Sinclair May has a genetic disorder that includes developmental delays and limited speech. His father has taken him to Hong Kong to have needles poked into his tongue.
Surely it doesn’t take a biology degree to realise that poking needles into a kid’s tongue is not going to bring back his missing DNA and that Sinclair’s inability to speak almost certainly has nothing to do with his tongue.
I regret not having picked up this story sooner; the poor efforts of local media in covering it deserve an airing.
It looks to be yet another case of media receiving a story from sources, as is no doubt common, then lazily proceeding by ‘echoing’ the story to their audience with little or no real effort to find the real story within it, to provide real balance or to present the material in a critical way.
Last night it made it’s way onto prime time TVNZ, presented by Megan Martin, that you can view on-line.
Somehow in at least three media presentations of this story, not one has picked up the real story, indicated the opening passages of all the coverage — that the condition is a genetic condition related to, paraphrasing, ‘missing tip of chromosome 7’.
The story notes Sinclair has a developmental delay and has trouble speaking. You’d expect these to typically be associated with brain development and neural function.
The pitch of the media has been to focus on that this kid is being sent to a Hong Kong-based GP-turned-acupuncturist to have his tongue poked with needles, with a claim that this will, somehow, improve his speech.
This idea is, to be very polite, dubious.
The bid for this treatment is supported by a Dunedin chiropractic, that I have previously written about, man who has written an advertorial whose argument was so similar to creationist arguments that readers were left wondering if in addition to chiropractic beliefs, he is also a creationist.
(I’ve previously mentioned Eileen Goodwin on this blog two years ago following her decision to offer as ‘balance’ a statement by a spokesperson of a (now defunct) anti-vaccine group for a story on whooping cough. I went on to examine more critically the spokesperson’s claims as I would like to have seen done.)
Forgive me this nitpick: early in the piece the story refers to an “undiagnosed chromosome defect”, which to me reads as a contradiction in terms. The identifying that there is a chromosomal defect is a diagnostic. Perhaps what the writer meant is that they (the writer) were not offered a named condition for what Sinclair has.
It is followed by a description of an unscientific remedy, then another contradiction in terms, -
“Sinclair can only say a few words, and Mr May hoped the therapy could stimulate energy points at the base of the tongue, on the underside.
He did not expect it to be a “magic wand”, but hoped Sinclair would progress to sentences, rather than saying a few single words.”
Expecting that there are ‘energy points’ to stimulate is expecting magic and poking needles into a child’s tongue is trying what is, in essence, at best dubious.
Almost certainly the speech deficiency or delay will lie in brain function, not the tongue.
This treatment is advocated by a chiropractic, Tat Loo, consulted by Sinclair’s father, Jason May.
(Not Dr. Tat Loo, as given in the media coverage. Chiropractics do not have a standard medical degree and, from my understanding of the regulations, cannot be identified as plain ‘Dr’ and the word ‘chiropractic’ must feature. Furthermore, as noted in an earlier article, Loo is not registered as a medical practitioner. Journalists covering medical beats should make use of the on-line medical registry - consumers, too.)
Chiropractic is founded on two lines of non-scientific thinking: vitalism (‘energy fields’ and the like) and subluxations. Neither has support in science or established medical practice. (To be very brief, subluxations are imagined to be partial dislocations of the spine that affect the flow of ‘vital life forces’ to other parts of the body.)
The irony that Greenlade-Yeats’ later piece opens mentioning “fact-a-thons” is not lost on me (certainly this subject needs more facts than those on offer) and that her piece repeats the self-contradictory “undiagnosed chromosome defect” is annoying.
I agree with All Black Brad Thorn that “I can’t imagine [the treatment] will be very nice for Sinclair.” It has shades of other cases where other well-meaning parents have subjected their children to dubious treatment.
Of particular concern is the description of how the treatment was identified,
Mr May learned of the treatment by mistake. After bouncing ideas around with Sinclair’s chiropractor Dr Tat Loo and much research, Mr May found out about Prof Sun Jie Gung at the Hong Kong International Tongue Acupuncture Research Clinic.
“I asked [Prof Sun]: ‘Will Sinclair speak?’ and he said ‘Yes’. I just have a gut feeling about this.”
In my opinion Mr. Loo is inappropriate as an ‘expert’ for this and ought to have explained that to Mr. May himself and withdrawn his services, redirecting Mr. May to suitable people and organisations.
More suitable people to talk to might include local experts on genetic disorders (the University of Otago is on the May’s doorstep, after all) and NZORD, the New Zealand Organisation for Rare Disorders, who aim to provide New Zealanders with a central starting point for information about rare diseases. (Similarly the journalists covering the story might have contacted them. Another point of contact might have been the Science Media Centre.)
The ODT piece ends with offering the bank account number of a Trust account.
I’ve written an open letter to editors and journalists about the practice of encouraging funding in these charitable stories.
As I wrote at that time,
this checking should done, and done properly, or the advocacy dropped
(The comments by long-time journalist Phil Wallington that follow the article are worth reading too.)
This media coverage—all three of them—feel like soft-ball efforts (not the sport) where the story tosses at the audience things that have been gently lobbed at the media by interested parties, rather than taking the initiative to investigate leads.
To be fair, they may have confused Loo’s credentials as meaning his statements were that of a registered medical practitioner. Another reason perhaps for chiropractors’ use of this title to be stopped? Regardless, as an interested party—Mr. May turned to Loo as a consultant —the journalists ought to have interviewed an independent party.
A pity of many of these types of stories is that excellent stories lie within them, if only the journalists (and their editors) would pursue them.
Where’s the real story on offer, then?
The obvious lead is that it is a genetic condition. What is known about this particular type of chromosomal loss? Did anyone try interview a specialist on rare genetic conditions? Or may a basic effort to find leads at all?
Let me illustrate this by putting a few minutes of effort on-line in.
Anyone familiar with the medical beat ought to know of On-line Mendelian Inheritance in Man (aka OMIM), a major on-line database of genetic disorders, and PubMed, a major access point to the medical literature (other access points exist, such as Google Scholar and commercial databases).
Before continuing, I must emphasise strongly that I am not offering these examples as causing Sinclair’s condition as I lack don’t have enough information about the chromosomal loss diagnosed. My aim is simply to illustrate that possible leads can be readily be found with a few minutes’ effort, which could then be followed up through interviews and further investigation.
The first match to a Google search ‘site:omim.org loss chromosome 7 speech’ is to Speech-Language Disorder 1 or Specific language impairment 1, which is associated with speech and language disorders.
This was an startling genetic finding that has received wide attention, including in the media. You might think of language as a learnt endeavour. Here the lost of a gene results in specific language loss. There was no loss in receiving language, only in generating it.
The brain classically is thought to have regions associated with different tasks. One way to think of this genetic deficiency is a disruption of the area of the brain associated with generating language output, in a similar way that localised strokes have pointed to the function of the parts of the brain that the stroke has disrupted.
Tat Loo said Sinclair’s condition was ‘essentially unique’. By contrast, defects associated with this gene and speech disorders are now fairly well-established. The gene affected is the FOXP2 gene, which is located some way from the tip of chromosome 7, but the OMIM entry for SLI1 refers readers on to a related putative genetic variation that is located towards the tip of chromosome 7, Specific language impairment 4.
This condition affects the CNTNAP2, a gene active in the developing human cortex (part of the brain) that is less well-studied.
Chemical processes in our bodies usually work as a series of steps. The researchers (Vernes et al., 2008; open access) reasoned that steps after the FOXP2 gene might also be involved in specific language disorders. The protein made by the FOXP2 gene (Foxp2, forkhead box protein P2) is a gene regulatory protein, controlling how others genes are used. The researchers tested if variations in or close by genes that Foxp2 regulates might be associated with language disorders by screening a large collection of cases and found what they report as a significant association in one case found near the tip of chromosome 7, the CNTNAP2 gene.
Since this work, some case studies have been published including, Disruption of CNTNAP2 and additional structural genome changes in a boy with speech delay and autism spectrum disorder (Poot et al., Neurogenetics. 2010 Feb;11(1):81-9. doi: 10.1007/s10048-009-0205-1).
For the curious CNTNAP2 is one of the biggest human genes, taking up nearly 1.5% of chromosome 7 and is used to make a member of a family of proteins (neurexins) that control interactions and signalling between neurons and their partner glial cells, and is known to be associated with a number of neurodeveopmental disorders. (A brief summary can be found on-line in a number of sources including at the NCBI.)
I lack the time to take this further, but it would seem reasonable to ask if Sinclair’s particular genetic deficiency might relate to disruption of this gene and investigate if there is a story there.
If I were to spend $15,000 on Sinclair, I’d be looking at the genetics closer. We have people right here in Dunedin who are able to help with that. (If the CNTNAP2 gene is a candidate for this condition, it is mentioned in the abstracts of over 140 papers in PubMed so there is some background that may prove useful to investigate.)
I wouldn’t expect ‘instant treatments’ despite that there are a few accounts of success using genome/genetic investigation approaches, but at least this is following the evidence which is more likely to find something rather than taking pot-luck with dubious remedies.
1. Tat Loo writes a regular advertorial in a local circular and I have to admit I am also left wondering if the chiropractor pitched this story to the TV media in part seeing an advertorial opportunity. This, in turn, leaves me thinking that if stories are pitched to media by those appearing in them, this conflict of interest ought to be disclosed in the story.
2. This regulation looks to me to be a legal ploy to try legitimise something that is not a proper medical degree. I’m of the opinion that the loophole should be closed and these remedy practitioners be made to stop using the title. See also, Use of inappropriate titles by New Zealand practitioners of acupuncture, chiropractic, and osteopathy by Andrew Gilbey in the Journal of the New Zealand Medical Association, 25-July-2008, Vol 121 No 1278.
I’ve been approached with this issue in comments on other posts, too, such as after Simon Singh & Prof. Ernst – The Truth About Chiropractic Therapy. (Singh and Ernst’s chapter unfortunately no longer seems to be available from this source. Readers might be able to locate it elsewhere, perhaps even via Google books.)
3. One commenter to Doubtful News’ piece Tongue acupuncture for a child. I have few words… put it more bluntly,
“So, one pseudo-doctor touting the benefits of a non-treatment performed by another pseudo-doctor?”
While I wouldn’t be as blunt myself, the question raised in the article that “did they go to a chiropractor to treat a speech impediment?” is worth considering. Why indeed.
4. Philosophically this is same issue as the iridologist not referring on her cancer patient.
5. Disclosure: I am a member of Genetics Otago and these blogs are hosted by the Science Media Centre.
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