A checklist on how[ to promote alternative medicines

Teild

(Per the Skeptical Inquirer)

1) accuse the entire scientific community of being wrong

2) design poor quality experiments that are almost guaranteed to show your hypothesis is true whether it really is or not.

3) Keep using arguments that have been thoroughly discredited: (the intelligent design folks are still claiming the eye could not have evolved because it is irreducibly complex, homeopaths are still claiming homeopathy cured more patients than conventional medicine during 19^th century epidemics)

4) Write books for the general public to promote your thesis - as if public opinion could influence science.

5) Form an activist organization to promote your beliefs.

6) step outside the scientific paradigm and appeal to intuition and belief.

7) Mention the persecution of Galileo and compare yourself to him.

8) Invent a conspiracy theory (Big Pharma is suppressing the truth)

9) Claim to be a lone genius that knows more than all scientists put together.

10) Offer a treatment to the public after only the most preliminary studies have been conducted

11) Set up a website to sell products that are not backed by good evidence.

12) Refuse to admit when your hypothesis is proven wrong

FloridaLady

Ladies we have a new troll! I knew it would not last long.

Teild

Who were the "old" trolls?

lisasayers

Who needs to read the funny paper when you have posts like this!  Thanks for the laugh first thing in the morning!

barbe1958

Teild, rather than post this list on the very thread you are mocking, you could post this instead on the Humour thread.... 

idaho

Good one Barbe!  ha ha.  What is your intention with this post Tield?  Are you trying to start an argument? Are you trying to feel superior to those of us that are at the point we will try about anything to cure ourselves?  Have you ever tried any herbs or alernative methods? Do you even have cancer!!!??? By the way I know of plenty of scientists who have done # 2 themselves, AND #10  (HRT anyone?)....Tami

Teild

If there is no validity in the checklist, why are some of you getting upset?

mizbabygirl4

I really don't think it serves any purpose to call someone a troll just because they post something you disagree with (although the info could have been presented more sensitively). If you don't like it, just ignore it.

Janet 

TenderIsOurMight

I too believe it reflects poorly on the breastcancer.org discussion forum to call posters with differing opinions "trolls".

This site has a world-wide readership, and open-mindedness in all thread discussions on information pertinent to breast cancer should be encouraged, not derided. No one is perfect, but we need to make an effort at civility. 

FloridaLady

Many of you do not recognized a troll because you do not come to this section often enough.  We deal with this kind of troll regularly.  These people keep us from having a conversation that is important to us. No other place on this site does ladies feel the need to act this way and other who never read our threads jump in and feel they need to defend them.  Look at this ladies posting and see her history. All negative arugmentive postings. No history of disease is every noted. No proof they ever read or researched any of the topic under discussion.  What she posted was a direct insult to everything believe and she knew it when she posted it. So I Will post what I think about her comments just... because I can.  And I will not bow down to small minded Ostrich's. She is not the first person to insult us and I'm know she will not be the last. So I will post my thoughts on her little list of nothings.

Cancer treatment for the "ostrich" patients --- The ones who are welling to bury their head into the sand and wait to see the out come of their treatment plan and not be involved in the life or death out come of their treatment.

(Per a Stage IV patient that has proof that the medical industry has not really learned anything valuable after billions spent and fifty years of research! This is Not by an early stage patient who was blessed with good surgery and no recurrence at this time. One who also understand that the medical industry is NOT looking for a cure for us but long term treatment! $$$$$ You set the bar low and this is what you get!

Who ever said alternative was for curing all cancer?  Show me proof chemo can!

1. Many ostriches are programmed by media and researchers wanting more money to support there high paying jobs.  A powerful group that led patients to believe that we have made major advances in fifty years. Only improvement is with drugs that are for side effects of treatment so it takes longer to reach extreme toxicity for some patients. But does not control their disease any better. We can now do more chemos than before.  Oops! There is  Hercepton. One drug in fifty year. Great advancements.
2. Poorly design test between two industries that make billions off each other and Ostriches believe they can do a completely honest report on each other's findings? See the history FDA & Pharm companies. America has proven a lot of money causes total corruption. The biggest profit makers in the manufacturing industry of any kind in the world is Pharm. companies.   But wait! They only due test with very toxic drugs with less than .001% of the population and than give it to millions with only less than 10% chance of helping any one. And no one ask why we are welling to do this.  Use stage IV patients to complete very toxic trials with no proof the drugs they are using on them will help them at all. Many of these patients that are already cash poor because of treatment issues are using their own money to get into these trials that will later make the companies billions of dollars a year. 
3. Ostrich's love arguments how great mainstream cancer treatments are with zero proof that chemo or radiation can cure breast cancer.  The only thing that can truly control cancer is surgery! These same people think they are more intelligent because they are blindly led by a doctor's who they will not ask the hard questions and do the research to hold their doctor's feet to the fire about what they can actual do for them with long term treatments and results.  These same doctors will tell them there is NO cure for cancer in their little black bag. If they only ask them. But these same people demand that alternative most cure cancer to be any value. So it's ok for the medical industry to only treat and not cure but alternative most only cure? Why can't it just treat long term like chemo?
4. DO NOT give ANY documentation to the public or patients about the truth about the out come of trial data and side effects. The big joke is on patients as we never even ask for this information to be published in plain English.  They just give it to the doctor's say...try this stuff it's the only thing we have in the works. And our doctor's know they do not do their own research will go ahead administer this drug too us without questions. But since these doctors don't need proof that the drug they are giving you can actual help why should they care?  (I do believe these days are gone because of sites like this.)
5. Talk about activist organizations-please get a life on this one. Who built multi-billion dollar not-for-profits that our love ones are willing to give money too out of guilt for not getting our disease or out of fear they may get it one day.  So now we all can wear pink and by pink merchandise and have created a very expensive guilt/fear club. That less than 25% ever go to research or to help patients actively in treatment. America is blind sided that we are making a difference with this kind of bull shit!
6. Treat cancer patients with the very thing that our doctor took an oath not to do: First do no harm???? What happened here?  Throw away everything that has show to historical work as well as current treatment but less toxic and been used for over 2,000 years. Let's start all over while patients continue to die and reinvent the wheel again from the very begining.
7. Most Ostrich patients do not education themselves about how their body works and what went wrong. (not just cancer) Do not research their disease or why they are receiving a certain treatment. (Thank God for internet and now we all can get educated and demanded to know more about our treatment options for the first time in history of medicine). AND DOCTOR'S HATE IT! Why? You can show truly how little they know about cancer other than doing standard protocols!
8. Ostrich patient's do not read anything against the treatment they received until they have a recurrence and learn there is NO known treatment to get them back into long term remission.  Sorry no surgery no hope. And if you have one of the rare forms of bc you are really up the creek because it not cost effective to research smaller groups of bc patients.
9. Feel they have to be ugly to non-ostrich people who study and become more educated than some of their doctor's about our bodies and historically proven treatments that do not cost millions of dollars. We also study just as much about what conventional medicine to see what are the key factor to our disease make up. The problem is no to articles ever agree on what the factor are. Orstich say altnerative have this problem Read about any trial and wait two years and it will change. Ostrich patients will not do the research that shows science is looking at the same supplements that we are but they are tied up for ten years of paperwork and wait to see how to make a medical version that can be patented. We don't have negative feelings about ostrich patients (until they start talking down us) but some reason we can not get any respect that we continue to study and look for answers. So many live in fear because they are afraid their disease will return and can do nothing proactive about this.  We chose to believe we can make a difference and not live in fear of making a mistake that would stop what the doctor's are giving them even if they know the drugs has les than 25% chance of helping them. Ostrich patients are welling to live with the side effects left over from treatment for years and continue to take more and more drugs.  And are not welling to ask their doctor why they are not teaching them anything about preventing a recurrence or getting your body health again if this disease returns.
10. Think a study is ok that involves less than 100 people and has showed many adverse side effects... against a harmless supplement. Leading cause of cancer deaths is their treatment and side effects of treatment... not cancer.
11. Welling to take drugs with very little if any proof that a toxic drug can help them more than a few months because there is nothing else to offer them any hope. Doctor's main source of continuing education comes from Pharm reps that hit their offices weekly.
12. Refuse to admit that there is NO proven treatment for cancer in this country but surgery. Multiple research studies that show current treatment can only give a patient with a recurrence possibly five years of a toxic life span.  Willing to have a doctor totally destroy your health with treatment but do not expect him to help you rebuild the damage he did to you during treatment. Neuropathy, lymphedema, high blood pressure and cholesterol, thyroid issues, lost of mobility of arms/shoulders from surgery. This list could go on forever...

When mainstream medicine start looking at the whole body and not just the cancer cells activity we might have a chance with this disease. Again and when doctor's become more concerned about repairing what they destroy with treatment. Until that has happen we will continue to work on improving our own health.  No one turns over "everything" about their health over to a doctor but a cancer patient. Why? There is value in conventional medicine but patients must understand the truth of what they can do for them and take control of their medical treatment.  Now we have software programs that calculate recurrence risk factors.  Why?  So you can not point your finger at any doctor or industry that has made cancer so impersonal that we are now a number in a computer. Cancer most be treated on an individual bases and one size does not fits all! Where else in our life are we treated so impersonal other than our cancer treatment?  If we know so much about  breast cancer why is 90% of breast cancer treatment the same as any other cancer treatment??????? Same chemos and same radiation treatments.

*    Conventional medicine needs to admit chemo and rads will never be the cure for cancer. All forms of Breast Cancer needs an inhibitor drug that can be used long term to hold remission. Or even slow progression on disease.

• Need to look for the cause of breast cancer... not trying to do something after we get the damn disease. Or even worst have a recurrences that is only treatable with short term control.  The average chemo is only good for two to four months after recurrences. (Unless have hormone positive cancer and this can sometime to be managed long term.)
• Research all forms of breast cancer including IBC and triple negative and other rare forms.
• Look at the common factor's so many of us have been tracking ourselves that could be common factors like thyroid and B9 pelvic tumors, immune diseases. And I'm sure there are many more.
• Why can't we log on these drug companies website and post for research facts? Have a blog with direct links to drug companies that tracking side effects and problems we are having instead of relying on our doctor who may or may not be giving the drug companies follow up information on our problems.  Example Ixempra that is showing a problem with some eye disease and extremely aggressive disease recurrence? Is anyone tracking this drug?  They are starting to give this drug to early stage patients without following up on this.
• Why does it take years and years for them to decide if a supplement is Ok and a toxic drug can be approved in a just a year or two? Herbs, Vitamin and supplements have been used as medicine for thousands of years why do the last few generations of doctor have no knowledge of these valuable tools?
• All cancer clinics should have a homeopathic doctor on staff to help patients who want to use their services to complement their treatment plan. I talking about a true homeopathic not someone who does not fully understand the body use of supplements and vitamins Also you should have access to this person to help rebuild your body to a healthier state after treatment and insurance should pay for this.
• If we chose to use alternative supplements insurance should have to pay for them.  Why will they pay for hundreds of dollars for a pill that supposedly helps the thyroid for example when you can take something else that you have found to work? And it cost only $20 dollars for a bottle.  This is so true with so many things we have found alternatively that works better than more drugs. Again insurance does not want to work with us on prevention but only work with us after we have the problem.
• I can't believe with all the so called new proteins, receptors...whatever they want to call them they can not run test on patients that are in remission to see if the body is trying to rebuild cancer cells.  They now can find breast cancer cells in urine. There just have to be testing for example hormone positive ladies to test some kind of negative hormone activity.

baywatcher

FlaLady-

You said it very well. Thank you.

Mamita49

Well done, 

You really did your research.

Here in Canada, if your homeopath has a degree in Psychology as well, the insurance is paying you back 80% of your cost.

I profit of going to see this specialist every 2 weeks, with

a. tips in nutricion

b. meditation

supplements........

I pay him, get a bill for " Psychological treatment"

I send it to my insurance,

I got back 80% of it.

Great thing, and this is blue cross, ordinary group insurance.

I even got a 40.00 $ refund from my wig, since my insurance pays a part of it. 

vivre

Love Ya Fla Lady! Keep fighting for our right to voice our opinions. You have helped me so much. Thanks from the bottome of my heart.

Mamita49

I agree a 100%. more than that.

Fla Lady, you are truly great. Point....... 

Teild

FL Lady, I have no idea what alternative medicines work or don't.  I would hope some of them do.  But I also suspect that lots of people have been greviously injured by going the alternative as opposed to the conventional medicine route.  I will bet that given the tough economic times even more people will follow alternative medicine into their graves.

baywatcher

teild-

i suspect that lots of people have been grievously injured by going the conventional medicine route too. many times i see obituaries state that the person died of complications of cancer, and they were on the chemo route. lets face it, cancer sucks big time.

Husband11

I think we need to use common sense and view all claims of both the "alternative" and established medical community with some skepticism and scrutiny.

 If anyone thinks the scientific community sticks to science and not speculation and hyperbole, take a look at this article and pronouncement by the NCI.  They basically hold a position that anti-oxidants are harmful, look for evidence to back that up, fail to find evidence, and annouce their unsubstantiated position as if it were fact.   Stuff like this drives me crazy.

http://www.sciencedaily.com/releases/2008/05/080527193200.htm 

I quote from the article:

"Despite some intriguing studies that have suggested the benefit of adjunctive antioxidant treatments in cancer patients, the totality of the available evidence is equivocal at best and leaves us with serious concerns about the potential for harm," the authors write. 

 How many of the above listed sins does the NCI commit with their statement at the end of the article?

FloridaLady

Timonthy

A great point was so intriguing that this same antioxidants have been around for thousands of years?  They did not just show up over night.  This are the same herbs and supplements that many countries still rely on.  Our fore fathers only had this kind of medicine and yes it was called medicine before the Pharm companies started patenting their version of these and now the real things fell out of favor.

Teild,

Ten's of thousands of cancer patients die every year in this country.  I would say 90% are doing conventional treatment and follow it to their grave. Most of the time earlier than they have to if they knew how to protect their body from the treatment side effects.  If you were actual educated about alternative (and you admit you know NOTHING about alternatives) rarely does a patient use only alternative unless they have been give the talk of "we can't help you" and they feel the need to take control of their health.  Many of us chose to do both because we have our eyes open to the true picture of what standard conventional cancer treatment really can do for you after surgery has been completed.  We chose to know what our options are. here is a Example: Many elderly in this country want the last years to be having a life in the middle of cancer.  There is more cancer in the age over 70 than any other group.  Why would they want to send their already fragile bodies through standard treatment and have their last fews years in a very toxic state?  I think about these people and wonder where their support system is? Many can't use a computer. Because of people who make statements that they know nothing about will continue to keep many people away from being proactive and fear of these bullies who refuse to be educated and want to live a Ostriches.

Thank God we still live in a free country.  But we all most have our guard up as to making sure we keep these freedoms available too use, because of supposedly "smarter" people who think they want to protect us.

Flalady

PS Yes, there are many healthy 70+ people who do well in treatment but I've met many who chose not to have standard treatment because not all 70 years olds have the bodies in the same condition. They should have a choice.

idaho

I totally agree with you baywatcher.  THIELD:  My brother did not die of colon cancer- he died because some doctor put his port ON THE WRONG SIDE and he got infection and died.  My mother did not die from breast cancer, she got so many sores in her mouth from radiation that she starved to death.  ANother case in point is the lady on this board that said her mother did not die of breast cancer either, she died of septic shock from chemo.  ANother point- my neighbor did not die of rectal cancer, he died on the operating table.  I have many more instances if you would like to hear them.  I wish all of the above people had "followed alternative medicine into  their grave," they would probably still be here.  I miss them.   Tami

Teild

Yes we live in a free country and we can freely offer our opinions.  Breast Cancer CAN be cured if you get at it earlier enough.  What about a person, relying on the advice in this forum who decides to forgo surgery but instead chooses an herb?  Are you going to argue that she is better off even though stage ones who have their cancer completely removed via surgery may well, probably never will have a recurrence.

Teild

Idaho, you are comparing apples to oranges.  Medical Malpractice kills thousands maybe hundreds of thousands every year.  But what has that got to do with the benefits of conventional medicine versus alternative medicine?  Are you suggesting people refuse medical treatment for fear of medical malpractice?  Much better to simply ensure you are in the best of hands don't you think?

Teild

And what about adjuvent treatment.  Doesn't Tamoxifen and aromotase inhibitors have proven track records of signficantly reducing recurrences.  Do any of these alternative medicines have any proven track records or do they rely only on on anecdotal evidence and personal testimonies?  How do we really know what's good or not?  From anonymous message boards?

baywatcher

Teild-

do you work for a drug company? just wondering.

Teild

No Baywatcher.  Why is it so hard to believe that some people simply do not accept the alternative medicine claims without some kind of proof of efficacy?

baywatcher

teild-

there will never be much testing on alternative medicine because most of it cannot be patented and therefore no money to be made.

i think if you think conventional medicine is best for you, then it is a good choice for you. best of luck.

FloridaLady

If stage one patient wants to for go surgery that is her right!  No one has the right to tell her to do anything. It's called freedom of choice. If she asked me.. I would tell her to do surgery but I would not demand her to do it because I felt it was right.

Flalady

crazy4carrots

I'm a little tired of folks proclaiming that no research is being performed on alternative treatments because there is no money to be made.  Here's a couple of examples to the contrary:

Rene Caisse, a Canadian nurse, learned of a concoction of herbs and wild plants from a native Canadian, and apparently used it successfully for many cancer patients.  She would not turn over the recipe to Canadian researchers so that they could do studies on what looked like a very promising cure.  Why she wouldn't is still a mystery, because she wasn't getting rich treating her patients.  She did tell someone the ingredients before she died, but what she didn't tell them was the proportions.  Due to public pressure, a great many studies were done by scientists paid by the government, using various proportions.  None were successful -- BUT it wasn't for lack of trying.  Today, Essiac Tea is being marketed by, I guess, her heirs.  Again, scientists have examined the Tea and have done some clinical trials, but have determined it is ineffective. Although, some say it makes them feel better.  There may also be some who swear that it cured them, but there is such a thing as spontaneous remission, and no clinical proof that essiac worked.  That's a major problem with some alternative medicines.

Dr. Lillian Thompson at University of Toronto, and Dr. Paul Goss, formerly at Princess Margaret Hospital and now at Mass General, have done many studies on the potential of flaxseed in the prevention of cancer.  No money to be made by them, only the sincere hope that flax would work.  Their studies have shown that the lignans in flax are indeed beneficial -- both for breast and prostate cancers.

And finally, for those who believe that cancer researchers are interested in prolonging people's misery because there's money in it (through the sale of drugs etc.), think about Dr. Tak Mak, a world-renowned cancer researcher whose identification of the work of T-cells will probably earn him a Nobel prize.  Dr. Mak's wife died of breast cancer, and he has daughters.  Could anyone honestly believe that he doesn't want to find the answers?  He spends 20-hour days in his lab, searching for anything, ANYTHING, that will lead to a cure.

Respectfully, Linda

idaho

Thield - THAT'S WHAT I AM TRYING TO TELL YOU!  Just because you see a Dr. does not mean you are in the "best of hands".  No, I do not think people should refuse medical treatment at all, but when Dr's have done their best (or worst) I think people should have a choice to try something else.  I am a stage 1 cancer patient, I would like you to tell me how my cancer can be "CURED".  I have been begging my doctor for that info. He says all we can do is"TRY". The last I heard there was no cure that's why we are throwing millions of dollars at the pharmicutical companies- so they can find a CURE!  I am just tired of people thinking that Dr's are Gods - they are just human. Tomoxifen and other AI's also have a proven track record of making women very sick and CAUSING other cancers.  I have been following my Dr's recommendations, BUT I am also very glad there are other options out there.  How do I know what my Doctor is telling me is good or not? Sure there are studies. And every other year they change them- case in point- they are finding out now that chemo is not effective for estrogen + cancers.  I bet all those women who had chemo and then recurred wish they would have known that.  I feel that the drugs given by the medical establishment can do great good, they can also do GREAT harm.  It seems that alternative meds don't do that GREAT harm.  Just my opinion....Tami

vivre

Here we go again. worried hubby-truthseeker-blaest-etc etc will get into trouble, then lay low for a while, and change to a new ID. We will have some peace on the boards for awhile, until it comes up with a new tactic to start up another controversy. I just wish I could understand the motives of someone who comes here with no intent to help others. I wish I could understand the motives for constantly attacking someone with Stage IV, who cares enough about others to share what she has learned. It is the same story over and over with this person. Start a thread or make a comment that attacks people who are trying to look at an integrative approach, just to get a debate going. Eventually, everything escalates, the posts get more and more controversial, and the mods have to come in. For those of you who have not been around here very long, I would like to just advise you, even though your intentions are honest, do not take the bait. It is useless to try to reason with the unreasonable. There is no purpose to this thread, other than to get good people upset. Please do not feed the troll. Emotional health is very important to overall health.

idaho

Thank you Vivre.  I needed that.  I am relatively new here and did take the bait obviously.  It is just so frustrating because you don't see any one on here telling us the 10 ways the medical community gets us to believe everything they say.  I know that Doctors have done every one of the ten things THield listed.  I have learned my lesson- I will not take the bait again.  Tami

wendy57

I personally feel that I must fight this disease with every available tactic in the arsenals of both the conventional and alternative therapy.  Both my medical oncologist and my naturopathic physician have "backed-up" their prescribed therapies with research - my oncologist "quotes" the research findings, my naturopathic doctor gives me written research articles. 

I have yet to come across a medical/health care professional who has in anyway tried to dissuade me from using both methods.  On the contrary, everyone I have encountered has told me they would do the same if they were battling cancer - this includes my personal physicians, surgeons and nurses, along with the physicians, surgeons, pharmacists, nurses, and other medical professionals with whom I work with.    I think it is very telling that there is a multitude of medical professionals who would use both approaches if and when confronted with cancer, although maybe they will only admit it to another medical professional who they know is using both methods.

There is a lot of quality research evidence for many alternative therapies and much of it is readily available on the internet and also there is a wealth of research findings posted in many of the threads here.  Anecdotal evidence/case studies/testimonials are not irrelevant - actually in the Evidence Pyramid - this type of evidence is in the middle of the pyramid - above in vitro and animal research.  It is this type of evidence that physicians obtain a lot of their "professional" opinions and expertise - it is what many us have ask our physicians: "from your experience (treating patients), what would you recommend?"   Anecdotal evidence, case studies and testimonials are frequently the basis of generating hypotheses and clinical research studies.   

Dx 10/2006, IDC, 3cm, Stage IIa, Grade 3, 0/6 nodes, ER+/PR+, HER2+