HCCC

Don’t Ask the AVN, Take Your Child to a Hospital

Today, there has been another instance of an adult concerned for a child’s wellbeing asking the AVN for advice – not a parent this time, but an aunt – and the AVN not issuing an appropriate recommendation to have the child assessed by medical professionals.

It began with this post, from Robert Catalano, who proclaims to be the President of the American Natural Healthcare Society and has authored a book titled, “The Great White Hoax, The Suppressed Truth About the Pharmaceutical Industry, American Freedom vs, Medical Power”. It appears that Robert’s description of himself as an “anti-medicine activist” is one of the few and far between moments of accuracy he experiences in his writing. Judging by this extract (and I cannot imagine how the omitted text could possibly redeem what is written here), his book is a conspiracy heavy diatribe of pure bulldust, as is this post:

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The AVN seem to be allowing a little more disagreement to be visible on their Facebook page than usual at the moment. A discussion ensued, with the AVN supporting Robert’s claims and trying to promote a book that is sold on the AVN’s website, “Diabetes Without Drugs” by Suzy Cohen.

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The uncensored conversation didn’t last long though – the next comment, in which the author suggests that Robert may not be as well informed about diabetes as he claims to be (and includes a copy-paste of accurate information), was made by one of the AVN’s own courageous anonymous admins, CP. It has since been deleted.

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Next though, was the sort of comment which makes my blood run cold (in a metaphorical sense, on the off chance that somebody thinks I’m having a dreadful reaction to the aspartame that was in a cola I drunk yesterday). It filled me with dread, in any case.

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Again, an adult responsible for a child who is described as being unwell, asking for advice on the AVN’s page.

By this point, Robert is no longer participating in the conversation. Several conscientious and sensible commenters rightly urge Jess W to get her nephew to a hospital. The AVN admin (who is not identifying him or herself at this point) ignores Jess’ comment and instead opts to debate the legitimacy of natural diabetes management and cures with Hayley A.

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Jess W returns with a direct question to the AVN. The AVN admin’s reply admonishes her for not having the time to learn about ways to help a 4 year old child and suggesting that Jess’ priorities are not in the right place, completely overlooking the fact that Jess has stated that her nephew is very unwell, difficult to rouse and has an extremely high blood sugar level reading.

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This is the time to be telling Jess W to call an ambulance immediately, not tell her off for not handing over $35, waiting for the AVN to ship the book to her (given their poor performance in delivering their magazine, “Living Wisdom”, which their subscribers pay for, there’s no precedence set for the book to arrive promptly) and reading 432 pages on the dietary management of Type 2 diabetes.

What Jess W is describing needs to be diagnosed by a professional in a clinical assessment – if it is indeed diabetes, it is extremely improbable that a four year old would be facing Type 2. Type 1 diabetes cannot be cured, nor can it be managed through diet alone. Fastidious monitoring of blood glucose levels and administration of insulin are required in order to avoid the person with diabetes developing ketoacidosis, a life threatening condition. From Diabetes Australia’s website:

Ketoacidosis is a serious condition associated with illness or very high blood glucose levels in type 1 diabetes. It develops gradually over hours or days. It is a sign of insufficient insulin.  Most cases of ketoacidosis occur in people with type 1, it very rarely occurs in people with type 2.

Without enough insulin, the body’s cells cannot use glucose for energy. To make up for this, the body begins to burn fat for energy instead. This leads to accumulation of dangerous chemical substances in the blood called ketones, which also appear in the urine.

This is a serious medical emergency and can be life threatening if not treated properly. If these symptoms are present, contact your doctor or go to hospital immediately.

It is also worth noting that “Diabetes Without Drugs” (preview viewable here) contains Quack Miranda Warnings both on the inside cover and on page xii of the introduction, urging readers not to act on the advice contained within without consulting their doctor.

Back to the comment thread, the AVN admin remains anonymous, accuses Hayley A of rejecting the suggestion that diabetes is naturally curable merely because that suggestion is coming from the AVN and then links several YouTube videos to bolster their claims.

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I am not certain what the now missing comment from Karam S was that the AVN admin is replying to in the last comment – I’m vigilant with the screencapping, but I did spend some time taking my kids swimming this afternoon.

Update: The helpful and vigilant Dr Rachael Dunlop has supplied the missing puzzle piece, which is indeed quite puzzling in itself:

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I will admit at this point that I was having doubts as to whether Jess W’s claims were authentic. Not enough to feel that her comments didn’t warrant attention and reasonable responses, but I did entertain the possibility that she was somebody out to demonstrate that the AVN, (who I will remind you now are recognised as a health care provider by the HCCC), provide unconscionable and dangerous advice and misinformation to those who believe them to be a credible source of information.

Thankfully, mine (and many others’) suspicions were found to be within reason. Jess W appeared on SAVN’s Facebook page, knowingly breaking her own ruse to reassure us that there was no sick child whose caregivers were relying on the AVN for advice.

I would like to note that before this afternoon’s events, Jess W was not known to me, nor to any other people involved with SAVN that I saw discussing the matter in public. To the best of my knowledge, she acted independently.

Meryl Dorey posted this when she discovered that Jess W’s story was not real:

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(Pardon the confusing timestamps, Craig D’s comment was, unsurprisingly, deleted)

Note that Meryl’s confusing disclaimer has made an appearance again.

The second comment from an AVN admin is unattributed, so I assume that it came from one of the other admins of the AVN’s Facebook page. To the best of my knowledge, there are four or five admins other than Meryl, who go by the monikers RR, B52, SB, CP and the recently appeared B9. While I support the right of internet users to anonymity and pseudonymity, I find it disturbing that people speaking on behalf of a recognised health care provider do so without declaring their credentials and affiliations.

SAVN admin Kate has posted an open letter to the anonymous AVN admin who made the second comment on the screencap above. Please take a moment to read it here.

As always, there is much considered and varied commentary on today’s events on Stop the Australian (Anti-)Vaccination Network’s Facebook page.

The thread on the AVN’s page has disappeared and reappeared. At the time of writing, it is viewable (and still being commented on) here.

The ethics of Jess W’s conduct are certainly questionable. She did perpetrate a hoax which played with my emotions very effectively and caused me some anxiety. I spent this afternoon imagining a boy of four, much like my own beloved son, listless and unresponsive while his family made the dreadful mistake of seeking advice from the AVN instead of taking him immediately to a hospital. It made me feel ill with worry, helpless and incredibly sad – and I’m sure many others felt similarly, just as we’ve felt reading about the unvaccinated baby exposed to whooping cough and the young boy suspected to have measles whose mothers also recently posted on the AVN’s Facebook page seeking help. I, personally, cannot condone Jess W’s actions, nor endorse such tactics. While they were effective in demonstrating the AVN’s response to a caregiver of a sick child, I do not feel that the lie was worth the outcome. Conversely, I am still finding myself thankful that the AVN’s response wasn’t being demonstrated with a real child’s life at risk.

While thankfully this sick young boy did not exist, he could have. Even if the AVN admins had their suspicions that Jess W’s story was not true, was it really worth ignoring then admonishing her if there was even a tiny chance that a child’s life was at risk? Why did the AVN admins cling so tightly to their need to dispense anti-medicine tropes and keep toeing the party line when they were clearly out of their depth? Why did they refuse to urge Jess W to get her nephew to a hospital?

He could have been real and this could have been tragic. I am terrified that the next time someone comes to the AVN for advice on an ill child, it will be.

The AVN do not deserve the responsibility that they are trying to shoulder. Likewise, trusting parents who are seeking health advice for their children do not deserve the dangerous lies of the AVN.

Previously on this topic:

Don’t Ask the AVN, See your GP

The AVN Issues a Quack Miranda Warning

Further reading:

The day the AVN thoroughly rustled my Jimmies by landlockedseaotter, a great blog post on today’s events which further addresses the claims made by Robert Catalano and the AVN about diabetes cure and management (as well as the AVN’s behaviour).

The AVN Issues a Quack Miranda Warning

At the beginning of this month, I wrote about two instances I’d observed where the Australian (Anti)Vaccination Network provided advice to parents who came to them asking what to do in cases of suspected vaccine preventable disease or exposure to vaccine preventable disease. You can read the blog post here.

When these posts appeared on the AVN’s Facebook wall, there was discussion on Stop the Australian (Anti)Vaccination Network’s Facebook wall regarding the legality of the AVN providing medical advice. Some participants in this discussion stated that they were considering submitting complaints to the New South Wales Health Care Complaints Commission.

Complaints to the HCCC (and to the New South Wales Office of Liquor, Gambling and Racing, who deal with granting fund raising licences) have been submitted in the past by both persons associated with SAVN and others. The most notable complaint thus far led to a hearing in the Supreme Court of New South Wales, in which the HCCC was found to be unable to issue a public health warning against the AVN or require them to place a disclaimer on their website due to a loophole in the legislation. A clear summary of what occurred can be found in this article by Rick Morton on Mamamia. While the outcome of the court case was a great disappointment for those who feel that the AVN should be accountable for the misinformation they spread, we are a persistent lot and I look forward to eventually reporting some very good news as a result of the efforts of my esteemed colleagues.

Understandably, the AVN’s president does not like these complaints. She incorrectly labels them as ‘vexatious’ (these complaints are not intended to cause annoyance, they are intended to assist government bodies reduce the danger the AVN presents), feels that we waste the time and resources of governmental bodies (who exist to deal with precisely what is being submitted) and considers complaints regarding the AVN to be a form of personal abuse and harassment.

After learning that she was facing another round of complaint submissions following SAVN noticing that she was providing dangerous medical advice to parents, Meryl Dorey issued the following announcement on the AVN’s Facebook page.

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The disclaimer here is equivalent to a Quack Miranda Warning, being a statement issued by charlatans to avoid legal action should anyone believe what they have to say or purchase what they are selling. A typical Quack Miranda Warning from the US reads:

“These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure or prevent any disease.”

Similarly, Meryl’s disclaimer above attempts to absolve her of any responsibility for what she (or others speaking for the AVN) are saying.

Phil Kent on SAVN’s page paraphrased it wonderfully, stating that:

“The pseudoscience I promote personally and as the president and spokesperson of my organisation do not represent my personal views and opinions or those of the organisation I represent.”

It would be interesting to hear the opinion of an expert in law as to whether Meryl’s disclaimer is actually sufficient to provide her or the AVN with any legal protection, given the high standard of conduct expected of an HCCC recognised Health Care Provider.

When I first read Meryl’s announcement about her disclaimer, I wondered whether she was being at all wise in calling people who believed that she was giving advice (rather than ‘sharing information’) “stupid”, given that she may well have been insulting those who will eventually be making decisions regarding the AVN’s future (not to mention the number of esteemed folk who contacted me after I wrote about the AVN’s advice giving, aghast and appalled that they were doing such a thing).

Calling complainants “bastards” did not strike me as wise either, though the potential repercussions may be more substantial than I initially thought, given Section 98 of the 1993 Health Care Complaints Act, which states,

98 Offence: intimidation or bribery of complainants

(1) A person who, by threat, intimidation or inducement, persuades or attempts to persuade another person:

(a) not to make a complaint to the Commission or a professional council or not to continue with a complaint made to the Commission or a professional council, or

             (b) not to have discussions with, or take part in proceedings before, the Commission or a professional council concerning a complaint or a matter that could become the subject of a complaint,

is guilty of an offence.

(2) A person who refuses to employ or dismisses another person, subjects another person to any detriment, or harasses another person, because the other person:

(a) intends to make a complaint, has made a complaint, or has had a complaint made on his or her behalf or otherwise concerning him or her, to the Commission or a professional council, or

(b) intends to take part, is taking part, or has taken part in any discussions with, or proceedings before, the Commission or a professional council concerning a complaint or a matter which could become the subject of a complaint,

is guilty of an offence.

A (since banned and deleted) SAVN commenter on the AVN’s Facebook page questioned whether Meryl was calling complainants “bastards”. Her reply:

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“I wasn’t referring to complainants – I was referring to people on your page who”… “file vexatious complaints”.

Indeed.

The full thread is viewable here, including obligatory cries of ‘sheeple’ and many deleted comments.

Back to the HCCC case that went to the NSW Supreme Court that I mentioned earlier, where the HCCC was found to be unable to demand that the AVN place a disclaimer on their website. That disclaimer is as follows:

1. The Australian Vaccination Network’s purpose is to provide information against vaccination in order to balance what it believes is the substantial amount of pro-vaccination information available elsewhere.

2. The information provided should not be read as medical advice; and

3. The decision about whether or not to vaccinate should be made in consultation with a health care provider.

The AVN put a lot of effort and money in to challenging the HCCC in the Supreme Court. Aside from the acknowledgement that the AVN is anti-vaccination (they prefer to frame themselves as being ‘pro-choice’ and in turn highly inaccurately claim that their critics are ‘anti-choice’), the AVN’s self-imposed disclaimer covers all ground that the HCCC’s disclaimer did… and it is now being attached to each of the AVN’s blog posts and relevant Facebook comments.

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It’s a small victory, but I’m counting it as a win. I’m sure that there are many more to come.

Further Reading:

Quack Miranda Warning – Rationalwiki

Don’t Ask the AVN, See Your GP

There have been a couple of rather alarming posts on the Australian (anti-)Vaccination Network’s Facebook wall recently, from parents who suspect that their child has been infected with or exposed to a vaccine preventable disease.

Here is the first, in which a parent suspects that her son may have measles:

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My immediate reaction upon reading this was to urge the poster to get their son to a doctor to have the diagnosis confirmed and appropriate treatment suggested, but as I am not welcome on the AVN’s Facebook page, I had to watch from the sidelines as the following unfolded.

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The AVN admins downplay the seriousness of measles, do not urge Peta R to see a doctor and accuse those commenters who encourage Peta R to seek proper diagnosis and appropriate treatment of fear mongering.

Meryl Dorey herself advises Peta R to not panic, but “go with it – celebrate the fact that if he has measles, he will never get it again and his immune system will be better for it.”

This is at least logically consistent on one level – Meryl truly does seem to believe that measles is not only benign, but a “Gift from the Goddess” (see this excellent post on Losing in the Lucky Country outlining Meryl’s views on measles). I’ll also point out again that the AVN sells a delightful children’s book titled “Melanie’s Marvellous Measles”, which has been written about rather eloquently on PEI Curmudgeon’s Blog.

Unfortunately, as is generally the case on information regarding vaccine preventable diseases, the AVN have it wrong. Measles causes people to feel very ill, up to one third of people with measles develop complications (such as ear infections, diarrhoea and pneumonia), around one in a thousand develop encephalitis (source: NSW Health Measles Fact Sheet).

While it is true that many cases of measles cause no long term damage, this is not a safe assumption to make of all cases of measles, particularly when no medical professional has assessed the severity of the symptoms, discussed management with the caregivers and prescribed a treatment plan.

Taking a step back though, the above advice was being provided without a confirmed diagnosis of measles. Peta R’s son could have had a different viral rash, or something else entirely.

Fortunately, Peta R did take her son to the doctor and it was confirmed that he did not have measles. I am thankful that she made the decision to seek expert assessment and that her son was okay – following the AVN’s advice, this story could have had a much more distressing conclusion.

The comments on this thread continued (screenshots of full thread are available here – please see ‘Further Reading’ for information on ‘homeopathic immunisation’), when somebody noticed that there was discussion on Stop the AVN’s Facebook page on the ethics and legality of the advice being provided by the AVN to Peta R, and whether it was worthwhile reporting to the HCCC. In response to this, one of the AVN’s admins posted the following:

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Here, courageous anonymous AVN admin RR makes light of SAVN’s concerns that a child’s life may be put at risk due to their negligent advice to Peta R.

The full thread is viewable here (and in response to the anti-fluoride comments, here is an excellent article on concerns about the safety of fluoridated drinking water by Science of Mom)

The inappropriateness of comparing a small child with a suspected case of measles with RR’s imaginary headache aside, (which, incidentally, I’d advise she saw a doctor about if it persisted, was accompanied by unusual symptoms or concerned her at all), this seems to suggest that the AVN don’t feel that they have any more weight behind their advice than somebody’s layperson neighbour. Perhaps they don’t – they certainly lack the expertise and standards of ethical conduct to be giving health advice. The problem though, is that the AVN represent themselves as having expertise in the fields of healthcare and vaccination. They are recognised by the HCCC as a Health Service Provider and they have been granted permission to fundraise by the OLGR as an organisation who provide educational services. As such, I think that it is fair to expect them to conduct themselves with the responsibility that that entails – which, in this case, should have been to urge Peta R to take her child to a doctor.

Here is the second recent instance of a parent asking the AVN about her child’s health. She is certain that her partner has whooping cough and they have an unimmunised four month old infant who has been exposed. This time, the parent has worded her post so that she is not specifically asking for advice on her child’s case – she requests anecdotes from people who have experienced similar situations.

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This one is chilling.

I noticed that shortly after this was posted, Facebook was saying that one comment had been made, but none were visible. This is generally a sign that a comment has been deleted, which suggests that an AVN admin was present to delete a comment, but chose not to answer Maree P’s question.

An hour and a half later, this reply appeared, from a newly created Facebook account (suggesting that Charlotte J is not one of the AVN’s regulars, or is posting from a pseudonymous account):

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This advice is sensible – and the suggestion that Maree P take her child to a doctor is precisely what the AVN should have said instead of deleting a comment and remaining silent. Mercifully, this comment seemed to have been made after the admins had logged off for the night, so it remained undeleted and without the AVN’s derision until morning.

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Tristan W is a regular commenter on both the AVN’s Facebook page and blog. I don’t know whether he assumed that Charlotte J was associated with a skeptic group or was just skeptical of the AVN’s position on vaccines and healthcare, but he often uses the term ‘skeptic’ as one of derision (as do many core AVN members). I’ve never understood it – to my mind, to be anti-skeptic is to be against critical thought and analysis and the pursuit of truth.

The suggestion that somebody stating that an unimmunised infant who has been exposed to whooping cough is in danger and that the parents should seek medical advice is fear-mongering and causing undue panic is, I believe, inaccurate. There are few non-confronting ways to tell a parent that their child needs to be assessed by a doctor as soon as possible, Charlotte J’s plea was emotive but not hysterical, nor an overreaction to the situation described. If it needs to be stated, whooping cough is an incredibly dangerous illness, particularly to very young babies. Whooping cough can kill one in 200 babies who catch it, between 2008 and 2012 eight precious babies have died in Australia (anecdotally, I know of another tragic loss since the article linked to was written).

I find it quite bizarre that the AVN and its supporters are so ready to call those who disagree with their dismissive attitude toward obtaining proper diagnosis though comprehensive clinical assessment from a qualified health care professional fear-mongers and panic merchants, given their own propensity to disseminate rather alarmist (and highly inaccurate) claims about vaccines causing autism, cancer and death. Indeed, there are alarmist and inaccurate claims made by Meryl Dorey in the above comments regarding antibiotic use.

Meryl’s position on whooping cough seems to be shifting – she now concedes that it can be fatal, an assertion at odds with her previous infamous statement made in April 2009, “You didn’t die from it 30 years ago and you’re not going to die from it now.” (the context of this quote is outlined in this post on The Skeptic’s Book of Pooh Pooh, and its veracity is examined here on A Drunken Madman’s blog). Incidences of death due to whooping cough are something Meryl has struggled with repeatedly in the past – Reasonable Hank demonstrates further inconsistencies with Meryl’s statements here.

In the comments above, Frankie M makes some very reasonable and appropriate points and is attacked. It makes me wonder how many of the AVN’s supporters (or potential supporters) are criticised and banned for questioning the position and responses of the AVN.

Credit where it is due though, Meryl did advise Maree P to take her child to a GP, albeit not with much urgency. I very much hope that Maree P did see a doctor and that her child managed not to contract whooping cough. This thread was deleted from the AVN’s page, so I have no further news.

I’ll wind up this post with a response to a comment on admin RR’s thread by Peta R:

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Indeed, our opinions are our own – some hold a lot more weight than others though; personally, I’m very comfortable with trusting the experts’ opinions when it comes to matters too complicated for non-experts to adequately assess (see: Further Reading).

As for why anyone would pour such time and energy into something they disagree with – to put it very simply, it is because the AVN can influence parents to put their (and others’) children’s lives at risk by refusing vaccinations. Tragically, I imagine that many of the AVN’s core members and supporters feel the same way – that they too are fighting to protect the safety and wellbeing of children. Some of their intent is perhaps noble. Sadly, this has no bearing on the fact that they are wrong – wrong about the facts surrounding vaccine preventable diseases and, by my estimation, wrong in their belief that it is ethically acceptable to downplay the importance of seeking professional medical advice when a child is suspected of having or has been exposed to a harmful and potentially lethal disease.

It is unfortunate that anybody would consider the AVN to be an appropriate source of advice and information when their child is sick. While the AVN represent themselves as knowledgeable on matters of health and vaccine preventable diseases (despite their lack of training, association with any regulatory body or adherence to an ethical code of conduct), they assume a great responsibility to those who seek their advice. In downplaying the seriousness of vaccine preventable diseases and being dismissive of the importance of seeking the opinion of medical professionals, it is easy to imagine the AVN finding themselves responsible for some very tragic consequences in the future. The AVN must be held to account.

If you would like to become involved or show your support for those opposing the AVN’s conduct, you are welcome to visit and join Stop the Australian (Anti)Vaccination Network on Facebook.

Update: As a result of complaints regarding the AVN’s conduct outlined in this post, the AVN have issued a Quack Miranda Warning. I have written about it here.

Update: Here is another case of the AVN failing to urge the caregiver of a sick child to take them to hospital.

Further Reading:

Health Information and Health Products Online Fact Sheet – Better Health Channel

Measles Fact Sheet – Better Health Channel

Whooping Cough (Pertussis) Fact Sheet – Better Health Channel

Homeopathic Vaccine Regulation – La Trobe University News

Homeopathy and Vaccination Fact Sheet – National Centre for Immunisation Research and Surveillance

No, You’re Not Entitled to Your Opinion – a brilliant article by Patrick Stokes on the false equivalence between experts and non-experts promoted by giving all opinions equal merit. Seriously, if you’ve not read it, do. The comments are fascinating and there are special guest appearances by Meryl Dorey and other prominent AVN supporters.

An Open Letter from Toni and David McCaffery – the link that Charlotte J posted, two amazing parents raising awareness of the dangers of whooping cough after losing their precious daughter Dana.