censorship

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’s Hypocritical Culture of Censorship

Last weekend I was reading through some comments on the Australian Vaccination Network’s blog (here), when I noticed the following comment from Meryl Dorey in response to somebody expressing frustration with the difficulty they’ve experienced when trying to engage in a discussion on the AVN’s blog.

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“Comments are only withheld if they are abusive, harassing or for reasons such as those.”

This has not been my experience when I have tried to enter into discourse with others commenting on the AVN’s blog.

Initially, I thought that perhaps Meryl had a policy of not allowing me to comment because she finds what I say here, on Stop the Australian (Anti)Vaccination Network’s Facebook page and on Twitter objectionable.

A few weeks ago, Meryl posted a blog entry titled “Hate, Threats and Cowardice”, in which she attempted to link anonymous abusive emails she had received to SAVN. Despite my expectation that it would be removed, I decided to have a go at posting a short comment questioning whether Meryl’s assertion that you can judge somebody by the company they keep could also be applied to the AVN (who keep some rather dubious company – AIDS deniers, hateful homophobes who attempt to incite violence, those who harass grieving families [1, 2] and the reprehensible Erwin Alber to name but a few).

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To my surprise, not only did Meryl let my comment past moderation, she replied! Frankly, I was pleased – I spend a lot of time reading what the AVN have to say without any means by which to engage, question or ask for clarification. I’m also quite keen on understanding what makes Meryl and her supporters tick and engaging in discussion with them gives me a greater opportunity to do so than just watching from the sidelines.

Encouraged, I replied to another commenter:

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And also to Meryl:

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Alas, neither of these comments were approved for publication.

I have been trying to work out why these two comments were deemed unacceptable. This is why I was most interested when Meryl posted her statement last weekend on her moderation policy. I asked her if she could further clarify her terms, to give me the best possible chance of respectfully engaging with her and her supporters:

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I understand that Meryl was away on a seminar in Canberra last weekend, so I have waited patiently for her return to see whether she would reply to me. It has been almost a week now and I know that she has been online attending to AVN business, as she has posted on the AVN’s Facebook wall. I sent her a polite message on Twitter earlier today letting her know that I was hoping to hear from her and asking whether I should expect a response:

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So far, nothing. I will update this post if my comment is removed from limbo and either published and responded to or deleted.

Update: My comment was approved and replied to just before 9am the morning after I published this blog post (17/11/2012). Meryl’s reply can be found here, my reply to her will either be found in the same comment section or over here when Meryl decides whether to approve it or not.

I think that it is quite reasonable to wonder why I’ve bothered to demonstrate that the AVN censor comments on their blog to the degree that they do. Taking a look at their Facebook page, it is apparent that the admins are frequent users of the ban hammer – most long comment threads have at least a few comments missing, the awkward and confusing one-sided conversations and the comment totals that don’t match the number of comments visible are a giveaway. Unofficial figures suggest that people banned from the AVN’s Facebook page are upward of 300 (I suspect that this is a conservative estimate, given the number of people likely banned who either do not know of the Facebook group or are not interested in joining). Even some of the AVN’s supporters are cautiously speaking up:

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And you know, I don’t think that it does matter in and of itself. The AVN have every right to ban and censor whoever they like, be it because they feel threatened or abused, because they simply don’t like what somebody is saying or because they object to someone’s fashion sense (I jest). Likewise, there is no onus on them to be consistent with either the content or individuals that they’re happy to let through moderation on any given day. The AVN’s blog and Facebook page are to do with as they wish.

What does matter to me though, is that the AVN continually represent themselves as champions of free speech, as the underdogs who others (being SAVN and The Australian Skeptics) are trying to censor and suppress. It strikes me as incredibly hypocritical to espouse free speech, transparency and open debate while not allowing it (or admitting to the fact that they don’t) on their own turf, nor giving others the opportunity to participate by stating some house rules and sticking to them.

The AVN do not deserve the anti-censorship mantle they attempt to assume.

If their influence wasn’t so dangerous, I would care a lot less. However, the AVN spread harmful misinformation which can endanger the lives of children. As such, I wish for anybody who is considering what the AVN has to say to take a close look at their conduct.

As is it concealed by it’s very nature, the degree to which the AVN moderates blog comments is an unknown. It is not apparent how often comments are suppressed or whether unpublished comments are genuinely abusive or merely not to the moderator’s taste at any given moment.

In the spirit of shining some light on suppressed comments, I have started up a Facebook group, Denied! Rejected Comments from the AVN’s Blog.

As is probably apparent upon reading the title, Denied! Rejected Comments from the AVN’s Blog is a place for commenters on the AVN’s blog to post screenshots of comments that did not make it past moderation. The AVN’s supporters (and even Meryl herself) are most welcome to participate. I hope for some hearty discussion and also for the public to have the opportunity to see the range of information and points of view that the AVN does not wish to have aired on their blog.