Okay, some time after I posted last, I received an email response from Jo Ann Easterly. I replied to her she should post it to the web in this thread. A followup message to me indicated that she would appreciate it if I posted the email for her. In the interests of furthering the debate, I will do so. Here is Jo Ann’s email to me. Let’s see what the rest of you have to say. I apologize for the formatting.
-----Original Message-----
From: JoAnnEster@aol.com
Date: Saturday, April 15, 2000 11:56 AM
Subject: A matter of semantics!
Hello Irishman,
I am sincerely appreciative of your explanation of how things work on this
site. Your writing style and your communication skills are well noted and
some of your critics are valid from the standpoint of this message board and
its purpose. Thank you for taking the time to educate me.
May I say that the striking thing to me, being a neophite to this system, Is
the low level of trust, high level of suspicion that exists with your
members. It was intimated by JKELLER, member that "looking for a conspiracy
is fun, but hardly fruitful. I couldn’t agree more. I don’t consider what I
have learned FUN. So why are you all so convince that there is somehow a
conspiracy in all of those who offer “alternative treatments.” How can you
be so certain that ANYONE has all the accurate answers…even the AMA, The
American Cancer Society, HEALTH CARE REALITY CHECK, ETC. It’s all a matter of
semantics, in my humble opinion. Those who are skilled in language/ words
have an obvious advantage. The reason that I have not engaged in these fun
yet fruitless debates (till now) is because I have been using my energy to
find my own “truth”. How, you may wonder? By meeting and talking to people
who are living this nighmare. By doing my own research based on my personal
experience. Did you watch 20/20 this week. They apparently believe, after
their investigation, that the “bone marrow /stem cell transplants” for women
with breast cancer has been approved in this country without ANY CLINICAL
TRIALS AT ALL. Apparently, the AMA does not have to abide by the same rules
as that quack Burzynski. Why is that, irishman? I spoke to women who were
urged to do this and all sorts of horrific protocols by physicians THINKING
that they were properly tested and approved. Obviously, that is NOT THE CASE
with the bone marrow transpants that are being performed right now.
Apparently, the only study performed on bone marrow transplants came from a
M.D. from Africa who has now been formally discredited. What’s that all
about, irishman? Does 20/20 air programs without proof? Is this a conspiracy?
Am I having fun yet? For every well meaning “caveat” that I received from
your group, in this instance, I can counter with the same accusations that
were leveled at me. But THIS is not my intention. Yes, I love to debate and I
must admit that it superficially stimulated my attention AND that hasn’t
helped me one bit. Locked in this circle-jerk of dialogue is not making
people (whoever they are) accountable for what is happening to women with
breast cancer in this country. Yes, I know many people are suffering with
many types of cancer AND my focus REMAINS on women with breast cancer…no
apology. I would like to know why Donna Shalala and Jane Henney are so
ATTACHED to their worldly political powers that they have agreed to remain
silent. I wonder if they read the book by Candace Pert titled “Molecules of
Emotion”. It offers a personal accounting from an “insider” perspective on
how politics has no conscience in government and the medical community. Is
she a liar, too? I don’t know, and the truth be known, neither does anyone
else. No matter how eloquently you and I defend our positions with clever
quotes and orderly debate nothing is changing without ACTION! My plea is for
people to ban together and demand accountability for “the breast cancer
slaughter” that seems to be growing at an alarming rate. “Who has a vested
interest?” you ask. Call me myopic but have you noticed how many people are
earning their living via the “cancer industry”. What happens to the
employment statistics if cancer was cured tomorrow?
I WILL NOT allow myself to be swept into the “defeatist attitude” that their
is no hope. There is hope and it is growing stronger everyday despite the
enormous efforts to deny me "the right to choose’’ the treatment I will
accept. The mass consciousness HAS changed and I am a part of that change.
Yes, there are many charlatans out there preying on the struggles and
illnesses of others. The unscrupulous come from both sides of the
court…Coventional and Alternative. It speaks only to the corrupt nature of
our sad and pathetic society. I intend to continue to move toward the Light
with “right action” as my only motivation. I need no referrals to claim my
birhtright for I am self-referred in my decisions. It is a jungle out there
and finding truth a distracting exercise no matter where your perceptions
lie. I choose the serenity of my " inner self ". It is the only place where
truth can be found. Thank you for inspiring me to express my position. I now
know the reason I stumbled onto this message board. God Bless You! Jo Ann
Esterly
Just a few points (I’m sure others will have more).
And those who base their decisions on verefiable science have an even bigger advantage. It’s foolish in the extreme to dismiss the whole of mainstream medical science simply because one distrusts science. Obviously no one has “all the accurate answers” (except certain religions, of course :rolleyes:). But the purpose of science is to continue to seek all the accurate answers. And it does so by replicable research.
Could someone please score me a citation for this? Does 20/20 have online transcripts?
And I’m sure you know allll about their motivations, huh?
No,I haven’t. How many?
Errr, nothing.
Sheesh, next you’ll be telling us all about that great 200mpg carburetor you know about. (Hint: it’s on the shelf right between the Roswell spacecraft and the Ark of the Covenant.)
Who ever said that politics has a conscience?
Rama rama. :rolleyes:
IOW, “I believe I’m right, and nothing your foolish ‘science’ has to say will change my mind.”
Well, here I am again all suited up for battle and prepared to learn the lessons of my life! Thanks irishman for the lure…I MUST have something of significance that needs to be said. Otherwise, why am I subjecting myself to this highly scientific audience? Let me repeat the purpose of my original, ill-prepared, post. I want to find other women with breast cancer who have been denied “treatment of choice” in this country. I want us to ban together and demand accountability for this “slaughter”. I want our voices to join together in a clear, concise, and uncompromising chant that resonants around this planet,“We have had enough of the deception, the greed, the politics, the scientific rhetoric, the excuses, the pink ribbons, the walks, the fundraisers, the support groups, the well- meaning and unsuccessful non-profits.” “We demand a new direction for these resources and energies to fund research for an immediate cure NOT limited or restricted by the FDA, the AMA, by Health Care Reality Check, the American Camcer Society, the Pharmaceuticals. Why not utilize the SCIENTIFIC genius of medical researchers all over the world who are NOT in the U.S. governmental loop? Why not fund a Doctor like Stanislaws Burzynski who has illustrated the value of antineoplastons for years? To those who are eager to assault me for lack of respect for the almighty scientific community, you have misinterpreted my viewpoint. Allow me to ask each of you to humor me in my ignorance. Think back to one widely-held “scientific belief” that has been disproven/discredited. Think about those pioneers who were willing to be “crucified” to take our civilization to the next level. I thought we called this progress, evolution, right action! What would have happened if these geniuses conceded and crumbled under the pressure of “stuck” scientific beliefs, due to ignorance, threats, propaganda, corruption, or greed?” As many of you have pointed out, I could use some instruction on providing more facts. I would appreciate your help. List one “scientific fact” or “medical fact” that has been proven false or reversed in the last 50 years. This will save me time in researching and also spare me the embarrassment of making, yet, another unsubstantiated claim. Let me repeat, my intention is A Call to ACTION that will demand and inspire a new committment to CURING breast cancer. Right now, I am a woman in the United States of American who is being denied access to lifesaving alternative information and “the right to choose” my treatment. Right now, I can’t even get Dr. Burzynski to return my calls. Why? Right now women in Europe and Canada are able to receive treatment from Dr. Burzynski
Anyone up for another research project to help a struggling student? Who can name 2 or 3 medical procedures currently in use by the AMA and currently approved by the FDA that did not have to go through clinical trials or testing? I would be very interested in these facts!
Here I am again, Irishman, lured into the enchanting world of words when what I really want and NEED is Right Action. Am I wasting time or being divinely directed?
Here I am again, Irishman, lured into the enchanting world of words when what I really want and NEED is Right Action. Am I wasting time or being divinely directed?
wasting time. {well, you did ask!}
personally, i think you and like-minded people are perfectly free to band together whenever/wherever. United States, freedom of assembly, yadayadayada. {unless, of course, that wasn’t really a continuing malapropism/typo, and you actually do want to ban something (as in prohibit; make unavailable; execrate). in that case, maybe this has some applicability as a GD topic after all.} :rolleyes:
i just think you’re picking a rather non-appropos place to start your campaign. you’re much more likely to draw similiarly-minded souls to your camp by, oh, say making your own Website or something along that line. crank out those petitions, coordinate your demonstrations, print your flyers–whatever. go work the process, if you want to make things happen. i don’t see anything radical happening while you just sit and argue about it. and i think it’d take a pretty amazing level of eloquence to suddenly sweep everyone here at SD (or even just the GD section) into marching through the streets following your banner.
let’s just say, my walking shoes remain deep under the bed.
note: apologies to any who groaned upon seeing this thread do another Lazarus.
I know pretty much nothing about breast cancer treatment per se, but I have some knowledge of how drug companies and the FDA work, so to fuel some conspiracy fires…
It is true that drug companies with “established” treatments will lobby hard to prevent new or better treatments from coming on the market because they fear losing market share. This happened with many psychotropic medications, including those used for schizophrenia, and is fairly common in the pharmeceutical world. IT would be nice to think that the medical profession is continuously looking for new and better treatments, but it is much more complex than that. Like any government agency, the FDA is ultimately as susceptible to influence from big companies as any other…thus the “people being denied treatment” hypothesis is not altogether implausible. It is all about money.
Assuming that we lived in a world where our scientific community was not shackled by such supervision, how would we tell the frauds from the real healers? Because to be honest, I don’t know enough about a lot of sicknesses to know what what would be a legitimate treatment and what would not. That is why we have government regulation. It’s to protect my interests and provide a screening process by knowledgable people so that I can feel secure that the treatment I get will at least have a possibility of working. I would much rather have a few potential treatments that may work slip through the cracks, than for there to be an open season on ignorant people like myself, who are waiting to be prayed upon by “doctors” who may just be selling snake oil.
Jo Ann, there’s something else you should keep in mind, too:
Many people in this thread have called Dr. Burzynski’s cancer work questionable. This does not mean they are accusing him of deceiving the public with a cure he knows to be ineffective. It is very easy for a doctor to administer a new potential cure to a few people, see positive results, and immediately leap to the conclusion that the new potential cure caused the positive results.
Dr. Burzynski probably believes, fervently, that his cure works. But his direct experience isn’t enough to tell for sure. The only way to tell for sure if his cures really work is to have carefully controlled trials where the results can be judged without any of the many, many types of biases that can creep into ad-hoc trials. And when posts to this thread from a month ago contain quotes like this:
… I have to conclude that, if such controlled trials have been performed, the results are not promising.
Irishman, I take back the ugly things I said about you for kicking this thread back up to the top. This is perfectly fascinating. Evidently the Lord God Almighty has chosen the Straight Dope Message Board to be Jo Ann’s personal soapbox to spread the Gospel according to Dr. Burzynski. Hear, hear!
I haven’t been so enthralled since Joseph Smith came down to breakfast babbling about an angel and some golden tablets…
Eonwe, careful what you say about snake-oil peddlers. That just happens to be how I make my living.
It feels that way especially after the last three clinical trials I was involved in were scotched by the FDA. The Alzheimer’s drug had unforseen side effects, and the cancer drug is now designated as being counterindicated (that means, pretty much, that it made the disease worse in people).
Luckily, a few more trials have advanced to the clinical level, and I am back to sisty hour work weeks. It was nice to have a break for a couple of months…
“There is no such thing as an ‘alternative’ treatment (for anything). There are treatments that seem to help. There are treatments that don’t seem to help. And there are treatments whose results haven’t been proven one way or the other.”
Ah, the old “other people have been right and ignored so that means this guy must be as well.” A variant of the “they laughed at the Wright brothers” routine.
It’s not enough to be laughed at, Jo Ann. It’s not enough to say you follow in the footsteps of people who were persecuted, but right. It’s that last part that is the key – you have to be right. This guy isn’t – or at least he certainly hasn’t shown that he is. And therein lies the problem.
Anybody have any research completed. I’m getting bored with these lack-lustre/no substance responses. I’m still waiting for the “irrefutable truth” from a real genius. I don’t need to be right…I just want to have THE right to choose treatment without the intrusion of “know it all” bureacrats. I must be crazy! AND it is a sad realization that THIS forum has turned into a form of recreation for me. It is actually laughable…maybe that’s it…This is a source of humor for me at a very sad and scary time in my life. My ANGEL and I were discussing this and we agree that this is NOT about Dr.Burzyski. He’s not doing a damn thing for me either, thanks to the FDA. This is about an illusion that freedom and equality exists. This is about the illusion that “right action” can emerge from the bowels of greed and deception. This is about the illusion that there IS value in human life. This is about the illusion of confusion, sadness, and defeat where it CANNOT exist…right here on MY SOAPBOX AND IN MY MIND!
Attention researchers: What kind of studies or scientific research was done before Open-heart/Bypass surgery was approved in this country?
What is the percentage of deaths caused in this country by prescriptive medications that are FDA/Scientifically Approved? (as administered by Licensed Medical Doctors?
Where do YOU look for answers to suppport your preconceptions?
I’m still looking for ACTION!
One more thing…I really do appreciate your responses and/or comments. If nothing else, I am improving my writing skills and learning to ignore silly insults! Thanks! I guess there are some redeeming qualities at GD.
You seem to misunderstand the way these things work, Jo Ann. You are making the claim. You need to back it up. It’s not up to us to do your research for you. Where is the evidence that supports your pal the doctor? Let’s see it.
Of course, I would be amazed if you can somehow find it, since he has been unable to show it to scientists, doctors, and the FDA. Oh, wait, I forgot, he’s being repressed and persecuted. Yeah, that’s the ticket.
May I remind you that you have not responded to or acknowledged the substantial responses that have been posted? Whereas your posts have shown a disturbing lack of substance. So far you’ve claimed a cancer cure, various conspiracies, and made allegations against the medical establishment and medical practices without offering any evidence.
The simple answer to your original question is that you are being denied access to this “treatment” because there is good reason to believe it will either kill you or discourage you from seeking treatments that may work, and there is no scientific reason to believe that Burzynski’s “treatment” works. This is explained at Why Quackery Harms. This link was posted over a month ago. What is your comment? (I hope that your comment is more substantive than your previous posts).
The American Cancer Society - Antineoplastins says the treatment has been investigated and does not work. This link was posted over a month ago. Have you investigated that link? Do you have any comment on its contents? (I hope that your comment is more substantive than your previous posts).
And on a related note, here’s a Quackwatch[TM] webpage containing A Special Message for Cancer Patients Seeking “Alternative” Treatments. Among other things, it contains two of the three links posted in the previous message to this thread, and a whole bunch of links to articles about questionable cancer treatments other than Antineoplastons.
No, you need not be crazy … but do you really think it would be a good idea to not regulate medicines and medical treatment? Allow anybody to administer any therapy they can think up, for any price, to anyone to whom they can sell it?
I don’t know about Ms. Esterly, but I think it would be a great idea. Imagine…
She could post to this board, everyone here could point her to links for information saying that the treatment was unproven and probably wouldn’t work. Then, [dramatic pause] she could make a decision based on her own opinion of this information.
It is nice that everyone wants to look out for her, but it is her life. What if this treatment works, but only for a particular cancer variant that is 1 of every 1000. What if hers is that one? Who are you, or the FDA, or anyone else to evaluate risks to her life for her?
