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Aftermath: Will the “alternative health movement” learn anything from Jess Ainscough’s death?

It’s been a rather…interesting…weekend.

Friday, I noted the death of Jess Ainscough, a.k.a. “The Wellness Warrior,” a young Australian woman who was unfortunate enough to develop epithelioid sarcoma, a rare cancer, at the age of 22. I’ve been blogging about her because after her doctors tried isolated limb perfusion with chemotherapy in an attempt to avoid an amputation of her left arm at the shoulder, her tumor recurred, after which she chose not to undergo amputation and instead to embrace the quackery known as Gerson therapy, which she did for over two years. By the time she finished her Gerson therapy, she had become a celebrity Down Under, a frequent media fixture advocating “natural” health and a raw vegan lifestyle, fawned over by a credulous press. When her mother developed breast cancer, she, too, used Gerson therapy, resulting in her death. That’s when I first encountered her.

In any event, in December, Ainscough admitted that her health was deteriorating, and on February 26, she died. My post about her death provoked far more of a reaction than I had thought it would. When I wrote about Jess Ainscough’s tragic death, I expected that maybe a few of her fans wouldn’t be happy. What I didn’t expect is that hordes of her fans would infest the comments section, and I certainly had no inkling that the post would become one of my highest traffic posts of all time, if not the highest traffic post of all time (which it very well might end up being).

So it’s with a little trepidation that I write this follow up. However, I felt the need when I saw an incoming link from a post entitled What The Alternative Health Community Must Learn From Jess Ainscough by Laura Schoenfeld, MPH, RD. After emphasizing in bold letters that this is “not an attack on Jess as a person, her character, her motivations, or her beliefs,” apparently having learned from my post that no matter how polite and civil one tries to be writing about Ainscough’s story and ultimate demise will nonetheless provoke nasty reactions from some of the Wellness Warrior’s fans, Schoenfeld goes on to say that her post is about something that’s been bothering her, the use of what she refers to as “persuasive marketing to promote diet and lifestyle choices that are purported to cure a person from any disease or health related concern.” (I’m half tempted right here to ask: Is there any other kind of marketing?) In any case, she observes:

There’s a fine line between an attention-grabbing title and a title that makes people feel fear, and sometimes that line depends on the person who is reading the article. It’s a slippery slope that is difficult to maneuver in the world of online marketing. But it’s one where we absolutely must tread carefully.

Unfortunately, as more and more health “experts” enter the world of online health education, these tactics are employed more regularly and misleadingly than ever. Whether that tactic be fear or false hope, there is a lot of health information being promoted online that is not only inaccurate but potentially dangerous for certain peoples’ health. (And sometimes the inaccuracy comes from omission rather than outright falsification.)

I see it all the time in my nutrition practice where people believe that things they’ve learned about online like a super strict, “clean” diet or alternative “therapies” will make all their health problems go away, and it’s not working for them. Sometimes they’re actually worsening their health by faithfully following well-marketed online health gurus’ advice.

The first thing you need to know is that Schoenfeld runs a website called Ancestralize Me. Her business is nutritional counseling, and she appears to believe in a form of “paleo diet” to address various health concerns, including:

  • Digestive Disorders
  • IBS/IBD
  • Fertility and Pregnancy
  • Autoimmune Disease
  • Thyroid Disorders
  • Hormonal Health
  • Amenorrhea
  • High/Low Blood Pressure
  • Adrenal Fatigue
  • Blood Sugar Control
  • Acne and Skin Conditions
  • Weight Issues
  • Child and Family Nutrition
  • Blenderized Tube Feeds

True, she does say that if you have a chronic health problem that hasn’t been addressed by a physician or naturopath you should do that first. Her mentioning a naturopath, given that naturopathy is a veritable cornucopia of quackery that includes The One Quackery To Rule Them All, homeopathy, is not a good sign, nor is her mention of adrenal fatigue, which is not a real diagnosis. Indeed, the public education arm of the Endocrine Society, representing 14,000 endocrinologists said as much. To be fair, I feel obligated to point out that the woo component on Schoenfeld’s website appears lower than many nutritionists associated with the “alternative health community” promoting various “paleo diets” usually demonstrate, but it must be pointed out that there is at least a little woo there.

Which brings me back to what Schoenfeld thinks the “alternative health community” should learn from the death of Jess Ainscough. At the risk of being too snarky and having another horde come down and attack me, my response to that question would be that the “alternative health community” should learn that there’s no such thing as “alternative” health, medicine, or diet. There are three kinds of medicine: Medicine that’s been shown by science to work, medicine that hasn’t been shown to work, and medicine that’s been shown not to work. The vast majority of “alternative medicine” belongs to the latter two categories. The same is true of the vast majority of diets for health promoted in the “alternative health community.” What Jess Ainscough’s case teaches us is that there really should be no such thing as “alternative medicine” or “alternative health.” There really shouldn’t.

As for marketing, “alternative health” sites live and die by “persuasive marketing.” Testimonials are stock in trade, particularly cancer cure testimonials like, yes, Jess Ainscough’s. I note that she didn’t actually make an attempt to deny that she was claiming that the Gerson therapy had brought her cancer under control until about a year ago, when it was becoming apparent to even her fans that it hadn’t. Yes, she believed it, but that’s what made her so effective. She believed, and she was good at making others believe her too.

So let’s see what lessons Schoenfeld thinks the “alternative health community” should take away. First, there’s this:

The first is, as consumers of health information online, we need to be far more critical about what we’re reading when it comes to health and wellness recommendations, and take everything we read with a grain of salt.

Persuasive marketing techniques can be powerful in communicating a message, and when that message is “do this and you’ll achieve perfect health”, it’s an incredibly dangerous one. I’ve seen multiple patients with eating disorders that developed from following the online advice they read, which caused fear and paranoia around a food as simple as a banana.

OK, this is a good lesson. It’s also highly naive to think that this lesson will be learned by a significant number of people in the “alternative health community.” Here’s the problem. Because “alternative health” claims and alternative medicine consist primarily of medicine that has either not been shown to work or shown not to work, credulity is built in. Claims are made, but they are not made for readers to be skeptical of, as they’re almost always supported not with valid scientific evidence but rather with a combination of testimonials, cherry-picked studies, and conspiracy mongering against “big pharma.” The reason is simple. “Alternative health” practitioners rarely have evidence that passes scientific muster to support their claims. Either that, or they vastly exaggerate what diet and various “alternative” treatments can accomplish.

Schoenfeld warns:

Or that maybe conventional treatment like medication or surgery really is your best option, and it shouldn’t be discounted simply because it’s not “natural.” This includes everything from (medically appropriate) statins and thyroid medication, to amputation and corrective surgeries.

This is why working with a licensed medical professional (or two!) is important when trying to make decisions about your health. You shouldn’t be trying to do this alone using advice given from a health blogger with a weekend-long certification course under their belt, or from a PhD who has never worked with a single patient before.

There are hundreds of ancestral-health minded practitioners who can help guide you through the good and the bad advice you’ve been exposed to online, and to get you on a health protocol that is tailored to your unique and individual needs.

This, unfortunately, is the trap of “integrative medicine,” which claims to “integrate” alternative medicine with conventional medicine. Just having a physician involved in these decisions is no guarantee that the advice won’t be dangerous. Look at Stanislaw Burzynski. Look at Rashid Buttar. Look at Mark Geier. Look at Meyer Eisenstein. Look at Jack Wolfson. I could go on and on and on naming doctors who offer dangerous quackery.

Let me repeat that again: Working with a licensed health professional is no guarantee that the advice given will science-based if that health professional is a naturopath, a chiropractor, or another “alternative practitioner” or if that health professional happens to be a practitioner of “integrative” medicine. In fact, such “alternative” or “integrative” doctors tend to reinforce what the patient already wants to believe. There’s a bias, in which patients interested in “alternative health” will seek out and eventually find health care practitioners who will provide them with what they want, and those practitioners tend not to be particularly evidence- or science-based.

Schoenfeld’s next lesson is just as naive:

The second thing we need to learn as health communicators, whether we have our own blog or we are simply sharing information with friends and family, that we need to be forthcoming about our experience with the strategies we are recommending, good or bad.

While there is a lot of pressure on those of us who present ourselves as health experts to look perfect and have perfect health, the reality is that no one has perfect health, and often times the stress of running a business designed to help others with their health can cause it’s own problems for our health.

And:

Again, this is where conventional medicine like drugs or surgery may be helpful when diet and lifestyle are not enough. And it may even mean letting go of the idea that we have complete control over our health and physical wellbeing. Because for as much influence as we have in our health, nobody has complete control over what happens to their bodies.

Jess’s death has brought this issue to a head for me, and I felt compelled to share my thoughts on the problem I’ve been seeing more and more in the online alternative health community. We need to be mindful of the information we consume as well as that which we share with others, and make sure we are not painting a picture of our health advice being more successful than it truly is.

Give up the idea that we have complete control over our health and physical well being? Seriously? That’s the very concept that’s at the heart of alternative medicine, so much so that I’ve called it the central dogma of alternative medicine, and when you start questioning it you will not encounter a friendly reaction in the “alternative health” community.

If the “alternative health community” were to learn from Jess Ainscough’s the two lessons Schoenfeld wants it to learn, to really take those lessons to heart, it wouldn’t be the alternative health community much longer. That’s exactly why it won’t learn anything. Indeed, my prediction is that it will make excuses and turn on her for not having believed enough, done Gerson therapy correctly, or hewed closely enough to her “Wellness Warrior” raw vegan diet.

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

173 replies on “Aftermath: Will the “alternative health movement” learn anything from Jess Ainscough’s death?”

I have to say I know little about the medical community or the alternative health community, however I do feel that your posts on Jessica seem cruel and unnecessary. I read a few and get the feeling that anyone who doesn’t agree in what you believe in believes merely in quackery. I know if I had cancer I would want the best of both worlds giving the best chance of survival. I don’t ever recall Jess saying that anyone should not take on conventional medicine rather that this was her choice and it was how Jess herself decided to take on her journey. I see Jess as an inspiration in a world where fast processed packaged food is a way of life. I know also you can delete this or put me down for my lack of knowledge but not one of us get out of this life alive.
Not all of us survive but it is how we walk through the journey that matters and the lovely Jessica did so with dignity and grace.
Let her legacy of health and wellness live on for the believers.

I don’t think you should ‘ease off’ too much here Orac, nor give the impression you regret your post in any way. Whatever her vociferous fanbase believes, your entry on ‘Wellness Warrior’s death was sensitive and respectful. Much more important; it was also unflinchingly factual.

To give the pedagogue too much credit just gives the impression they have power; that if they scream enough noisy outrage they will drown out your voice. I hope – and after nearly ten years of enjoying your articles am pretty sure! – this will not happen.

Aftermath: Will the “alternative health movement” learn anything from Jess Ainscough’s death?

Orac knows the answer in NO. This is because alternative medicine is largely an oppositional movement- it is opposed to anything “mainstream and conventional” even when, or liekly despite the fact, it has been proven to work. That is why many oppose even “natural” treatments such as vitamin K or even folic acid in pregnancy. It is why they will reject vaccines, while simultaneosly claiming that all mainsteam medicine wants to do is “create customers” or “treat the symptoms, not the underlying disease.”

Alternative medicine is concerned with outcomes. It is concerned with protecting the ego and sense of indepence of its practitioners. Like soldiers in a war, some people are willing to die for their beliefs.

I too was startled by this sentence:

And it may even mean letting go of the idea that we have complete control over our health and physical wellbeing.

I hadn’t appreciated how strong the control-freak element is in alt-med circles.

An actual grownup will realize that there are some things that are truly beyond anyone’s control — including their own.

Yow, they’re coming right out of the gate .(@1). Cruel and unnecessary? Please.

get the feeling that anyone who doesn’t agree in what you believe in believes merely in quackery.

Yeah. Orac is, actually, deeply, deeply expert in cancer therapy, from the front lines of surgery through the biology of cancer. He’s remarkably evenhanded, I’ve found, but also calls things as he sees them.

The more I read these comments, the more I’m reminded of the three premises put forth by the great Charles Pierce, in his fine book Idiot America:

The three Great Premises of Idiot America:
· Any theory is valid if it sells books, soaks up ratings, or otherwise moves units
· Anything can be true if someone says it loudly enough
· Fact is that which enough people believe. Truth is determined by how fervently they believe it.

If for one moment we consider what her fanbase believe – as expressed through their posts here – it seems they truly desire no criticism whatsoever of ‘Wellness Warrior’. It seems even simply repeating her widely broadcast opinions and views is unacceptable. Even letting her words speak for themselves when contrasted against the true outcome of her illness is ‘cruel’.

So… What exactly? What would be the right way to record and comment on her death? Express sympathy for her family? Done. Express sadness at the event itself? Done. Give absolutely no criticism of her public life and image at all, ever? Sorry. No. That cannot and should not be done.

I don’t ever recall Jess saying that anyone should not take on conventional medicine rather that this was her choice and it was how Jess herself decided to take on her journey.

I don’t know how people keep missing the fact that Jess went beyond “her choice” and “her journey.” She did interviews, sold books, promoting “her journey” as something that cured her cancer. http://mobile.abc.net.au/news/2010-04-07/33482

I am sorry she died, nobody should suffer like that. And good for her for autonomy. But she denied others autonomy after she fell prey to Gershon and proceeded to make a living off selling lies even after it became clear that maybe her cancer was advancing. She may have advised people to make their own decisions, but she also provided plenty of false hope that hers was a medically valid one.

I don’t think you should ‘ease off’ too much here Orac, nor give the impression you regret your post in any way. Whatever her vociferous fanbase believes, your entry on ‘Wellness Warrior’s death was sensitive and respectful. Much more important; it was also unflinchingly factual.

I’m not backing off. I was just expressing amazement at the attention my previous post received. When I wrote it I didn’t expect anything like the level of attention it got.

In actuality, I think the “alternative health community,” in particular a group of quacks, egged Jess on and took advantage of her. Now that she’s dead, they’re doing their best to distance themselves. In essence, they used her and now that she is no longer of any use are making excuses and trying to make sure anything embarrassing she’s said goes down the old memory hole.

By Post Author

we need to be forthcoming about our experience with the strategies we are recommending, good or bad

I’d like to live in that world, too. But as Richard Feynman noted, it’s easier to fool yourself than to fool anybody else. A point which Kruger and Dunning later demonstrated. A few people will start down the path to woo and realize their mistake. Many more will never understand that it was a mistake.

In actuality, I think the “alternative health community,” in particular a group of quacks, egged Jess on and took advantage of her. Now that she’s dead, they’re doing their best to distance themselves.

Too true Orac! That started the moment someone commented she had not been doing ‘the orthodox Gerson’ in response her last post in December. It suddenly became her fault.

That is what makes the indignant moral-panic about criticism so tragic from her fans. The real culprits have already cynically scuttled away and her supportors are soon going to find themselves alone.

I certainly won’t be holding my breath for proponents of the “Alternative Health Movement” to step back & cogitate on the implications of the death of Jessica Ainscough (or the plight of those like her) either.

Was her death a tragedy? Of course. I feel the deepest sympathy for her remaining family.

As countless others commented over the weekend, though, of course her body was hers to do with as she pleased. I still don’t quite get how so many of her supporters & other concern trolls failed to discern that skeptical people could believe in “her right to choose her own path rather than ‘Big Bad Pharma'” (etc, etc) and simultaneously disagree with her promulgation of unproven quackery, for profit, to a worldwide audience. It makes no difference how “sincerely” one believes in quasi-medical nonsense if they are promoting it to thousands of people, the majority of whom they never meet or lay eyes on, without having first thought of the possible consequences.

I personally found Friday’s blog to be respectful yet objective. It was clearly not written for grieving family to read. I find it rather strange that no venue was left open either on Ms. Ainscough’s blog or FB account for her friends & acolytes to leave messages of condolences. I am sorry for the sh!t-storm Orac has been subjected to over the weekend, with some extreme comments coming from, er, “both?” sides… I don’t imagine you will be cowed by such vitriol – but I would like to reiterate that I hope you never are.

In reading the comments on Friday’s post (I now see there are another 200 or so since I last read it) it seems this was the first time any of those commenters have moved into the deep end of the pool (i.e. science-based), and have no concept of what constitutes evidence-based arguments.

Not only can’t they make evidence-based arguments, they don’t either don’t recognize an evidence-based arguments when they read it, or they don’t recognize how much more valid it is than their baseless opinion.

This also means they don’t recognize how their opinion has been completely dismantled; nor do they recognize their opinion was invalid from the start due to the logical fallacies they worked into it.

It was people like this that inspired Kruger and Dunning’s work. I know comments like this are old news, but when reading a whole slew of them at once in the same place about the same subject, it just struck me anew how ill-equipped they are in critical thinking skills in an evidence-based environment.

@ Michelle

I read a few and get the feeling that anyone who doesn’t agree in what you believe in believes merely in quackery.

It’s not just a competition of opinions and beliefs, Michelle.
It’s about which beliefs are supported by facts, and which aren’t.

If you ask nicely, Orac’s hospital can provide you with how many people came to the oncology service with such-and-such cancer, and which proportion of them are still alive 5 or 10 years later.

With the people we call quacks, we keep asking, and only hear back (if at all) of some people who were still alive a few years after treatment. No idea how many were treated but didn’t survive. I’m not implying “killed by the treatment”; what I want to know is the success rate. Did this alt-med stuff worked 9 times out of 10, 5 times, 1 time? Details are lacking.
Worse, in some cases, like this Gerson treatment, there have been clinical trials testing them. And the results were consistently negative.

Every day, there are wonderful news from scientifics, doctors, engineers, even laypeople about some advance in one field or another. We are sending probes in space to explore planets and comets, there are companies building giant robots or dorsal jetpacks, we are finding natural molecules with therapeutic effects in the weirdest places… Show me it works, and I have no trouble “believing” in it.
But if the evidence that something is working is absent or worse, evidence exists it’s not working, I would, like Orac call it quackery.

My life is my own choice, right? I can do whatever I want with my body, can’t I? So I assume none of Jess’ apologists would mind if I chose to end my life by blowing myself up in a middle of a busy street in their city?

Orac, re your post #9:

“I’m not backing off. I was just expressing amazement at the attention my previous post received. When I wrote it I didn’t expect anything like the level of attention it got.”

I think part of the reason it attracted so much attention was because Jess Ainscough’s websites were all shut down and all the people who would normally have gone to those outlets to express their grief were denied the association with like minded followers.

I think very likely when they did web searches trying to find info about her death and your blog came up top or nearly so, and they they went to it and found your rather less than admiring comments, a lot of people probably kind of exploded, or imploded, or something. I really wish her family had left at least one of her websites up for her fanbase to congregate at.

When I was diagnosed with cancer a number of years ago, I was taken aback at the appallingly, ignorant perceptions of people who espoused “alternative medicine”. I was deluged with people advising me to avoid conventional treatment at all costs and, instead, advised to drink wheatgrass juice, have regular coffee enemas, take laetrile, embrace ayurvedic medicine, and follow an alkaline diet. I was , also, told that I had to remove any- and all amalgam fillings (I don’t have any), as well as any root canals (ditto), as these, “undoubtedly”, contributed to my cancer, but it was imperative that I find a dentist who would remove these “poisonous” teeth without crossing the meridian lines. Detoxifying my liver was a must; so, too, was cupping (cupping? Wait, that thang barbers did in the Middle Ages to blister the skin? Apparently!), reike, candling, chelation therapy, and acupuncture. And, for gawd’s sake! I had to stop having a flu shot. All of these things, I was assured, would cure my cancer without the need to subject my body to the “barbaric cut, poison and burn” that my doctor was going to recommend. If I went the conventional route, I was told, I was sure to die because somebody’s aunt’s cousin’s, brother’s, best friend’s niece went this route and died, but their uncle’s, friend’s, sister’s daughter went “alternative” and thrived.
This, of course, just touches on the surface of what I encountered over the course of my own cancer treatment. I won’t even get into the ridiculousness of the BIG PHARMA conspiracy theories and the people who believe them as that would take too much time. However, what disturbed me the most (and, believe you me, the thought of “cupping” as a genuine treatment for cancer disturbed me greatly!) was not only the completely non-critical, means by which supporters of alternative medicine accepted their beliefs, but by the irrational- and disjointed thinking they used to advocate for it. For me, it was unbelievable that people in this day-and age would believe in such rot. But, heaven help us! If it appears on the internet then it must be TRUE!!!! It has led me to the sad acceptance that ignorance, mass hysteria or, as my dear late grandmother would say, “… the lunatics are running the asylum…” is permeates our current healthcare system. (And before someone accuses me of insensitivity towards people with mental illness, let me reveal that I have personal experience with the condition, as well.)
I found orac after a friend sent me a link to his famous “coffee enema” blog. I laughed until I cried, but – in some ways – it was laughter through tears. Yes, he poked fun at the whole coffee enema regimen of Gerson, but it also highlighted the complete and utter ridiculousness of using a coffee enema for “wellness”. I found that I was not the only one out there (and, for a while it seemed I was) that found the whole alternative movement appalling and the people who advocated for it more so. I, also, found out that there were others, like me, growing increasingly concerned at the growing influence of the movement, the treacherous encouragement of those advocating for it, and those despicable people who make millions from it and the deeply vulnerable people who go to it as a last resort.
I continue to read orac because I agree that we need to continue to “out” various alternative therapies for what they are. Or rather for what they are not: they are not based in any kind of science; they are not based in any kind of reality; they are not based, even, in the natural world in their complete negation of basic biology, chemistry, and botany. At best, they are harmless belief systems; at worst, they kill. Does someone have the right to follow an alternative path. Absolutely. Do they have the right to influence others to do so? Absolutely not.

I’m not sure that the “alternative health movement” as a whole will learn anything from this lady’s tragic death. There are too many hard core believers and too many commercial interests to see it shut down completely over a single event.
The best we can hope is that it opens a few more eyes here and there and steers a few more vulnerable individuals away from a dangerous and misleading path. The high profile that Friday’s post has gotten along with the informed and measured posts of the pro-science folk versus the vitriolic randomness of the alt meds should go a long way to achieving this.

I’m not surprised by the response to that last post. In fact, it is EXACTLY the same thing that Amy Tuteur hears/sees when she posts a story about a homebirth death.

MASSIVE response with a bunch of parachuters, with standard tone trolling, claiming
1) It’s mean spirited, to attack a victim like this
2) It’s too soon (although her responses are usually at least a week or more after the fact because she works hard to verify as many facts as possible; it just supports the objection of when is it long enough?)
3) The family is grieving, leave them alone (because posting on a personal blog is somehow affecting the family’s mourning)
4) Babies die in hospitals, too (like “people who do chemo die, too”)
5) You’re just part of Big Pharma
6) It’s a personal choice and everyone has a right to choose

These are all displayed in the comments to the last post. However, one additional comment that Amy gets that I haven’t seen here that I can remember is

7) You don’t have the author’s permission to talk about the story.

This would be if people were claiming that you didn’t have Ainscough’s permission to use her comments from her posts.

But other than that, this is exactly what happens over at her blog.

Orac, I really wish you and Amy would bury the friggin hatchet and realize that you have far, far, FAR more in common than the petty differences between you. Recently she’s even been fighting the anti-vax nuts. She’s not as effective at it as you are, but she’s going after them, and getting visits from the big anti-vax trolls. You really need to start working together and supporting each other more.

(and I’ve told her the same thing)

I said the below not too long ago, but it’s applicable here, too, as regards commentary on Jess Ainscough:

There are no heroes, no martyrs, no saints.

Insofar as Ainscough’s public persona and the material she chose to promote propagates the acceptance of useless and/or harmful quackery (coffee enemas, really!), that persona and those choices merit criticism.

They merited criticism a year ago, two months ago, the day she died, the day after, and so on.

In actuality, I think the “alternative health community,” in particular a group of quacks, egged Jess on and took advantage of her. Now that she’s dead, they’re doing their best to distance themselves.

This always happens with quacks. Whether it’s Burzynski’s “success” stories or HIV denalists who suddenly die from something that looks suspiciously like AIDS, once the poster child passes away there’s a concerted effort by the charlatans to wash their hands of them. It’s appalling.

And to be clear, Jess Ainscough is not blameless in this, despite the tragedy or her passing. Spin to the contrary by her supporters/paid spokespeople, she did misrepresent herself as someone who had beaten cancer (or at least one thriving with cancer) using natural methods. It was the primary reason she had “credibility” within that community and why people bought her books or paid to hear her speak, and people should not kid themselves otherwise.

“This always happens with quacks. Whether it’s Burzynski’s “success” stories or HIV denalists who suddenly die from something that looks suspiciously like AIDS, once the poster child passes away there’s a concerted effort by the charlatans to wash their hands of them. It’s appalling.”

Too right, a-non. A dead person is not much of an advert for a wonder treatment so the sooner they are removed from the picture, as far as some quacks go, the better. Too many people have been manipulated to death by purveyors of magic therapies. What Orac said on Friday needed saying.

As for where blame lies, that’s harder to pin down. There was a comment about control earlier. I’d like to add the “You can have it all” attitude. The idea that anyone can achieve anything usually doesn’t mention the important bit: “You can have it all but you have to work damn hard to get it.” Alternative medicine promises a short cut to wellness.

“You’re being mean” is always the final retort of a failed movement.

Yvette #4, you do alternative medicine a grave disservice. It IS concerned with outcomes – as long as you assume that the outcome is fleecing the gullible and desperate as efficiently and comprehensively as possible.

@Fragmeister #23

Alternative medicine does promise a short cut to wellness, but the funny thing is that often times it really isn’t any easier that the conventional method.

Take Gerson for example. From what I can gather, it’s a pretty time consuming exercise to follow that regimen. And while I grant you it may not have the same short-term side effects as a round of chemotherapy, in the long run it seems like an awful lot more work to wellness. Even getting beyond cancer – most of the alt-med dietary plans I see, for example, are often more restrictive and difficult to deal with than any plan I’ve been given by a doctor or a nutritionist who works with one.

So in some ways, I think the opposite is true. By making their programs difficult and time consuming (while still making grandiose promises), the alt-medders can actually *become* your life. And that makes it all the easy for them to make you a devoted follower.

@a-non: Not to mention the isolation from the rest of the world caused by following the time-consuming treatment. A large number of these comments seem to suggest that Gerson’s supporters have no idea how the world operates anymore.

What really stands out to me in reading the posts the past few days on Ms Ainscough’s passing, is how SO MANY people equate ANY level of criticism as appalling and arrogant.

For those holding that belief, do you REALLY think that it is proper to declare any and all criticism of her actions despicable?

This argument is rooted in a begging of the question, in assuming that what Ms Ainscough was promoting is valid and useful.

Sit back for moment. Presume for a moment she was wrong. If she is wrong, should we simply ignore that she has encouraged others down the same wrong path?

All of this rage over criticism of Ms Ainscough seems very religous and cult like. How dare anyone criticize ‘the One’. It’s eerily similar to those who demand that everyone blaspheming Mohammed needs to shut up. It’s anti-intellectualism.

So if anyone reading this finds themselves in that camp, I implore you to sit back and evaluate things. Those of us here who champion SBM are human too. We have relatives and children and friends we love and care about and we don’t want them being harmed by disproven and ineffective ideas. We aren’t pharma shills. We all want the most effective treatments for the most people possible.

It’s a scary thought, getting a limb amputated, but honestly, I think I like the idea of cutting out a cancer better than doing the Gerson Protocol. At least cutting off the limb would end the thing and I could go get on with my life. Plus, of course, it’d *work*.

I think it’s very sad that Ainscough was taken advantage of by quacks. It resulted in her death and her mother’s death, and now they are trying to distance themselves from what is to them a failure, becuase they never cared about her. They cared about her marketing potential. They’re exploiters in the truest sense of the word.

I think it is the media manipulation that really sticks in my craw.

‘Oh, you think the MedicoPharma complex doesn’t make money?’

Yes, it does. But we can all see the bonafides, the concrete results and judge for ourselves. ‘Wellness Warrior’ didn’t offer her followers the same courtesy. Until the announcement of her ridiculously labelled ‘healing hibernation’ the majority of them believed the various nostrums she peddled and promoted had at the very least arrested her disease.

Yes. There have also been cases where evil PharmaCo has fudged the results for financial gain. But they are in the colossal minority. Moreover, the wider data of all drugs, all interventions are available for anyone to read, to learn the terms and judge for themselves in cold technical language.

‘Wellness Warrior’ was a young and strikingly beautiful woman, she was personally charismatic and spoke publicly very well indeed – even about the inevitably embarrassing realities that attend Gerson. She did not win adherents by proving facts to their rational minds but appealing to their emotions. And at some point she must have realized, simply MUST have come to the horrible conclusion that all her arcane tomfoolery was doing nothing whatsoever to help her illness. Yet… Did she change her tone? Did she become an evangelist for sanity in the short time she had left? Did she attempt to lead the cancer victims among her followers away from self destruction and back towards something that might give them a chance at survival? She did not. Even in her last post she was using meaningless, facetious terms and championing the same old worthless quackery.

THAT is just something I cannot get over. I cannot even understand it,

Alternative medicine does promise a short cut to wellness, but the funny thing is that often times it really isn’t any easier that the conventional method.

Ben Goldacre has touched on this – the idea that the current understanding of nutrition and a generally healthy diet is pretty straightforward, and it’s the quacks who pile on the excessive complication…

Reading all of the comments on the last post was very educational for me. But not all in a good way, I suppose.
I have been dating someone for the last 7-8 months that is anti-gmo, anti-big pharma, etc. and until the last week or so I had been just ignoring that part since we get along otherwise. But, I finally had to make a comment last week when she was almost crying because she could not buy her crackers without soy, gluten, etc. I started trying to explain to her that what she had been told about those things was not correct and she sent me an article by Mercola of all people. After 4 days of going back and forth and me hearing her repeat all the woo arguments I was reading on the last thread, ignoring the science-based responses and such, I have come to the conclusion that I just am not going to be able to get through to her. Bummer, I am going to have to just let go of this relationship and try again.

I feel that the lesson alternative medicine and it’s fan club should learn is bess expressed by
http://xkcd.com/836/

Money quote –

I find courage where I can, but I take my weapons from science. Because they work, bitches.

If there was an Official Cartoon of SBM, I’d think that that one would make the short list.

I read Ms Schoenfeld’s article yesterday and found I generally agreed with what was said. She said people need to be absolutely honest in reporting their observations, and that is good advice for anyone. What she neglected to say was that it is very difficult to get useful results with a small sample size and no repetition – which is what personal testimonial comes down to. The alternative medicine community would do better not to rely on these.

I didn’t say that I necessarily disagreed with Schoenfeld’s points. I just found them to be wishful thinking. The “alternative health community” will not learn either of the two lessons she hopes it will. And, as you point out (and so did I), alternative practitioners rely on confirmation bias-prone testimonials to sell their wares. That’s not going to change any time soon.

By Post Author

Regarding the angry responses to your previous post on Jess Ainscough’s death:

If someone is killed while playing Russian roulette and you say, “Folks, putting a gun to your head and pulling the trigger is a bad idea”, would people say “He was a kind soul and how dare you disrespect his memory by telling people not to play Russian roulette?

If someone is killed while playing Russian roulette and you say, “Folks, putting a gun to your head and pulling the trigger is a bad idea”, would people say “He was a kind soul and how dare you disrespect his memory by telling people not to play Russian roulette?

Let’s grab a more realistic example even.

Suppose someone dies in a drunk driving car accident, and you say, “Hey folks, don’t drink and drive!”

How many people would counter with, “Please let the family grieve in peace and not say bad things about drinking and driving”?

If MADD were to use it as an example of what happens when people drink and drive, do folks flood their websites complaining about how sober people die in car accidents, too?

@15 reminds me of a quote from the British TV series that birthed Orac: ” It is considered ill-mannered to kill your friends while committing suicide.”

I’m a cancer patient who’s been alive and thriving for the past six years thanks to my doctors and their proven, conventional treatments.

I’m beginning to bristle at the alt-med crowd’s stigmatization of cancer patients. According to them I’m some sort of freak. According to them I’m doomed and too stupid to realize my doctors are disfiguring me and poisoning me.

Get real. You see cancer patients who are doing well with conventional treatment every time you go to the store, or a restaurant, or a movie. We look like we’re ordinary people living ordinary lives because that’s what we are. You won’t know we have cancer unless we tell you.

If someone is killed while playing Russian roulette and you say, “Folks, putting a gun to your head and pulling the trigger is a bad idea”, would people say “He was a kind soul and how dare you disrespect his memory by telling people not to play Russian roulette?

Given what’s been said here, I believe there are people who would. They’d also say, “you don’t know what inner demons drove him to that” or “he was suicided by the CIA” or “he may have pulled the trigger but Big Pharma provided the bullet” or “what are you, against the Constitution?” or “it is wrong to speak ill of the dead.”

@a-non:

Alternative medicine does promise a short cut to wellness, but the funny thing is that often times it really isn’t any easier that the conventional method.

Some of that could be a side effect of ‘people don’t value what they can get for free’. Make it more difficult and/or expensive, require some effort to actually do it, and people will tend to assume that it MUST work because of what they’re being charged for it. It also adds to the investment of personal image, in that if they’re wrong, they’ve wasted a whole lot of money as well.

“You’re being mean” is always the final retort of a failed movement.

Very close, but I to get the full flavour of fail it needs to be “Your being mean”.

@jenora feuer #42

Some of that could be a side effect of ‘people don’t value what they can get for free’. Make it more difficult and/or expensive, require some effort to actually do it, and people will tend to assume that it MUST work because of what they’re being charged for it. It also adds to the investment of personal image, in that if they’re wrong, they’ve wasted a whole lot of money as well.

You’re sort of describing commitment bias, where people will make increasingly illogical decisions to justify a previous commitment. Seems like it’s the type of behavior often exhibited by those who end up dabbling in woo.

When that guy who crusaded against motorcycle helmet laws died of head injuries suffered in a motorcycle crash, it was insensitive and mean to react by saying that helmet laws are a good thing.

I mean, it was his choice, they should have let the family grieve, and besides, motorcycle riders wearing helmets die in crashes all the time.

Very close, but I to get the full flavour of fail it needs to be “Your being meen”.

FTFY

With all due respect to Dave & MM, My I believe that should read “YOUR BEING MEEN”

You’re sort of describing commitment bias,

I knew there had to be a name for it.

Actually, my first exposure to the first part of my previous comment (that people often value more what they paid more for) was from a children’s book, of all things: Henry Reed, Inc., written in 1958. They’re selling turtles, and Heny’s ‘business partner’ puts different prices on the different turtles because some people want to feel like they’ve got a good deal, and some people will just assume that the more expensive ones are worth more and want to get the best.

My earliest exposures to the concepts of cognitive biases and critical thinking came from reading the Henry Reed books and the Great Brain books over thirty years ago.

Seems like it’s the type of behavior often exhibited by those who end up dabbling in woo.

Or buying high-maintenance pets.

@ Jenora Feurer:

There’s SB research on that phenomenon through attribution theory. I can’t recall any names but it might be worth a look around articles hat detail attribution.

Yes, yes, and yes. And the part about challenging them is sooooooo spot on. For a group that wants people to ‘question’ everything, they sure as hell don’t like it when question their protocols.

This woman LIED. She outrighted defrauded people as cancer withered her arm. She hid her lesions so she could continue to get wealthy. She lied about what was causing her arm to deform when people confronted her in it.

She traded her life for four years of fame and fortune, watched her own mother die as a result of this snakeoil, led thousands of others away from effective treatment by knowingly lying to them, and we are supposed to be kind and “respect her decision”?

She is a shining example of what happens when people buy into conspiracy theory Big Pharm nonsense, and bad science.

People die because of this crap. Too many die needlessly.

“…those of us who present ourselves as health experts…”

I find that people who refer to themselves as experts rarely are. Certainly orac is an expert on cancer but I don’t recall him ever explicitly saying that. I also think it’s funny that she said “present ourselves as health experts” as opposed to “are health experts.”

At first I thought good for Ms. Schoenfeld; at least she’s calling for reasonable changes. The more I think about it the more I think I fell for the trap she set. Has she stopped peddling her particular brand of woo? Nope. But now she appears reasonable and seemingly distanced from the dangerous quacks (is there any other kind of quack?). Really I think Ms. Schoenfeld’s article is a terribly insidious exploitation of a young woman’s death in an attempt to improve her own image.

Also, my last comment (#38) was in reference to Johnny @33 not MO @34. It was the title text from that xkcd comic.

I’ll never understand those who want to relive the Paleolithic days. They all died by their mid thirties.

I have a problem with this sentence:

“I note that she didn’t actually make an attempt to deny that she was claiming that the Gerson therapy had brought her cancer under control until about a year ago, ”

Written that way, it could be read that the Gerson therapy did bring her cancer under control until about a year ago. A better way of phrasing it would have been:

I note that she didn’t actually make an attempt to deny that she was claiming, until about a year ago, that the Gerson therapy had brought her cancer under control ”

The rest of the blog, of course, is 100% spot-on, including your pessimism about whether the alternative medicine crowd will allow anything to penetrate the solid bone many of them use for heads.

“This woman LIED. She outrighted defrauded people as cancer withered her arm. She hid her lesions so she could continue to get wealthy. She lied about what was causing her arm to deform when people confronted her in it.”

Spot on. The picture at the top of this article is a perfect example of it. A carefully orchestrated shot of her looking healthy and happy, surrounded by nice possessions and a happy pet implying all is well.

And yet her left arm is nowhere to be seen. And just to be clear, I am not besmirching her for being happy or having nice things. It’s the intentional misrepresentation.

To elaborate on my previous comment:

The first is, as consumers of health information online, we need to be far more critical about what we’re reading when it comes to health and wellness recommendations, and take everything we read with a grain of salt.

No, no, no. First, you need to stop the false advertising. Not persuasive, but false. Lies. Schoenfeld included. As Orac noted, adrenal fatigue is a quack diagnosis. She’s as much of a con artist as the other alties she’s criticizing. Sure it would be great if more people took a more critical approach to evaluating what they read but the real problem are the liars like Schoenfeld who peddle quackery as real medicine.

The second thing we need to learn as health communicators, whether we have our own blog or we are simply sharing information with friends and family, that we need to be forthcoming about our experience with the strategies we are recommending, good or bad.

Again, no. We need to practice based on evidence, not personal experiences. This is sidestepping the real issue. What alties need to do is not present negative anecdotes along with their positive ones; but to stop relying on them altogether and present evidence instead.

I hate having to be the one to tell them that their diet may not be enough to change their health, and that certain health problems cannot be entirely solved by adherence to a strict diet and lifestyle protocol.

Emphasis mine. This is a very weasel wordy statement. may not implies there’s a chance it could, entirely implies that they can be at least partially solved.

This includes everything from (medically appropriate) statins and thyroid medication, to amputation and corrective surgeries.

Medically appropriate here seems like another weasel statement to me. Why does statin use have to be qualified? Does Schoenfeld think she knows better than the AHA as to what is medically appropriate? Seems like an appeal to the Big Pharma conspiracies.

There are hundreds of ancestral-health minded practitioners who can help guide you through the good and the bad advice you’ve been exposed to online, and to get you on a health protocol that is tailored to your unique and individual needs. (Check out PrimalDocs.com or PaleoPhysiciansNetwork.com for a list in your area.) Don’t try to do all of this on your own without at least one other objective opinion.

Of course PrimalDocs.com is an objective source. Le sigh. What really gets me is that Schoenfeld uses Jess’ death to paint herself as reasonable and promote her particular brand of bullshit all well sidestepping and drawing attention away from the real issue of the lack of evidence supporting alternative treatments as safe and effective.

The quacks have both a financial and emotional investment in their delusions, with minds rusted shut to the possibility that they could be wrong. It was the recognition of, and because of muddled human thinking, that the scientific method was developed.

Orac, I think the reason you’ve been inundated with comments from defenders of Jess is the fact that because her “team” so swiftly and thoroughly removed her blog/FB/Twitter/Pinterest from the net, when her name is Googled, your post comes up high /or first in results.

People are probably Googling her name, wondering where her bkog/FB have gone.

I felt profound sadness when she died. I am also angry that the deception continued until the end, although the cracks had started to appear in her last blog post.

Even 2 days before she died, her team were telling people who enquired on FB, that she was doing well, and would be back blogging soon with wonderful new ideas.

I have to agree about with “Marry Me” about Dr. Amy Tuteur. That comparison was spot on. Your posts are a lot more informative science wise-but hers are perfectly designed for the lay people she targets. Your posts have made me laugh out loud, while hers inflame me with a righteous anger. But she is doing a heck of an important job out there. She (for lack of a better term) trolls and exposes nonstop, all the while keeping up to date on the latest developments in the ob world. She is excellent at parsing statistics and medical situations for the average Joe (Jane) out there. I rarely comment on either board (the other posts are so good I don’t feel the need to) and spend a lot of time learning. It would be great if the “hatchet” were buried.

Orac I’m sad to say I think the answer to your question is “no”. Where do you even start responding to this?
http://www.tarabliss.com.au/jess-ainscough/

Sorry if the link does not work.
I hope more of us get , including Jess’ followers keep reading and thinking about what you have written, and I know for more than one of us – having that information out there saves lives.

The ole confirmation-bias – if the witch be bound and floats, the water was pure and repelled the evil spirit, she was indeed a witch. If she sank and drowned, yes, indeed she was innocent.

Maybe the alternative health movement has fungus in their breads?? or they have all-natural organic free-range neurosyphillis.

The quacks have both a financial and emotional investment in their delusions, with minds rusted shut to the possibility that they could be wrong.

The dangerous thing is that it isn’t only the quacks who feel this way. Many of the people who subscribe to quack treatments have that same investment. Victims of a con man often don’t want to believe they have been conned. That’s one of the things that has let Burzynski and his ilk stay in business, and it applies equally to the fans of Ms. Ainscough who wandered over here to complain about Orac’s previous post. We all like to think that our intelligence, like that of Lake Woebegone’s children, is above average, and most humans are quite good at ignoring evidence to the contrary.

This may not be relevant, but the “complete control of our own bodies” remark kind of made me think about myself. I am an avid cave and wreck diver, and I have quite a bit of experience with technical climbing. However, I cannot even imagine bungie jumping. I do not have a natural fear of heights, and I know perfectly well that my risk of death is hundreds of times higher cave diving than bungie jumping ever is. But it is about perception of control. I go down into a cave feeling that if something happens, it will be because I made a mistake. If I do a bungie jump, I am trusting my life to a person I do not know and gear that is unfamiliar to me. I know that in terms of actual risk, I am deluding myself to some extent. But there you go.

#1 Michelle:

I believe you mean well, but some of us living with chronic disease, including some “Western Medicine” (the medicine that currently exists) has nothing to offer for would differ.

We’d put the message in much stronger terms, perhaps thinking less about Jessica’s tragic circumstance (she certainly did not invite or deserve the onset of a rare, often fatal disease), and more about the deceptions of quack-ternative medicine. Why? Because even if medicine is weak or incompetent to deal with the disease we have, wasting time and money on quackery which does at best nothing and quite likely makes matters worse sets us back further.

Quackery has a very sophisticated marketing campaign and can be seductive; there are enough forms of it that one matching something you or I could fall for most likely exists.

Gerson, which Jessica fell for and later promoted herself using the deception that it was working, isn’t merely harmless quackery, it’s a brand of crazy designed to punish you for being sick and make your remaining time on Earth miserable while insuring that any chance of cure you did have is discarded. It isn’t natural, healthy, or even harmless. Adherence to it sealed Jessica’s fate and will do the same to the next person in her predicament.

It’s like giving the last advisory to a non-Mulsim multiculuralist about to wander into ISiS territory: A few mild words to the effect of “Well, it’s your choice, but did you know that camels smell bad?” is not a compassionate tack.

Looking at the picture at the top of this thread has got me thinking, I really want a French Bulldog.

I’m very skeptical of alternative medicine, but I think this article is very stupid because it commits the same error as the promoters of A.M. so often do…. draw conclusions from a single incident. Nobody can say with any certainty that amputation would have saved this woman’s life. Her death proves absolutely noting about the effectiveness of neither mainstream medicine, nor alternative medicine.

#56 Realist
“I’ll never understand those who want to relive the Paleolithic days.”

They’re thinking of Paleolithic as a full scale “50,000 years BC”, with Raquel Welch being fixed at age 24.

Karl, nobody can say amputation would have saved her, you are right. And if you’d paid attention, you’d see that Orac acknowledged that. What we do know is that the alt med she kept claiming was curing her was doing nothing of the sort. Her death proves nothing, as it’s an isolated N of 1, but it’s a very potent cautionary tale to illustrate the extensive science we have that *does* prove that Gerson’s is completely worthless.

Karl:

That’s the fallacy of the excluded middle. Jess Ainscough had another reasonable option: keep her arm, and live her life more or less as she had been before the diagnosis for as long as possible, helped by palliative care as appropriate. At minimum, that would have given her two years to actually work, travel, party, or otherwise enjoy life, instead of being effectively homebound by the Gerson protocol. Doing absolutely nothing for or about her cancer would have been better for her than the regime of coffee enemas and constant juicing.

Is there any reason to think she would have died sooner if she had spent her time eating junk food and partying a lot? Aside from the risk of a drunk driving accident, that is.

It would have probably been a lot more fun.

Yes, they will; monetizing human suffering pays dividends. They already know that; but these tragic circumstances of a woman in her prime HAVING HER FUCKING ARM ROTTING OFF will reinforce their commitment to brand identity.

I try to keep up with the comment threads here, but don’t have time to comment as much as I used to.
But, I’d like to put in my 2 cents worth with two points.

1. I doubt if 99% of the alt med advocates will change a thing after Jess’s death. But, I think there are a few like Schoenfeld who will think seriously about how their ideas and recommendations mesh with science based treatment for serious diseases and perhaps modify their approach as a result. From my reading of her blog, it seems that she is considering doing that.
And if I can do so without descending into tone troll territory, I think it would help the cause of science based medicine for us to take a different approach with those like Schoenfeld than we do with the full-on anti-scientific advocates like Buttar, Clement, Burzinski, etc. and their facilitators like Oz, Adams, Null and their like.

Polite words won’t change their actions one whit, but raising the full-on science and nothing but science flag when we engage with people like Schoenfeld may have the negative effect of driving away potential allies.

2. I don’t think diet and nutrition get enough support in the standard medical care system in the U.S. I’m old enough to be on medicare now and the only time I was specifically referred for detailing training and follow-up was the last year of my Air Force service when I was placed on a plan to lose weight. That training relied mainly on the American Diabetes Association’s recommendations and, with some updates, has helped me lose a lot of weight in the last 4 years. But, after my wife’s heart attack 3 years ago, she was referred for physical therapy and put on an exercise program which she has continued on her own with good results. But, for diet and nutrition she got some printed handouts and a one-time speech at the therapy location.

I encourage the many of you who are currently engaged in medical practice to correct me.
But, I think too often diet and nutrition, although science-based, can fall through the cracks in our medical system. And this leaves the patient on their own in trying to distinguish between strictly science-based recommendations, mostly science-based with a few flaky aspects such as Schoenfeld makes, and the readily available mixture of confusing and contradictory BS that can be found at dozens of health food or nutrition centers, is all over the internet, and is most of the “medical” content on broadcast TV.

I came across your two articles, very insightful, having had cancer, surgeries, blah blah blah.
I found it refreshing to read a piece of reason.
so far as I know there is no cure, just remission and removal.
it pains me to read all the alternative health people just ignore facts.
just the idea of promoting panaceas, gets me upset.
but you know what, people will never change, there will always be a set that buys into the snake oil.
anyway good piece.

I do not have a natural fear of heights, and I know perfectly well that my risk of death is hundreds of times higher cave diving than bungie jumping ever is. But it is about perception of control.

I think that’s the point of bungee jumping. The whole Nutty Putty story also kind of stuck in my head, in the sense of Oh, G-d, why did you remind me of that?

Where do you even start responding to this?

What was the ABV of the kombucha?

I think you should do an article on a person who has died even though they have received chemo. I know of many of my family members who have died from cancer despite the fact that they went with mainstream medicine. And I also know a friend who went off mainstream medicine to treat her Grand mal seizures and was told she wouldn’t live without the mainstream medicine. 30 years later, she is living and she is without seizures, however, lives with migraines. I think people should heal themselves through any means they choose without having to be condemned by anyone. There are many doctors or quacks that are good and bad regardless of mainstream or unconventional methods of medicine. I don’t think it was a wise decision to burn witches at the stake do you?

Search for the names “Patrick Swayze” and “Farrah Fawcett” in the search box of this blog.

Oh, and I wrote quite a bit about Steve Jobs, too.

Seriously, you just leap to conclusions, don’t you?

By Post Author

Karl Bjornsson #70

Wrong, the surgeon and oncologist will look at the data and tell her the facts. From this site http://www.bonetumor.org/tumors-fibrous-tissue/epithelioid-sarcoma ”The local recurrence rate is approximately 35% and the rate of distant metastasis is about 40%, with the regional lymph nodes and lungs being the most common metastatic sites. Metastasis to regional lymph nodes occurs in 25% of cases. Five and ten year survival is 70% and 42%. Prognosis depends on various factors, chiefly the sex of the patient, the depth of the tumor, the number of mitotic figures, and the presence or absence of hemorrhage, necrosis, and vascular invasion. Moreover, tumors in the distal extremities have a more favorable prognosis than those in the trunk and proximal portions of the limbs.”

Gerson therapy won’t help anyone and is pure quackery. In her case it seems that having her arm amputated would have been the best way to increase her long term survival

@SelenaWolf #17
About this :

Do they have the right to influence others to do so? Absolutely not.

Hum, if their messages aren’t overtly commercial, methinks they have the “right” (freedom of expression and all that)
However, do we have the right to severely criticize these messages ? Hell yeah !

Vicki at #78:

VERY true. The misery that these quakeries cause is a factor not considered enough in my opinion. The focus is usually on the ‘not getting real medical attention’ part. Orac mentions them in passing and they often come up as a very brief rejoinder in some discussions but I think they should be the real focus much more often.

Just think how miserable she must have been day after day after day. Eating such a massively proscribed diet and then the enemas… I cannot even begin to imagine how horrible that must have been.

Chemotherapy genuinely scares me. I pray to my own deity – dangerous thing to say in skeptical circles I know! – that I never need it. Nausea and vertigo are something i have hated, dreaded since I was a child. I cannot imagine repeated rounds of chemo and the terrible side effects lasting for months at a time. BUT. If you are in that condition then at least you can console yourself it is all towards a purpose and you are measurably improving your chances to keep on living.

In contrast, flogging yourself with YEARS of disgusting, bitter vegetable juices at every meal and inserting a rubber hose… No. The two don’t compare.

‘Wellness Warrior’ could have done so much more, genuine, positive good for both herself and others by perhaps working with an actual medical charity. Or even using her obvious social and business acumen to raise awareness of cancer and its treatment. Instead she did… nothing. Nothing that helped anyone, except perhaps her ego in a transitory way There is another tragedy of her case.

Apologies – that should have been Vicki at #73!!!

I REALLY wish this comment had a proper threaded and hierarchical replying system. I cannot even find a help page for ‘scienceblogs.com’ that describes how to do italics and quote earlier posts. Am I missing something?

The overall contribution of curative and adjuvant cytotoxic chemotherapy to 5-year survival in adults was estimated to be 2.3% in Australia and 2.1% in the USA.
CONCLUSION:
As the 5-year relative survival rate for cancer in Australia is now over 60%, it is clear that cytotoxic chemotherapy only makes a minor contribution to cancer survival. To justify the continued funding and availability of drugs used in cytotoxic chemotherapy, a rigorous evaluation of the cost-effectiveness and impact on quality of life is urgently required.

Comment in
Clin Oncol (R Coll Radiol). 2005 Jun;17(4):294.
PMID:
15630849
[PubMed – indexed for MEDLINE]

I cannot even find a help page for ‘scienceblogs.com’ that describes how to do italics and quote earlier posts. Am I missing something?

Welcome to the internet. You have to use basic HTML tags.

Gemman Aster:

Italics are done by <i>italics</i>, which produces italics.

Quoting is done by <blockquote>quoted</blockquote>, which produces

quoted

.
So just standard HTML. You have to manually copy the text you want to quote.

How come so many of the recent influx of posters have many relatives and friends who have died using conventional medicine? I don’t know a single person, personally, with cancer. Yet these people are surrounded by it, everywhere they look people are dropping like flies from chemotherapy. Except all their other acquaintances who appear to live a life skipping through the flowers whilst supping sprout smoothies.

I wonder if alt med enthusiasts are actually disease vectors of some kind?

Everybody I know who has died has died while using conventional medicine. But that’s becuase when you’re dying you’re probably gonna try and do something about it, and that won’t always be successful. (MInd you, two of them died in hospice care; the conventional medicine they were using was limited to painkillers to ease the process.) I think that’s a pretty common circumstance, so I think it’s perhaps unsurprising that sometimes people will become angry with the medicine for failing to save their loved ones. Grief distorts your thinking, and for people unlucky enough to live in a cancer-plagued family, it may become very difficult to be rational about it. Ripe prey for quacks.

A paternal aunt of mine died of a very aggressive breast cancer in her early 20s despite conventional treatment that may actually have tried a little too hard. (Her case is part of why that side of the family is big on right-to-die causes.) My godmother (who is related on the same side of the family), however, survived lumpectomy and chemo and has been cancer free for I think at least five years now. I have lost both of my grandparents, but one of them was complications from a fractured pelvis, and the other was . . . unknown, but he was convinced it was pancreatic cancer. He was a general surgeon, and at 91, felt that getting a biopsy would’ve been purely academic and ultimately a waste of time; he decided to go into hospice and medicate with only liquid morphine, high balls, and Dos Equis. I wanna go out like him. 😀 Though maybe with more wine.

Well, if it happens to me, I hope I can face it with as much dignity as it sounds like your grandfather showed.

“Orac, I think the reason you’ve been inundated with comments from defenders of Jess is the fact that because her “team” so swiftly and thoroughly removed her blog/FB/Twitter/Pinterest from the net, when her name is Googled, your post comes up high /or first in results.”

This brings up a question: for those people who joined in on the last comments section to blast Orac, why aren’t they blasting the people who rushed in to scrub Jess’ various website entries of information that, according to them, is lifesaving. Their actions suggest they thought that info was an embarrassment rather than helpful.

Gemman Aster @89

When the message start coming in thick and fast, I wish everyone (including Orac) would put the number of the message they are replying to somewhere in their post. When there are only 30 posts, it’s not a big deal, but when it gets above 100, it’s a little difficult to keep track of what’s being replied to. Unlike Gemman Aster, though, threaded messages, phooey! 🙂

The problem with that is that there are a lot of newbies whose comments have to be approved, which changes the numbering every time I go in and moderate comments. (First time commenters go to automatic moderation.)

By Post Author

Rats! Oh, well, that’s what happens when you are the first listing on a Google search. And the second.

Orac’s reply addressing Jacqueline van ‘t Hull’s comment succinctly covers my feelings about the way alt med people often use papers. It is often clear they have not read them, and they treat the existence of a paper they agree with like a magic bullet. There is no awareness of the differing quality of papers. If a paper they agree with can be found, it will be used. It does not matter if the paper has been thoroughly trashed, it will forever be passed around to the gullible who will eat it up.

With all these youtube videos showing quacks peddling their nonsense, I sometimes want to make a video of my own that says, “You know that youtube video you just watched? Yeah, it’s all bullshit.”

And that is all.

@103 Travis

Papers are talisman. You hold them up and they radiate magic to stun close minded skeptics. Much like the use of the cross on vampires.

One doesn’t need to hold up physical copies of papers on the web as the links channel the same magic, via quantum mechanics, over the internet.

As a converted “follower” of Jess’ I thank you for writing your articles Orac. Despite what it appears, I think at least some of us are seeing through the smoke and mirrors.

@ Michelle #1
” I have to say I know little about the medical community or the alternative health community, however I do feel that your posts on Jessica seem cruel and unnecessary.”

So…speaking from admitted ignorance of both camps, you still feel the need to render an uninformed opinion? These posts are extraordinarily necessary, to hopefully educate the fence sitters on the very real dangers of following whimsy. This is a young woman who could be very much alive and productive today, if she’d undergone the albeit horrible and disfiguring surgery that would have given her that chance. I have no idea how popular she was or how many people her website influenced to follow her misguided and naive path, but even one is too many.

Orac comments on real cases often, and he always bends over backwards to be respectful, and give them dignity in their often awful deaths. Some have criticized the timing of the post, instead of waiting a “respectful” week or two. But really, to that community there would never be a correct time to make that post. We live in a 24/7 news cycle in an online world….this isn’t cruel, it’s just how things are now. There’ll be more sad and crazy to talk about tomorrow.

@ Orac.
Congratulations on the comment count on the previous post ! (well over 800 as I write) I thought it was both very necessary, in contrast to Michelle, and also tastfully and respectfully done, with almost no insolence at all.

Clearly it has hit a raw nerve in the Altie community, and attests to how widely read and influential your blog, and the other skeptic blogs, have now become.

Alternative therapies, to my mind, are just like a “magic box” I received for my 8th birthday. The directions said to keep the box tightly closed for 30 days – no peeking! – and if you succeeded, then you would open the box to find a treasure. Of course no 8-year-old can resist peeking, so no treasure. And if by some miracle you do make it 30 days, the “treasure” that you get is self-discipline. Not exactly the treasure I felt I was promised, but one that lecturing adults would say was what I truly should aspire to (instead of cookies or cash, which of course is what I did want). They conveniently ignored the fact that if a person has self-control, the box did not give it to them – in fact, if you didn’t peek, you clearly had self-control already inside you.

And so it is with alternative therapies – if you don’t do it absolutely perfectly, then no reward for you, and it’s your own fault for peeking. Nobody can prove the box isn’t magic, because nobody can meet the impossible standard that has been set (5 enemas a day for months or years – one cringes to even imagine it).

And if you do manage to meet the impossible standard of 5 enemas a day, every day, for months or years, then your reward is not the treasured cure you hoped for, but things like “choice”, “strength”, “happiness”, “pure living”, “connection”, or other ideals that are great, but are not actually caused by the treatments. The “magic” box is just a box, and an empty one at that.

I told my spouse about the box, and he said, “That’s a really cruel gift.” It sure is, no matter what form it comes in.

Belle Tozer I feel the need to point out the glaringly obvious however totally overlooked fact since the tragic death of Jess Ainscough hit the media. People who choose conventional western medicine as oppose to alternative or natural treatment to treat their cancer also meet the same untimely death as Jess. Western medicine does not have all the answers and neither does natural treatment, how a person chooses to treat their cancer is their own right. Why do we feel the need as a society to try and prove our opinions right and the opinions of others wrong, no two people are alike, no two bodies are alike and what works for one may or may not work for another. Those in favor for the western approach to treat cancer are having a field day with the death of Jess Ainscough and are using her as an example to manipulate people into thinking their way is the right way, which ironically is the very same thing Jess Ainscough was accused of doing for the alternative community. No one will ever know if Jess taking the more traditional western route to treat her cancer would have saved her. The western approach could give her no guarantee in this however in her death they have slammed her choices and hung her out to dry. The medical industry uses people like Jess Ainscough to scare people who dare think they know their bodies better, who dare to choose a more a more natural approach. Jess Ainscough may not have been able to save her own life with natural therapies however many others will and many others will dies just as with the western approach. We don’t have all the answers, people have the right to choose what feels right for them at the time regardless of the treatment. Who are we as a society and what does it say about us when we are damming someones choice only days after their death. The world needs more love, not less.

Hi,
Ever since I heard about Jess Ainscoughs death, I’ve been interested to see the response from both sides. Indeed, there seems to be so many scientists/doctors out there very readily jumping on her story and slamming the ‘alternative medicine / wellness’ movement. I haven’t seen too much of a response yet from the alternative health community, and I suppose that will come with time.

I like to think I’m from both worlds if that is allowed on here. I do not have cancer or have had in the past so I cannot comment there. However, I will see the doctor if I’m sick enough, I vaccinate my kids (though I do hold a fear of the side effects they can have). I leaned on fetal medicine to help me with my second pregnancy. I also see an acupuncturist once a month, and a chiropractor. I’m a huge believer in ‘you are what you eat’ and that it does effect your overall health. I believe in organic foods, I simply don’t like the idea of mass chemicals in producing food. I avoid processed foods and sugar, for the simple fact that I feel better. Oh, and I love yoga and dabble in meditation.

Never in my life have I believed you can fully control your health. There are straight out things you just can’t control. But, I believe there is more to health and wellness than western medicine gives us. And it’s not all quackery to me, though some is, and some I don’t agree with. For example reading through, just last night, a day in the life of gerson therapy does not sound like it can cure cancer (with my base level knowledge). And you would have a hard time selling that to me.

But, I find it insulting that ‘alternative medicine’ it is all brushed aside here as a collective whole. I’m not a stupid person, I’m educated and hold a degree in health science.

So my end point is, I really think there is room for both, and I acknowledge this comes from someone who does not have a serious illness to manage.

Hey Bel:

“I think people should heal themselves through any means they choose without having to be condemned by anyone. There are many doctors or quacks that are good and bad regardless of mainstream or unconventional methods of medicine. I don’t think it was a wise decision to burn witches at the stake do you?”

No one is disputing free choice here – at all. It’s been said over and over what a tragedy it is that Jess has lost her life, and no one is gloating. What you’re overlooking is that we all understand and agree that we have the right to make our own choices. It’s that simple. Drown if you feel it best, but don’t drag anyone else with you on your way.

#111

This statement

“I vaccinate my kids (though I do hold a fear of the side effects they can have)”

and this statement

“I believe in organic foods, I simply don’t like the idea of mass chemicals in producing food.”

put the lie to this statement

“I’m not a stupid person, I’m educated and hold a degree in health science.”

This is the best comment section I’ve ever seen in my life.

I don’t think the alties will learn anything. Why should they, they’re making too much money selling quackery to desperate people to ever stop.

My brother, a follower of Aincough, is dying of cancer at the moment and is wasting huge amounts of time and money at the Gawler clinic in Australia. If you haven’t heard of it the main thing you need to know is that they tell their marks, er patients, that any negative thoughts towards the treatment will prevent them from healing, and that they need to cut out anyone who questions the treatments as a ‘negative influence’ who can make them sicker.

It might be true, every time I think about Gawler I get negative and it makes me sick to the stomach.

Belle, you seem to be labouring under the misapprehension that medicine is an opinion. I’m afraid it isn’t. The whole point of modern medicine is that it can be proved to work. Sometimes to a greater or lesser extent, depending upon what it is up against. It can be shown to work in cold, hard, facts, figures and percentages. You might as well claim that ‘water is wet’ is a matter of opinion. When you can show those same cold, hard facts and figures for a ‘natural’ remedy it won’t be alt med any more…..it’ll be med.

I believe in organic foods, I simply don’t like the idea of mass chemicals in producing food.

Buying organic food is not going to guarantee that large amounts of chemicals weren’t used in it’s production; the only difference is whether they’re “natural” or “synthetic.” This of itself says nothing whatever about human or environmental toxicity.

Narad, yes I am aware that certified organic and biodynamic does not mean free from all chemicals. I buy from local producers and buy Australian grown where I can, preferring that option even if it’s not organic (and that was before the berries…) because international standards differ for organic foods. It’s picking the best food option I know how.
Organic and biodynamic food is also about soil quality. I grew up on a vineyard and a huge agricultural area. The increase in chemical use has been remarkable over the years. And my grandmother tells stories of how ‘in her day’ the soil used to be teeming with life – like worms, birds around the place etc, particularly after tractor work and discing. Now there’s not a great deal of anything in the soil. It’s dead, chemical ridden and overworked. You don’t have to be Einstein to work out that there wouldn’t be many minerals in that soil. Production of organic food isn’t perfect yet, but I believe it’s still a better option.

Those in favor for the western approach to treat cancer are having a field day with the death of Jess Ainscough

In what way is Gerson not “Western”?

@ Narad #116
‘Western’ is just a way to say supported by scientific evidence.

@ Kate #111
And why would one see an acupuncturist and a chiropractor once a month?
If someone sees the family doctor once a month, I would suppose they have pretty serious health problems. To me visiting an acupuncturist and a chiropractor once a month is just a way of trowing away money. Or do you think they have some magical effect on your health?

I only see a doctor if I have a health issue and I don’t know how long ago I saw my family doctor for the last time. And no, I’m not suffering from memory loss.
I don’t eat organic food, don’t visit any ‘alternative healthcare people’, don’t swallow suplements or vitamins and I feel as fit as a fiddle.

Please try and remember that people die in the hands of Doctors and alternative practitioners. Both have their place and can help people in different situations, who are we to judge? God gave us free will to make our own decisions. and Jess made hers.
Please consider the friends and family of Jess, respect her decision and show some compassion.
God Bless you and your family.

You don’t have to be Einstein to work out that there wouldn’t be many minerals in that soil.

If by “minerals” you mean “rocks” or “pebbles” or “clay”, these are things that many farmers prefer to do without.

Jess was doing well, I know all the medical statistics say that at a certain period the cancer will progress but maybe just maybe to all the people who do not believe in “Holistic Health” when her mother died part of her heart did and her body was not strong enough to handle the sadness!! Many people die after loosing a loved one, that is a fact!!! She promoted Whole health and sadly my personal opinion is that when her mum died part of her started too. She was an amazing girl. X

Don’t ever regret your post. I SUPPORT YOU!!!! It IS very necessary that people wake up. Stop being brainwashed. Whatever method you take should be a well thought out and educated decision for yourself, whether it is conventional or alternative. The problem lies in Jess’s message when she claimed to have ‘healed’ herself and was spreading the message like the gospel. Although in the beginning, I am sure she believed that, but around 2011/2012 when the lesions were clearly showing through and the arm was swelling up and she had to continuously cover it up, I am sure she knew that the cancer was progressing. The sad part of it is, she kept spreading the word. She should have been honest with her wellness warriors and explained that she saw an issue, but wanted to still press forward. Its okay to admit that something is not working out as you expect. She went above and beyond to cover up that arm which was getting worse and worse. Her loyal followers even asked her out of SHEER CONCERN. She gave ridiculous excuses like Lymphedema and stress. Why not be honest and clean about it, admit to human nature. Because in the end the Gerson’s last comment said it all. They basically said, she had not been on the therapy for 3 years…so they tried to blame her for her own demise, instead of pointing the finger at themselves and saying maybe their horrible treatments don’t work. Charlotte Gerson is arrogant. I have seen her in action. She claims to be the pillar of health all while taking people’s money. DOn’t get me wrong, people should take care of themselves and eat better, but that does not mean they should overlook conventional treatment as well. I believe people should do what is best for them. This is not a Jessica attack at all, because honestly we would all love to believe that following the Gerson therapy is truly a cure, but we can clearly see it is not. YOU SHOULD NEVER REGRET YOUR POSTS, because it has changed my thinking and how myself and my loved one can move forward and not believe in the quackery. Sadly Jess paid her life believing that crap. She saw the writings on the wall…The even sadder part is the coverup she did, personally so that she wouldn’t destroy her image or the business. I wish her fiancé would come forward and speak about what actually happened in those last days, so her legions can understand the truth. I don’t like how they have taken down the whole site and videos as if she simply disappeared. Most people still reference articles and videos to understand or maybe it could help someone. So that why I call her entire death a COVER UP!!!! Truly.

But, I find it insulting that ‘alternative medicine’ it is all brushed aside here as a collective whole. I’m not a stupid person, I’m educated and hold a degree in health science.

The problem seems to be that you’re including a lot of things in “alternative medicine” that don’t belong there. For instance:

Oh, and I love yoga and dabble in meditation.

I like yoga, too. I find it nice how a vigorous vinyasa-style class, for instance, basically manages to combine cardiovascular exercise, strength building, and stretching. And it’s more interesting than a treadmill. I mean, yoga can be more or less “spiritual” in the way it’s presented, but that doesn’t make it “alternative medicine.” It’s exercise, pure and simple.

Same for meditation, unless somebody is making wild claims that some sort of visualization exercise will cure cancer. I personally have much more than dabbled in meditation – zazen/shikantaza specifically – but for me it is a religious practice, nothing to do with “medicine.” I think it might help with my mental health a bit, in that I seem to be more likely to slide into depression when I’m not sitting on a regular basis, but in any case, I don’t do it for any health benefits.

Narad, yes I am aware that certified organic and biodynamic does not mean free from all chemicals. I buy from local producers and buy Australian grown where I can, preferring that option even if it’s not organic (and that was before the berries…) because international standards differ for organic foods.

If you take a look at biodynamic farming, I think you might be surprised at just how bizarre it is. I personally refuse to throw my money at something so silly.

I used to try to buy organic produce as well, because I thought it was “better,” because that just seems to be a very strong assumption within a certain culture that I was/am a part of. Then I found out that it’s no healthier and not necessarily more ecologically friendly, and I stopped wasting my money on it.

I do like to buy local produce from small farms when I can. I figure the less shipping of food from point A to point B, the better, and I like supporting small farms, whether they’re certified organic or not. I figure they probably have better practices in regards to actual farming problems like monocultures, too.

But again, that has nothing to do with “alternative medicine.” I don’t even do it expecting any special health benefits.

So I’m wondering – what kinds of actual alternative medicine do you believe in? When it comes to acupuncture, Gerson therapy (ugh), Burzynski’s cancer quackery, etc. ad nauseum, there’s just no evidence that they have any efficacy as “medicine” at all. Relying on them to treat actual illness can actually kill people, though.

Belle Tozer I feel the need to point out the glaringly obvious however totally overlooked fact since the tragic death of Jess Ainscough hit the media. People who choose conventional western medicine as oppose to alternative or natural treatment to treat their cancer also meet the same untimely death as Jess

Nobody denies that, least of all practitioners of conventional western medicine. They keep detailed records of it, in fact. And publish them widely. That’s why they’re right there on the internet for anyone to see.

The reason you don’t see that comparison being made here is not that it’s being overlooked. It’s that the detailed record-keeping I just mentioned makes a better one possible. And by “a better one,” I mean “the one that indicates, specifically, what particular kind of treatment is likeliest to succeed for what particular kind of cancer in what particular circumstances.”

So there’s actually no need to waste precious time on questions that are as broad and uninformative as “How does the outcome of Jess Ainscough’s treatment compare to that of all people in the world who have been conventionally treated for cancer?” You can just go directly to “How does the outcome of Jess Ainscough’s treatment compare to that of all people in her age range who were conventionally treated for the same kind of cancer under the same circumstances?”

And the answer to that question is: “Not well.”

It’s not even a close comparison. She would have been twice as likely to survive ten years or more with conventional treatment than without it.

(Obviously, if you make the question “Was dying terribly at a young age a better option for Jess Ainscough than having a limb amputated and living longer would have been?” nobody but Jess Ainscough could possibly be in a position to answer it. So I’m not pretending to be.)

Western medicine does not have all the answers and neither does natural treatment,

If “all the answers” means “a certain cure for all ills,” that’s true. But since western medicine demonstrably has some answers (detailed record-keeping!) and natural treatment has none, again: That’s not an apt comparison.

how a person chooses to treat their cancer is their own right.

True.

Why do we feel the need as a society to try and prove our opinions right and the opinions of others wrong,

Speaking for myself, I don’t feel that need as either a society or an individual.

I do feel a need to prevent vulnerable people who are desperately ill from investing their time, money, energy and hope in pursuing ostensible remedies that are supported by absolutely nothing other than the baseless opinion of those who profit from their promotion, though.

If possible.

no two people are alike, no two bodies are alike and what works for one may or may not work for another. Those in favor for the western approach to treat cancer are having a field day with the death of Jess Ainscough and are using her as an example to manipulate people into thinking their way is the right way, which ironically is the very same thing Jess Ainscough was accused of doing for the alternative community.

No. Those in favor of the western approach are, by definition, in favor of giving everybody access to the best available factual information about which treatments do or don’t work. And how. And why. And for whom. And when. And so on.

Jess Ainscough is accused of misleading people by repeatedly claiming to have been healed when she wasn’t.

She was very young, and in tragic, dire circumstances. So it’s impossible not to feel sympathy and sorrow for her. And it’s all too understandable why she chose to embrace a false hope.

Others are free to do likewise, if they wish. They’re just not free to make false claims about it.

Because, you know. It’s a matter of life and death. There’s a lot at stake.

No one will ever know if Jess taking the more traditional western route to treat her cancer would have saved her. The western approach could give her no guarantee in this however in her death they have slammed her choices and hung her out to dry. The medical industry uses people like Jess Ainscough to scare people who dare think they know their bodies better, who dare to choose a more a more natural approach. Jess Ainscough may not have been able to save her own life with natural therapies however many others will and many others will dies just as with the western approach. We don’t have all the answers, people have the right to choose what feels right for them at the time regardless of the treatment. Who are we as a society and what does it say about us when we are damming someones choice only days after their death. The world needs more love, not less.

It also needs more truth, not less. Apart from that, please see above.

Belle said:

Belle Tozer I feel the need to point out the glaringly obvious however totally overlooked fact since the tragic death of Jess Ainscough hit the media. People who choose conventional western medicine as oppose to alternative or natural treatment to treat their cancer also meet the same untimely death as Jess. Western medicine does not have all the answers and neither does natural treatment, how a person chooses to treat their cancer is their own right.

Belle, did you even glance at the previous thread on this topic? The one with over 900 comments? This has, in no way, been overlooked. Your sentiment was brought up over, and over, and over again, and addressed, over, and over, and over again.

I know all the medical statistics say that at a certain period the cancer will progress but maybe just maybe to all the people who do not believe in “Holistic Health” when her mother died part of her heart did and her body was not strong enough to handle the sadness!!

But her mother died of a treatable cancer because she opted for “Holistic Health” over effective treatment.

So all that would prove is that Gerson therapy is lethally dangerous to people with cancer in more ways than one.

Alice at #106:

That is very rewarding to read. I barely comment myself, but I am certain the regulars here – not to mention Orac himself! – will be glad to know the SBM message does resonate with some readers who initially do not share it.

In your case at least it seems the answer to Orac’s question in the title is – Yes!

I read the OP the other day, and was concerned that Orac might be drawing too much of a strict dichotomy where there are actually gray areas. I thought it was a bit of stretch, for example, to take Schoenfeld to task for calling for patients to be guided by “a licensed medical professional” on the basis that various quacks have licenses. First, Schoenfeld contextualizes the reference to “licensed medical professional” by references to conventional medicine and surgery before an after, so it’s pretty clear she wasn’t trying to weasel there. Second, lots of “natural foods” enthusiasts seem to believe they need no more of authority that Vani Hari or Mike Adams to guide them, so regardless of the alternative, Schoenfeld’s undermining the Internet gurus. Third, in doing this she’s admitting patients need a competency she does not have, which is a pretty harsh message in alt-land.

I’ve known folks who do various fad diets, including the paleo diet now. I would describe them as not scientificially oriented but not all that woo-ey, if at all. That is, I can’t imagine any of these dieters would resort to Gerson’s for cancer, (unless possibly their diagnosis was as dire as Ainscough’s). As such I think there’s quite a difference between “alternative health” and “alternative medicine”. Which is not to endorse “alternative health” measures like the paleo diet — just keep it in perspective.

The way I see “alternative health” and practiced and understood by people I run into is —’eating this and not that; taking this and not that, doing this and not that will keep you healthier and reduce your chances of getting sick, but you still will get sick from time to time, and then you should see a doctor.’ Whereas “alternative medicine” pretends to be cure, not prevention. I mean, people don’t start on Gerson’s when they’re healthy to avoid cancer, right? If it’s so hot, shouldn’t we all be getting coffee enemas as preventatives?

Thus, while “alternative medicine” DOES hold to the idea that we have complete control over our health and physical well being, “alternative health” seems only posit a limited influence. It is, well, an ‘alternative’ set of prescriptions for better health, offering similar promises to conventional prescriptions. Eat paleo and you’ll feel less sluggish / eat a balanced diet and you’ll feel less sluggish. Etc. Do the right things and you’ll have FEWER health problems, not NONE.

Schoenfeld’s call IMHO, is not to Alt-Med, but to this much more limited practice of Alt-Health. And it’s logical conclusion, whether she meant to imply it or not, is ‘Alt-Health shouldn’t be touching Alt-Med with a ten foot pole! Those people are crazy-ass murderers we’re NOT!’ The problem ‘Alt-Health’ would seem to have is that Internet businesses like NN are devoted to maximizing sales of ‘natural’ anything for any purpose whatsovever, and thus spread both the ‘Alt-Health’ and ‘Alt-Med’ creeds conflating them.

Perhaps skeptics should assist the truly limited Alt-Health folks by helping them undo this conflation, and establishing different categories of skeptical appropriation for the two, instead of lumping them together? Maybe this would help prevent Alt-Health consumers from sliding over into the clutches of Alt-Med/ (?)

The first business that pops to my mind as being in the Alt-Health realm is GNC, which now has a co-marketing deal with CVS where there is a “GNC section” in every CVS pharmacy. Which leads me to ask (as I don’t know), ‘What’s the skeptic/sbm take on GNC?’.

It is always nice to hear from people like Alice in #106. I often run into people that don’t understand why anyone speaks out about these things, because they don’t think anyone is going to change their mind. That might be true for a lot of people, but some people will start questioning, and do end up changing their views.

Why do we feel the need as a society to try and prove our opinions right and the opinions of others wrong,

I wonder, did you ever ask Jess this question? Because she spent a lot of time telling as many people as she could that the Gerson approach worked and “western medicine” didn’t.

So did you ever call her out on it? Or is that only reserved for those criticizing her for doing it?

My wife just handed me a copy of Women’s Health newsletter from Harvard which published an article about unnnecessary
radiation for breast cancer in women over 70. Obviously there is something wrong here. I could’t access this but here’s another article.
http://www.medicalnewstoday.com/articles/286539.php
I will not slavishly follow Western medicine.

Ken – if you’d bothered to have searched, you’d have found that Orac has previously discussed studies that say that screening mammograms happen too often and may produce more harm than good in some cases. So if you don’t think your wife should get annual screening mammograms, science may agree.

This has nothing to do with mammograms. Of course she gets them. This is about treatment. You obviously did not read the article.

Ken – you are correct, I scanned your comment and misread it. My fault, and I apologize.

Its interesting, how you bash Jess for her choice in treating her cancer. She lived much longer than most people diagnosed with her type of cancer. According to the research on http://www.ncbi.nlm.nih.gov/pubmed/12181660 This type of cancer does not respond to chemo or radiation. And most people die within 31 months and if it does go into remission in 50%, it comes back. I would say her choice was a good one for her and it prolonged her life. It’s easy to bash alternatives without actually looking at statistics of the cancer itself and not investigating by talking to people and their experiences. Of course, not all therapies are going to work the same for all people and this includes Western medicine. It boils down to choice. If you choose Western medicine, then by all means do it.
Abstract
Epithelioid sarcoma is a rare histologic subtype of sarcoma. The clinical behavior and prognostic factors influencing survival in this disease are examined. A review of clinicopathologic features of patients with epithelioid sarcoma prospectively followed between September 1981 and April 2001 at the Cancer Institute Hospital was performed. Eight patients (4 men and 4 women) constituted the subjects of this study, with a mean age of 41 years. Tumors presented in the lower extremity in 62.5% of patients and in the upper extremity in 37.5%. All patients were followed for at least 10 years from the time of diagnosis or until death. The follow-up ranged from 17 to 228 months, with a mean of 78 months. At least one local recurrence was seen in 50% of patients. During the course of the disease, metastases to regional lymph nodes developed in 50% of patients and metastases to the lungs in 62.5%. The median survival was 31 months, with a 25% 5-year and 10-year survival rate. Pulmonary metastases were correlated with decreased survival. A delay in diagnosis of epithelioid sarcoma is common. Epithelioid sarcoma differs from other sarcoma subtypes in its propensity for nodal spread and local recurrence. Chemotherapy and radiotherapy have an insignificant effect on the course of epithelioid sarcoma. Careful follow-up, evaluating local recurrence, nodal spread, and pulmonary metastases, is warranted. The long-term outcome of epithelioid sarcoma is dismal.

Actually, if you paid attention, linked to posts with more comprehensive references, including an analysis of SEER data. Your reference is over 12 years old.

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My point- do the research. Obviously following the Gerson Diet is not the way to go. But some people give up and don’t want anymore chemo. I’ve seen it in my relatives who followed the
chemo protocol (MD Anderson) for 5 years faithfully believing it would work and they would live. Horrible side effects. Died anyway.

My wife just handed me a copy of Women’s Health newsletter from Harvard which published an article about unnnecessary
radiation for breast cancer in women over 70. Obviously there is something wrong here.

Interesting. Who do you think it is that is assessing the use of radiation in women over 70, and concluding that it is unnecessary.

It certainly isn’t the “alternative” providers. Amazingly, this is based on studies using that evil “Western medicine”….

I will not slavishly follow Western medicine.

…which you don’t follow.

#140 You really jump to conclusions. Polish your critical thinking skills please. Thank God or the universe or whatever for Western Medicine!

#140 slavishly is the operative word here.

As opposed to “selectively” I guess, then? As in, you follow “Western Medicine” when it says what you want it to say, but not when it doesn’t?

That’s not following, that’s doing whatever you want.

#146 Do you have cognitive problems? Exactly what are you talking about? I was prescribed Leviquin for a sinus infection years ago when it came out on the market. Did the research- found out the side effects and didn’t take it. Years later levaquin came under fire. The sinus infection resolved on it’s own.
What is exactly wrong with this.

And another time I had a sinus problem and was prescribed
(by another doctor) -amoxicillin -which works just fine.
(But can’t be used by people who are allergic to penicillin)

ken, nothing is wrong with rejecting medicine for a sinus infection. Low risk compared with cancer. Sinus infections are rarely fatal. Cancer is often fatal.

#149 Obviously- you missed the point. I feel I have the right to seek out different oncologists as to a treatment plan- this will not include alties.

‘her doctors tried isolated limb perfusion with chemotherapy in an attempt to avoid an amputation of her left arm at the shoulder, her tumor recurred, after which she chose not to undergo amputation and instead to embrace the quackery known as Gerson therapy, which she did for over two years.’

So you’re saying that she tried chemo and perfusion, which didn’t work, her tumor came back, in a swift manor I presume. She did not want her limb amputated, so she chose an alternative AFTER having tried some ‘conventional’ treatments. I’m no advocate for Gerson. Lord knows I would never try it. But she chose not to have her arm amputated… and since she made that choice, she probably thought she would need some lifestyle changes to support her and give her a chance. So she chose Gerson, and it seemed to be working for her. It seems her case was aggressive tumor to begin with. So given the information that I’ve managed to gather, she made a pretty good run at the life she had.

You cannot slander somebody for making the choice not to get her arm amputated. Yes I’ve read all the comments about Gerson being woo… But even if she had chosen to just eat a smart vegan diet or something, and written a cookbook and marketed that… you would probably still come after her.

The fact is that she did try some conventional therapy, it wasn’t the choice that you thought she should have made (amputating her arm), but its her body so you have no say in that matter. You can pick apart her words and criticize them, sure. But you can’t say she made a bad decision when it wasn’t yours to make.

I do agree that her marketing of Gerson was a too strong too soon. But I don’t think that her choice of not undergoing amputation and following an alternative modality warrants the amount of criticism its getting. She didn’t die the very next day of a carrot juice overdose. She lived well into her life expectancy without having the arm amputated.

I do agree though that the alternative treatment sector is getting out of hand. People going to naturopaths and nutritionalists instead of doctors. I do think that there is some validity to the industry, as doctors don’t often address lifestyle in detail with patients. And I Feel like its here to stay. So I think that doctors need to educate themselves more about the ‘alternative’ practices out there and spend more time with their patients talking about implementing their choices. Somehow it needs to be married with conventional medicine because this mass exodus from the conventional is a little bit scary… especially when people are trusting under-qualified ‘specialists’ with online certification, as their primary care for serious illness.

Ainscough did more than just try Gerson. She promoted it. She made videos saying how great Gerson therapy was and how fantastic coffee enemas were. She sold herself as a Gerson success story. She built a brand around herself, Gerson therapy, and a raw vegan diet.

If it were just her, I would have had less of a problem. Competent adults can choose any quackery they desire. It’s when they start promoting it to others that I start to get testy.

Also, the isolated limb perfusion was suggested to her as a last ditch alternative to avoid amputation, the idea clearly being that amputation would be a fallback if it didn’t work. (That’s why surgeons do isolated limb perfusion: To try to avoid amputation. If the tumor recurs in the limb after isolated limb perfusion, then amputation is put back on the table as a salvage operation to try to save the patient’s life given that the limb can’t be salvaged.) It didn’t work, and Ainscough rejected the fallback.

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Interesting article here:

http://www.sunshinecoastdaily.com.au/news/family-pays-tribute-to-jessica/2564425/

“Jess elected to devote herself to unconventional treatments which included Gerson Therapy for two years.

While this did appear to help Jess immensely, after the devastation of losing her mother Sharyn to breast cancer in 2013, Jess’ cancer resurfaced once again and was confirmed in 2014. ”

It concerns me greatly it cannot be admitted that her cancer never went away and still in death they want to keep up the farce that it “went away” and only “resurfaced once again” when her mother passed away.

It sickens me, that you can tell a lie, paint it green and make a fortune off it. I do not wish death upon anyone, I had hoped as once being a follower of hers she really would live, I hoped what she was doing would work for her sake and her fans sake but it saddens me that she took everyone along for the ride and people will still be blinded to the truth.

“The medical industry uses people like Jess Ainscough to scare people who dare think they know their bodies better”

“Know their bodies.” One of the reasons these threads have been so fascinating is for the glimpses of the many peculiar notions alt-med proponents hold. On the other thread we talked about how the “boosting the immune system” became an unthinking mantra, not just in cancer but in “holistic health” circles in general. Some people seem to think everything that could possibly go wrong with the human body is about the immune system, and conversely, if you just “boost the immune system,” nothing can get ya.

“Know your body” is another alt med trope. Alt-medders wax indignant that a doctor would dare to “know their body” better than they know it themselves. I suppose it’s a mystical thing. I mean, why do you go to a doctor if you already “know your body” and it magically tells you “what it needs”? (Ainscough used that rhetoric regularly, noting that she was getting better and better at learning “what my body needs.”)

We do generally go to doctors to find out things about our bodies that we DON’T know. This is why doctors run tests etc. If all we needed to do was “know our bodies,” and then we could heal ourselves of virtually everything, we’d have no need of doctors. I guess that’s what some of these folks do believe.

But yeah, they mean it in a spiritual sense. Jess spoke regularly of “listening to her body” and intuiting “what it needed” and “what it was trying to tell me” (or “what the cancer was trying to tell me”). It was meant in a religious sense.

I kept wanting to say, “What the cancer wants to ‘tell’ you? It wants to tell you, ‘Ha, sucker, die.’ That’s really all it’s got to say.”

I understand what you are saying about the Gerson therapy, Orac. But the choice to pursue quackery for anyone is their choice, especially after having tried medical options, and having first hand experience with how it felt to your body and soul to undergo those procedures. Even though Jess sold it, you aren’t just going after her and Gerson, you’re casting a wide net here. Had your argument been focused more on the Gerson therapy or your terminology referenced more particular treatments, I’d be totally with you. But the terminology you use… such as ‘alternative medicine’, and your apparent wide implications, I feel unfairly include people and beliefs that you have no right to target.

The thing I don’t understand is how rejecting the option of limb amputation (even after perfusion) can be a point of discussion for anyone, but Jess herself. She experienced the entire process subjectively. Not us… and she chose an alternative modality. That part shouldn’t be up for judgement. I get why you disprove of her selling Gerson. But her life choices shouldn’t be up for debate, especially since she fell within life expectancy, and you don’t have her medical reports to know the particulars of her case.

Eddy,

The thing I don’t understand is how you can be arguing with things you haven’t actually read. I’m not the only person here who has said that we sympathize with Ainscough’s choice not to have her arm amputated—and might have made the same choice ourselves, in her situation—but that this doesn’t justify the Gerson protocol. She could have done neither, and enjoyed those remaining few years, rather than spending two years housebound from the Gerson “treatment,” and putting what energy she had after all the coffee enemas into convincing other desperate people to put themselves through the same misery. More than a few alt-med types would do well to remember “first, do no harm.” They may not be able to heal, but they can at least stop making the patients miserable.

As for “alternative medicine,” that’s what the people promoting it like to call it. But I don’t need to sugar-coat and euphemize: why are you defending quackery?

I’m currently curating a book on the modern food movement which Orac is aware of and I think it might be fitting to dedicate it to the lady’s memory.

It’s hard science and anti quackery but it’s aimed at the fence sitters to educate them into making choices based on evidence, not becuase the person telling them is pretty.

Because she expresses herself in a more moderate fashion, I have a bit more tolerance for Eddy than I do most of the “how dare you judge Jess” crew…but still… we live in a world surrounded by links to “Best and the Worst of the Oscars gowns” and the “Worst Celebrity Plastic Surgery” and the checkout counters are chock-a-block with celebrity rags – how you possible imagine that any celebrity can escape criticism? When I was younger, girls criticized each other clothes, makeup and hair and it’s only become worse – everyone judges everyone else’s every scrap of food going into their gob as if it’s a huge moral issue, according to whatever fashionable dietary superstition.

All the people that are outraged that anyone dare judge Jess need to grow up and join the real world. Your acquaintances, family, coworkers and employers are judging you all the time. Jess was selling a “lifestyle” literally. Her “cure” kills.

I was taught that healing from cancer is like a circle. Conventional medicine may contribute to partially completing the circle while other lifestyles factors such as nutrition, exercise, stress management, etc. can also add to it.
I think that everybody’s journey is unique.
I also think that alternative or lifestyle medicine can give people a sense of hope and control over their situation. Traditional medicine can leave a person feeling extremely powerless.

“The thing I don’t understand is how rejecting the option of limb amputation (even after perfusion) can be a point of discussion for anyone, but Jess herself.”

It is really getting tedious that so many people only read enough of the topic to make unwarranted comments. The point has been explained over and over and over and over and over again that no one has any issue whatsoever with what cancer regimen Jess Ainscough followed, or didn’t follow.

The issue is not that she personally chose to reject surgery – the issue is that she touted the useless and dangerous Gerson products and its sadistic regimen. She made a personal fortune off the products and off her personal “brand” as the Wellness Warrior – she announced on her blog that within the first year she was making six figures – and without question she led other people to endanger their lives and/or probably die from seeking useless treatment – people who might have been saved – who might STILL be saved if they read these articles and comments and can take in the point of the article! Apparently, quite a few people simply cannot understand what they are reading.

“her life choices shouldn’t be up for debate”

Then why did she put them up for debate? That is what you do when you set up a website, make public testimonials, sell products, appear on television and go on speaking tours touting your treatment regimen, make videos explaining your regimen, maintain a blog which allows public comments, etc.

I mean this is a person who literally made a video explaining how to self-administer coffee enemas. Yes, indeed her life choices are up for public debate.

Jackie,

It isn’t “conventional medicine” that makes a person feel powerless. It’s CANCER. Cancer is awful, and the reasons one person gets it and another doesn’t are only beginning to be fully understood. To blame other people – the doctor – for the powerlessness one feels after receiving a cancer diagnosis isn’t rational, though it’s human nature.

So someone tells you coffee enemas will help, and you regain a feeling of “power,” because coffee enemas, while kind of yucky, feel like a do-able thing. Feeling powerful is nice, but if the patient’s feeling of power doesn’t actually interface with reality, there will sooner or later be an even more terrible feeling of powerlessness. Better perhaps to actually understand one’s situation in the first place? Blaming the doctor for your feeling “powerless” when you have cancer is just projection. Doctors – particularly oncologists – steel themselves against this, as they learn that most patients will do it, and that putting up with it is just part of the job description. (There really IS a reason we pay cancer docs good money – their jobs are all about confronting human misery, year in, year out.)

It’s reprehensible to sell people a therapy that makes them “feel less powerless” by lying to them about its chance of success. In the case of Gerson, there is virtually no chance of success. (What “successes” there are, are unproven at best, and most likely represent cases in which either earlier medical or surgical treatment had been at least partially successful, or the person was misdiagnosed and didn’t actually have a malignancy in the first place, or they were a statistical outlier – all cancers have them – who survived beyond the median or average survival time – and even many of those people, if you tracked them later, would likely prove to have had recurrences – that’s if they didn’t eventually seek conventional treatment once they understood that Gerson had not been curative).

Yeah, I don’t expect new readers to read all 161 comments (thus far), but reading maybe a dozen or two would make it apparent to newbies that we’ve already discussed these issues multiple times.

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Orac. You. Are. Awesome.

Reading through the comments I can’t help but notice that none of the Jess supporters have addressed the issue that she was not honest about her deteriorating condition. Yes they have loudly defended her amazing attitude and brave decision etc, but they seem to have missed the BIG point – She neglected to mention that she was not in any way thriving.

There are no doubt people with cancer out there that, in the past year, have made the weighty decision to follow in her footsteps based very much on her thriving/healing testimony – a testimony that was in many ways fabricated, or at the very least heavily edited. Followers were led to believe that all was well when in fact she was bedridden and very, very unwell.

If she had been honest even three months ago it could have provided someone with vital information during their decision making process – a life and death decision making process.

She may have been the most wonderful and inspiring person but the dishonesty is not ok and it irks me greatly.

In the end Jess was used by an unscrupulous mob of anti-“Western medicine” freaks who all had their one-eyed opinions to blare from their rooftops. But the people I most feel sorry for are the young children who may have been forced by the adherents of quackery, who have been forced to undergo the extremes of Gerson therapy against their wills.

Even though Jess sold it, you aren’t just going after her and Gerson, you’re casting a wide net here.

If what’s being caught up in that wide net are other alt med therapies like the Gerson protocol for which there exists either no evidence of efficacy or a body evidence of demonstrating a lack of efficacy, and people like Jess who have gone beyond simply embracing those therapies themselves to actively ‘sell’ (your word) them to others as well, it’s entirely appropriate that wide net be cast.

But the terminology you use… such as ‘alternative medicine’, and your apparent wide implications, I feel unfairly include people and beliefs that you have no right to target.

Recall that by definition ‘alternative’ treatments are treatments that either have not been shown to work, or that have actually been shown not to work. By what rational argument does anyone at all lack the right to address them critically?

Conventional medicine may contribute to partially completing the circle while other lifestyles factors such as nutrition, exercise, stress management, etc. can also add to it.

First, let me note that nutrition, exercise, and stress management are integral parts of conventional medicine, despite alt med attempts to claim them for itself.

Second let me note that while there is evidence that nutritional and lifestyle choices may reduce one’s risk of getting certain cancers, there’s no evidence that they can be curative once one has already developed cancer.

“I was taught that healing from cancer is like a circle. Conventional medicine may contribute to partially completing the circle while other lifestyles factors such as nutrition, exercise, stress management, etc. can also add to it.
I think that everybody’s journey is unique.”

But if you think “everyone’s journey is unique” then healing from cancer isn’t anything at all like a “circle” at all, is it? You’re using sentimental, meaningless platitudes.

I have followed Jess’s story on this blog for some time. I am very sad that she is dead, and yes, she had the right to make her own decisions, but by turning her illness into a business venture, she may well kill a lot of other people. I find myself wondering if she felt an immense amount of guilt over the death of her mother.

Last October, I had a deep excisional biopsy of two lymph nodes in my neck. I was fortunate that I had to wait less than a week to have the procedure, and got the pathology results within four days of the surgery. I can say that it was an anxiety-ridden time. I have two young children, and I was scared to death that I would be diagnosed with lymphoma. Contemplating cancer treatment and the possibility of a poor outcome is unpleasant, but I never doubted that if it was cancer that I would do whatever evidence-based treatment recommended by my doctors, be it chemo, radiation, or even stem cell transplant. My biopsy was thankfully clean, and because of this, some people think it was unnecessary surgery. I cannot wrap my head around this level of denial. Your best chance of being treated successfully is identifying cancer early. It took about a month for me to feel fully recovered from the surgery, but I do not for an instant regret it. Knowledge is power, a fact that seems to be lost on the majority of people in the alt-med movement.

@Marc #157

IMHO, Ainscough iwould be problematic as a dedication, because she’s both victim and perpetrator, you could be seen as attempting to tap her celebrity and physical appearance, and you could receive negative publicity by using her name w/o consent of her family.

Though ‘natural food’ is a much wider ballpark than ‘natural cures’ and Ainscough kind of covers the whole ground, if ‘natural cures’ are a synecdoche of ‘natural food” you might also consider a dedication to Makayla Sault — not that that would be without minefields of its own…

She did not advocate a raw vegan life style. Gerson therapy includes a multitude of cooked foods. I know she’s passed, but let’s please at least get the facts straight.

a-anon: “Alternative medicine does promise a short cut to wellness, …. in some ways, I think the opposite is true. By making their programs difficult and time consuming (while still making grandiose promises), the alt-medders can actually *become* your life. And that makes it all the easy for them to make you a devoted follower.”

Yes. This. The more complicated you can make the regimen, the more people believe there must be something to it. Plus, the more time, energy, and money invested, the less likely that people will take the time to question or seek out rational alternatives because they’re so wrapped up in what they’re doing.

Up front, the alt-medders make it *sound* like the easier and of course, more “natural” alternative. But once you take that bait and follow one of their crazy theories, it becomes easier to believe and follow the next one (and the next one and the next one) without being able to objectively know whether any of it is working. Definitely a rabbit hole. Been there, done that.

Trust me – when quack labs dress their pseudoscientific tests up in legitimate-looking clothing, – aka
http://www.australianbiologics.com.au/
the chances of any poor bugger being able to tell the quackery from evidence-based testing diminishes exponentially.

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