Alternative medicine remains an ethics-free zone

thenewme

Alternative Medicine Remains An Ethics-Free Zone 

The subtitle of this article perfectly describes my feelings about so many posts I read here in this forum on BCO, and why I post many of the things I do:

"The level of misinformation about alternative medicine has reached the point where it is endangering patients."  

baywatcher

I agree!!!!!

hrf

Alternative medicine is BIG business.

AlaskaAngel

I know.  It isn't fair not to have certainty about the solution to cancer.

There's plenty of evidence that standard medicine is endangering patients too.

A.A.

Kaara

I just read the study that BCO has posted  online regarding the dangers of radiation and chemo causing heart problems and other types of cancer.  Now we are to ask our doctors about this and if it will have an effect on our treatment.  WTF!

Fortunately I decided not to do radiation for the very reason stated...I was concerned about damage to my heart and lungs, and the possibility that it could cause other cancers.  My research made it pretty clear that this could happen, and now apparently it is being confirmed.

If I elect to try an alternate treatment in lieu of some of the dangerous conventonal treatments that are being offered, I don't really think my risk is any higher, particularly if I research carefully and only do those treatments that have some proven benefit. 

Anonymous

I know Kaara, what I've been reading about the treatments I received have scared the hell out of me

Coming to a theater near you !

Medical Inc - exposing the modern medical monopoly

A visit to the doctor can be traumatic enough. Now we learn about the "influencers" - the people you never see, but whose job it is to turn you into a compliant, pill popping, revenue generation unit. And at all costs.

Medical Inc. reveals the unseen tactics of these "influencers" in an investigation that leads to the highest levels of the American Medical Association (AMA) and reveals an alarming portrait of deception and criminality. Along the way we wonder:

Is much of what we "know" about modern medicine just slick marketing from companies that profit when we're in pain (or by putting us in pain)?
Why aren't we being told about the successes of natural therapies?
Why do so many people think chiropractors are "quacks," nutritional supplements a waste of money, and acupuncture a fringe therapy?

Is it because the "Medical Monopoly" spends millions a year attacking, ridiculing, and trying to discredit these natural therapies? The answers are almost beyond belief, until Medical Inc. takes us into the courtroom with five chiropractors who, having been labeled "an unscientific cult,' fought back and won a landmark verdict.

Their heroic story forms the backdrop of one of the most personally compelling documentaries ever. Because of their bravery, the medical industrial complex is no longer blocking access to safe natural alternatives, pill popping is giving way to smarter preventative care, and purveyors of sickness are being shoved aside, resulting in a healthier life for us all.

http://www.medicalincmovie.com/Medical_Inc.html

Kadia

Sometimes I can't tell which is worse, Big Pharma, or Big Alterna. There are lots of dangers in both kinds of products, lots of greed, not enough accountability on both sides, IMO. There are also lots of great thinkers working hard to improve human health.

Kadia

On another note I get so tired of these simplistic indictments of a "pill popping culture." first, alternative treatments come in pill form too. Second, plenty of us take pills after much research and consideration because we need these medicines for our health, sanity, or even our very lives.



There is way too much victim blaming and condescension in the rhetoric of those opposing "Big Pharma," as i see it. Effective advocates know not to insult the people they presumably want to reach with their message.

Anonymous

"Effective advocates know not to insult the people they presumably want to reach with their message"

For starters, how about:

"Alternative medicine remains an ethics-free zone"

And on the Alternative Forum, may I remind you, so I guess you are not effective advocates. Why don't you start your own topics advocating BigPharma in the appropriate forums ???  

thenewme

Re: "And on the Alternative Forum, may I remind you, so I guess you are not effective advocates. Why don't you start your own topics advocating BigPharma in the appropriate forums ??? "

I started this topic, but I'm not sure where you get the "advocating BigPharma" thing.  I advocate for accurate information and dispelling misinformation, not "BigPharma."  Kadia mentioned that BigPharma and BigAlterna both have their dangers and accountability issues, which I completely agree with.  

Feel free to ignore this thread (really!), but I'm not sure why this would be inappropriate in this forum.  The title of the article this thread is about is "Alternative Medicine..."   

Anonymous

Well, I'll spell it out for you 

For instance, Tuckertwo was sensible enough to start her thread re the FDA on the appropriate forum. 

This thread you just started on this forum is only meant to provoke and wage war on those of us who post here 

thenewme

Well, Maud,

Let me spell it out for you.  

I started this thread about misinformation and ethics issues in alternative medicine in the Alternative Medicine forum, referencing an article entitled "Alternative medicine..." 

My intent is not to "provoke and wage war."   Give me a break.  Is this not a discussion board?  Are we not allowed to have opinions and discussions about the ethics of alternative medicine here? 

Again, please feel free to ignore this thread if you're offended. 

Anonymous

You are obviously stumbling on terminology

The appropriate thing to do is to give up on this thread and start it anywhere else but the alternative forum.  Those of us who post here have enough sense and respect to discuss what we do amongst ourselves and don't start threads on the regular forums

I'll spell it out one last time:  

Tuckertwo was sensible enough to not start her thread re the FDA and corruption of BigPharm on Tests, Treatments & Side Effects threads.

Your intention is only to provoke and wage war on those of us who post here

I will ignore only if and when I want to  

Mallory107

Upon my diagnosis I made the decision to use BOTH traditional and holistic medicine in the treatment and prevention of re-occurence.  I have never been the type of person to get into the holistic thing but BC really opened my eyes to the fact that this coudl be a valuable addition to all that I am doing with traditional med.  Well I have to say that my experience with 'homeopathic' medicine has been horrible.  All that I am asking for is a knowledgeable practitioner who can guide me to what will be the best supplements, diet and whatever else that will take me forward to live a more healthful and cancer-free life.  What I have found in my search is extremely odd (can't think of a better word) unkempt and socially backwards group of people that seem more interested in raking their shelves of supplements to charge me 100s of dollars for without really explaining the importance of each.  They make no effort to develop a relationship with me or show true interest in me as a patient.  Nor did they seem to have a good understanding of breast cancer treatment.  I have found this with 3 of the most popular naturopaths in my city. In my experience this field is a money-making business much like pharma.  Wish I could say differently because I believe in the possibilities...I just wish that I could find somebody that I could respect.  So for now I am piecing together the puzzle myself.

thenewme

From the article by Edzard Ernst referenced above:

"The undeniable fact, however, is that the information supplied by practitioners of alternative medicine is often incomplete, wrong or dangerously misleading to the point of seriously endangering public health and thus violating medical ethics."

I completely respect an individual's choice to pursue alternative medicine.  IMHO, it becomes a problem when we see these types of "incomplete, wrong, or dangerously misleading" posts here that have the potential to endanger the health of breast cancer patients who come here to BCO for information. 

Anonymous

Mallory, I could and I have complained about my onc and my endo, all prima donnas IMO

If you are looking for a qualified practitioner, I refer you to Tuckers thread :

http://community.breastcancer.org/forum/79/topic/784260?page=1#idx_17 

Mallory107

Thanks Maud- I did do that the other day and found none in Pittsburgh.  I am considering trying the closest one which is in Cleveland-not too far from me.  I would just like to see this as a bigger and more organized field of medicine,,,hopefully this is the direction that it is headed.  There is so much value in it in my opinion but it will not reach its full potential unless it positions itself for the 'mainstream' and not just people who are naturally into that kind of thing.  It will never get the platform it deserves if it is run like I have experienced it.  Just my opinion.

K-Lo

Spelling it out: i-t. It. )

thenewme

K-Lo,

Hehehe!

crazy4carrots

Members read these alternative threads for various reasons, and thankfully, the threads aren't restricted to only those who practice alternative or holistic treatment.

My niece's BFF has just had surgery to remove DCIS.  Her onc is recommending radiation and then arimidex.  She's going to follow onc's advice about rads (I didn't have rads, and I'm glad I didn't, so I'm not offering her ANY advice on that), but she's read all the possible SEs of Arimidex and is so worried  (she's a young 52).  She's asking me about alternative, complementary and holistic tx. 

I know, from what I've read on this forum or on sites recommended by posters here, that I couldn't/wouldn't give her any info about alternatives to the AI, simply because I've seen nothing to convince me that anything would work better.  I don't put all my faith in the AI to keep away a recurrence (that would be dumb!) but I take it simply to better my odds, according to the scientific literature.

I can, however, offer her some advice on complementary methods that did, or didn't, work for me to combat the SEs of Femara.  Much of that advice was gleaned from BCO posters.

Thenewme states that these are "discussion boards" and she's absolutely right.  Those who would try to shove her off for posting something which is contrary to what they personally believe are being unfair, and untrue, to the reason these discussion boards exist.  The hyperbole of her wanting to "wage war" is just so, so over the top. 

Anonymous

You're citing Edzard Ernst ....lol 

"Edzard Ernst, the Quack Professor, retires defeated!

.....the £2 million he secured from Maurice Laing by pretending he was going to be fair and even-handed about CM? He claimed he wasn't going to be "critical" or pro-CAM when he started out, but open-minded.

After a while it became apparent that he was actually an anti-CAM zealot, and now nobody really wants to fund that project because anti-CAM zealots are really in quite a small minority. Nobody, that is, except perhaps drug companies but of course if they've ever provided any funding to Ernst's project in the past they would have taken careful steps to make sure no-one noticed, and they wouldn't want to fund it now because Ernst got a bit carried away and no longer has the sort of credibility he enjoyed for a while.

Has Ernst been beating around the bush in his previous assessments of alternative therapies then? Outspoken, eh? Yeah, you do that, Ernst. You become "really outspoken". I've been saying you were a wolf in sheep's clothing for years.

Here's the rope: you hang yourself, pal. The fact is you were never bright enough to quit while you were ahead, and now the only people who have any time for you at all are the other mindless zealots who don't know anything about CAM therapies anyway, and that's why you really lost your job - it has nothing to do with Prince Charles. Academics in the U.K. are not there by Royal Appointment, are they? And the Royal Family don't have the power or influence to remove any of them either - what planet are you on?

Nobody wanted to fund your little misinformation game any longer, and your University got sick of your unacademic, self-publicising media antics, as they were bound to in the end.

Go to America, where I'm sure there'll be a cushy job for you. Take the PharmaDollar, and stop posing as an objective scientist. You're a joke."

http://www.truthwillout.co.uk/2011/07/edzard-ernst-the-quack-professor-retires-defeated/ 

dogsandjogs

I refused rads for the same reasons (as well as the statistics for women over 70 showing very little difference in recurrance rates)

I think we all have to our own research. I don't trust anyone completely when money is the bottom line.

Anonymous

K-lo, don't get carried away now and spell " t-it " )

K-Lo

ooo maud, it took me a minute to get it.     tit.   boob,   knocker.......

thenewme

An ad hominem ... short for argumentum ad hominem, is an attempt to negate the truth of a claim by pointing out a negative characteristic or belief of the person supporting it.  Ad hominem reasoning is normally described as a logical fallacy. (Source:Wikipedia)

"The ad hominem is attractive to lazy thinkers."  (Source:Skepdic.com)

dlb823

I think there's a lot of truth in the article thenewme shared, but I just don't believe alternative vs. conventional is as black & white as some paint it.  There are valuable protocols within each, and bad practitioners within each.   I've personally had good and bad experiences with both.  No doubt putting trust in a worthless alternative therapy is horrible, especially when your life is at stake, as it often is with bc or any type of cancer.  But IMO incompetent and unqualified conventional docs, who may be harder to recognize, can be equally dangerous.  Plus I think much of the research behind conventional drugs is very skewed, their net benefits are greatly exaggerated and their SEs are not fully disclosed.  

I also believe that the mind is a powerful thing, and that sometimes faith in whichever txs you choose plays more of a role than we realize.   Deanna

Kadia

Deanna, I agree with much of what you post. I use complementary approaches that are supported by research and when I am able to feel confident in the quality of the treatment (pureness of the supplement, skill of the practitioner, etc.). And I do think SEs are too often downplayed, or even covered up, by pharma companies and their complex.

Unfortunately, there is so little regulation and accountability in the alternative/complementary world. Adulterated products, expensive protocols, "cures" and treatments promised on little to no evidence. I have been told before "caveat emptor," and sure there's some truth to that, but the companies peddling products are held to almost nonexistant standards--and make major profit. I wish so much there were more funding and study of folk remedies to see what the actual mechanism of action, efficacy, and safety is!

The amount of simplification and misinformation I find in some "alternative" circles is just mind-boggling (as is blind faith in the FDA and pharmaceutical companies, which I see in other circles). The baby (effective treatment) gets thrown out with the bathwater ("Anything from Big Pharma is bad) over and over again, and I think it's just silly. As noted above, nothing is so black and white.

A for the comment about effective advocacy, as noted, I didn't start or title this thread. Provocative though the title may be, it has sparked some intelligent conversation. I guess one could try to make the same claim about the "pill popper" label, but all that did for me was to piss me off and shut me down. 

Anonymous

Profile of author of article in OP, from the Guardian(UK) Newspaper - leading paper in the UK.

http://www.guardian.co.uk/profile/edzardernst

Edzard Ernst is a prize-winning physician and the founder of two medical journals. He was the first chair in complementary medicine at the University of Exeter and is co-author of Trick or Treatment? Alternative Medicine on Trial

I don't agree with everything he says in the article, I have found many homeopathic treatments to be very effective, expecially in treating allergies, and Arnic Gel for bruises.  But certainly respect his "credentials" to address this subject.

dlb823

Kadia, your points are well taken.  There are a lot of shady and downright bogus things that come under the general umbrella of "alternatives."   (The sludge-producing foot bath thing I once tried comes to mind (LOL), as does the local compounding pharmacist who sold me Dr. Lee's book that recommends progesterone cream, and assured me he could cure my bc with that and the alkaline water he sells!)  And Sunflowers, I also read and was impressed by the profile you pulled up on Dr. Ernst.  But as renown as some medical docs are, they can still be sadly lacking when it comes to any knowledge of nutrition, for example, and often poo-poo even what I now consider healthy eating as a paranoid and unnecessary "alternative."  In fact, there was a recent article somewhere (sorry, I can't recall the pub, but seem to think it was quasi-medical) on how weird some of us are who eschew meat and/or dairy products.  Not sure where I'm going with this, except to say that, while I don't disagree that ridiculous alternative practices and claims need to be regulated, who's going to do it wisely if those who are blatantly across-the-board critical of it are largely uninformed about much of it?    Deanna

PS ~ When I read the OP article yesterday, I pulled up ScienceDaily and found several research studies that showed a benefit to acupuncture.  There were also a couple that concluded it doesn't have value for whatever use it was being evaluated for.   And yet this is the photo used in the article to depict "alternatives," so would lead one to believe that acupuncture, which is a pretty well-established therapy, is worthless or unethical.  

Anonymous

Good point Deanna, especially in the case of Edzard Ernst who is now known to be a "skeptic"

Halloween Science

Ernst: "I never completed any courses."

In short, it appears that the leading ‘authority' on homeopathy, and perhaps its most referenced critic, has no qualifications in homeopathy.

This will not come as a surprise to anyone who has read William Alderson's Halloween Science, the detailed critique of Ernst and Simon Singh's Trick or Treatment? In his discussion of the chapter on homeopathy Alderson concludes that:

"it destroys entirely Ernst and Singh's credibility as a reliable source of information about at least one of the therapies they discuss in detail, and this renders highly questionable their reliability as a source of information about all the other therapies."

Alderson also claims that Trick or Treatment? shows Ernst to be unreliable as a researcher into homeopathy. He outlines 11 mistakes which can arise from ignorance of the principles of homeopathy, and which can seriously affect the reliability of randomised controlled trials and meta-analyses of homeopathy. None of these are mentioned by Ernst and Singh.

"What is unforgivable in two ‘trained scientists' (p. 3) is they have not considered the implications of these issues in respect of the validity of trials. They do not even refer to any of them when they present two trials to illustrate that individualisation does not guarantee the success of homeopathy."
Ernst's failure to take these issues seriously is confirmed by the interview, when he is asked:

"Do you see fundamental problems with double-blind studies for individualised methods?"
Ernst: "No."

This failure is also confirmed by looking at the protocol of a trial of Arnica he specifically mentions in his career details. In this trial approximately one third of the patients were given Arnica 30c and another third Arnica 6c, and "Tablets were to be taken three times daily for seven days preoperatively and fourteen days postoperatively." Not only did this mean that treatment was not individualised, but patients were taking medicine for a week before the operation when there was nothing to treat. Such a procedure will have unpredictable effects, and is anathema to homeopathic principles and prescribing practice.

http://www.nationalcenterforhomeopathy.org/content/edzard-ernst-critic-of-homeopathy-exposed

"Halloween Science" by William Anderson

http://jphma.org/About_homoe/Alderson_Halloween Science 2009.pdf

Kadia

"skeptic" is not a dirty word.