Wednesday, April 15, 2015

Jess Ainscough, Belle Gibson and the New Purity Movement: How Nutritionism and Pseudoscience Overtook the Fundamentalist Focus on Bodily Integrity and Acceptable Femininity

*This is a guest post by Rebecca who has her own blog called the unwholesome.  If you don't read it yet, you should.  

During George W Bush's reign I hate-read, in earnest, the numerous accounts of the decidedly-American purity movement by journalists, ex-devotees and critics. The stories of father-daughter 'purity balls', purity rings and an unnerving focus on female sexual purity infiltrated and shaped the arse-end of Bush's legacy and in part, I believe, contributed to the demise of dominionist domination in the American political arena.

In Australia, its take-off was far less assured: despite the popularity of Hillsong and all her hideous little offspring, sexual purity was less of a big deal here than abroad. Our religion has always been a little more mainline, our big preachers less televised, their political influence (Toned Abs notwithstanding) positively piss-weak in comparison.

This isn't to say that undercurrents of misogyny and calvinistic 'just-world' thinking don't exist here: to wit, comments  by clergy that Jill Meagher may not have been murdered had she not been out so late at night are mealy-mouthed nods to the notion that female sexuality is a corruptible, dangerous force, turning even the most mild-mannered of repeat parole breachers and serial sadists into murderers. However, the backlash this received prompted the diocese to apologise publicly for the statements - an idea unthinkable had it been Pat Robertson or James Dobson commenting.

Our form of asceticism is thus not of the dancing and drinking variety: more, it is of the dietary abstinence kind. Its proponents are not bland-faced, plainly dressed and dour of disposition, but fashionable, charismatic and able to sell wholesale the notion that our bodies are only moments away from total corruption and ruin lest we so much as think of a hot chip sanga made on white bread.

My first introduction to Jess Ainscough - the regrettably deceased and even more regrettably influential 'Wellness Warrior' blogger - came in 2013 thanks to her tantrum against a Byron Bay cafe who dared serve her a burger that may or may not have been fully organic. Ainscough, undergoing the thoroughly discredited, dangerous, fraudulent cancer 'treatment' as espoused by the Gerson Clinic (seemingly only run in Mexico and Hungary - so legitimate right now) said of the incident:

I felt dirty. I felt like I needed to give my insides about 10 showers. I was so shocked that I just hung up the phone, but I wish I’d told her that her since her “cancer fighting” burger contains pesticides it is actually cancer causing.

This is a reasonably hyperbolic approach. There are few who practice evidence-based medicine who would be at all worried about a potentially unwashed bit of cos, and probably more who would be happy if people ate just one meat-free, fat-free meal in between bong-binges and all night drinks on their Byron holiday. The way Ainscough carried on, however, you'd have thought Manna Haven Cafe had offered her an evening of unprotected bliss with a FIFO miner who had a penchant for homemade tattoos and who exclusively ate imported frozen berries. The thought that one meal is unlikely to undo multiple years of disciplined neurotic eating is equally unlikely as it is uninspiring: just like religious faith imperilled by reading Harry Potter, a form of treatment can hardly be very good or worth keeping up if it can be undone by one lousy vegan burger. More than anything the experience made me feel sympathetic for Ainscough: imagine the thing that is jeopardising your health is one lame, meat-free, fat-free, fun-free burger. And imagine one's last years of life spent hovering over an enema bucket while you slavishly prepare a bloody juice every hour every day of your life, never enjoying the simple pleasures of nutella sandwiches with a perfect bread:nutella ratio of 40:60, or sipping a coldie on one's front deck after a blistering party, or a Sunday afternoon spent with builder's tea, scotch fingers and a similarly introverted friend.

More detrimental than a regimented adherence to organic food, or paleo, or macrobiotics, or raw veganism, or any other highly restricted diet is a fervent rejection of conventional, evidence-based medicine. Such as with nutritionism, it shares extreme chemophobia and a confusing approach to bodily purity which sees 'unnatural' interventions such as surgery, chemotherapy, controlled antibiotic use, vaccines and anaesthesia as sullying and toxic.

As an approach it bears numerous similarities to the sexual abstinence movement: it is focussed on femininity and women, with numerous appeals to natural fertility, sexual desirability and some fallacious exhortations that we 'know our bodies better than any doctor' and to 'make our own choices and do our own research'. Practitioners are predominantly not evidence-based: Cyndi O'Meara, anti-vaccination nutritionist and friend of the harbinger of epidemic doom Meryl Dorey, brags about having "never taken an antibiotic, painkiller or any other form of medication in her entire life" - as though this qualifies her to offer health advice. It is a classic naturalistic fallacy: the idea that somehow, these anachronistic refugees of a wholesome, organic Arcadia are here to save us is as offensive as it is silly. Arsenic is natural. Asbestos is natural. Great white sharks and funnel-web spiders are natural - and they are obviously not good for us.

Conventional medical treatment - especially chemotherapy - is always framed by the wellness movement as 'burning, slashing and poisoning', and indeed, this is true. There is good reason why, as treatment, it is limited to cancer, or hepatitis C, or ulcerative collitis: it is because it is so efficacious and destructive to cancer cells that it can do damage to other non-cancerous cells, and for this reason it is strictly administered and monitored. For some forms of cancer, patients are advised to avoid unprotected sex with their partners, so teratogenic are their treatments, and many women become infertile as a result of chemotherapy or surgery. It is not hard to see a bald cancer patient, or one with extremely photophobic skin and eyes (as my own mother suffered from when receiving cancer treatment) and to see poisoning and corruption at work. It is a very fire and brimstone kind of threat: go natural, or spend eternity in the circle of hell set aside for ball-busters, single mothers and the criminally unsexy.

It is this fear of lost femininity - and the fertility, beauty and wholeness which stand as proxies for traditional, conservative femininity - that pseudoscientific hacks play at, and it is not a huge stretch to point out that their view on femininity and its proxies of conventional heterosexist allure and maternal instincts as being so natural and ingrained is one that is inherently problematic to feminist discourse and the notion of performed gender. It is also not a huge stretch to argue that an essentialist, naturalistic ideal of conservative femininity - combined with a disdain for synthetic hormones and surgical intervention - is inherently transphobic and exclusive. (The wellness movement, with its recommendation for expensive organic food and for unverified therapies that cost more than a bulk billing GP appointment, is already exclusive economically, needless to say.)

Belle Gibson did it particularly well in her own fraudulent tirade against evidence-based medicine. She railed against the government for 'giving her cancer' through the Gardasil injection, and the likeness to a predatory, unthinking rapist is drawn. The 'rape' analogy is especially frequently drawn in anti-vaccination circles surrounding consent, and as a feminist who is particularly cognisant of rape culture and issues with consent (especially with young people and children) it is concerning and insulting to the medical community and to all victims of sexual assault and abuse. The frequent calling-cry of antivaccine proponents or opponents of chemotherapy is to beware the toxins: a call which is hugely ignorant pharmacologically, yet devastating in playing into the fears of a largely ignorant community who are not scientifically literate while being very afraid.

Gibson was an especially interesting case: at times, her message was unpalatable (her twitter posts about Gardasil were far less likely to be shared than her pilfered 'bliss ball' recipes). However, when she was on-message was when she was at her best: beautiful, dignified, holding her equally photogenic son aloft in photography as if to highlight her feminine credentials. She managed to be the perfect amalgamation of the Victorian era 'angel of the house' ideal - beautiful, resigned, devotedly maternal, pure - and the twenty-first century wellness pin-up - wealthy, photogenic, business-savvy, zen. That she was 'suffering' with her cancer was all the more symbolic; it provided a cheap, accessible form of empathy to her readers, and her 'survival' literally elevated her to miracle-status. She was in every way the Mother Theresa of the movement: both in her superficial facade of kindness and charity, and in her more real apathy to the suffering of those in her care, and in her financial avarice and ethical disinterest in where the money came from, be it from deposed Romanian dictator or desperate Instagram fans. Hitchens surely would have had a field day with her.

The pseudoscientific wellness community, despite invoking messages of 'free choice' and escaping from the patriarchy of western medicine, is decidedly antifeminist in its goals and semiotics. Feminism - especially second and third wave feminism - has long since railed against prevailing notions of women being the gatekeepers of sexual purity and community morality, or the idea that women and girls are forever sullied because of sexual contact. In particular, third-wave and postcolonial feminism has done much to challenge notions of rape victims being forever 'damaged' or devalued by their experiences, and has long since campaigned for the equal rights of women globally to receive quality healthcare in the form of contraceptive cover and family planning, vaccines and treatment of childbirth complications like fistulas with surgery and antibiotic treatment. These are all things that are making a real difference in the lives of women globally: lifespans are improving, risks of maternal and childhood mortality are plummeting, and economic and educational opportunities are possible all because of treatments empirically proven to work - unlike green smoothies and acupuncture, which might make people who can afford them feel 'more connected with their true selves'. And like the fight against conventional medicine in Australia, so too are pseudoscientific beliefs predicated on irrational notions being used to fight AIDS treatment in Ghana and South Africa, and vaccine programs in Pakistan. These aims too are achieved by manipulating and abusing operant gender discourses about traditional femininity, and made even more extreme and deadly by the vehemence with which this femininity is endorsed and enforced upon women globally.

And, in the end, it is all for nought: Ainscough's inevitable death was met with callous indifference from the Gerson Clinic responsible for her early death (fobbing off critics with a heartless "she stopped following us three years ago, but like, totes sad, babes"), and from woo pedlars quick to claim that had only she lived a better life sooner, or been even more adherent to Gerson's dietary restrictions, or been more positive, she might have survived. People die every day of cancer - even if the treatment is evidence-based. But the difference between real doctors and the charlatans is the phrasing. With evidence based practitioners, the cancer killed the patient, or the treatment failed. I am yet to see a publically renowned, media-prominent doctor berating or criticising a patient for not being positive enough, or for not attracting the right energy, or for not eating enough organic food. The wellness crowd do. The wellness crowd say illness is a personal moral failure: a manifestation of negativity, poor choices and a failure to keep oneself pure.

There is little to distinguish the wellness industry from the cold, harsh doctrine that we are all born fallen and that our demise is deserved of Calvinist theology. There is no light, or kindness, or healing, or warmth. It is boldly antifeminist, anti-humanist, and anti-evidence. And just as feminism rejects the idea that a body is degraded or unworthy due to sexual impurity, so too must it fight the notion that we are undeserving, unwholesome or less-than because we choose medicine as our medicine, or dare to imbibe in the less-than organic. To conclude, I don't believe Jess Ainscough operated under nefarious intent. (The same cannot be said of Gibson, who lies like a lying liar who lies.) Like most in the industry, she found a medium which was profitable, connected her with an audience of millions, and which relied on the trends of the time in terms of conservative self-interest, narcissistic arrogance and special snowflake syndrome. Unlike the others, she sold a fatal bill of goods, and those who promoted her uncritically, even in the absence of evidence or logic or the actual fear that justified Ainscough's actions to some degree, deserve to be brought into the spotlight and challenged for their culpability in spreading this message.

82 comments:

  1. Hi Rebecca,

    I initially read this post on your own blog and I must say this kind of analysis and insight is really necessary. The blog idea is great, too. I have been wondering about these issues in the context of social anthropology, but never withing the framing of feminist ideas. Very interesting.

    These wellness warriors are a new breed and are not explainable only with gullibility or desperation of cancer patients, most of their followers probably never had cancer. They are some sort of a combination of snake oil peddlers, Cosmopolitan style ideas on how to be a proper woman and creators of religious cults. Truly fascinating and it makes me wonder what their popularity says about our society.

    Keep up the great work. You definitely have a talent for writing.

    ReplyDelete
  2. Meh.

    Perhaps it is as simple as the new generation of drop-outs, lazy, self-absorbed, illiterates and scoffing at the idea of actually going out into the real world and working hard to achieve what one wants in life.

    Anyone can set up a silly website and make money with a certain kind of niche. Doesn't mean it is meaningful to anyone except the one making the money off whomever will follow them.

    ReplyDelete
  3. Hi Rebecca
    Your article explored places unknown in this new era of wellness blogging. Thank you. It is fairly obvious that B-School and the IIN have created a virtual monster. You only need to look at the plethora of similar sites with staged photography, flowing robes, kale and quinoa recipes and inspirational quotes (ugh) It's imperative that we call the 'Wellness Blogger Busters' when we see danger.

    Orac, Rosalie, Violet, Ella, Auma and now Rebecca to the rescue.


    ReplyDelete
  4. Great post and excellent points.

    I too only became aware of Jess after the Byron incident and was pretty appalled. To me it illustrates what a privileged bubble we live in, where people complain about the pureness of their lettuce and lack of broccoli while being treated in world class hospitals. How lucky they are to have such problems when there are children digging through garbage tips for food scraps in other parts of the world. It disgusts me.

    One last point - I loved this post but not the FIFO stereotyping. I know many and I know how it effects them.

    ReplyDelete
    Replies
    1. I think the "joke" was more about the idea that middle-class, privileged wellness women would find the idea of spending any time with a miner appalling. Hence, the statement about "frozen" berries - he is now doubly "impure" to them.

      Delete
  5. Yes I do understand the joke and I really don't want to detract from the real issue, I just wanted to point out that joke or not the comment still perpetuates a negative image of FIFO workers at a time when their mental wellbeing is quite an important issue.

    Ok my off topic vent is over and I will now refocus.

    Sorry readers.

    ReplyDelete
    Replies
    1. If it matters to you, though I am not Australian, my brother has a similar job on the North Slope in Alaska, and so I certainly understand the issue here. Imagine everything wrong with that type of work, coupled with total darkness half the year. All those FIFO guys engage in much more honest work than the "wellness" crown. I hope they know that.

      Delete
    2. I hope they do too!
      Wow half a year of darkness - I'll mention that to my brother in law next time he complains about night shift;)

      Delete
  6. Oh no. CMF's interview with 'Chris beat cancer' is out, and it's every bit as bad as you might imagine... such stupidity. Is there no end?

    ReplyDelete
  7. Candice's treating doctors need to request that she attends an appointment so they can explain to her why she doesn't have cancer. She has no understanding of how cancer behaves or how her conventional treatment is actually working for her beautifully, as it was expected to.

    I'm disgusted that she's out there telling the world such lies about the treatment regime that saved her life. The medical profession must shudder when dealing with people like CMF and CBC (Chris Beat Cancer).

    This reminds me of the Simpson's episode when Marge cooks Homer his favourite lamb chops. She prepares them carefully, just how he likes them. At the end she serves them up with her secret ingredient... just a 'dash of MSG'. CMF and her cancer cures... pineapples, meditation, positive thoughts....and a 'dash of surgery and radiation'.

    ReplyDelete
  8. Thanks Candice. I'll be sure to let my 17 year old daughter know that she was wrong to have that lifesaving surgery and chemotherapy when she was 2. Yes, 2 years old. If only she'd been given 'fruit chemo' or a prescription for broccoli. I guess it must have been that McDonald's happy meal she had when she was 1.

    Oh boy Ella...are you up for transcribing this?

    ReplyDelete
  9. One thing that really bugs me is the imagery: "natural beauties" whose appearance is supposed to prove the efficacy of their claims, when they are made-up, bronzed, bleached, tanned, even veneered and augmented. People raved about Gibson's "glow". Anyone could glow with that much makeup on and the right filter.

    ReplyDelete
  10. Yeah - who needs a job - Jess' demise has inspired this lassie to build her own B-school blogging pyramid scheme http://iquitmyjob.com.au/im-dedicating-year-jess/?utm_source=rss&utm_medium=rss&utm_campaign=im-dedicating-year-jess

    ReplyDelete
    Replies
    1. Funny, she doesn't seem to have got many comments... And it's full of trite, worthless dictums. Quit your job to do what? Make money perpetually wallowing in a bubble-bath of your own narcissism.

      Wellness bloggers all seem to have this over-arching obsession with themselves as being the centre of their universe. There is no other object to their lives - art, music, the environment, politics, reality itself is simply not anywhere on their horizons.

      This total lack of culture or awareness of anything outside the self is one thing that's so profoundly sick about them.

      Delete
  11. Something disturbing is happening over at her FB page. One of her commenters has 'suspicious cells' in her thyroid and is inspired by CMF and her pineapples. CMF further encouraged her with: Find your nearest Naturopath gorgeous girl They will help you to heal yourself the way "god" intended

    This is what we were afraid of.

    ReplyDelete
    Replies
    1. Yes. This is the exact thing I have been concerned about. Ms Fox seems even more determinedly oblivious to the effects her "advice" may have.

      Delete
    2. Is there value in screenshoting this type of comments on her site and reporting them? I really hope there are investigative journalists keeping track of all of this!

      Delete
    3. Please screenshot them when you can and send them to me at violetrealitybased@gmail.com. I want a collection of everything she writes because as we know from experience, these cancer "wellness" bloggers delete things all the time.

      Delete
    4. There is a large overlap with "faith healing" -- thematically, as both the naturopathic cures stress "positivity" the way faith healers insist on avoiding doubt for it to work, thus immunizing them from the consequences of failure (the patient just didn't clap hard enough!) and also literally, because I've seen the holistic diets and cleanses being hailed as part of "God's miracles" by religious woo peddlers, who are often antivax into the bargain. It's a very porous boundary, but it does seem to share a "rebellion against authority" mindset and a fear of poisons/contamjnated thoughts.

      Delete
  12. I have been out of the loop just a couple of days and I have a lot of reading to do to catch up it seems!

    I have been intermittently annoyed by this whole saga, but thankfully overall intrigued and entertained - mainly thanks to this blog and its various wonderfully sensible contributors. But with release of the CBC video (I can't bring myself to watch it yet...) seems to have stimulated a bunch of support... and I'm actually getting angry when I see... "They want to cut my thyroid out just because of "suspicious" cells, not even a diagnosis" post on that FB wall.

    If someone has been told this I think it is most likely they have been given this "suspicous" label for 3 possible results from a fine needle biopsy of a thyroid lesion.
    1. Atypia of Undetermined Significance (or Follicular Lesion of Undetermined Significance)
    2. Follicular Neoplasm or Suspicious for a Follicular Neoplasm
    3. Suspicious for Malignancy
    These respectively have the risks of cancer to be about 5-15%, 15-30% and 50-75%

    1. If you have atypia sometimes the biopsy is repeated but it is reasonable to take out the half of the thyroid if there is repeat atypia without a firm diagnosis
    2. If a lesion shows follicular cells you cant tell if it is a cancer or not with a fine needle biopsy (happy to explain this further if anyone is interested) and you should take that half of the thyroid out to confirm or exclude cancer (this is generally the safest option)
    3. And if its suspicious for malignancy... well, I should have to justify the rationale for a potentially curative operation if there is a 50-75% chance of cancer in the gland.

    ...and there is a overtly malignant category for biopsy results too - that is quoted to be 97-99% risk of malignancy (because the truth is you can't be 100% sure until you cut it out).

    The exact operation and the risks involved, the role for lymph node removal, radioactive iodine, chemotherapy, the possible need for screening for related cancers, and an innumerable number of other issues is all individualised to the patient and the tumour characteristics. It takes time to explain these things - even those patients who are open to listening and support a proper doctor patient relationship.

    It saddens and angers me that this person may be heading down the road of delayed management. As has been noted on this site before, thyroid cancer generally has a really great prognosis... but the cure rates are not 100% (there were 116 deaths in australia in 2011). This paranoid attitude is incredibly presumptuous about the reality of the science behind medicine and a 'slap in the face' to all my health care professional colleagues who work bloody hard and long at what they do. I work exclusively in the public system and every week put in many more hours than I get paid. I get paid no more for looking after more people. (And I certainly get nothing from pharmaceutical companies - I'm surgical... we try to fix people so they dont need drugs ;p) We get the job done as best we can... while simultaneously continuing to study for ourselves, do our bit to train the next generation of doctors and try to squeeze proper research into the mix (and I will resist going into what gets sacrificed personally). The system is imperfect and still has adverse events, dodgy practitioners, and unfortunately avoidable bad outcomes - But its the best system we have got that gives the best outcome overall.

    Everyone has the right to a second opinion. Everyone has the right to refuse treatment - but they must be given fair and true information to make and informed decision for themselves.

    Contaminating the world with misguided opinion is unfortunate at best, and I'm glad there are those out there, like those that seem to congregate here, is frankly dangerous at worst.

    Everyone has the right to their own opinion - not their own facts.

    ReplyDelete
    Replies
    1. Well said, Jared. People such as Fox and Gibson cherry-pick the bad things in our medical system (adverse outcomes, rushed consultations by overworked doctors, unpleasant side-effects, even bad hospital food!) and ignore or denigrate the vast amount of good that is done, and the fact that the treatments are supported by the best available scientific evidence. Not wishes, not feelpinions, not idiotic statements on what "nature wants" for us. Evidence.

      As I've said elsewhere on this blog: just because your flight is cancelled, doesn't mean you should go looking for a flying carpet to get you to your destination.

      Delete
    2. Well. Darn. Said., Jared. I too wonder where my partner's pharma kickback money has gone, not to mention recompense for all the nights, oncall, etc, during 13 years of post-qualification clinical practice, specialty training, specialist practice AND a PhD aimed at the entirely self-serving goal of potential immunitherapies and/or vaccines for a paticularly aggressive cancer subset. How dare you, Ian & he attempt to corrupt patients. Watch out. Candice's mum will shirtfront you!

      Delete
  13. (Had to split the rant - apparenlty too many characters :$)

    There are so many other things I want to have a rant about - particular about how I think the harm minimisation approach to this isn't solely about direct confrontation - but of course I have more pressing things to do with my time right now... Thats the other things - there are so many clinical questions that need time and effort to try and answer... instead we have to expend energy and resources re tracing steps (for example - as of last year there have been over 100 studies that show there is no link between vaccines and autism - think of what we could have learned if those 1000's and 1000's of research hours were spent on questions that weren't already answered.

    As I said - rant done for now... Thanks for reading :)

    ReplyDelete
    Replies
    1. (Sorry for mucking the flow of the blog... had to have a crack at spliting my post in different ways for it to come up...)

      Delete
  14. Take 2...

    I have been out of the loop just a couple of days and I have a lot of reading to do to catch up it seems!

    I have been intermittently annoyed by this whole saga, but thankfully overall intrigued and entertained - mainly thanks to this blog and its various wonderfully sensible contributors. But with release of the CBC video (I can't bring myself to watch it yet...) seems to have stimulated a bunch of support... and I'm actually getting angry when I see... "They want to cut my thyroid out just because of "suspicious" cells, not even a diagnosis" post on that FB wall.

    If someone has been told this I think it is most likely they have been given this "suspicous" label for 3 possible results from a fine needle biopsy of a thyroid lesion.
    1. Atypia of Undetermined Significance (or Follicular Lesion of Undetermined Significance)
    2. Follicular Neoplasm or Suspicious for a Follicular Neoplasm
    3. Suspicious for Malignancy
    These respectively have the risks of cancer to be about 5-15%, 15-30% and 50-75%

    1. If you have atypia sometimes the biopsy is repeated but it is reasonable to take out the half of the thyroid if there is repeat atypia without a firm diagnosis
    2. If a lesion shows follicular cells you cant tell if it is a cancer or not with a fine needle biopsy (happy to explain this further if anyone is interested) and you should take that half of the thyroid out to confirm or exclude cancer (this is generally the safest option)
    3. And if its suspicious for malignancy... well, I should have to justify the rationale for a potentially curative operation if there is a 50-75% chance of cancer in the gland.

    ...and there is a overtly malignant category for biopsy results too - that is quoted to be 97-99% risk of malignancy (because the truth is you can't be 100% sure until you cut it out).

    The exact operation and the risks involved, the role for lymph node removal, radioactive iodine, chemotherapy, the possible need for screening for related cancers, and an innumerable number of other issues is all individualised to the patient and the tumour characteristics. It takes time to explain these things - even those patients who are open to listening and support a proper doctor patient relationship.

    ReplyDelete
    Replies
    1. It saddens and angers me that this person may be heading down the road of delayed management. As has been noted on this site before, thyroid cancer generally has a really great prognosis... but the cure rates are not 100% (there were 116 deaths in australia in 2011). This paranoid attitude is incredibly presumptuous about the reality of the science behind medicine and a 'slap in the face' to all my health care professional colleagues who work bloody hard and long at what they do. I work exclusively in the public system and every week put in many more hours than I get paid. I get paid no more for looking after more people. (And I certainly get nothing from pharmaceutical companies - I'm surgical... we try to fix people so they dont need drugs ;p) We get the job done as best we can... while simultaneously continuing to study for ourselves, do our bit to train the next generation of doctors and try to squeeze proper research into the mix (and I will resist going into what gets sacrificed personally). The system is imperfect and still has adverse events, dodgy practitioners, and unfortunately avoidable bad outcomes - But its the best system we have got that gives the best outcome overall.

      Everyone has the right to a second opinion. Everyone has the right to refuse treatment - but they must be given fair and true information to make and informed decision for themselves.

      Contaminating the world with misguided opinion is unfortunate at best, and I'm glad there are those out there, like those that seem to congregate here, is frankly dangerous at worst.

      Everyone has the right to their own opinion - not their own facts.


      There are so many other things I want to have a rant about - particular about how I think the harm minimisation approach to this isn't solely about direct confrontation - but of course I have more pressing things to do with my time right now... Thats the other things - there are so many clinical questions that need time and effort to try and answer... instead we have to expend energy and resources re tracing steps (for example - as of last year there have been over 100 studies that show there is no link between vaccines and autism - think of what we could have learned if those 1000's and 1000's of research hours were spent on questions that weren't already answered.

      As I said - rant done for now... Thanks for reading :)

      Delete
    2. And in the interests of not expecting people to believe me just because I'm saying stuff...

      Reference:
      The Bethesda System for Reporting Thyroid Cytopathology
      Edmund S. Cibas, MD, and Syed Z. Ali, MD
      http://ajcp.ascpjournals.org/content/132/5/658.full.pdf

      There are different ways to characterise the cytology of thyroid biopsies. This is one way (which is the most common in Australia as far as I am aware), and it does have some validation data out there. As with most things it will likely evolve over time to become more accurate by changing, or an alternate system may prove to be better and replace it. Thats the nice thing about not assuming you are absolutely right and interpreting new information critically :)

      Delete
    3. Apologies to Rebecca for rudely unleashing my off-topic tirade before I even finished reading her 'guest post' (was scrolling down the healthycandy FB wall at the same time..)

      You have an insightful and articulate voice that should be heard. The angle from which you approach the subject truly educates me. Great post. Thank you.

      Delete
    4. It is seriously scary to think she may have thyroid cancer that won't get diagnosed. Especially if it is an untypical papillary or follicular cancer or even medullary.

      Delete
  15. Did people get banned at her FB page? I can still comment, but I noticed that my usual compatriots are MIA...

    ReplyDelete
    Replies
    1. And she's deleting comments like crazy, under the guise of removing attacks on other people. She removed one of mine where I just talked about how vulnerable I was at the beginning of treatment, and how easily I could have been led to make poor treatment choices by stories like hers.

      Delete
    2. Ann, my account was suspended (asking for proof of ID) and all my comments have been deleted.

      Delete
    3. Ah. She reported you to FB? I'm surprised she didn't block me as well.

      My only consolation is that even the CBC interview didn't garner her many more "likes" for her page. I don't think her endeavor is going to pick up much traction at this point (I hope).

      Delete
    4. Looks like Violet's account got reported and deleted too. I had PMs from her, but can no longer respond.

      I'm actually surprised it took her this long to lower the ban hammer. I don't think Candice is all that savvy about the internet, despite her extensive presence on various sites.

      Delete
    5. I did not see anyone calling her names or being nasty, but because people were seriously challenging her, she decided to report accounts and ban people from commenting. This is how these people ALWAYS operate. They have no real arguments so they just ban people and delete stuff. Jess Ainscough and Belle Gibson did the same thing. I hope that anyone out there with cancer will question why they do this, and no, it is not because we are "trolls" or "bullies". They call us that to get out of really having to prove their claims. Once you dismiss an "adversary" as not worthy of engaging, it gets you off the hook of being truthful and transparent. I remember the children in elementary school did this a lot, so it is sad to me to see a fully grown adult woman doing it when we are talking about something as serious as medical care for cancer.

      Delete
    6. She removed every comment that asked about where exactly her cancer had spread, so I think it's pretty much a given at this point that she's been lying about that.

      And I don't think there will ever be a "report" coming. All of the comments relating to that topic are also gone.

      Delete
    7. I don't think there will be any evidence either, but at least we have the DM article where she insisted she'd release her records. She can't delete that!

      Delete
    8. I wondered when you'd get the slap, Marina. (And I'm not talking about Candice's mum's invitation to street fight...)

      Delete
    9. She's shown her results to Chris Wark (whose surgery beat cancer, but he doesn't realise that) "confirming her diagnosis, and that the cancer spread after treatment, and that her Thyroglobulin is 0.1 as of 3/13/15."
      That information fits her misunderstanding of the radio-iodine treatment.
      Her planned FAQ will probably follow the same script. You need to understand the delayed effect of radio-iodine to realise she's wrong.

      Delete
    10. I have read that levels below 0.2 are undetectable?, regardless where did this recent test happen? don't tell me she is lying again and going into these evil institutions to confirm their surgery and treatment is still working.
      I suspect she may have an iridologist that has looked into her third eye to confirm her current results.

      Delete
    11. 0.1 is possible as well, it can depend on the assay the lab uses - some are more sensitive than others. In the one I use, 0.2 ng/ml is the lowest threshold.

      The thing is, she very likely has documentary proof with T3N1M0 or T3N1M1, and current lab result can show 0.1. But that formula is stage I or stage II, not terminal, and by now she must know it and is knowingly lying about being given 5 years or "fatal" and Chris is supporting that. Otherwise there would be no problem publishing the proof, as that would destroy the common agenda.

      Delete
    12. And, what I would personally appreciate is for her ex-husband to come forward and give his account on that first visit where she supposedly was told she was looking at a fatal case. She herself said he was there and heard what the friend-of-doctor said, which definitely is not what she claims to have been told - lying plain and simple.

      Delete
    13. I thought it was funny that her stage has changed to "stage 3" in the CDC interview. Still wrong, Candice!

      Delete
    14. No matter what her perception was in 2011 of the initial diagnosis and confusion, now, in 2015, she is just a liar with a business to build.

      Delete
    15. 'This is how these people ALWAYS operate. They have no real arguments so they just ban people and delete stuff.'

      No. This is BGU, and this is why you were reported to facebook. Coz you know - as one of the many relatives and friends of loved ones who have cancer, I stand together with facebook on their truly righteous opposition to pseudonyms. Soz.

      Oh and fair warning. I'll be telling everyone on the BGU page that you were exposing some vague non-person to potential legal action. Because 'we' really are the vanguard of truth and honesty, but deleting people with pseudonyms when you claim to be all about free speech just makes us sound so - disingenuous.

      Delete
    16. A bit ironic that the above was posted by 'anonymous'

      Delete
    17. Word-salad.
      What is a vague non-person? What does that even mean?

      Delete
    18. I am completely confused. Is that comment from Anonymous saying that he/she IS the person running the Belle Gibson Uncovered page? Or...I have no idea actually.

      Delete
    19. Oh thank goodness. I thought I was the only one who needed to request a translation.

      Delete
    20. I am a not a native English speaker, so I had to go and look up what "soz" means: Nonsensical internet slang term for "sorry", used by illiterate morons who for some reason substitute a “z” for “rry”, the latter of which would take an entire quarter of a second to type out.

      Is that the same as "coz"? Are you trying to rhyme here?

      Delete
    21. I have no idea what that babble above from Anonymous/BGU means (Rule 1 in an online forum: if you want people to take you seriously, write clearly), and I love the irony of Anonymous telling us not to be anonymous.

      But in regard to Facebook and its "truly righteous opposition to pseudonyms", I offer the following reasons why someone could justifiably want to be anonymous online, which have nothing to do with the desire to troll:

      1. Some people need to keep their personal and professional lives very firmly separate, in case they are judged or bullied or discriminated against by their employers or colleagues or clients for their interests and opinions.

      2. Some people don't want to be found by ex-partners or other people who have stalked, assaulted or harassed them in the past. Years ago, a women I knew was found by her abusive ex-partner because she used her real name in an obscure online forum. This was back in the early days of the internet, and she thought she was safe. It was a special interest forum, a new interest of hers; he didn't know she was interested in that topic; how could he possibly find her? She didn't realise that with the internet, there is no such thing as "obscure". He simply typed her name into a search engine. I myself got a fright back in the early 1990s, when using Usenet. I posted a slightly embarrassing personal admission on an obscure Usenet forum (nothing serious, merely the sort of funny personal habit they might admit to on "Would I Lie To You?"), then said "Gee, it's a good thing nobody I know reads this newsgroup"), and within 24 hours a colleague had emailed me with "Yes, isn't it?" A friend of his was a regular reader of that newsgroup. I'd never heard of her, but he'd talked about me, so she knew my name. She spotted my post, recognised my name, and forwarded it to him.

      3. Some people want to discuss extremely personal things (such as medical problems, domestic violence, sexual abuse, mental health issues, same-sex attraction, transgender issues, child-rearing or relationship problems) with other people experiencing the same thing, and they don't want every friend, neighbour, colleague and casual acquaintance knowing their private business.

      And those reasons are just off the top of my head. You could probably think of several more.

      My name is Karen. It's my real name. I'm on Twitter too under my real name (at @kcIMT122). I participate in other forums under various pseudonyms for various reasons. But I have a rule: I don't say anything to anyone online that I wouldn't say to their face. It doesn't stop me engaging in heated or snarky debate, but it does keep me honest.

      And I don't put my surname online. Anywhere. Ever. You get my surname privately if I've known you for long enough and I trust you enough.

      So Facebook can jam their "truly righteous opposition to pseudonyms" right up their rectum. Oh, and if I ever meet Mr Facebook in person, I'll tell him that. So I can say it here.

      Delete
    22. I actually suspect the Anonymous post above is an attempt at satire, and that the person who posted it agrees with us. But given that there are at least five readers (including me) who are very confused by it, then if it is satire, it has missed its mark. Mr/Ms Anonymous, if you're reading this, I suggest you have another try.

      Delete
  16. This part of Rebecca's post really resonated with me:
    "And imagine one's last years of life spent hovering over an enema bucket while you slavishly prepare a bloody juice every hour every day of your life"

    Yes. So much yes. Even if it could cure your cancer - which it can't - what a horrible way to spend the rest of your life.

    People talk about how gruelling chemotherapy and radiation are - and they ARE, no question. I know several people who have gone through both. They can be ghastly. In my ignorance, I used to think radiation was the easy option - until one day my sister-in-law, grimacing in pain, took me aside and unbuttoned her shirt to show me her post-mastectomy chest, burned red-raw from radiation. I had never seen anything like it. She was wearing a layer of cling-film under her shirt because she couldn't bear the fabric against her skin. I wouldn't have cared if she'd taken off her shirt and gone topless for the day, but unfortunately we were at a family gathering and it wasn't an option. But it gave me pause: don't underestimate how unpleasant some cancer treatments can be.

    The thing is, though, the unpleasantness is both temporary, and for a good reason. If your oncologist (a real one, not a Mark Simon fake one) has recommended a certain treatment for you, it will be for a finite period and because the best available scientific evidence indicates that it could be beneficial in your case.

    In contrast, the woo-spruikers such as Gerson have NO evidence that their unpleasant treatments are going to work, and apparently you're expected to keep using them forever! If you stop, or even fall short a little - if you fail to administer the five enemas per day or drink the fourteen juices or whatever it is - because it's just too damn hard, then your unchecked cancer is your fault. You didn't commit to the treatment fully enough. What a convenient "out" for the woo-spruikers.

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    1. Yes. Jess Ainscough lost years of her life to incessant juicing and enemas - she said she could hardly leave the house. What a horrible 'welness'. Then they blamed her for leaving the Gerson protocol after 4 years, when her cancer was fungating and bleeding.
      Sadly, prostate cancer patients are often on androgen deprivation hormones for years - until it stops working - despite the side effects, because they're the least nasty way of temporarily stopping the cancer growth. I'm hoping I don't have to go there.

      Delete
    2. Comparing my chemo and rads regimen to Gerson, I would unequivocally choose the transient nausea and fatigue over coffee up my arse and endless juices. I chose not to work because I work in an OR but I would have been OK for an office setting 3 out of 4 weeks a month. Whereas you are housebound with Gerson.

      Delete
    3. If the Gerson claims were true, then I would pick Gerson. After all, you're guaranteed a cure with Gerson!

      Delete
    4. But for the rest of your LIFE, Violet? The coffee enemas, and consuming practically nothing but vegetable juices for the rest of your life?

      Me? No. Just - no. Not even if guaranteed a cure. Briefly - maybe. But forever - no.

      If ever I'm unlucky enough to be diagnosed with cancer, I don't want my friends offering vegetable-sludge smoothies and coffee squirts up the arse and magic pineapple cures and and quotes about rainbows and staying strong and healing powers within me and advice to Just Be.

      I want you to come around to my place and say "Cancer? That is one mean bastard. Can you eat without throwing up? Good. I've brought all your favourite foods: sashimi and avocado and creme brulee and mango and raspberries and dark chocolate. Let's sit on the sofa and eat it and watch the entire three seasons of Black Books and laugh ourselves stupid."

      I'm not deluding myself that this will aid my recovery in any way, but if I do end up dying from the cancer, then eating my favourite foods and laughing with my friends is not a bad way to spend what's left of my life.

      Delete
    5. I really must have sailed thru my chemo & radiation it just wasn't that awful. I felt like I had a bad hangover a lot of the time which fortunately I had been training for for years. Minor skin breakdown under the boob, which I managed. The adjuvant therapy was the worst I had to dick around with that for awhile.

      Delete
    6. Karen - we must become best friends immediately.

      Delete
    7. Janedj, you bring the food, I'll supply the DVDs.

      Amanda, sounds like you were lucky. Everyone I know who has had chemo and/or radiation therapy has had a terrible time with either one or the other. Or maybe the remedies to alleviate the side-effects, such as anti-nausea drugs, are improving?

      Delete
    8. Granisetron for surgery, neulasta injection on day of chemo to prevent neutropenia, breast care nurses to assist with rads skin care. I think it's more a product of the centre of excellence I was treated at in Australia.

      Delete
    9. That should read graniseteron for nausea

      Delete
  17. This is related to the purity issue that Rebecca discusses: even your hair is not safe. A series of tweets by me, that I thought might give you a chuckle.

    Me And My Toxic Hair: https://twitter.com/kcIMT122/status/588607314027905024

    ReplyDelete
  18. Jess Ainscough ended up making hundreds of thousands of dollars from her wellness empire, and lying about her cancer's growth. I think she started with a misunderstanding and no nefarious intent, but became deceptive to protect her wellness business when she discovered she had misled herself - all those photos of a healthy looking Jess taken only from the right side.
    CMF is in the best position - cured by surgery + radio-iodine and sincerely misunderstanding it.

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    Replies
    1. I think you are right about the trajectory of Jess Ainscough's "Wellness" empire - I don't think she started out to deliberately mislead others (some of whom definitely asked her for advice on "treating" their cancers only to later have their correspondence redacted from the blog). I'm guessing that when you have such a large "tribe" cheering on each and every thing you say, even if it is extremely inane or 'out there', in addition to having become accustomed to the fiscal "abundance" she'd managed to accrue it would become very difficult to back away.

      I don't understand the ties between Forleano's B-School and the other affiliates she had either - maybe it was literally impossible to leave the "community" even if she had wanted to for some legal or pseudo-legal reasons? Of course, that's mere speculation from someone who really doesn't want to delve into the murky quagmire of largely unregulated businesses which prop up the wellness industry...

      Also, CMF does seem to be in a good position there, doesn't she? Having read her Facebook page - it seems clear to me that she genuinely doesn't understand how the treatments she has been fortunate enough to have had (provided gratis & in a timely fashion) even work. It's unfortunate that on social media those with the loudest voices seem to garner the most attention.

      Delete
    2. To further the speculation, I think one of the worst aspects of the whole B-School style of blogging is the forced positivity/images/writing. I do not for a second believe that Jessie was such a shiny happy green juice guzzling blogger until the end. It is an image of death and suffering that just does not fit with Marie Forleo marketing. No matter how genuinely light and pleasant person Jessie was (and I believe she must really have been a very delightful, warm person), she must have had a harrowing and physically and emotionally painful experience, she must have understood at some point she was about to die soon. Many of the photos of those so-called tribe friends are from affiliate marketing events where they just promote and photo-shoot each other in sunset on the beach, in flowery dresses with unnatural smiles and styled food. I wonder how many of those soul sisters, tribe members were actually there for her in any of the ugly moments, how many of them had to change dressings on her fungating, smelly, bleeding tumor, spent time with her in the hospital during radiation or before death apart from taking pictures to use for their own promotional crap.

      B-School circle of "positive", business building bloggers, naive MLM victims/exploiters without qualifications does not allow for any genuine feelings, genuine suffering or genuine thinking. If you actually happen to have true problems, you will have the white light and kale juice stuffed in your throat until the moment you die, otherwise you will harm Forleo's brand with a death or disease that does not have the right Instagram filter. It is just incredible cynicism.

      Delete
    3. I think the reality of these people is pretty clear on Candice's page. One minute it's all hearts and love, the next minute it's 400 exclamation points as she tells people to get a life and go outside more often (and her mom calls people bitches). Ugh. So horribly fake.

      Delete
    4. Yes, Auma, the negation of actual suffering is probably one of the most infuriating things about this whole "wellness/B-school" schtick, for me anyway. I don't buy the story that a terminal cancer patient was sitting up "giggling and drinking green juice right up to the day of her death" either.

      Any experiences which don't tally with the "positivity" narrative have to be left out. You can't really market misery in a way which enhances sales, can you? Also, to answer your question about how many of her fellow tribe members were on hand to help with changing the bandages on the wretched, fungating tumour under her arm during the last 10 months/year of her life - I'm guessing the answer is very few, if any. I mean, that's just "icky!" and according to the magical thinking encouraged by that lot, probably the poor woman's own "fault" for not thinking positively enough or some similar rationalization. The use of 'The Secret' (which is already absurd) ad absurdum seems to be the order of the day philosophically for these folks & it really makes me quite furious.

      It also explains the bizarre situation over on the HealthyCandyme page - all hearts, exclamation marks and love while telling "trolls" aka people asking reasonable questions of someone who chose to launch herself into the public sphere to basically get lost.

      Delete
  19. I have been following this young lady for awhile now. She has had 4 lots of surgery for Ovarian cancer and then turned her back on conventional treatment. She doesn't come across as aggressive as others but the woo I have seen on her page is frightening. She is now off to Mexico which is publicly funded as was her woo woo treatment at home. As she isn't making money by selling or writing books, I just wonder when the line is crossed. Public funds are being handed over to all those charlatans she seeks advice from and now this clinic in Mexico which I am familiar with is run by Dr Patrick Vickers. He is featured regularly by Chris Wark. These snake oil paddlers make me so very angry preying on desperate people like Lauren. I wish her well and the people behind the clinics...not so much!
    https://www.facebook.com/Youareyourhealer?ref=ts&fref=ts


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    1. Oh my goodness, that poor woman. I can't imagine receiving such a terrifying cancer diagnosis (especially at such a young age), then being suckered in to believing that I have both Hashimoto's AND Lyme Disease! Seriously, what are the chances that a conventional doctor would dare to scare an already vulnerable patient like that? She has to have been told the latter two by a quack of some sort in the first place.

      It's such a tragic situation... As you say, at least Lauren isn't exploiting it by publishing a bullsh*t book or hawking her story to every tabloid on the planet, but to be so desperate that the sharks in Tijuana look like a good option must be truly terrible. It makes me really grateful to live in Australia - despite the cuts the current Federal Government is making to the Public Health system here.

      Delete
  20. So - Belle Gibson has picked the softest of pillows to fall on with the announcement of her "tell all" interview with - wait for it - Australian Women's Weekly. https://www.facebook.com/WomensWeeklyMag/posts/10152938490293621

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    Replies
    1. That's going to be interesting. I was "interviewed" via email by a reporter from that publication. I wonder if they will use the comments of a real cancer patient (aka me)?

      Delete
    2. I was interviewed too but I do not know if they will use anything from me. It is being promoted as a Belle Gibson tell-all, so who knows?

      Oh, that reminds me. The journalist asked that we not publish the full article here and I told her that we would not. So please, if you wish to read the article, then go ahead and purchase the magazine. I found a website in the US you can order it from too.

      Delete
    3. The AWW's website: http://www.aww.com.au/latest-news/in-the-mag/belle-gibson-speaks-out-20243 states that she received no payment for the interview. I believe them, but they did want her cooperation, and in order to get that, I bet they went softly-softly. I hope I'm wrong, but I doubt we'll find any hard-hitting questions from the interviewer or revealing truths from Gibson in this interview.

      Look at it from Gibson's point of view: she has nothing to gain by coming clean in an unpaid interview. Her name is mud already, and I very much doubt any truthful version of events will redeem her. Only genuine remorse might, and from the hint the AWW has dropped so far on their website - "her belief that she has been hard done by" - we're not going to get that. She'll just massage and stretch and contort her story one more time, brushing aside the inconvenient bits and trying to make herself look like the victim of us nasty bullies.

      Ironically (given that I don't think people should be rewarded for their misdeeds) the AWW might get more honesty out of her if they DID pay her. "We'll pay $x, but only if you come clean. If you give us BS and we can prove it's BS, the deal's off."

      Delete
    4. BTW, the reporter told me that they will be doing a follow-up story on this phenomenon in general (wellness bloggers and their claims to be able to recommend what is essentially medical treatment). I really hope they do.

      Delete
  21. Hi Violet, Shirley here. I'm still on Candy's FB page - for now. It won't be long before I am blocked too. When did she block you? Her behaviour is becoming more and more bizarre and desperate as time goes on. But surely, there must be some sort of regulating body or authority that she can be reported to? I'm just so over it. She's her own judge, jury and executioner. I find it ironic that she bans people for attacking her followers but when these same followers attack the rest of us - that is allowed. She is such a hypocrite. I'll keep posting to her page and asking for the evidence for as long as I can before she blocks me too.

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    Replies
    1. That is the problem - there is no regulating body, and it is why I find our work here to be so critical. We just need lots of people out there really actively questioning people like CMF. There were people questioning Jessica Ainscough, but there was still a bit of hesitation then. Personally, I'm over it. I am willing to look a little "hardcore" if it means saving a cancer patient's life.

      Delete
  22. She sounds like she has been brainwashed but a cult, they are the chosen ones, the enlightened we we are all just living a lie. She is also getting quite nasty. LOTS OF SWEARING AND CAPITAL LETTERS!!! So much for love and light.

    ReplyDelete
  23. Her supporters are truly wacky. I don't think she has a single person commenting who doesn't come across as unstable, at least based on their FB profiles. I have a feelings she's going to really struggle to attract anyone to her "business" (which she claims will not make her a single penny anyway).

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