You know those nature programs where they film sharks in a feeding frenzy? That’s what I’m reminded of when a new test or treatment appears on the radar of the mercury militia. First there’s one lone parent taking a chomp but after a few minutes there’s a whole school of them twisting, turning, biting indiscriminatingly.
Porphyrins are the New Big Thing amongst the mercury militia. Never mind that the sole paper that exists on the subject (pertaining to autism) contradicts the Holy Edicts of DAN! and also fails to note that some forms of chelation affect how Porphyrin’s are measured and further, that the lead author of the study acknowledges the substantial grey areas and unaddressed discrepancies in the paper. Full steam ahead Jeeves and don’t spare the horses.
In a nutshell, these people believe that Porphyrins can be used to give a very accurate measure of how much mercury (or other metals) are in someone’s system. They send their kids wee off to a lab in France to be analysed at €80 a pop. The French test is considered the best as they test for Precoproporphyrin which is supposed to be a specific marker of mercury. Never mind the fact that only one scientist has ever found this association.
So how’s it panning out for the mercury boys and girls? Here’s a series of quotes from the Yahoo ChelatingKids2 Email Group:
A fellow listmate had her son tested twice– once over the summer which showed he had no elevated metals, and one this fall that showed he did indeed have elevated metal levels. She has sent an email to the lab asking about the differing results and has not received a response. I believe she is still trying to contact them.
FWIW, my neighbor’s dad happens to be a porphyrin specialist here in Boston (believe it or not– how many of those are there??). He reviewed lots of info for me– Nataf’s paper, my son’s results that showed very elevated metals across the board– and said he would have rejected the paper for publication had he been asked to review it. He said that fecal, not urine, should be used to measure the porphyrin levels. I sent an email to the lab inquiring about this and also received no response.
It concerns me that if someone does one test and goes on those results, do we know that those are accurate. I hate the idea of implementing treatment on a child based on less than accurate info. It is hard to GET good info I realize on the toxicity issue but just wondering if this is reliable enough to trigger chelating a child etc.
The answer is ‘no’. Here’s another one:
I just received the results of the French porphyrin test for myself and my 7 year old NT daughter, and the results also show severe lead and mercury toxicity. My daughters numbers are worse than my ASD son!
Sadly, this parent was considering chelating her NT daughter anyway even though….
My daughter is terrified of oral capsules and blood draws after seeing what her brother goes through
What’s the cut off point when an honest desire to help someone based on love for them and sound science to underpin your decision becomes a dangerous chasing after any sort of unproven treatment no matter what the consequences might be?
The scientist and author Michael Crichton once gave a speech about environmental issues that may as well have applied to the autism/vaccine issue:
We are basing our decisions on speculation, not evidence. Proponents are pressing their views with more PR than scientific data. Indeed, we have allowed the whole issue to be politicizedâ€”red vs blue, Republican vs Democrat. This is in my view absurd. Data arenâ€™t political. Data are data. Politics leads you in the direction of a belief. Data, if you follow them, lead you to truth.
Increasingly it seems facts aren’t necessary, because the tenets….are all about belief. It’s about whether you are going to be a sinner, or saved. Whether you are going to be one of the people on the side of salvation, or on the side of doom. Whether you are going to be one of us, or one of them.
That’s sad, worrying, dangerous. And true. When did we start to let PR driven media become more important and carry more weight than scientific fact? When papers scream headlines about the evils of mercury causing autism what is it about the apocalyptic way the story is written that catches attention? We live in a world where we think we see threats at every turn. This is a world where I cannot videotape my kids school plays any more as its considered ‘a security risk’. This is a world that now exists in biblical terms like ‘terror alerts’ and ‘axis of evil’. No one conditioned to this hysteria is going to listen to the scientists simply repeating the fact that no science supports such an assertion. That won’t give us a fix of melodrama – maybe if we portray these scientists as part of a global conspiracy that might quicken our terror-conditioned pulses a bit.
There are people who get their ‘facts’ not from scientists but from people like this man – an American DJ names Don Imus. He is, apparently, an autism advocate. He also seems to be something of a racist bigot.
If I have wishes for Christmas its that we stop listening to hyped-up media merchants like the odious Mr Imus and start listening to actual scientists regarding autism and its causes.