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Age of Autism on chelation cancellation

18 Sep

I posted yesterday on the cancellation of the NIH study that was going to be examining chelation’s efficacy as an autism treatment.

What I said was that it was a good idea and it is. The simple facts are that autistic children are not toxic. The only labs that consistently find autistic children to be toxic are the labs Dr Jeffrey Brent identified as ‘these ‘doctor’s data’ type of laboratories’. In fact, its probably worth repeating his testimony about these labs:

Q: Dr Mumper discussed today some key aspects of chelation therapy….as a medical toxicologist do you see any reason for the chelation to remove mercury from either Jordan King or William Mead in these cases?

A: Absolutely not….there is no test in medicine that is more valid for for assessing mercury toxicity than an unprovoked urine mercury concentration. [For Jordan King and William Mead]…their unprovoked urine concentration is exactly in the normal range.

On the other hand, they have been chelated. And the justification for that chelation with regard to mercury comes from what you see in the right hand column where in both cases, 4 out of 5 provoked examples have been…uh…increase urine mercury. Well, you’re supposed to have increased urine mercury with provoked examples! Therefore there is absolutely no indication based here or anywhere else I saw in the medical records that suggest that there is any mercury effect in these children and therefore that was absolutely no reason to chelate them for any mercury related reason.

The standard way of chelating autistic kids is to do a provoked challenge test. As Dr Brent says – you’re supposed to have increased levels with provoked examples.

Q: There’s nothing here that would be out of the ordinary – from your experience – absent, even in the absence of a standard reference range.

A: Well, in truth we don’t (?) urine/leads because the ‘gold test’ is blood/lead so I haven’t looked at many urine/leads in children that I have chelated. So I can’t speak to that in my experience. But I have seen a number of patients now come to me because of these ‘doctor’s data’ type of laboratories which are based on urines – chelated urines – and they always have high leads in their chelated urines and I tell them ‘well, lets just do the gold standard test, lets get a blood/lead level and so far, 100% of the time they’ve been normal.

To sum up, the labs that consistently find a need to chelate autistic kids use the wrong sort of tests. When expert Toxicologists such as Brent do the proper ‘gold standard’ testing, the results are normal 100% of the time.

Its as simple as pie. You use the wrong test, you’re going to get the wrong results.

And yet, over on the Age of Autism website, they’re getting very angry about this cancellation. The angry opening paragraph to a recent post highlights the lack of logic in their stance:

So who canned the NIMH chelation study as “too dangerous?” Children are given huge doses of chemotherapy and radiation in a desperate effort to save them from cancer – fully knowing the side effects themselves can be deadly. It’s a fair risk most parents are willing to take to help a sick child.

Chemo is a standard treatment for cancer. It is medically indicated. Chelation is not a standard treatment for autism. It is not medically indicated. The reason it is not medically indicated is because there is no evidence metals are linked with autism.

There is a chain of logic that must be followed. If you want a type of treatment to be assessed for its efficacy, then your first step is surely to establish that there is a medical necessity for that treatment. If there isn’t then what you are doing is inflicting a completely unnecessary procedure on a child. In this case, a procedure that has been known to cause lasting brain injury in animals (rats).

The comments on AoA go from the bizarre:

So, why do I sense Pauly PrOffit’s grubby, greedy little fingers on this? This smells like something that he would do

To the paranoid:

THIS HAS BULLSH*T WRITTEN ALL OVER IT!!!

To the conspiracy-esque:

Notice the studies they WON’T do:
Studies on the effects of chelation.
Studies comparing unvaxed and vaxed children for autism.
Studies to find the misdiagnosed adults with autism to prove there’s been no increase.

When is everyone going to wake up to what’s happening?

NB – a study to find adults in Scotland is being planned if I recall correctly.

No-one considers the most likely reason for this cancellation:

a) There is no evidence metals cause autism
b) There is evidence chelation can cause injury
c) There is therefore what any rational person would see as an unacceptable amount of risk to children.

And of course we have the usual ‘my child recovered’ stories. Why do these stories never seem to get written up as case studies I wonder? We’re told there are thousands of them – where? Where in the medical literature are they? Apparently there are lots of rogue paediatricians who believe the antivaxxers so why aren’t they doing case studies on the multitudes of autistic children who are now totally recovered?

Personally I think that is what has bullshit written all over it.

Chelation study 'called off'

17 Sep

CHICAGO – A government agency has dropped plans to test a controversial treatment for autism that critics had called an unethical experiment on children.

The National Institute of Mental Health said in a statement Wednesday that the study of chelation (kee-LAY’-shun) has been discontinued. The statement says the agency decided the money would be better used testing other potential therapies for autism and related disorders.

The study had been on hold because of safety concerns . A study published last year linked a chemical used in the treatment to lasting brain problems in rats.

The treatment removes heavy metals from the body and is based on the fringe theory that mercury in vaccines triggers autism — a theory never proved and rejected by mainstream science.

Yahoo News

Back in June, I blogged about the possibility of the delayed chelation study being released. It had been delayed due to the same ethical concerns that now seem to have scuppered it. I can only view this development with relief. As I said at the time:

Lets be clear. This study is being touted about for one reason and one reason only – to appease the anti-vaccine/autism groups. In the mainstream medical/scientific community (and notably in the toxicology community) it is well known that autistic kids aren’t toxic.

Click on the link above to see some quoted testimony from Dr Jeffery Brent, world renowned Toxicologist. His opinion on the need for chelation of autisitic children is thoroughly discussed. Basically, when you do the provoked, non-standard tests from labs that make a good living from charging for these tests, they come back positive. When experts like Dr Brent do the gold standard tests, 100% of the time they come back normal.

There is no reason to chelate autistic children.

Conflicts, then and now

3 Sep

There is a lot of talk about conflicts of interest in autism.  This is especially true with Dr. Paul Offit’s book, Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure out now.

Consider his letter to the New England Journal of Medicine in May, 2008.

Dr. Offit reports being a co-inventor and co-holder of a patent on the rotavirus vaccine RotaTeq, from which he and his institution receive royalties, as well as serving on a scientific advisory board for Merck. No other potential conflict of interest relevant to this article was reported.

In August Dr. Poling responded to that May Letter, and Dr. Offit was able to comment as well. Below is Dr. Offit’s conflict of interest statement.

…

Yep, that’s right. No statement. In a few short months, the royalties for the RotaTeq vaccine have been settled and Dr. Offit’s tenure as a consultant to Merck has ended. Basically, it’s as we’ve discussed before: Dr. Offit no longer has any financial conflicts of interest in discussing vaccines.

Note this statement about the book from the publisher’s site: He [Offit] will donate all royalties from sales of this book to autism research. I.e. he also doesn’t even have a conflict of interest in promoting his newest book.

I don’t expect all the people who dislike what Dr. Offit has to say to report these facts accurately. I will say that Sharyl Attkisson didn’t repeat the “Offit works for Merck” line, and good for her. I think it is a good assumption that the people who helped her with that story probably did push the “He’s a Merck consultant” idea.

Many people people (and Orac, and Kev, and AutismNewsBeat, to name a few) have gotten it right already, so I shouldn’t be too worried about it. But, as I await the book showing up in my mailbox, I keep thinking about the issue of conflicts of interest and Dr. Offit.

[note: I made a few minor edits after this post went live. They were for clarity and did not change the substance of the post]

GFCF Double Blind Study

9 Aug

Washington, Aug 8 : In one of the first double-blind, clinical studies, scientists at The University of Texas Health Science Center at Houston will be seeking to determine if gluten and dairy products have a role to play in autistic behaviour, as has long been claimed by parents.

Source

This should be interesting.

Personally, I don’t have much of an issue with the GFCF diet, aside from the lack of evidence supporting it. Regulating someone’s diet is nowhere near as dangerous as chelation or Lupron injections or industrial cleaner being marketed as chelators. But maybe a nutritionist will correct me on that.

I am a little bit worried about a statement attributed to one of the study authors:

A lot of children with autism have gastrointestinal problems such as constipation and diarrhea.

Do they? Is there any actual evidence beyond the anecdotal that backs that statement up? I can’t recall seeing any myself. Not that I’m omniscient on the subject you understand.

We tried our autistic child on the diet shortly after xyr diagnosis and it did absolutely nothing. But then I think we misunderstood it. Xe didn’t have any diet or gastro issues to begin with. We were still in that rather naive ‘must cure at all costs’ phase and there was only a small handful of websites dedicated to autism or autism treatments. Indeed, one of the things that amazes me is how autism has become something of an industry over the five years or so.

Anyway, I’ll be interested to see how this one pans out. How ’bout you?

Conflicts of interest, whats good for the goose…

28 Jul

As recently blogged by Autism News Beat, CBS Evening News (an American news outlet) recently performed an investigation into ‘how independent are vaccine defenders’? Something of an exercise in futility, it concluded that:

Ideally, it [vaccines] makes for a healthier society. But critics worry that industry ties could impact the advice given to the public about all those vaccines.

So, CBS say that the vaccine schedule makes for a healthier society but that the advice given about vaccines could impact the advice given.

Uh…so? Lets go through that again. It makes for a healthier society. Would CBS rather it didn’t? Bizarre.

Specifically, they attack the AAP, the Every Child By Two website and Paul Offit. The AAP has conferences funded by vaccine manufacturers, ECBT takes money from the vaccines industry….in fact, hold on…CBS say in their report (assume breathless excitement reporter voice)

Every Child By Two, a group that promotes early immunization for all children, admits the group takes money from the vaccine industry, too…

Oh do they? They admit it do they? Under the rigour of your intrepid journalism no doubt? Except that information is clearly available for all on their website. I do wonder if anyone from CBS even spoke to ECBT.

And of course there is Paul Offit – the official poster boo-boy for anti-vaccinationists everywhere. The man who dares to make a profit from his inventions! CBS took him to task for holding a patent on a vaccine. Shall we look at another man who made a patent application for a vaccine? That’s right – Andrew Wakefield. Except, unlike Dr Offit, who made no attempt to hide his association with the vaccine he was responsible for, Andrew Wakefield’s solicitors said that ‘Dr Wakefield did not plan a rival vaccine’.

How about other people who make a tidy income from the anti-vaccine industry? The Geier’s maybe who invented their own IRB to make sure that their ‘science’ was unhindered by ethical considerations…..or maybe Dr. Jay Gordon who thinks that the Polio vaccine could be replaced by simply not eating cheese. How much do you charge your clients Dr Jay? How about Laura Hewitson who’s husband works for the Wakefield owned Thoughtful House and who seems to be part of the Autism Omnibus hearings….how independent can her science be? How about the ARI/DAN group who are led by people who clearly have no clue at all as to the medical science they are making a large profit on. How much do each of these people make? How about Rashid Buttar who lists non-existent memberships on his CV and who charges upwards of $800 for a 1 hour consultation fee and who’s ex-patients report being out of pocket by about $20,000 in about a year.

Its up to you Dear Reader – are these things we should be worried about? Are these things CBS should be worried about? Are these conflicts of interest? Does the act of making any sort of money either from treating people or from existing business interests mean you cannot and should not talk about these things? Should we assume that only certain people have an agenda?

In my humble opinion, it should only become an issue when attempts are made to hide these things. Or deny them when they are clearly true. That cannot be said of the AAP, ECBT or Paul Offit. Maybe CBS should be asking to see the balance sheets of DAN doctors or vaccine litigation specialists. What have they got to hide? Maybe CBS should be inspecting the credentials of people who claim to be able to cure autism and reverse old age. Maybe CBS should be looking at the disturbing increase in ties between autism/anti-vaccinationists and scientology.

But I would think in the meantime that CBS will take the easy route of producing crap that informs no one about anything. Lets hope it doesn’t turn around and bite them on the arse eh?

Elsewhere
Orac weighs in too.

Elizabeth Mumper – Autism Omnibus, Dwyer vs HHS

25 Jul

Some highlights, courtesy of a Guest Blogger, er Transcriber 🙂

Beau Johnson DoJ lawyer: Neither the myelin basic protein nor the IGM neuro filament antibody test is diagnostic of any disease is that right?

Mumper: That’s correct.

Johnson: They are very nonspecific findings.

Mumper: That’s correct.

Johnson: And isn’t it true that these antibodies have been reported as elevated in normal individuals with no disease?

Mumper: That is true in some cases. Exactly.

Johnson: And because these markers were measured in the serum rather than the CSF they provide no direct evidence of what is going on in Colin’s central nervous system is that right?

Mumper: I guess I would quibble with how you get direct evidence, in this case in order to get direct evidence of neuroinflammation I guess we’d would really needed to have done a brain biopsy on him in 2002. I can tell you from personal experience that even wanting to look at CSF in children with autism for the presence of inflammatory markers is widely perceived as an invasive procedure. So those of us who might want to be able to document it more directly are constrained from doing so by standards of care criticisms. So we have to rely on other markers, and it’s not a direct marker but I would argue that a clinician would not have the ability to do a direct assessment in a living child.

Johnson: For whatever reason that evidence is just not present in this case, is that correct?

Mumper: That’s true

Johnson: Do you know what protocol Immunosciences used to perform these two lab tests?

Mumper: You know I don’t. I have visited the immunosciences labs on two occasions and talked to the director and viewed their facilities. But I am not a lab scientist. I can tell you that when I visited and had it explained to me it made sense at the time, but I could not reproduce the protocol.

Johnson: Do you know how Immunosciences established it’s references ranges?

Mumper: I do not know the details of that, no.

Johnson: Do you know whether these reference ranges take the age factor into account?…

Mumper: I do not think they are normed for children, but for things like neurofiliment antibodies and myelin basic protein antibodies the values for children would be expected to be less than people as they aged…

Johnson: But you don’t believe that these reference ranges are normed for children?

Mumper: I do not think that they are. That’s correct.

Johnson: Do you know if immunosciences lab ever been accredited by the College of American Pathologists?

Mumper: I do not know if they have. I do know that their work, their lab reports come disclaimers about use for research and careful clinical applicability and those types of things.

Johnson: Do you know if immunosciences is currently performing any clinical testing?

Mumper: I believe they are not.

Johnson: I’m going to show you what we’ve marked as respondent’s trial exhibit 14 and it is a letter that I found on the Immunosciences website.

Mumper: OK.

Johson: Doctor have you seen this letter before?

Mumper: Yes I have.

Johnson: And does this letter reflect that Immunosciences has in fact stopped performing clinical testing as of July 21, 2007?

Mumper: Yes, as i just testified to.

Johson: Do you know why it stopped performing clinical testing?

My understanding from talking to Dr. Vodjani and some health department officials, is that his lab was investigated for their testing as related to mold. Looking for mold evidence of chronic mold exposure as a potential cause of chronic illness. My understanding from Dr. Vodjani that the investigation was perhaps precipitated by a court case in which mold testing had been used and the plaintiff who had claimed damage from mold had won a huge settlement and the health department was concerned about the possibility of on the basis of that mold test and wanted to investigate the lab with regard to that.

Johnson: So its your understanding that the problems with Immunosciences lab were limited to its mold testing?

Mumper: That is my understanding, but I have not investigated all the depth of the investigation, nor read any of the official documents, so I really do not have full knowledge of that.

Johnson: I’m now going to show you respondents trial exhibit 15 which is another letter that I found on Immunosciences website.

Mumper: OK. Thank you.

Johnson: Doctor have you seen this letter before?

Mumper: I believe I have. Yes.

Johnson: Did you receive this letter since it is addressed to “Our valued clients and associates”? Was this sent to you?

Mumper: Yes.

Johnson: This letter is signed by doctor Vodjani?

Mumper: That’s correct.

Johnson: I believe you testified in May that you have an article in press (which has) Dr. Vodjani as the lead author?

Mumper: That is correct.

Johnson: Do you know what CLIA stands for?

Mumper: … I can’t remember…

Johnson: OK and just for the record it’s Clinical Laboratory Improvements Amendments of 1988 and we’ll just refer to it as CLIA for ease of reference.

Mumper: OK

Johnson: Do you know what CMS is?

Mumper: According to the letter it might be Centers for Medicaid and Medicaid Services?

Johnson: That’s correct. CMS regulates all laboratory testing on humans in the United States through CLIA in order to insure quality laboratory testing, is that right?

Mumper: Uhuh.

Johnson: Dr. Vodjani’s letter states in the third paragraph that “CMS had found deficiencies during a 2004 CLIA survey of Immunosciences that led it to conclude that the lab’s test results since 2002 may not be accurate and reliable.” Were you aware of those findings by CMS?

Mumper: Uhm, yes, since I got this letter.

Johnson: I’m not going to show you respondents trial exhibit 16. This is a letter from CMS. Doctor have you seen this letter before?

Mumper: Yes I have.

Johnson: Did you receive this letter?

Mumper: Yes I did.

Johnson: And this letter does in fact say at the beginning of the second paragraph on the first page that: We are writing both to inform you of the current sanction action and to alert you that test results that you received since June 2002 from Immunosciences lab might not be accurate or reliable. Is that what that says?

Mumper: I would like to add that… I did call Mary Jew as suggested in this last line. I can’t remember the details now, but I talked to three different people on the staff. I tried to get information about what particular concerns they had because I was trying to figure out for the labs that I had done on my patients if this were a global concern or if it was related to the mold or if there were tests that I was using that I may still be able to rely upon, and I was very frustrated in not being able to find out from those people who I think their hands were tied as far as talking about an ongoing investigation, what the problems were.

Johnson: We may be able to provide some of that information now. I’m going to show you now what is marked as respondents trial exhibit 17. And this is the CLIA annual laboratory registry from 2005. Have you seen this document before?

Mumper: No I have not.

Johnson: Look on page 5 of this document. Does this indicate that Immunosciences’ CLIA certification was being revoked due to condition level noncompliance?

Mumper: Uhm, cancellation of a approval to receive medicare payment due to noncompliance. Yes.

Johnson: Now I’m going to show you respondents trial exhibit 18. And these are actually excerpts from a much larger report. And this is the, a report from the survey that CMS did of this lab. … does that appear to be correct to you?

Mumper: Based on my thirty second review that does appear to be correct.

Johnson: If you’ll turn to the fifth page of the trial exhibit. This document lists a number of findings in connection with Immunosciences general immunology testing. Is that correct?

Mumper: It appears that that is correct.

Johnson: Were you aware that CMS noted problems at Immunosciences lab in connection with its failure to follow written policies and procedures for an ongoing mechanism to monitor, assess and correct problems in the pre-analytic systems?

Mumper: No I did not have access to that information.

Johnson: And were you aware that the CMS found that the laboratory
failed to determine calibration procedures and control procedures based upon established performance applications?

Mumper: No I was not aware of the specifics.

Johnson: And were you aware that the CMS found that Immunosciences laboratory failed to verify the continued accuracy of the test systems throughout the laboratory’s reportable range of test results? …

Mumper: … I was not aware of the specifics.

Johnson: And under sub paragraph I, the CMS found that the Immunosciences laboratory failed to establish the statistical parameters of the unassayed control materials used for it’s various in-house ELISA test systems?

Mumper: I was not aware of that.

Johnson: Ok and these findings all relate to Immunosciences general immune testing is that correct?

Mumper: It would appear that that is the case.

Johnson: And if you will look at the next to the last page of the trial exhibit. Were you aware that CMS found with respect to the anti MPB and neurofilament test in particular that Immunosciences failed to have written policies and procedures, for patient preparation, specimen collection, specimen storage and preservation, conditions for specimen transportation and specimen acceptability and rejection?

Mumper: And what was the date of that that it was not in place? Because it seemed to be on the website when you cited it earlier. And when we sent specimens in 2003 we were able to obtain written instructions about the specimens submitted, they came actually in the test kit.

Johnson: I believe this was from a survey from 2004 …

Mumper: What I was trying to explain to you that as a clinician the test kits came in a box, and there’re the tubes and a series of explanations about how the specimens need to be prepared. … So I can only testify as to what I know… we had procedures to follow when we submitted our blood samples in 2003.

Johnson: And all I’m asking you is that at the time that CMS performed this survey it found that those aspects of Immunosciences laboratory practice to be inadequate. Is that correct?
…

Johnson: Look at the last page of the trial exhibit…at the time it performed this survey with respect to the anti MPB and neurofilament test that Immunosciences failed to provide documentation the laboratory director’s review and approval for those procedures?

Mumper: It does suggest that there was no documentation to show his review and approval… so how much this was a matter of paperwork versus actual analysis, I can’t say.

Johnson: And Dr. Vodjani’s letter of January 16th, 2006 ,he indicates that Immunosciences had planned sue over the survey results.

Mumper: I believe he said he planned to vigorously fight or something to that effect …

(Special Master: And that was trial exhibit 15? …)

Johnson: We have a copy of the settlement agreement from that lawsuit it’s been marked as respondents trial exhibit… Focusing on paragraphs 1, 2 and 3. …

Mumper: OK

Johnson: It appears that one of the conditions of the settlement that Immunosciences would obtain accreditation through the College of American Pathologists or else it would voluntarily withdraw from the CLIA program and cease testing on human specimens, is that correct?

Mumper: That does seem to be the case.

Johnson: Based on the fact that Immunosciences is no longer performing clinical testing, isn’t it reasonable to assume that they did not receive accreditation through the College of American Pathologists…

Mumper: (interrupting) or that they chose not to pursue it I would think would be the two possibilities.

Johnson: Doctor based on this information do you have any concerns about the reliability of the Immunosciences test results?

Mumper: I was not aware that the MBP or neurofilament testing was under contention, and if that were the only thing that I was relying upon to make my judgement I would be concerned that I had over-read the labs. I would give relatively less credence or perhaps even be forced to discount those particular lab tests given  the information in the settlement agreement that I wasn’t privy to knowing the details of.

Johnson: The next test results that you discuss in your report are results from Great Smokies lab that purport to show abnormal glutathione, lipid peroxide and cysteine levels.  Is that correct?

Johnson: … That would have been when Colin was about 3 1/2 years old… So to the extent that these results indicate anything about whether Colin was under oxidative stress at the time … they don’t tell us if he was in oxidative stress at the time of his immunizations. Is that correct?

Mumper: That’s correct.

Johnson: These tests were blood tests is that correct?

Mumper: That’s correct.

Johnson: Do you know if these tests were normed for children?

Mumper: I do not know the answer to that question.

Johnson: And as you note in your report a number of other factors can explain oxidative stress such as poor nutrition. Is that right?

Johnson: Would you agree that a mercury efflux disorder is still a hypothesis at this point

Mumper: Yes.

Johnson: So low cysteine and plasma sulfate levels can’t be diagnostic of that disorder..

and those levels can be explained by a number of other factors is that right?

Mumper: That’s correct.

Johnson:… I’d like to go through all the mercury testing if you don’t mind.

…

Mumper: It would appear that 4-19-02 was the time of the very first visit to Dr. Bock. So there is not evidence that he would have been on a chelating agent at that time.

Johnson: And the result for this test of mercury was that it came back the non-detectable limit … Is that correct?

Mumper: Right.

Johnson: The next test that we found was the December 2002 test and that was a urine toxic metals test… although the report says that there was a chelating agent administered, you don’t believe there was, is that correct?

Mumper: Yes that’s correct.

Johnson: and the result shows no detectable mercury.

Mumper: Yes that’s correct.

Johnson: and the result shows no detectable mercury.

The next test was the December 22, 2002 …The next test was the December 22, 2002 test which is at petitioner’s exhibit page 90 and … this was post provocative test … and this test result showed that mercury was at 17 mcg per gram of creatinine. Is that correct?

Mumper: That’s correct.

…

Johnson: And the report indicates that DMSA was administered in connection with this test … and again the result from this test for mercury was nondetectable. Is that correct?

Mumper: That’s correct.

…

Johnson: There’s only test that showed mercury outside the reference range is that correct?

Mumper: That’s true.

The next test was the December 22, 2002 test which is at petitioner’s exhibit page 90 and … this was post provocative test … and this test result showed that mercury was at 17 mcg per gram of creatinine. Is that correct?

Mumper: That’s correct.

…

Johnson: And the report indicates that DMSA was administered in connection with this test … and again the result from this test for mercury was nondetectable. Is that correct?

Mumper: That’s correct.

…

Johnson: There’s only test that showed mercury outside the reference range is that correct?

Mumper: That’s true.

Johnson: And that was the provoked test from December 22, 2002. … Doesn’t Doctor’s Data say in bold right on the test report that reference ranges are representative of a healthy population under non-challenged or non-provoked conditions?

Mumper: That’s true.

Johnson: So we just don’t know what the normal range would be for a provoked test. Is that right?

Mumper: It is difficult to know…

When is Jenny McCarthy Honest?

9 Jul

Is she honest in April 2008?

There are some who wonder what we mean when we say “recovering” from autism.

……

….we think there are treatments that often bring about such healing, so that the observable symptoms of the condition no longer exist.

……

We believe what helped Evan recover was starting a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines.

Or is she honest in June 2008?

A lot of people are scared to chelate, which is the process of pulling metals out of the body, but it has triggered many recoveries. … Everyone has their own recipe to recovery, but your child might need chelation to get there. With a DAN doctor, I mean these guys are so good, they will help, you know, make sure your child is safe, your child has the minerals it needs to do it. … I’m, of course, scared to do it with Evan, but I plan on doing it this summer because Evan still suffers from seizures……

(Contributor from Autism One Conference wishes to remain anonymous).

So, in April 2008, Evan McCarthy is recovered (‘we believe what helped Evan recover…’). Not recovering but recovered. We can also see that among the treatments the helped Evan ‘recover’ is ‘detox of metals’.

Fast forward two months later and apparently Even needs chelation. Why? Back in April he’s recovered. Now he’s not? Now he needs chelation? And what for? Back in April, one of the ‘treatments’ that ‘recovered’ Evan was ‘detox of metals’. So why does he need to be chelated?

Can we add this to the other things that McCarthy has been slightly, ummm, vague about? Such as the fate of her indigomoms.com website? It existed in May 2007 as I blogged about it. But by July 2007 it had disappeared. Jenny’s explanation (from June 2008)?

SS: “You mention the word Indigo. What happened to your Indigo Moms website?”

JM: “You know I had to take that down and I was so sad to take it down, for a while anyways, it’ll be coming back up. People got really confused because I was coming out with Evan’s autism at the same time. And, they thought that I was healing Evan through Tarot cards instead of biomedical treatments.

So I realized I had to separate my messages and I had to take down one message which is the indigo and crystals, for now. I said, ‘oh the world is getting confused with these two different paths,’ you know. I consider them to be one. But people aren’t quite there yet and I kinda had to, not lower my vibration, change my vibration to focusing on the world hearing that message. Hearing that biomedical treatment does help these kids.

Right, right – oh the world is getting confused….so Jen just lowered her vibration and took her indigomoms site down.

Jenny McCarthy - Indigo Mom

Is it just me, or is anyone else starting to have a really bad feeling about this person’s involvement in autism advocacy?

Chelation study to be 'released'?

9 Jul

AP print an even-handed account of the current state of a Chelation study. This study which was approved and then put on hold:

….for safety concerns after an animal study, published last year, linked DMSA to lasting brain problems in rats.

I’m really torn about this study. On one hand, it would put to rest once and for all the issue of whether chelation benefits autistic children (except it won’t. When it finds chelation does nothing it will simply be attacked as crap by the anti-vaccine/autism groups). On the other hand, it will mean putting a whole load of kids at risk for no purpose whatsoever.

“I don’t really know why we have to do this in helpless children,” said Ellen Silbergeld of Johns Hopkins University’s Bloomberg School of Public Health, who was invited to comment on the study to a review board of the national institute.

Quite.

Lets be clear. This study is being touted about for one reason and one reason only – to appease the anti-vaccine/autism groups. In the mainstream medical/scientific community (and notably in the toxicology community) it is well known that autistic kids aren’t toxic. Here is a few snippets from the testimony of Dr Jeffery Brent – a sub-specialty board certified medical toxicologist. He is an active member of the medical school teaching faculty and is an attending physician on the clinical pharmacology/toxicology consultation service at the University Hospital. Currently he holds the rank of Clinical Professor of Medicine at the University of Colorado Denver. Dr. Brent has a long list of publications, virtually all related to clinical toxicology. He is senior editor of Critical Care Toxicology: The Diagnosis and Management of the Critically Poisoned Patient and serves as Editor-in-Chief of Toxicological Reviews, a major international state-of-the-art review journal devoted to human toxicology.

Q: Dr Mumper discussed today some key aspects of chelation therapy….as a medical toxicologist do you see any reason for the chelation to remove mercury from either Jordan King or William Mead in these cases?

A: Absolutely not….there is no test in medicine that is more valid for for assessing mercury toxicity than an unprovoked urine mercury concentration.

[For Jordan King and William Mead]…their unprovoked urine concentration is exactly in the normal range.

On the other hand, they have been chelated. And the justification for that chelation with regard to mercury comes from what you see in the right hand column where in both cases, 4 out of 5 provoked examples have been…uh…increase urine mercury. Well, you’re supposed to have increased urine mercury with provoked examples! Therefore there is absolutely no indication based here or anywhere else I saw in the medical records that suggest that there is any mercury effect in these children and therefore that was absolutely no reason to chelate them for any mercury related reason.

The standard way of chelating autistic kids is to do a provoked challenge test. As Dr Brent says – you’re _supposed_ to have increased levels with provoked examples.

Q: There’s nothing here that would be out of the ordinary – from your experience – absent, even in the absence of a standard reference range.

A: Well, in truth we don’t (?) urine/leads because the ‘gold test’ is blood/lead so I haven’t looked at many urine/leads in children that I have chelated. So I can’t speak to that in my experience. But I have seen a number of patients now come to me because of these ‘doctor’s data’ type of laboratories which are based on urines – chelated urines – and they always have high leads in their chelated urines and I tell them ‘well, lets just do the gold standard test, lets get a blood/lead level and so far, 100% of the time they’ve been normal.

So basically, when you do the provoked, non-standard tests from labs that make a good living from charging for these tests, they come back positive. When experts like Dr Brent do the gold standard tests, 100% of the time they come back normal.

*There is no reason to chelate autistic children* .

And here in this report is part of the problem. There seems to be a type of scientist who wants to short-circuit the scientific process:

Insel said he has come to believe after listening to parents that traditional scientific research, building incrementally on animal studies and published papers, wasn’t answering questions fast enough.

Well, boo-hoo. Its slow for a reason. Its slow to be as accurate as possible and to be as safe for humans as possible. Insel needs to remember that his patients – his duty of care – is not to parents, but to the autistic people in his case load.

And one more thing….in this piece, Jenny McCarthy says:

Actress Jenny McCarthy, whose bestseller “Louder Than Words” details her search for treatments for her autistic son, Evan, told thousands of parents at a recent autism conference outside Chicago that she plans to try chelation on him this summer.

I thought Evan McCarthy was recovered? Surely Jenny McCarthy isn’t – can’t be – wrong?

Nigerian Neurodiversity

17 Jun

Its refreshing to realise sometimes that there is a world ‘out there’ beyond the West and that they are living with autism too. And whats more, they aren’t considering it soulless, or sucking the marrow out of families, or organising pointless marches for people to exercise their right to blame others, or forming organisations that concentrate on blaming vaccines, or claiming that denying autism was anything except mercury poisoning in the past and now claiming its the vaccine schedule is just the evolution of a hypothesis, or making a tidy profit of the ignorance of parents.

No, what they’re doing is ‘serving humanity’:

Mr. Babatunde Willouhby,a masters degree holder, left his lucrative job to serve humanity by taking care of autistic and children with Down syndrome, amongst others. He is an administrator in an autistic school, named Hope House School, here in Abuja. While chatting with him recently in his office, I saw in him a man with passion for dealing and caring for a special group of children with slightly different behavioral pattern from those who the society will tag ‘normal children’.

and

Mr Ayiem……said the value he attach to the welfare of his son does not make him see the money spent as expensive, but an investment which is worth giving any individual with confidence that, though it will take time, his son will be independent some day.

and most of all

….socially people see it as a stigma, but I don’t. I have had occasions where I go out with her to supermarket, church and social gathering and you notice people looking at you in a particular way, but I don’t care because she is my daughter. I give her all my love and I display it publicly. I want her to know that she is one of the must loved children in the world.

………..

autistic children and children with Down syndrome can contribute significantly to the society ,if only they are accepted. When we are at home for instance, we help her with her school work by showing her what to do and what behaviour is proper. Of course, like any other child she may go off the track but we help her to do the right things.

……….

If you play any song on radio or on CD and ask who sang it, whether American or Nigerian, she will tell you the name of the artiste. How she knows the name of the artiste and their songs, I don’t know. So if she wants to take that line, I will encourage her all the way. Wendy to me, is one in a million and for me she is a normal child.” From this discussion with Mr Ojugbuna I saw the picture of a father who believes in his child and that was reflected in the behavior of Wendy.

Nigeria is classed as a developing nation (what used to be called ‘third world’). I’d say that in my opinion it has developed a whole hell of a lot further and faster than some people I can think of over in this supposedly enlightened culture.

Green Our Vaccines Eve – Dr Jeffrey Brent

3 Jun

On the eve of the ‘green our vaccines‘ rally, I thought it might be interesting to share a ten minute or so segment from the Autism Omnibus.

Giving evidence is Dr Jeffrey Brent:

Jeffrey Brent, M.D., Ph.D. is a sub-specialty board certified medical toxicologist. He is an active member of the medical school teaching faculty and is an attending physician on the clinical pharmacology/toxicology consultation service at the University Hospital. Currently he holds the rank of Clinical Professor of Medicine at the University of Colorado Denver. Dr. Brent has a long list of publications, virtually all related to clinical toxicology. He is senior editor of Critical Care Toxicology: The Diagnosis and Management of the Critically Poisoned Patient and serves as Editor-in-Chief of Toxicological Reviews, a major international state-of-the-art review journal devoted to human toxicology.

Dr. Brent is the former President of the American Academy of clinical Toxicology, the largest organization in the world devoted to this discipline. Currently he serves as a member of the Board of Directors of the American College of Medical Toxicology.

We pick up testimony around five and half hours into day 15. I’ve transcribed directly from the audio, so please forgive minor errors. Emphasis is Brent’s, inserts are marked [].

Q: Dr Mumper discussed today some key aspects of chelation therapy….as a medical toxicologist do you see any reason for the chelation to remove mercury from either Jordan King or William Mead in these cases?

Absolutely not….there is no test in medicine that is more valid for for assessing mercury toxicity than an unprovoked urine mercury concentration.

[For Jordan King and William Mead]…their unprovoked urine concentration is exactly in the normal range.

On the other hand, they have been chelated. And the justification for that chelation with regard to mercury comes from what you see in the right hand column where in both cases, 4 out of 5 provoked examples have been…uh…increase urine mercury. Well, you’re supposed to have increased urine mercury with provoked examples! Therefore there is absolutely no indication based here or anywhere else I saw in the medical records that suggest that there is any mercury effect in these children and therefore that was absolutely no reason to chelate them for any mercury related reason.

Q: Dr Mumper also testified today to seeing an increase in lead levels in children and that chelation may help with the adverse effects from lead. Is there any scientific or medical basis for that statement?

It is true that chelation therapy is the appropriate therapy for lead toxicity. However, the records do not reflect any lead toxicity in the case of either of the two children at issue here, Mead or King. Neither of them have had an elevated blood lead level and a blood lead level is the ‘gold standard’ test for lead toxicity. Because, contrary to testimony that was given earlier today [Dr Mumpers – KL], blood lead remains elevated and it will be elevated for years in children that have lead toxicity. It equilibrates with tissues and if there’s high tissue burden there will be high blood burden.

Q: So you disagree with Dr Mumper that the blood levels would only test for acute toxicity?

Thats absolutely wrong. So there was no indication therefore for treating these two children with a chelator for any lead effects.

Q: Is there any other accepted tests for lead toxicity, other than blood?

Blood is the ‘gold standard’ and there are no other accepted tests in medicine now that we can routinely get blood/lead levels.

Q: Was there anything about the levels you observed in the medical records [of either King or Mead – KL] post chelation that would cause you to think that these were extraordinarily high levels of excretion upon chelation?

No. You always expect to see levels in the urine bump post-chelation. It would happen to any one of us. There are no validated reference ranges post chelation, thats why they’re not used in medical practice – there is no valid way of using them and in fact if you look at these two children they had mild increases in urine/lead excretion as I recall but they were nothing different than what you would normally expect to see if you gave a chelator to them.

Q: And you’ve given chelators to a lot of children?

I’ve chelated a number of children.

A: There’s nothing here that would be out of the ordinary – from your experience – absent, even in the absence of a standard reference range.

Well, in truth we don’t (?) urine/leads because the ‘gold test’ is blood/lead so I haven’t looked at many urine/leads in children that I have chelated. So I can’t speak to that in my experience. But I have seen a number of patients now come to me because of these ‘doctor’s data‘ type of laboratories which are based on urines – chelated urines – and they always have high leads in their chelated urines and I tell them ‘well, lets just do the gold standard test, lets get a blood/lead level and so far, 100% of the time they’ve been normal.

Q: Are the post chelation mercury levels in either of these two boys in excess of what you would see…or in excess – I take it there’s no standard reference range…?

No standard reference range. You do tend to see small increases, they’ve had minor increases in their mercury excretion over the reference ranges over the non-provoked. It was certainly not very dramatic and certainly well within the range of what you would expect to see. For example if you look at the studies that I cited where they were studying chelators and they were looking at the effect of the chelator on urine/mercury excretion.

Now thats a valid time to do a post chelation mercury – if you want to study the effect of the chelator. And if you look at the normal controls in those studies, when they give them a chelator you do see some increase in the urine/mercury excretion and its a moderate increase and its really not very different than what we saw in these children [King and Mead – KL]

Q: Have you chelated children for lead or mercury toxicity?

Actually, both.

Q: And under what circumstance did you chelate for mercury toxicity?

I’ve had a number, but probably the most common and the most dramatic relates to the fact that I live in Colorado and in the Rocky Mountain area there people who are still panning for Gold…..[they extract the gold from ore using liquid mercury]…and to get rid of the mercury [afterwards] they will heat it. In their house. In their kitchen. When you volatilise mercury like that [it gets into the air]….and I’ve had a number of families have become profoundly mercury poisoned.

Q: So when Dr. Mumper said that she saw ‘mobilisation’ of heavy metals by chelation and then assumed that the chelation was beneficial – do you agree with that statement?

No, I think what you see is – you give a chelator, you look in the urine and there’s more than in the non-chelated reference range is for the metals in the urine and its what you would normally expect. It tells you nothing about mobilising stores of heavy metals.

Q: Dr Mumper also talked about supplements. And those supplement were referred to increase Glutathione to treat mercury toxicity. Do you agree that that therapy is warranted in cases?

Glutathione? No. Supplemental glutathione to treat mercury toxicity has no validity at all.

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