decades

Back to the topic of the thread, I wonder if anybody has heard/read any updates on the Burzynski trial? 

painterly

Thanks Beesie, Thenewme for posting stats/info on improvement in mortality rates over the past 25 years. 

thenewme

Hi Painterly,

You're welcome!