Two new (not sure what to call them) papers? Abstracts? Press releases? Came out this week concerning autism and vaccines. Also, one _actual_ study was released.
Study number one is entitled…well, actually, as far as I can tell, it doesn’t have a name yet. The first draft (which I saw in October last year) was called *Porphyrinuria in childhood autistic disorder*. The authors are Robert Nataf, MD Corinne Skorupka, MD, Alain Lam, BSc , Anthea Springbett, PhD, Lorene Amet, DPhil and Richard Lathe, DSc.
Richard Lathe is the heavy hitter in this bunch. He’s quoted in New Scientist as saying:
It’s highly likely that heavy metals are responsible for childhood autistic disorder in a majority of cases
Strong words. However, as I said at the top of this piece, this study has not yet even been published yet. The only scientists who’ve read it are the scientists that performed the study. As far as I know, its not even been accepted for publication by Toxicology and Applied Pharmacology. I _do_ know it was submitted to The Lancet and I’m guessing as the authors moved on to Toxicology and Applied Pharmacology that it was rejected by The Lancet.
I can’t discuss the science as it may have changed since the first draft I have a copy of. In the absence of the science, we can’t really discuss much of any importance.
However, we can take a look ‘behind the curtain’ at some of those names can’t we?
_Lorène Amet_ is an Editor of Medical Veritas – a journal that PubMed does not, as far as I know, index. MV’s ‘mission statement’ includes:
MV…recognizes that medical modalities promoted by public health departments and authorities are often compromised by conflicts of interest with pharmaceutical companies and other political and personal agendas. These areas of detrimental influence include, but are not limited to, the following: vaccinations, pharmaceutical drugs, pregnancy, childbirth and child care practices, treatments for cancer, AIDS and other diseases, food additives, pesticides and herbicides, water fluoridation,d ental procedures, including amalgams, medical procedures and surgeries
Nothing like going in with a preconceived agenda eh? That’ll help with scientific objectivity.
Ms Amet’s colleagues from Medical Veritas include Mohammed Ali Al-Bayati, who doesn’t believe HIV leads to AIDS, as well as someone called Kenneth P. Soller, MD who I’m guessing is Kenneth P. S *t* oller, MD – our new friend who likes HBOT for autism and who tried to smear Paul Shattuck and Andrew ‘Wakers’ Wakefield.
Source – NB: there is at least one person who is now deceased listed on that page.
Here’s some snippets from Ms Amet’s CV:
In the process of setting up an Autism Treatment clinic with the charity Autism Treatment Trust (former Action Against Autism). Principal Scientist.
(UK version of Generation Rescue led by Bill Welsh)
Received DAN! (Defeat Autism Now) doctor accreditation, Dec., 2005. Initiated and organised with Action Against Autism a conference called Treating Autism, Edinburgh UK, October 14-15, 2005. Participated to two clinic days with Dr. McCandless and Dr. Usman (16 children with autism). October 16-17, 2005.
Well, I guess we should all be reassured at how impartial any study featuring a DAN! practitioner and Editor of Medical Veritas will be. I sincerely hope their study has moved on since the first draft.
The second study/paper/abstract/thingy does at least have an actual title. It’s title is: *PERSISTENT ILEAL MEASLES VIRUS IN A
LARGE COHORT OF REGRESSIVE AUTISTIC CHILDREN WITH ILEOCOLITIS AND LYMPHONODULAR HYPERPLASIA: REVISITATION OF AN EARLIER STUDY* which is a bit of a mouthful. It basically claims to substantiate Andrew Wakefields earlier findings with the MMR vaccine.
Yet again, however, despite this being reported in at least two mainstream newspapers, it should be noted that the actual study has not been published. It will be discussed at the upcoming IMFAR conference in Canada but no-one has seen the paper yet. The presentation could not even legitimately be referred to as an abstract yet.
The authors are: Steve Walker, Karin Hepner, Jeffrey Segal and Arthur Krigsman.
There appears to be a fund raiser for this study on the website of the NAA where Andrew Wakefield and Jeff Bradstreet (who apparently used to recommend exorcism for autistic kids) are listed as ‘consultants’.
Lets not forget that the NAA have made a big deal of ‘outing’ Paul Shattuck’s non-existent connection to Merck so I wonder if we’ll be seeing them play the ‘conflict of interest’ card in the case of this study? Doubtful I’d guess.
However, the big connection here is Thoughtful House, Andrew Wakefield’s project. Steve Walker, one of the authors listed above, is on the board alongside such scientific luminaries as, uh, Martie Maguire of the Dixie Chicks.
A keen eyed observer might also note that one of the other authors is a partner of Andrew Wakefield’s. This hardly instils a great deal of hope in the objectivity of this paper.
So there’s our two non-papers which we can’t really discuss the science of as none has been made available. However, that hasn’t stopped people from going ahead and reporting on them as if it were.
The third bit of news from the autism/vaccine issue is (gasp!) an _actual_ paper, which has been peer reviewed, submitted and accepted for publication in a decent journal. Its title is: *Is There a ‘Regressive Phenotype’ of Autism Spectrum Disorder Associated with the Measles-Mumps-Rubella Vaccine? A CPEA Study.*
And what does it say?
There was no evidence that onset of autistic symptoms or of regression was related to measles-mumps-rubella vaccination.
Of course, that story doesn’t get mentioned – its not as interesting as wild speculation.
Left Brain Right Brain 
Are you referring to the same ‘research’ described in the Daily Mail? That sure sounds like a poor bit of science.
http://www.dailymail.co.uk/pages/live/articles/news/news.html?in_article_id=388051&in_page_id=1770&ct=5
The comments on that article includes some classics, like
“They condemn alternative medicine and herbs with no side effects. Will not carry out tests to show their healing properties. They then produce drugs (from which they make billions) then inform you they are killing you with their side effects. Are these not crimes against humanity.”
Look people, the Emperor isn’t wearing any clothes…
Looks like the press is jumping the gun—–Walker’s research as described in the IMFAR abstract is a poster presentation, not even a full paper being presented.
Here’s a link to the journal where the porphyria paper is supposed to be published. The rumor was that it would appear on May 27, but it’s not there yet. This certainly isn’t a journal that specializes in autism. If you type autism into the search bar at the top, you find only one paper, and not the one we are discussing.
Sharon – (I got your email by the way ;o) ) – I left a comment at the Mail site this morning but as it ran contrary to the Daily Mail party line it hasn’t been sanctioned.
Hi Kev
It’s funny, but the Daily Mail didn’t publish my comment either!
It must be a conspiracy.
Regarding the Mail they have ignored two of my attempts. It is not like they are overwhelmed with posts. The most talked about stories in the Mail today are attracting between 40 and 60 posts. I think I will post my next one to them one word at a time.
If you follow the link on Kristina’s AutismVox blog it looks like Steve Walker’s study has stalled due to lack of funds and he is touting for donations. Thanks for that Kristina. Though for one awful moment I thought you were fundraising for NAA !! Please forgive me.
The Porphyria paper is nowhere on the TAP site. I am writing to the editor of the New Scientist to ask if they confirmed the paper’s acceptance with the editor of TAP.
From what I could tell in the news stories, the measles virus story seemed like a bit of a stinker – no non-autistic control subjects!
It actually seems like such a glaring omission that I’m in disbelief and wonder if I’m missing something. Doesn’t the average high school science project usually demonstrate an understanding of the importance of controls? If you really wanted to be able to say something of importance about the etiology of autism, wouldn’t you look for something that differentiated autistics from non-autistics?
——edited to add:———–
I asked the same question on Kristina Chew’s blog at http://www.autismvox.com/2nd-study-confirms-wakefields-1998-findings-on-mmrregressive-autism-link/ and got informative answers.
Silly me was deluded enough to think that this sort of lunacy hadn’t reached my shores yet. Guess I was wrong:
“..I’m so proud to be able to say that whilst there are only 250 trained DAN (Defeat Autism Now) practitioners worldwide mainly in America, we now have 25 NZ trained doctors . On a per capita basis I believe we are now world leaders! At last every NZ ASD child is able to access help onshore- my overriding goal”
Have they changed it from Defeat Autism Now to Dead Autistics Now or what?
-is gagging at the pervasive grossness of all that is going on in autism lately-
Lisa – incredibly it seems that if the poster? presentation? (whatever we’re supposed to think of it as) is representative of the paper itself, then you’re absolutely right – no mention of controls at all.
I’m really not sure what to make of that. I would’ve mentioned it in my post but I just assumed they’d used controls. Its such a basic point that I just _assumed_ they would’ve done it.
I can’t see any decent journal publishing a non-controlled study. It would be laughed out of the editor’s office, surely?
By contrast, there is another presentation at IMFAR this year that _does_ use controls: *NO EVIDENCE OF PERSISTING MEASLES VIRUS IN PERIPHERAL BLOOD MONONUCLEAR CELLS FROM CHILDREN WITH AUTISTIC SPECTRUM DISORDER* – funny how the Telegraph and the Mail seem to have ignored that one! I guess their SafeMinds/NAA informant ‘forgot’ to tell them about it.
Now I’m wondering if David Kirby agrees with Al Bayati that AIDS isn’t caused by HIV. I’m reading “As the Band Played On” for a class, interesting stuff. I’m pretty sure every sane person now understands that HIV is the cause of AIDS, which pretty much leaves Al Bayati, who got his PhD from UC Davis, in the not-sane category… still I’m wondering where Kirby stands on this, since he’s been an AIDS activist.
UCD used to be a major center for the study of the Feline version of AIDS and they had lots of monkey’s infected with some simian version, if I remember correctly, back when my kids were little (and the locals wondered about the local AIDS research and worried a bit.)
I wonder if Kirby has a hatred for the CDC, because of the situation around “the band played on,” which doesn’t really implicate the CDC so much as it does congress and Pres. Reagan, and members of the gay community itself – and general anti-gay sentiment and sex squeemishness in the US.
Maybe not. It would be interesting to ask Kirby, but he doesn’t answer questions from anybody (on the Internet) as far as I can tell, and he seems to have a particular dislike for me. That’s ok. I’ll manage somehow.
Kassiane, maybe it’s “Damaging Autistics Now!”
The mercury gang are holding the “Autism One” conference now, I suppose there will be a large number of presenters from “Autism One” who will be rushing off to be at IMFAR (snerk) in a few days, busy, busy…
CAN has been a big supporter of IMFAR. I wonder if Sally Bernard ever goes to IMFAR. I stood next to Portia Iverson at IMFAR 2 years ago, I didn’t introduce myself. Rick Rollens usually goes. I can’t see him understanding any of the presentations, though. I think he goes to collect email addresses of sort of peripheral people. That’s my impression, anyway, then he adds them to his email list for sending out his quarterly DDS announcements.
Kev: “The only scientists who’ve read it are the scientists that performed the study. As far as I know, its not even been accepted for publication by Toxicology and Applied Pharmacology. I do know it was submitted to The Lancet and I’m guessing as the authors moved on to Toxicology and Applied Pharmacology that it was rejected by The Lancet.”
As far as I am aware, if the paper was rejected by one scientific journal, it’ll be rejected by the rest as well. I’m an associate editor (international) for Good Autism Practice and, as far as I know, we wouldn’t publish a rejected paper (unless its rejection was not based on any lack of quality in the science, but rather because of inappropriateness of the topic for the journal submitted to).
I just had a look at the DM site… sensationalism and nothing else… and not one comment being passed which contradicts the article.
That’s not even *poor* journalism!
“I can’t see any decent journal publishing a non-controlled study. It would be laughed out of the editor’s office, surely”
Kev:
I remember back in 1982 when the New England Journal of Medicine (top tier journal surely) published ed ritvo’s and BJ Freeman’s preliminary report on fenfluramine as a drug of choice for autistic children. In an uncontrolled study of only three children they claimed IQ scores were raised after taking this medication. Their work was never replicated by several independent investigators and then Phen-Fen was taken off the market by the FDA many years later due to its causing cardiac problems.
And don’t forget ivar lovaas’s supposedly contolled study where there were 11 boys and 8 girls in the control group supposedly functionally randomly assigned to the control group (though total random assignment was not practiced due to ethical considerations) when the ratio of autistic boys to girls in the general population of autists is at least 4 to 1. (The Journal of Clinical and consultating psychology which published the study is also considered a top tiered journal)
No, where ASD’s are concerned professionally practiced science does not count
And don’t forget ivar lovaas’s supposedly contolled study where there were 11 boys and 8 girls in the control group supposedly functionally randomly assigned to the control group (though total random assignment was not practiced due to ethical considerations) when the ratio of autistic boys to girls in the general population of autists is at least 4 to 1. (The Journal of Clinical and consultating psychology which published the study is also considered a top tiered journal)
That’s one of my pet peeves and I might log about it in the near future. If a study came out for any other treatment (say, CFGF) with the kind of evidence presented by Lovaas (1987), it would be immediately dismissed as inconclusive. And gender as an indicator of bias is non-trivial. Boys might simply be diagnosed more often than girls. A number of studies document considerably less severity in boys.
JonM: “though total random assignment was not practiced due to ethical considerations”
Actually, his ethic for not going fully random was pretty poor. Something about the denial of treatment to someone, although the treatment had not actually been found efficacious by that time… denial of an as-yet unproven treatment is not unethical.
Tempral issues aside, had that paper been offered to me for review at Good Autism Practice, I would not have allowed it for publication.
Brainfarts at their best: “Tempral issues aside”…
*Temporal*…. I work way too hard!
RESEARCH REVIEW INTERNATIONAL Vol. 20, No.1, 2006 Biomedical Update: Harvard researchers confirm Gl/autism link Harvard physician Timothy Buie recently reported that biopsies performed by him revealed the presence of chronic inflammation of the gastrointestinal tract, as well as the presence of lymphoid nodular hyperplasia, in 15 of 89 autistic children. The findings parallel those of Andrew Wakefield, the researcher who first identified the presence of a unique type of gastrointestinal disorder in children with autism spectrum disorders. Buie told a conference in December, “These children are ill, in distress and pain, and not just mentally, neurologically dysfunctional.” Buie, Rafail Kushak, and colleagues also have measured the activity of dissaccharidases (enzymes that break down carbohydrates in the intestine) in tissues obtained from duodenal biopsies from 308 autistic individuals, comparing them to samples from 206 non-autistic controls. All of the subjects underwent endoscopy for suspected gastrointestinal problems. The researchers report, “Autistic individuals with diarrhea [206 individuals] demonstrated significantly lower maltase activity than non-autistic individuals with diarrhea. Frequency of lactase deficiency in autistic individuals with failure to thrive [five individuals] was significantly higher (80% vs. 25%) than in non-autistic individuals with failure to thrive, and frequency of palatinase deficiency in autistic individuals with diarrhea was significantly higher than in nonautistic individuals with the same gastrointestinal problem.” Autistic and non-autistic individuals with other gastrointestinal problems exhibited similar frequencies of disaccharidase deficiencies. These findings further support the link between autism and a novel form of gastrointestinal disease, and are consistent with clinical evidence that many autistic children improve physically and behaviorally when they are placed on gluten- and casein-free diets and receive supplements of disaccharidase enzymes. â?? â?? â?? “Gastrointestinal symptoms and intestinal disaccharidase activities in children with autism,” Rafail Kushak, Harland Winter, Nathan Farber, and Timothy Buie, Abstract of presentation to the North American Society of Pediatric Gastroenterology, Hepatology, and Nutrition, Annual Meeting, October 20-22, 2005, Salt Lake City, Utah. “Gastrointestinal symptoms and intestinal disaccharidase activities in children with autism,” Rafail Kushak, Harland Winter, Nathan Farber, and Timothy Buie, Journal of Pediatric Gastroenterology and Nutrition, Vol. 41, No.4, October 2005. “Harvard Clinic scientist finds gut/autism link, like Wakefield findings,” FEAT Newsletter, December 2005. Address: Rafail I. Kushak, Pediatric GI/Nu- trition, Massachusetts General Hospital, Boston, MA02l14.
Do you know anything about this??? Is this true?
Should my child be on gfcf diet?
People on some of the other forums are already quite excited about the Lathe study despite the fact that it has yet to be published. I can’t imagine how impressive his research has to be in order to justify the comment, “”It’s highly likely that heavy metals are responsible for childhood autistic disorder in a majority of cases”.
The porphyrin study cites that Bernard classic: Autism as a novel form of porphyria… I mean, mercury poisoning.
They are working with a “large group of French children,” who got how much thimerosal in their vaccines?? Why do I think, “none”? Anyone know? The French haven’t had an “autism epidemic” they only count like 3 in 10,000 or something as their autism rate, and the usual etiology is “refrigerator mother” style Freudian whatnot.
What I haven’t figured out is, they seem to be using porphyrins as a test for mercury exposure. Why not just test for mercury exposure? What about all the parents who are chelating their Asperger’s kids? This study showed that the AS kids had normal porphyrins.
“Despite evidence for an association, one may not rigorously conclude that heavy metals are causally responsible for autism. Children exposed to heavy metals are likely to be co-exposed to other environmental toxins including polychlorinated biphenyls and dioxins that can also raise porphyrin levels (Marks et al., 1982; Hill, 1985; Daniell et al., 1997); …”
They chelated the kids with oral DMSA and then later tested their urinary porphyrin level (?) and decided that the kids had less metal in them, so they had less porphyrin in their urine…. but they forgot to say that the kids were cured, or going to be cured if they kept chelating them. The Rett girls had extra high porphyrin’s, too, but they only had 2 of them.
I really don’t understand why they didn’t just test them for heavy metals, they didn’t test to see if any heavy metals actually left the kids when they were being chelated, either, why not? I mean if they did a 24 hour urine collection wouldn’t they know exactly which metals left the kid and then supposedly allowed the porphyrins to drop? The paper says that arsenic can cause high porphyrin levels, so maybe the kids are getting exposed to arsenic in pressure treated wood or something… wouldn’t it be good to know that so they can go look for a source of exposure?
At any rate, they aren’t suspecting thimerosal, but environmental mercury from air-pollution, as far as I can tell. Not historic exposure, but ongoing exposure.
Dori – I can’t find a free version of this paper but some of the statements contained in the quote you pasted in are oddly inconsistent with Buie’s previous utterances on the subject.
_”Dr Timothy Buie, a paediatric gastroenterologist who works at a clinic specialising in autism and related disorders at Massachusetts General Hospital. Dr Buie has carried out colonoscopies of hundreds of children, both with and without autism, and he has seen nothing to him that autistic children have a new or distinctive form of bowel disease.”_
_”I am not sure I can support, at this point, [the view] that the findings of colitis are novel or different from other conditions that we know,” Dr Buie told the BBC.”_
Source
That was reported less than 3 months before this paper was announced.
Other than that, I can’t really comment as I haven’t read the paper. I don’t think Buie could be described as a quack though. He’s a very good scientists from all I know about him.
As far as the diet goes – we tried it, it didn’t work for us but I can’t see any harm in it. We ran the major points of it past our GP before we did it and they were OK with it from the standpoint of nutritional health – I’d strongly suggest you did the same before starting it.
dori, If your child has bad gut pain, then you might check to see if he’s lactose intolerant. They are giving an enzyme, which some kids seem to be lacking, just like people who are lacking in lactase can take lactase and then digest lactose. If they don’t have natural lactase what happens is that the undigested lactose (milk sugar) sits in the gut and does two things, it pulls water from the body into the intestines like when you put sugar on strawberries and the sugar pulls the water out of the strawberries, or like salt can pull water out of meat…. the water makes diarrhea and bacteria can make gas out of all the extra milk sugar that is not getting absorbed, but staying in the gut… so lactose intolerant people have bad gas pains and diarrhea if they drink milk…
You can test for this by giving the person some milk and then testing their breath, they will have a certain gas coming from their lungs…
Buie is saying that autistic kids can’t digest maltose and other disaccharides…. I know that some people can’t drink/eat corn sweetener because they get the same effect as lactose intolerance.
So Buie gives the kids a dissacharidase enzyme and they feel better. No doubt. If they need to be off milk because they are lactose intolerant, they can still eat some kinds of cheese, especially if they take the lactase tablets… that’s not the same as a casein allergy. Casein is not milk sugar.
If the child is actually allergic to gliaden or gluten, then he shouldn’t be eating it. But it’s illogical to put all autistic kids on a restricted diet when they might not need it.
They are not finding measles so I don’t think they are duplicating Wakefield’s “work.” The majority of autistic kids don’t have any particular gut problems and the ones who do have gut problems usually have constipation, not diarrhea. Kids who have constant diarrhea are a rarity among autistics. Maybe that’s why not too many people got freaked out by the EoHarm descriptions of diarrhea as a “sign of mercury poisoning” in autistic kids. They didn’t see it in their own kids. And anyway, maybe all that diarrhea in the book, “Evidence of kids with Diarrhea,” was lactose intolerance or disaccharide intolerance?
_”They are not finding measles so I don’t think they are duplicating Wakefield’s “work.—_
Meant to mention that – its a good point. Sounds like a FEAT wrinkle to me. I doubt Buie would agree with that interpretation.
Even if you do find measles in the gut of children with autism – you don’t know if it’s there in the gut of children who don’t have autism. Strangely enough, it’s quite difficult to find people who will volunteer their healthy/’normal’ children to have a gut biopsy.
it is an abstract, since it has been published in the abstract book, interestingly, “vaccine” virus is not mentioned once:
PS3.30 PERSISTENT ILEAL MEASLES VIRUS IN A LARGE COHORT OF REGRESSIVE AUTISTIC CHILDREN WITH ILEOCOLITIS AND LYMPHONODULAR HYPERPLASIA: REVISITATION OF AN EARLIER STUDY
Steve Walker, Karin Hepner, Jeffrey Segal, Arthur Krigsman, Wake Forest University School of Medicine
Background: Autistic enterocolitis, consisting of a nonspecific ileocolitis coupled with ileocolonic lymphonodular hyperplasia (LNH), was first introduced as a new, potentially virus-induced disease entity eight years ago in a group of ASD children with developmental regression.
Objectives: The primary objective of this study was to examine ileal biopsy tissue in a large cohort of pediatric patients who carry a diagnosis of regressive autism and whose chronic gastrointestinal symptoms warranted diagnostic endoscopic evaluation, for evidence of measles virus RNA.
Methods: Patients who had been diagnosed with autism and who were referred to a pediatric gastroenterologist for evaluation of chronic GI symptoms were eligible to participate in this IRB approved study. For each patient, medical histories, vaccination records, histopathology reports, and ileocolonoscopic biopsy tissue were available for evaluation. Terminal ileum (TI) biopsy tissue was assayed by RT-PCR for the presence of measles virus RNA and PCR-positive samples were sequenced.
Results: Medical and clinical data have been collected for >275 patients who fit the study inclusion criteria. PCR analysis on TI biopsy tissue from an initial 82 patients showed that 70 (85%) were positive for the F gene amplicon. Fourteen have been verified by DNA sequence and an additional 56 amplicons are being sequenced now. Work is ongoing to assay the remaining specimens (~200) and to identify and assay relevant control tissue samples.
Conclusions: Preliminary results from this large cohort of pediatric autistic patients with chronic GI symptoms confirm earlier findings of measles virus RNA in the terminal ileum and support an association between measles virus and ileocolitis /LNH. Sponsors: ARI; NAA; individual donations
Even if you do find measles in the gut of children with autism – you don’t know if it’s there in the gut of children who don’t have autism.
Stop using logic! You have to BEEELEEEEEVE! Can I get an amen?!
Why not just test for mercury exposure?
Because it’s darn hard to find. It’s kind of like the “hidden horde”.
The Rett girls had extra high porphyrin’s, too, but they only had 2 of them.
It’s ok if they do these kinds of studies. But they should use developmentally delayed kids as controls. Having control groups of Fragile-X kids or Rett girls seems like a good idea.
Porphyria has many causes, and like other conditions, it would not be surprising if it’s more common among autistics.
What I find interesting is this. Is it measles or is it heavy metals? Or does the toxic autism community think it’s both? Both in all children, or either one in a specific child?
I for one think both theories are proposterous.
_”Porphyria has many causes”_
Including (IIRC) a purely genetic one.
“What I find interesting is this. Is it measles or is it heavy metals?”
Josesph, of course the answer is likely different for any individual family, but to one group of vaccine injury plantiffs, I think it possible that they would answer that it could be both. The common denominator could appear to be more “some vaccines” in general, regardless of the lack of real scientific proof for either measles or heavy metals as causative of autism.
Source
Section A.
Dr. Robert Nataf will appear on FAIR’s website, shortly. If you can get past his thick french accent, you may learn something.
I think I’d rather wait for the actual paper Erik if its all the same to you.
ERIK N,
Considering the bunk you have recorded the Geiers saying and put up on your website, why should we give credibility to Nataf? Though, I want to know why he didn’t just test for mercury if he thinks it’s mercury, and I want to know how much thimerosal the French kids were exposed to and why they aren’t having any autism epidemic at all.
Does he say that porphyria is the same as autism? Did he say that that was why the kids sometimes get pink and red urine when they get injected with MeB12, Neubrander style? Did you catch what the Nasal B12 guy said — that MeB12 can cause serious regression in autistic kids? Dude.
Did anyone comment on Buttar’s supposed cure for allergies; urine injections? Was there a booth for urine injections this time? We weren’t able to go Erik, so maybe you could tell us. Which is bigger this year, HBOT or Far IF Saunas? TD or IV? Chemical castration or porphyrins?
Ms. Clark is correct about the prevalence of autism in France. See, for example, Fombonne (1997): 5.3 in 10,000. This is the same as the prevalence in the U.S. and Europe in the 1970s for Kanner autism. It does indicate a prevalence of 16.3 in 10,000 if “other PDDs” are considered. This is a bit on the low side. Either their conceptions of autism are not up to date or one would have to conclude that they are doing something to keep the numbers down.
A previous survey found 4.9 in 10,000. Another one in 1989 found 10.8 in 10,000, but only 5.1 in 10,000 when DSM-III was applied.
Golse (1995) claims to state the French position on autism: “The concept of a plurifactorial determinism and the psychopathological view of the disorder which is not thought of in France as susceptible to be reduced to a handicap of a primarily cognitive nature are therefore underlined. Thus the importance of a unified multidimensional therapeutic approach that considers the different consequences of the illness without forgetting its fundamentally interactive nature (‘autistic-making process’). Today, the psychoanalytic approach tends to concentrate on the analysis of secondary factors of upholding and on the significance given in the after-thought by the autistic disorders within the family group.”
Fombonne (1993), as I see it, documents that the French are not inherently less autistic than Americans.
Full text of the Nataf study:
Click to access MSFINAL.pdf
2.6 fold increase… that’s the number the New Scientist has jumped on.
I have big issues with the control group chosen for this study (only 12 kids after 6 exclusions). But there is comparison made with another studies’ control group (“slightly in excess (34%)”) which may lend a bit more credence to this study. However, all the “slight” variations add up, male bias “17.5%”, age variations… etc.
If these two numbers (34% + 17%) were taken into account then perhaps the 2.6 fold increase, is only 1.7 fold. Still significant according to their statistical analysis (which I’ll accept at face value)…. but not quite as dramatic as the number that New Scientist seems to like.
Also, be impressed by the scatter in their graphs.
Camille said: “Which is bigger this year, HBOT or Far IF Saunas? TD or IV? Chemical castration or porphyrins?”
HBOT is getting a lot more attention because it is getting results. I’m sure that bothers you. Stay tuned to FAIR’s website for more HBOT interviews.
There was a Sauna booth at the conference… but not much traffic going to it. Not too many parents into that from what I can tell. No injectable urine (whatever that is) at Buttar’s booth (which was mostly unmanned the whole conference.) Buttar has fallen out of favor with a lot of the parents. He made one hell of a great chelator… but he’s too expensive, doesn’t release his data and doesn’t cooperate with the autism conferences very well.
TD chelation is king with most parents who practice it. Porphyrins testing is becoming more popular as a measure of total body burden for mercury. Not as popular as hair, fecal and urine metals tests yet… but testing with those methods has its problems with children who are nonexcretors. Porphyrins testing doesn’t require a baseline test, followed by a chelation challenge test.
But chemical castration? Nobody has castrated their children. Lupron THERAPY is helping kids. Mine included. We have NEVER seen the kinds of behavioral and cognitive gains from anything else we’ve tried. Lupron is like a miracle. It’s working so well we’ve stopped chelation for now. Based on my daughter’s toxicology and mineral profiles, we believe we’ve depleted most of her body mercury. No telling about the brain mercury though. But we DID manage to improve her eyesight by 60% over a period of 2 years.
Camille, you’re so adamant against curing autism that you reject EVERYTHING biomedical. All of you folks do. I have not seen you accept ANY biological-based research that sheds light on the biochemistry of this disorder. Your position is bizarre… especially in the face of the stories coming out where parents discuss their severely autistic kids making rapid progress with biomed interventions and being mainstreamed in their schools…
Hello Erik!
You write just whatever comes into your head don’t you. Did you ever read what I wrote about Margaret Bauman? I met her and talked to her. I promoted what she said about a fraction of the kids with mitochondrial DNA problems doing better with some kind of mix of nutritional supplement kinds of stuff.
It’s evidence based. She doesn’t give it to all the kids just to see if they do better, the kids get rigorous testing to see if they have a mitochondrial problem, which includes, if I’m not mistaken a tissue biopsy. I hear that you made your daughter sick by chelating her on top of the Lupron and so you were told that that was probably because something was feeding the yeast?
Whatever, Lupron is not approved for little girls who don’t have precocious puberty. You are being suckered by the Geiers, pappa doc is way out of his league, and baby BA isn’t a doctor and where is he in grad school anyway? What’s he studying? Business?
You are helping the Geiers to con parents. Buttar doesn’t release his data because he doesn’t have any. Parents have said that he is giving kids injections of their own urine, haven’t you heard? It cures allergies. Buie had some evidence that some kids need to be on enzymes if they are lacking in an enzyme, but checking for the lacking enzyme is easy if it’s like checking for missing lactase. They test for how much hydrogen gas is in the kid’s breath. No biopsy necessary.
So when you say I reject “EVERYTHING biomedical” you are lying, just to make that perfectly clear.
I reject the Geiers and their dangerous big pharma drug for non-existant sheets of testosterone and mercury.
I reject TD DMPS that apparently doesn’t work because Buttar is moving on to IV whatever it is.
I reject urine injections ala Buttar.
I reject B12 injections because evidence shows that oral B12 works just fine, and further autistic kids don’t need it, unless they happen to have pernicious anemia, still they can take pills for it, don’t need injections.
I reject your daughters’ “mineral profiles” if you are getting them from quack labs and I pity your daughter for what you are putting her through based on misleading quack lab results.
True HBOT causes DNA damage, did you know that? the HBOT toys you guys play around with don’t deliver any more oxygen to the kids’ blood than they’d get from breathing O2 through a nasal canula at ambient air pressure.
You people have been suckered over and over again and you keep coming back for more, and to your everlasting shame, Erik, you help ensnare other parents into the same trap.
Porphyrins aren’t some magical new measurement. If you want to know if your kid has porphyrins in his urine, put some in a glass jar in the sun. It will turn reddish or purplish. That’s why they have you wrap up the samples in foil to keep the light away from the sample. It’s just a new con job, Erik. Porphyrin levels can be affected by lots of stuff, not just mercury.
The fact that you admit to using provoked urine as a signal of mercury toxicity marks you as a sucker for quackery.
“Ms. Clark is correct about the prevalence of autism in France. See, for example, Fombonne (1997): 5.3 in 10,000. This is the same as the prevalence in the U.S. and Europe in the 1970s for Kanner autism. It does indicate a prevalence of 16.3 in 10,000 if “other PDDs†are considered. This is a bit on the low side. Either their conceptions of autism are not up to date or one would have to conclude that they are doing something to keep the numbers down.”
I think it is important to remeber that this study was Fombonne’s first venture into autism epi and that the criteria used have been descibed by Fombonne as “Clinical, ICD-10 like” as opposed to actually using thr ICD-10 or DSM-IV.
Hi Erik,
“Camille, you’re so adamant against curing autism that you reject EVERYTHING biomedical. All of you folks do. I have not seen you accept ANY biological-based research that sheds light on the biochemistry of this disorder. Your position is bizarre… especially in the face of the stories coming out where parents discuss their severely autistic kids making rapid progress with biomed interventions and being mainstreamed in their schools…”
The same argument was once used to prove that succubi and witchs existed in the middle ages. Sorry, Erik, the stories don’t make it so. Also, you all don’t seem to be taking any steps to actually researching these methods to see if they are baloney or not. You are accepting it based on the witnessing of your fellow believers.
Your a regular “bleever” Erik.
Lupron is like a miracle. It’s working so well we’ve stopped chelation for now.
There you have it folks! That coupled with a video testimonial and what more could you ask for?
You ALL should stop chelating and go for the Geier vultures. They never lie, they never make up science, and they never put children in harm’s way for the sake of their pocketbook.
Remember, the lesson here is to stop chelating. Now we’re waiting to see what daddy has had the gnuts to Lupronate himself prior to injecting his kid with it.
Experimenting with animals is fun, especially when that animal is your kid.
“True HBOT causes DNA damage, did you know that? the HBOT toys you guys play around with don’t deliver any more oxygen to the kids’ blood than they’d get from breathing O2 through a nasal canula at ambient air pressure.”
Erik,
The HBOT toys they play with can deliver more oxygen if used with supplemental O2 (100%), but then they could be playing the seizure risk game, and there’s no evidence that it would clinically impact features of autism (remember anecdotes, parent reports, and hallelujahs don’t count in real peer-reviewed RCT’s). The ~4PSI chambers with room air or slightly enriched room air are a joke. Just ask Dr. Rossignol, when you interview him – in addition to his commentary about hypoperfusion and neuroinflammation, make sure to ask him about hufner’s constant and hemoglobin.
Kev, it’s my first ever comment on your site even though i have been reading it for a long period of time – trying to learn more and trying to see whatever i can do for my son to get his condition better.
I think the way you look at clinical trials is very nice- you analyze them which is good to read. But as I was involved in that field of science and I can tell you that you probably can throw away many of the drug registrations that pharma companies did until now if someone in the FDA was doing the same scrutiny like you do. I know for certain whatever claims you make here can be said about ANY research institute that had been involved with funding from pharma company – and ALL the important institutes have been! As my friend who still works with that area said to me recently “Some of them (doctors) think they are god’s greatest gift to mankind scienece”. and if you think all of those ended up in the side of the people who supports the non-conventional theories you’re really wrong – those are what is called “Opinion leaders” who will rather die then admit they are wrong. I worked with them for years – some are nice some are total crap. and it’s probably the same for the doctors who think mercury cause autism – some of them are great and some are crap – you can’t just try to ridicule the good ones on behalf of the bad ones.
IMHO Human beings are supposed to question everything. That’s how humanity evolved. So even if *everyone* in who’s considered to be authority in the medical world says mercury is not the cause – we must still let people who think out of the box to work in other direction – I want to give people like Dr. Boyd E. Haley the capability to continue their work with much bigger support then they have right now.
I hope you will accept my comment even though i think
Best regards
U.
Undercover,
I think you’re likely to find very little dissent here about the quality spectrum among doctors, researchers, etc. Human beings are fallible and all to differing degrees. That’s why the scientific method and real science are so important – falsifiable hypotheses, real peer-review, replicable research, standardized methodologies with supporting normative studies, etc. You get the idea.
“So even if everyone in who’s considered to be authority in the medical world says mercury is not the cause – we must still let people who think out of the box to work in other direction.”
Authority is completely irrelevant and very few (if any) real scientific thinkers are out to prove that mercury is not the cause. It’s entirely possible that it is (though not probable based on the current science). Those who want to evaluate and support the claim that mercury does cause autism have the burden of proof. You’re absolutely right, they should be able to think out of the box to work in any direction they choose, however “work” means sticking to rigorous scientific standards, and not loosening up simply so their findings fit their out-of-the-box thinking.
Bring real proof, not speculation, suggestion, maybes, mights, or scientific slop, otherwise they’re not “working” in any direction.
Undercover,
By the way, I failed to say “welcome” and “good comments”.
I apologize. Welcome!
“So even if everyone in who’s considered to be authority in the medical world says mercury is not the cause – we must still let people who think out of the box to work in other direction – I want to give people like Dr. Boyd E. Haley the capability to continue their work with much bigger support then they have right now.”
I don’t want my tax dollars to be used to support someone like the Geiers, so then where is the line between these Lupron crazies and someone like Boyd who at one time in his career was a respected scientist? Further, the current grant and publication process, while a bit unwieldy and frustrating, is fair on the macro scale. That’s why people aren’t getting big money for paranormal psych, bigfoot, and the study of UFOs.
This is where private money comes in: you want to support Boyd? Go for it. Since I can’t predict the future I take that to be playing the lottery, albeit in reality it’s a rigged one.
Sometimes “out of the box” can sound sexy and renegade-like. Other times it sounds unscientific and just plain wasteful.
Hi to “Dad Of Cameron”
I totally agree with you everyone you wrote.
About
sticking to rigorous scientific standards, and not loosening up simply so their findings fit their out-of-the-box thinking.
There is a book that was published recently on “experts” and it showed that all those “experts” you see on TV – from stock market to political analyst to military experts… the end result of all of them was that they…well they are were as right and wrong in their “prediction” rates as any non-expert will have. the point was that they managed to “glorify” their right predictions and minimized the ones they failed. also in that book they mentioned that many people who work in research were biased from the beginning and their whole research ended up around what they wanted to prove.
It takes a great soul to admit you’re wrong, heck i also hate to admit it when i do mistakes. the thing is that i know many people who will try to stick to their mistake no-matter how. it’s seems like common human nature.
about shortcuts – for big clinical trials (and I seen them first hand) you need big money to support it. Add on that that Autism is behavior related disease (or call it what you prefer) and you end up with medical research who is in many times asks to see progress which is non quantifiable in numbers. This is by the way why not all pharmaceutical companies are good in that area of drugs (which have behavior changing activity). it’s like asking someone “do you OK today? ” vs. “do you feel any positive change in your feeling today” – the same target but you will get the different answer from the same person. Ask parents of autistic kids and it’s so hard for us to say “he had progressed so much” or “he had progressed but not enough” – right? we all have our own interpretation of our kids reality.
I took my son to a therapist which works in a method which is not available in the US and at the evening of that visit he took his hand and hugged me for the first time ever – for me it’s almost as if he was re-born that day. Does this qualify the person who did the session with him as a miracle man? I don’t know – it could have been a coincidence because I had him with magnesium baths and Omega-3 diet? the point is – i will never know. So my son is probably a very interesting example for a child who had NO intervention whatsoever until the age of 3.5 (LONG STORY) and then suddenly he re-emerged to us. i assume that if i was in the middle of any therapy let it be chemical or behavior-related i would have said it came from the therapy.
It’s too personal maybe for this blog – I just think that we all try our best and we all carry out our own view on how to approach our kids. we all love them and we all want them to be healthy and come back to us.
The point is – this is so huge – the autism – it should be funded with far bigger money then it is now – and i don’t care some of it will go to hoax guys – as long as we will see some progress going forward.
good night to everyone and again – i apologize if i was very personal here.
U.
Not Mercury asks some good questions of this study. Seems like somebody has been exaggerating just a little bit:
http://notmercury.blogspot.com/2006/06/relatively-speaking.html
I certainly don’t want a penny of my tax dollars going to “hoax guys” not of any stripe.
Here’s Hendren doing what he usually does, as far as I can tell, that is, test big pharma drugs on kids. He’s doing one on methylcobalamin, for some reason that one study has been described in several ways, some of the descriptions of the study used to gather particpants are blatantly misleading, or sloppy, if you want to be generous. I sure hope my tax dollars aren’t suporting that garbage.
Hendren is taking about $1,440,000 in money from big pharma for studies currently underway, I guess.
https://www.ucdmc.ucdavis.edu/psychiatry/research/grants.html I guess they are mostly for child/teen schizophrenia and using antipsychotics. I was ready to get all huffy that they spelled methylcobalalmin wrong, but “methylcobalamine” apparently is acceptable.
https://www.ucdmc.ucdavis.edu/psychiatry/research/psychopharm.html
Principal Investigator: Robert Hendren, D.O.
Dr. Hendren is the principal investigator on nine (9) industry-sponsored clinical drug trials and one investigator-initiated “innovative treatment trial”. Pediatric studies include a placebo control trial of aripiprazole for biplolar disorder and for schizophrenia and an extension study; a placebo controlled study of quetiapine for bipolar disorder or for schizophrenia and an extension study, a placebo controlled study of escitalopram for depression and an extension study and sertraline for PTSD. An FDA and IRB approved placebo cross over study of subcutaneous methyl cobalamine (B12) in young children with autism is ongoing and funded from a small MIND Institute grant. A NICAM grant application is in preparation.
Pharmacogenomics in Childhood Mental Disorders
Principal Investigator: Robert Hendren, D.O.
A pilot study using genetic microarrays for children with autism to find differential patterns between those who respond favorably to risperidone is currently underway funded by a small grant from the M.I.N.D. Institute.