Blurring the boundaries
Quackademia
There is an article on Science Based Medicine Crank “scientific” conferences: A parody of science-based medicine that can deceive even reputable scientists and institutions that is well worth reading, along with Infiltration of Quackademic Medicine into Mainstream: A pernicious influence.
The articles describe methods whereby practitioners of Complementary and Alternative Medicine seek to blur the distinction between themselves and mainstream medicine. They reject the substance of science based medicine while hankering after respectability and acceptance by aping its style with their own learned journals, institutes and conferences.
Even better, from their point of view, is when they can position themselves alongside the mainstream as if they are a part of it. And it seems to be working. Boots the Chemist will sell you homeopathic and herbal remedies. The National Health Service Trusts Association maintains a directory of these CAM practitioners, Some hospitals and general practitioners offer these interventions as an additional service. There is even an NHS homeopathic hospital that was refurbished at a cost to the taxpayer of £20 million.
Polly Tommey and the Autism Trust
Of course autism has long been a profitable area for CAM practitioners. But the close links between the anti-vaccine movement and CAM treatments for autism have persuaded most mainstream doctors to give these a wide berth. But for other areas of autism intervention such as education and social care, evidence based interventions are not so well established and CAM practitioners are able to make inroads.
I have previously mentioned The Autism Trust which, on the surface, seems a reasonable organization that wants to provide residential provision and services for autistic adults in purpose built communities it describes as Centres of Excellence. But this organization is the brainchild of Polly Tommey, editor of the Autism File, a magazine that champions the cause of Andrew Wakefield and promotes all manner of CAM treatments for autism. Her husband, Jonathan runs the Autism Clinic which provides many of these CAM treatments. Their plans for the Centres of Excellence include a wellness centre offering all manner of quackery including homeopathy, chelation and hyperbaric oxygen therapy, as well as a training centre and a conference centre promoting these “biomedical interventions.”
Polly Tommey is using the Autism Trust to raise her profile as an advocate for autism. She engineered a meeting at 10 Downing Street with Prime Minister Gordon Brown and his wife, Sarah and was invited to speak at a recent seminar, HOW DO WE BEST ENABLE CHILDREN AND ADULTS WITH AUTISM TO LEAD FULL LIVES ? Meanwhile her continued commitment to anti-vaccine quackery in relation to autism is quietly pushed into the background.
Autism Conference
But it is still central to her agenda as is evident from her most recent venture, an Autism Conference. This is a three day affair with three sponsors.
The Autism Trust sponsor the first day of educational workshops, which looks like quite a good day. OK I could do without the Tommeys’ contributions and one could question the educational value of talks on massage and aromatherapy. But Stephen Shore and John Clements are both mainstream speakers and Sarah-Jane Critchley is Project Head of the Autism Education Trust.
Saturday is more problematical. It is sponsored by the Autism File and is billed as a day of educational and biomedical speakers. Stephen Shore is there again. And there is what looks to be an excellent talk on Autism and Neurodiversity by Tom Berney But Shore’s talk is about transition to adulthood and Berney is talking about adults so it is hard to see how this relates to education. There are the Tommeys again (well it is their conference.) and the financial backer of the Autism Trust, Oliver Jones whose only connection to autism is his 12 year old godson.
Most of the other speakers are committed biomedical interventionists. Ken Bock is a DAN practitioner with no training in autism who was an expert witness for Stephen B. Edelson, a quack practitioner who was sued by a couple who charged that Edelson had defrauded them and negligently diagnosed and treated their autistic child. Edelson settled out of court for an undisclosed sum.
Devin Houston is a biochemist whose main area of research was the effect of marijuana on the brains of lab rats before he went into business selling enzymes that are supposed to help with the digestion of gluten and casein and thus ease gut disorders in autistic children. Paul Shattock remains committed to the gluten casein hypothesis despite recent research that undermines its theoretical basis. Paul is a very nice man who has not exploited parents for financial gain and has also achieved a lot in terms of pioneering autism provision via ESPA and is an honorary vice president of the NAS. That actually makes him more of a problem than a snake oil salesman like Houston. If Paul is backing something it cannot be all that bad. But it is.
Sunday shows just how bad it gets. Billed as a day of scientific research it features Michael Ash, another supplement salesman who boasts a diploma from Patrick Holford’s Institute of Optimum Nutrition. We have Ken Bock again, Lorene Amet, the DAN practitioner from Edinburgh, Wakefield acolytes Stephen Walker and Carol Stott and, topping the bill, the man himself, Andrew Wakefield.
This final day is sponsored by LVS Hassocks, a private residential school attended by the Tommeys’ autistic son, Billy. Their prospectus offers a wide ranging education for children with special needs as well biomedical treatments at £75 an hour. They employ Jonathan Tommey as a nutritional therapist And here we see more blurred boundaries. Apart from Tommey, four of the Friday speakers are employed in some capacity by LVS Hassocks. John Clements is listed as their clinical psychologist, Sarah Sherwood is headteacher, Stephanie Lord is director of special education and Matt Whelan is in charge of personalized learning. I could have understood it if LVS Hassocks had sponsored the Friday education session. But here we have a prestigious school with an eminent team in charge who are attaching their name and their reputation to the thoroughly discredited Wakefield and allowing his ideas a foothold within their own school by employing Jonathan Tommey!
Mistaken or misleading?
Taken together the three days map out a descent from reasonably solid ground to a virtual quagmire of quackery. I wonder how many of the mainstream speakers were aware of the total programme when they agreed to speak? The Tommeys are not above making misleading statements. Jonathan Tommey describes himself as
a member of the British Association of Nutritional Therapists (BANT) and is a registered DAN! Practitioner and is supported as a practitioner by the Caudwell children charity www.caudwellchildren
Elsewhere on his website he uses the Caudwell logo 
and again claims that
I am an authorised practitioner for the Caudwell Children and if successful may grant up to £3,000 per annum for services provided by The Autism Clinic including the purchasing of diagnostic tests and supplements. All applications must be supported by myself.
The first time I mentioned this Ben Sutcliffe from Caudwell Children wrote to me to correct any misinterpretation of Tommey’s statement.
Caudwell Children funds many therapies for thousands of children across the UK. The Charity has no formal agreement with The Autism Clinic or any other provider, it funds the therapy requested by the applicant, which has to be supported by a professional medical reccommendation. To find out more visit our website.
Jonathan Tommey does not have a recognized medical qualification so I would question whether he is entitled to provide a professional medical recommendation. He does have a BSc in Nutritional Therapy from the University of Bedfordshire. This is yet another example of the blurring of the boundaries between science and superstition. The Division of Science at Bedfordshire boasts of its
long-standing links to the Institute of Optimum Nutrition
Yes, a properly constituted university science department of a British university accepts Patrick Holford’s ION foundation degree as a basis for its own honours degree.
Dietician or Nutritional Therapist?
There is some confusion about the relationship between dieticians and nutritionists. Dieticians receive clinical training in a hospital setting and are educated at least to masters level . Nutritionists have a bachelors degree and are employed in the NHS to assist dieticians. They often go on to further their education and become dieticians. Outside the health service the field of nutritional therapy is poorly regulated and the evidence base for many of its treatments is less exacting than that for the clinical practise of a qualified dietician.
Blurring the boundaries
This article has been all about the blurring of boundaries. Some of my examples might seem innocuous. Does it matter if we regard massage as an educational therapy rather than an optional extra? I think so. I have nothing against healthy eating, massage, yoga, aromatherapy and some of the music and movement programmes that are being introduced into schools. I do object to exaggerated claims for their educational and therapeutic benefits that often invoke sciency sounding principles which are not born out by the evidence. The harm comes when similar sciency claims are used to allow potentially dangerous ideas to inform practice. What if the next proposal is for a detox regime or a decision not to facilitate HPV vaccination in your school?
As we have seen this blurring of the boundaries is not only penetrating schools. It has infected our universities. What price a BSc if you can complete part of it at a quackademic establishment like the Institute of Optimum Nutrition? Despite the recent emphasis on evidence based medicine CAM practitioners are making a living within the NHS. UK taxpayers are funding this nonsense while NICE is rationing access to real, effective treatments using cost/benefit analysis.
I feel sorry for the speakers who, however inadvertently, are now contributing to the Tommeys’ Wakefieldfest at their conference next month. I hope their presence is not used to validate the conference and provide a further boost to the Tommeys’ influence.
A while ago I was due to speak at a conference at which two of the Tommeys’ speakers, Lorene Amet and Paul Shattock were scheduled to speak. I along with others expressed our concern
to find that representatives of the anti-vaccine/unorthodox biomedical campaign have been given a prominent role in the Autism Today conference. These include Paul Shattock (the chair for the opening session) and Lorene Amet and Magdalena Cubala-Kucharska (in the final session). The first day of a conference purporting to provide an update on the ‘diagnosis, management and treatment of autism’ for professionals in the field is thus framed between promoters of pseudoscience.
I was booked to speak at the education session the next day but felt strongly enough that I would have cancelled rather than take part in a programme that had so compromised its integrity. Fortunately the organizers took heed of our objections and the invitations were withdrawn. As a final touch, Mike Fitzpatrick was invited to replace Amet and delivered a bravura condemnation of quackery that was applauded by the professional audience.
This is a biannual event and will be on in Edingburgh next month. Both Mike Fitzpatrick and I shall be speaking. And we will not be blurring any boundaries.
Pingback by Twitter Trackbacks for blog-thing : Blurring the boundaries [actionforautism.co.uk] on Topsy.com | October 12th, 2009
[...] blog-thing : Blurring the boundaries actionforautism.co.uk/2009/10/12/blurring-the-boundaries – view page – cached _your description goes here_ — From the page [...]
Comment by Club 166 | October 12th, 2009
Bravo to you (and the others) for speaking up and getting the speakers changed.
Good luck with the upcoming event.
Joe
Comment by David N. Andrews M. Ed., C. P. S. E. | October 13th, 2009
“Yes, a properly constituted university science department of a British university accepts Patrick Holford’s ION foundation degree as a basis for its own honours degree.”
That is f*cking worrying!
Unless their top-up degree aims to correct any of the issues that cause concern in the DipION/FdSc…. which I sadly doubt :/
Comment by Laurentius Rex | October 13th, 2009
I take back all my rants against the intellectual snobbery of the Russel Group of Universities.
http://tinyurl.com/yfh3pjo “Is this the worst University in Britain?) Yep it’s Jonathon Tomney’s alma mater.
Mind you even Birmingham has it’s lapses, it has a degree that even John Best could manage, a degree in “golf nanagement studies”
http://tinyurl.com/qwrfyz
Comment by Devin Houston | October 14th, 2009
Mr. Stanton;
Please contact me privately via email as I cannot find a way to contact you. I take exception to you referring to myself as a “snake oil salesman”. You do not know me, nor I you and I do not refer to you in uncivil terms. I would be happy to show you the science behind enzymes as well as discuss my background as a scientific researcher. Be so kind as to educate yourself before using “guilt by association” methods against a stranger.
Devin Houston, PhD
Houston Enzymes
Comment by Mike | October 14th, 2009
Mr Houston
I am not questioning your scientific knowledge of enzymes. But you have yet to demonstrate the relevance of this science to autism. You seem to accept the opioid excess theory of autism as fact when it is a hypothesis that has not been upheld by recent research.
Despite the small print at the bottom of your home page [NOTE: These statements and/or products have not been evaluated by the FDA and are not meant to diagnose, cure, treat, or prevent any illness. Please consult your medical doctor for treatment options.] you do make substantive claims for the efficacy of your products in relation to autism. Where is the science to support those claims?
Comment by Prometheus | October 14th, 2009
Mike,
After reading Dr. Houston’s comment I went to his website and looked through the products he offers for sale. I must confess that I found no mention of snake oil or other snaek by-products in any of the product listings. It would appear that you were incorrect in this part of your assessment.
However, there seems to be a curious omission on Dr. Houston’s website - especially curious in light of his protestations that he is a scientific researcher. Despite quite a good deal of diligent searching, I was unable to find the published research that supports the claims he makes about his products.
Feeling that this was a simple omission - or was due to my inability to use the Internet - I searched for Dr. Houston’s publications. Unfortunately, my usual facility with Web of Science and PubMed appears to have deserted me - I was able to find Dr. Houston’s publications on cannabinoid receptors, but I was completely unable to find any of his publications on his enzyme products.
Perhaps Dr. Houston hasn’t published his findings, for whatever reasons he might have. However, this lack of efficacy data does make his current business endeavor look a bit, well, dodgy. After all, he is quite emphatic - on his website - about the efficacy of his products, so he must have data to support his claims, right?
I’m hoping that Dr. Houston will take this opportunity to show the readers of this ‘blog - and the rest of the world - that he does have research data of a high quality supporting each and every one of the claims made about the products he sells.
Eagerly awaiting the data,
Prometheus
Comment by Devin Houston | October 15th, 2009
Since you wish to make this discussion public I will state my opinions on this site.
I have never made any claim that oral enzyme supplements are a treatment for autism or any other disease, because they are not. These plant-based enzymes are merely for supporting normal digestive processes, of which there is plenty of evidence in the medical literature. Search keywords on papain, bromelain, DPP IV, etc. for findings, or contact me directly for PDFs or references of papers. In addition, due to their acid-resistance, plant-derived enzymes functiom in the stomach, unlike oral pancreatic enzymes.
I have never said I buy into the opioid excess theory as a causative factor in autism. You are confusing causation with symptoms. Many children with autism do have problems with food intolerances. Many do not. Many parents have found dietary restrictions to be helpful, whatever the reason. Protease combinations have been shown to help degrade gluten protein to the extent that it may be possible at some point that those with celiac disease may be able to consume gluten. Please see Chaitan Khosla’s research at Stanford University on prolyl endopeptidases (PEP) and EP-B2. It is known that many bioactive peptides can be produced during normal digestion, including casomorphin and gluten peptides (gluteomorphins) with opiate-like activity, as well as other peptides such as gliadin. I am much less concerned as to whether these peptides are involved in autism as I am their involvement with GI function. Opiate receptors exist in the gut and serve to regulate gut motility (among other things), hence the anti-diarrheal meds that are now available (loperamide). As constipation is a big problem with many people, anything that decreases the production of these peptides may help normalize gut motility (as would dietary restriction). Dipeptidyl peptidase IV (DPP IV) is the only known enzyme to degrade casomorphin and other proline-containing peptides and is produced in the cells of the gut lining (as are many other peptidases), most likely to degrade such peptides.
I have taken pains not to make health claims on my website; if you feel I have please point them out to me. We abide by FDA regulations which is why you see the mandatory disclaimer on each page of our site.
Yes, I do consider myself a researcher and I have published papers from funded research. Funded is the keyword. Good research costs money. I was fortunate enough to work in universities which enabled me to obtain federal funding. Those opportunities are much more limited in industry. I am not a large pharmaceutical company, I’m not even a large business. My products are not exorbitantly priced (compare to other enzyme companies) and I live modestly. If you would be so kind as to forward me a minimum of $250,000 I will be glad to do the research. I have funded small projects internally, such as the finding that some cellulosic enzymes may interfere with certain time-released medications. This study is currently undergoing replication by other labs. However, when one funds their own research, one becomes open to the charges of objectivity. If you pay for the research on your product, would you not want the outcome to be favorable? I much prefer research funded by outside sources, with no ties between provider and researcher.
Also, one must get their research published. I am appalled at some of the journals autism researchers use. Medical Hypotheses comes to mind. I would never submit a paper to that journal. The best journals are very selective, and usually have little or no interest in publishing papers on the use of dietary supplements. There is much published research from which we can infer when discussing the function of these enzymes in other applications. I agree that one must not over-interpret the data. If you feel I have please show me specifics.
What do we know about oral plant-based enzymes? We know they have a long history of safe use. No level of toxicity has been found with any dose of digestive-type plant enzyme; in rats, dogs, and humans. Oral lactase enzyme is known to help lactose intolerance. Alpha-galactosidase degrades stachyose and raffinose, the lack of such which causes extreme gassiness. We know that enzymes may be absorbed in active form from the gut (Castell, J. Am. J. Phys. 1997). There is evidence that bromelain decreases expression of mRNAs encoding pro-inflammatory cytokines by human leukocytes in vitro (Clin. Immun.126(3):345, 2008). We know that plant-based enzymes exhibit working pH optima in a broad range such that digestion can occur in the stomach. We know that phytase can improve the absorption of iron in humans (Sandberg, 1996). Xylanase improves the absorption of nutrients from grains in feed animals.
What do we need to prove that these enzymes do? We suggest that enzymes can improve one’s digestion of many foods and in many cases may allow ingestion of foods not previously tolerated. We do not and have never promoted enzymes as allowing ingestion of foods to which one may be anaphylactically allergic. We do not tell those with celiac disease that they can use enzymes and ingest gluten.
We ask parents to try our products, give them a 2 month trial. If they can see no visible or measurable difference in their child’s digestion, we ask them not to waste their money. This philosophy should be applied to any supplement one takes, in my opinion.
I have deliberately not hyped my products; I would rather keep expectations low and have a customer happily surprised than have one expecting a miracle and falling short.
It is true that you can find statements on the web from those who have used our products and report huge gains in their children. I cannot regulate the writings of our customers. Many of the behavioral improvements posted by parents could be due simply to a child not having to deal with an upset stomach, or having better bowel movements. No miracles are claimed by my company.
I offer a product which is not costly and is composed of ingredients fully documented and listed. The ingredients have a history of safe use. No LD50 exists, and no toxicity exists or is suspected at any dosing level. The activity of these ingredients is known and verified by lab assays. The use of these products does not preclude the use of any treatment.
The relevance to autism? Only if a person with autism takes these products. Our products are not exclusive to those with autism. I take my products, I do not have autism. My customer base includes a diverse population.
Anyone who knows my early history knows that I have crossed swords with several icons in the autism community and I was not welcomed with open arms. Snake oil does exist in the community as does many “treatments” I find suspect. I have had and continue to have opinions that differ from many that speak at autism conferences, including the one at Ascot. That does not prevent me from participating in the event, nor do I compromise my ethics in doing so. There is entirely way too much in-fighting in this community which accomplishes nothing.
Prometheus, if there is some “claim” on my site that you feel I have not addressed, please point me to it.
Thanks for allowing me to ramble.
Devin Houston
Comment by Broken Link | October 15th, 2009
Devin Houston wrote: “I have never said I buy into the opioid excess theory as a causative factor in autism. ”
http://www.houston-enzymes.com/learn/faq.php
From the FAQ on your site, in response to the question “But my child is on the GFCF diet. Do I still need enzymes?
In the opinion of many, yes. Sources of exorphins are not completely determined. While we know that gluten, casein, and possibly soy produce exorphins when exposed to pancreatic enzymes, there may be other sources that have not been identified. Soy produces peptides called soymorphins. Even spinach leaves produce opiate-like peptides. It is known that breakdown of hemoglobin, from within the body, or through eating meat not well drained of blood, is a source of hemorphins, which produce the same effects as exorphins. This may explain why some do not see much improvement with the diet; sources of exorphin production from within (normal breakdown of red blood cells, yeast, bacteria (good and bad)) may be contributing to the exorphin load.”
Sure sounds like you buy into the opioid excess theory to me.
Comment by Broken Link | October 15th, 2009
And also from the FAQ: “We feel that high-quality enzyme products such as AFP Peptizydetm are meant to achieve the same purpose as that of the diet: to reduce the amount of exorphin peptides produced from diet. “
Comment by Devin Houston | October 15th, 2009
Broken Link:
Do you see the word “autism” mentioned?
The effect of opiate-like peptides is not limited to a supposed effect of autism. These peptides have distinct effects on gut motility. My point is that gluten and casein are not the only sources of exorphin peptides, or other peptides. The digestive problems of many people, in my opinion, are due to incomplete digestion of food proteins.
Comment by Mike | October 15th, 2009
There is more implied support for the opioid excess theory in this product information for the product Peptizyde
In those sensitive to gluten and casein, initial use of Peptizyde™ may result in “exorphin-peptide withdrawal syndrome”, as exorphin peptides are decreased in system. This may present as hyperactivity, irritability, increased aggression, tantrums, etc. for a period of several days to as long as a month.
Also on Mr Houston’s website he is listed as a speaker or exhibitor at ACAM, DAN and NAA conferences. At the NAA conference website they say Dr. Devin Houston provided the first enzyme product targeted to children with autism in 1999. Part of his talk is about How do enzymes address digestive-related issues specific to those on the autism spectrum?
Mr Houston also speaks highly of Karyn Seroussi and Jenny McCarthy, whom he met at a previous DAN conference. Both are advcates for the opioid excess theory of autism. It seems reasonable to assume that someone who attends autism conferences devoted to biomedical interventions, is invited to speak about autism and sells products to the parents of autistic children is significantly involved in that biomedical movement.
It may be that to avoid regulation by the FDA he has to maintain a nice distinction between the medicinal properties of the enzymes in his products and the products themselves, which are described as food supplements. On this side of the Atlantic the European Food Safety agency and the health food industry are at odds over what should be regulated and which claims should be tested. Mr Houston himself seems to contribute to the blurring of the boundaries between foods and drugs by calling his products nutriceuticals. So is it Nutri- to the FDA and -ceutical to the parents of autistic children? But not snake oil?
Comment by Devin Houston | October 16th, 2009
Are we blurring the distinction between “implied” and “definitive”?
The statement of a “peptide withdrawal syndrome” was simply to present a reason for the anecdotal reports of behavior of those taking a high-protease enzyme product. The effect is not limited to those on the spectrum.
So my speaking at autism conferences somehow makes me suspect? I have also spoken at Rotarian and Kiwanis meetings, parent-teacher associations, church groups, a support group for diabetes, and sensory perception disorder groups? And that makes me what? If I am invited to speak at a group, why would I not do so?
So, in your opinion, speaking highly of someone who has a viewpoint that differs from mine is somehow wrong? “Reasonable to assume”? Should I state what I may “reasonably assume” from your statements and blogs? You may not know that Ms. Seroussi and I had a very heated discussion at one time that caused a lot of friction. So awful of me that I could forgive someone and try to build a meaningful relationship!
I maintain a distinction between “medicinal” (your word, not mine) and the products because there is a distinction. They are NOT drugs. We do differentiate between drugs and dietary supplements in the US. If you have a problem with that, please contact the United States Congress and have them repeal DSHEA. My business is not located in your lovely country so I am not required to abide by their regulations.
Comment by BS-ase | October 16th, 2009
Mr. Houston,
Did you help to start a Yahoo group titled ‘Enzymes and Autism’ and did you actively participate on this group offering advice to parents of autistic children regarding the use of your products to treat autism? Correct me if I’m wrong but I think you came up with the idea to use enzymes for autism after you were contacted by Bernie Rimland and Jon Pangborn of DAN!/ARI. Didn’t you apply for a patent or three for the use of your enzymes to treat autism? What percent of your sales would you estimate are parents of autistic children.
Comment by Devin Houston | October 16th, 2009
I know most of you are probably peacefully (I hope) sleeping as I write this. I would like to make some other points.
I do not deny that a great many of my customers are families dealing with autism. My academic research allowed me the luxury of not having to interact with the end users of the research, the lab is a blissful place where one need not put faces to the disease one is researching.
I left academics because of the politics and the tedium of fighting for limited research dollars. When I was in private industry, I was required to attend an autism conference to help as a technical advisor to the enzyme product I developed for a supplement company. What a wake up call…
I saw faces of parents, mostly moms, that were strained and stressed. Most were having difficulty absorbing the information thrown at them. There is an art to relaying science to the lay person, and it was not being practiced at this conference. Some love to “impress” with big words and metabolic charts.
My point is that I saw the faces of those dealing with autism. I am not personally affected by autism. But is that a reason not to care? Or be involved in trying to help? What about my future grandchildren? My nephew’s children? Do we not need to make the public aware of what is going on? I was never moved to such an emotional state as when a young mom came up to me crying saying that she was already spending $400/month on supplements, and couldn’t afford the new enzyme product that I had developed for this particular company. I slipped her a bottle and told her not to tell. She was grateful.
If we cannot motivate people to understand autism, listen to the parents and try to meet their needs, what good are we?
We could just spend our time fighting about what causes autism, if it should be treated, how to treat it, etc. I don’t have time for that. Autism is here, let’s help those who want help, and at least listen to those with other viewpoints. What we don’t want is to scream at people because they don’t buy into our viewpoints.
I don’t really expect the statements I put here to change your minds, and I long ago gave up trying to argue people into accepting my views…on anything.
Hope to meet you in person sometime.
Regards, Cheers, etc.
Regardless of semantics; Defeat Autism, Action for Autism, etc. these are people looking for help and understanding
Comment by Broken Link | October 16th, 2009
Come on, you really expect us to believe that you are not primarily marketing your products to an autism audience? The yahoo group, EnzymesandAutism was set up by your friend, Karen DeFelice, who first went around to the various biomed groups and plugged her story of how her child had recovered from PDD using your enzymes.
http://health.groups.yahoo.com/group/Autism-Mercury/message/27706
Then she set up the group, and you were a member from day 1 (making post #3 to be specific).
Karen has even written three books describing her sons’ “dramatic improvement in their conditions through the use of enzyme therapy.”
http://www.amazon.com/Enzymes-Digestive-Health-Nutritional-Wealth/dp/0972591869/ref=pd_sim_b_2
Comment by Chris | October 16th, 2009
Devin Houston:
First off, the $400 a month for supplements that have no proven effect on autism are things that annoy many of us. Throwing money away.
You slipping her a bottle of your magic enzyme sounds exactly like what drug dealers do to get new customers. Ugh.
Let me just say that you have not impressed me at all by your attitude, and genuine lack of data. As one of those parents who has been confused, lost, strained and stress each time my son was in the hospital, during visits with the neurologists, psychologists, various neurodevelopmental therapists, the long intense IEP meetings at the schools, and the maze of bureaucracy for state disability services — I think people like you, the DAN! quacks and other opportunists (like the most recent “friendly advice” about cranialsacral therapy) who prey on parents like us are the lowest form of parasite.
Comment by Guest Blogger | October 16th, 2009
Hmm. I have feeling that business is not very good and that Mr. Houston must be in need of new clients, and that’s why he’s taking his message to the UK.
While the EnzymesandAutism yahoo group used to be a busy place, discussing, well, enzymes (particularly Devin Houston’s) and autism, it’s now a quiet place. At it’s peak, it hovered around 1500 - 2000 messages per month. In the last year, it’s averaging less than 500 messages per month. This morning, when I looked at the most recent messages, I had to comb through 33 before I found the first one to actually discuss enzymes and autism.
People have voted with their feet. Looks to me like enzymes don’t really work all that well to “recover” kids from autism.
Comment by Mike | October 16th, 2009
Guest blogger
To be fair it may be that they are all got the help they needed and no longer need the support group. Who knows? There is a distinct lack of data informing this discussion.
Comment by Devin Houston | October 16th, 2009
Well, I’m disappointed in your cynicism, but not surprised.
The Enzymes and Autism group was initially founded by myself. In hindsight, probably not a good move on my part, but I was new and a little naive as a business person. A competitor felt that it was a conflict of interest and I had to agree, so ownership was turned over to DeFelice, who was never part of my company. I felt uneasy about the over-extrapolations in her book, which were outright health claims. This eventually led to some bad feelings between us that unfortunately linger today. I have not posted on any message board in years, as such can be too inflammatory, as apparently commenting on someone’s blog. There are much better ways to communicate these days. Message boards are declining in popularity.
No, I have never applied for a patent or owned a patent. I was named the inventor of the enzyme product SerenAid in a patent applied for by Klaire Labs.
Broken Link, I feel anyone who eats food can benefit from a good digestive enzyme product. If my customer base is composed of many with a commonality, it is because they find some benefit. No one forces these parents to buy these products. Do you believe parents of children with autism (and I don’t like to refer to them as autistic children, that is labeling) are so stupid that they would continue to shell out money for something that provides no benefit? If so, then you are doing these parents a disservice.
Guest Blogger, business is actually quite well, thank you. I was invited to the conference by Polly Tommy. While I am not looking forward to the travel, I am happy to visit London and Edinburgh again. The people there are lovely and the historical nature of the UK enthralls me. BTW, I do not accept a fee for speaking and I pay my expenses as well.
Again, GB, I state that enzymes are and never were a treatment or means of recovery from autism. These enzymes break down proteins, carbohydrates, and triglycerides. All the enzymes do is allow some relief from the very restrictive diets and food intolerances that many people face, on the spectrum or not.
Chris, I understand your frustration, but why do you feel I prey on parents?? I have actually recommended to some NOT to use the enzymes, as I felt there was no dietary problem pertinent to enzyme use. In the 10 years since enzymes became of interest in this community, I have seen many other things come and go. No one speaks of secretin anymore (which I was not in favor of, much to the dislike of some autism icons). Magnets, homeopathy, craniosacral, NAET, muscle testing, and other, yeah, I have a problem with it as well.
Also, Chris, please be specific as to what data you feel is lacking. It appears to me that you are reading much more into what you think the enzymes are supposed to do than I am presenting. Again, look at what is said on the website. The word “autism” is not used much at all. You know why? Because enzymes do not cure, prevent, or treat autism!
In the past 10 years, more companies have jumped on the enzyme bandwagon, yet, the increased competition has not hurt us. Actually, I could be doing several things that would be much more financially lucrative but not nearly as fulfilling. You don’t know me, so I don’t expect you to believe me to be sincere. That’s ok, I sleep very well at night and I have made many friends from my customers.
As to “lack of data”: I need a source of funding. I have just found an endocrinologist who is very much interested in the enzyme story, and is proficient as a researcher in drug trials. It may be possible she can receive funding to do a study. We plan on meeting to discuss.
In the meantime, the enzymes are safe so no studies need be done to determine safety. Since digestive distress varies and is often subjective, it would be very difficult to design a study to demonstrate effectiveness. What would be the endpoint? What are the markers? Would it not be just as easy to try the product and see if it offers relief? We are talking about products that cost between $21 and $44 dollars for a month’s supply. Not a large outlay to find out if something is worth continuing. If I was truly interested in ripping people off, why not charge much more?
Perhaps it would be better if you could contact those who have used the products and get their opinions first hand.
Best wishes to you all.
Comment by Mike | October 18th, 2009
I thank Mr Houston for his candour in responding here. As I understand it Mr Houston is part of the food industry. He sells plant based enzymes that support normal digestive processes. These are non-toxic and safe to use. He makes no medical claims for his products. He does not exploit parents hopes and fears by making extravagant claims for his products. Nor does he have an extravagant pricing policy. If that was all he did we could quickly move on.
But when he attends conferences of parents of autistic children [NB this is not labelling. See this article for more information] he is selling directly to parents who believe in the opioid excess theory of autism and believe his products will help, not by supporting normal digestive processes but by repairing abnormal digestive processes that are, at the very least, contributing to their child’s autism.
Mr Houston is supporting them in their beliefs in order to sell his products. It does not matter that he is profiting, as he obviously must be, rather than profiteering. He relies on the shopkeeper’s nostrum that the customer is always right to justify his activity. The parents would not buy if it did not work. Tell that to Boots, one of our largest retail chemists, who sell homeopathic remedies in their shops. People buy them therefore homeopathy must work.
Mr Houston must know that many of these parents are convinced that their children are environmentally damaged and they have to repair that damage. They frequent email lists and conferences that reinforce their beliefs. They listen to brave maverick doctors who stand outside the mainstream. They dismiss mainstream science and medicine out of hand when its findings contradict them. And the science does contradict them. Hilary Cass of Great Ormond Street Hospital was quoted by the BBC after her research failed to find evidence of these exorphin-peptides in autistic children.
“It is very distressing to have a diagnosis of autism, a lifelong condition. Many families are driven to try out interventions which currently have no scientific basis,” said Dr Hilary Cass of Great Ormond Street.
“Advocates of the leaky gut theory offer children a casein and gluten-free diet which as yet lacks an evidence base. Our research throws serious scientific doubt on the putative scientific basis of that diet.”
But Paul Whiteley of the Autism Research Unit at Sunderland University said while the study appeared to have ruled out one reason why a gluten and casein-free diet may work, that did not mean it was not effective for some sufferers.
Paul Whitely, along with Paul Shattock is one of the main proponents of the opioid excess theory in the UK. He has just admitted that the theoretical basis for the diet has been ruled out but it might still work for some people. Why should it? I would like some research to find out. But it seems a safe bet that it is not the peptides. and if it is not the peptides then they don’t need the enzymes.
Mr Houston asks us to listen to parents. Most of the commentators here are parents of autistic children. Some of our children are adults now. We do not buy into the minority view of autism presented at the conferences he frequents. Whether or not he buys into the view he sells to it and ignores the science that contradicts his sales pitch. Snake oil salesman? If the cap fits…
Comment by Laurentius Rex | October 19th, 2009
I have often said that if you were to give Paul Shattock a vial of pigs urine he would pronounce it autistic.
The reason the diet appears to work is no more than placebo in my belief, it is an expensive and time consuming act of self delusion.
There is an element of ritual in it, an investment of time, trouble and energy, perhaps the time trouble and energy is the real factor and that anything that is followed with the same dedication would have the same effect, that is where the research should look, don’t control the diet against a not diet, but against a similar placebo.
Comment by curt linderman sr | October 20th, 2009
I find it hard to believe that you people are able to do anything to help anyone with autism on this site. let me first mention that I work for The Autism File, live in America and have a son that is 65% recovered. I can attribute some of this to Devin Houston’s products. while you people are arguing and coming up with nothing but rehtoric and snide comments, there are DAN physicians, homeopaths and business men that are actually recovering children.
How pathetic you all are.I thank God everyday that I kept an open mind about treatments and didn’t listen to the “mainstream” physicians that told me to institutionalize my son, as he now is included in a regular 2nd grade class and thriving. THAT GENTLEMEN, is all of the proof that I need. You can take your prescious lancet and BMJ and shove it!
Comment by Mike | October 21st, 2009
I wonder if Curt Linderman is expressing his own thoughts or those of the Autism File? I only ask because the Autism File’s editor in the USA, Teri Arranga had to dissociate herself from an earlier pronouncement thus:
Curt Linderman’s comments cited by Wired magazine referenced his thoughts and weren’t made with the endorsement of Autism One or The Autism File magazine.
The Wired magazine article in question is available online and has been blogged at LeftBrain RightBrain and Respectful Insolence. This is the part that Teri Arranga took exception to.
Hence the death threats against Paul Offit. Curt Linderman Sr., the host of “Linderman Live!” on AutismOne Radio and the editor of a blog called the Autism File, recently wrote online that it would “be nice” if Offit “was dead.”
I’d met Linderman at Autism One. He’d given his card to me as we stood outside the Westin O’Hare talking about his autistic son. “We live in a very toxic world,” he’d told me, puffing on a cigarette.
It was hard to argue with that
I know that jounalists sometimes quote people out of context so I checked out the original comment on the Age of Autism blog. Here it is.
I coined a term about a year ago that I use in my articles: “Pharmawhore: One that conciders the profit margin over the health and well being of those in their charge”….(eg Paul “Pr”offit). The other article on Offit being channeled would have been nice were it the case (that would mean the @$$hole was dead!
That is more a death wish than a death threat but still not what you would expect from the editor of the Autism File blog and the magazine’s director of advertising.
It is instructive that, even though the remark was posted in July 2008, Teri Arranga was happy to let it stand unrebuked for over a year until Wired magazine brought it to wider audience.
Mr Linderman has since confirmed that he stands by his comment.
On October 21st, 2009 Curt Linderman says:
well of course I didn’t ask for an endorsement, I spoke from the heart. I dont need permission to speak my mind, I think and speak for myself, thats one of the reasons that my kid is getting better with my psuedo science. because I didn’t listen to idiots like offit. as far as the comment about offit in the magazine…I am 100% unapologetic and will say it again and again.
But not in the pages of the Autism File, presumably. That would not look good for business.
Comment by curt linderman sr | October 24th, 2009
Mike, what I do in my personal life is exactly that. and if you read the entire rebuttal of the magazine, you might understand whats going on. at what point should I stop taking this BS from idiot doctors like offit without voicing my opinion. because I’m not a “big shot” PhD, should I just let him get away with it. I dont know about England, but here in America we have a little something called the first ammendment. And if you were to go to my website, which is completely seperate from the autism file, you’ll will see that the statement was made out of context, or actually put into the context of a death threat context in the wired story. never once did I say to the reporter or in that post that she reference that I wanted someone to kill him (much less me doing something personally to him) but a man like paul offit that states publically that a child can handle 10,000 vaccines a day and 100,000 in a lifetime, simply means that I woould like to see him prove it personally. and if, in a voluntary role, he were to suffer a “untimely” demise, I wouldn’t shed a tear. and once again, I stand by my statement 100% unapologetic. for those that dont care for me, for one thing, I was thrust into this life by a doctor that poisoned my child, for another thing, this aint the Miss World pagent and I damn sure aint running for miss congeniality. truth hurts….
Comment by Mike | October 24th, 2009
I sometimes wonder if people read my blog before commenting. If Curt has read my post he knows that I did check on the quote and linked to it in context on the Age of Autism. I then went on to say it was not a death threat.
Being misquoted in such a manner ought to make Curt wary of misquoting Dr Offit regarding 100,000 vaccines. This is a direct quote from the article in Pediatrics:
A more practical way to determine the diversity of the immune response would be to estimate the number of vaccines to which a child could respond at one time. If we assume that
1) approximately 10 ng/mL of antibody is likely to be an effective concentration of antibody per epitope (an immunologically distinct region of a protein or polysaccharide),
2) generation of 10 ng/mL requires approximately 1,000 B-cells per mL,39
3) a single B-cell clone takes about 1 week to reach the 1,000 progeny B-cells required to secrete 10 ng/mL of antibody (therefore, vaccine-epitopespecific immune responses found about 1 week after immunization can be generated initially from a single B-cell clone per mL),
4) each vaccine contains approximately 100 antigens and 10 epitopes per antigen (ie, 103 epitopes), and
5) approximately 10,000,000 B cells are present per mL of circulating blood, then each infant would have the theoretical capacity to respond to about 10,000 vaccines at any one time (obtained by dividing 10,000,000 B cells per mL by 1,000 epitopes per vaccine).
Like Curt I do not have a PhD. I look at it another way. If childhood diseases are 10,000 times more potent than the vaccines that protect against them it stands to reason that theoretically a child’s immune system could withstand up to 10,000 vaccines. If not our species would have been wiped out by these diseases in the millennia before vaccines were invented.
Curt must surely know that Dr Offit has never advocated giving 10,000 vaccines at once. He was making the point that only a tiny fraction of a child’s potential immune response [less than 0.1%] is needed to cope with the entire vaccine schedule. Diseases overwhelm immune systems. Vaccines strengthen them.
Comment by curt linderman sr | October 25th, 2009
Diseases overwhelm immune system, vaccines strengthen them? there is absolutely no proof on this statement whatsoever. And when you look at the influx of auto immune diseases that have cropped up lately, one would have to wonder. as far as the misquote goes, I was writing about the obvious BS and how it was portrayed in the article.
and do you think that a doctor that can even state theoretically that a child ’s immune system can withstand 100,000 vaccines deserve any credibility? and seeing what you have on your page today, congrats to Paul Offit? This will definately be the last time that I visit this pathetic site. have a blast continuing to advocate the poisoning of children wankers!
Comment by Mike | October 25th, 2009
Thank you, Curt, for dropping by and sharing your beliefs in such a forthright manner. Perhaps if you could point to some error in Dr Offit’s initial premises or his calculations it would carry more weight than merely declaring his ideas to be BS.
It is the same with your other statements. Auto-immune diseases are caused by an over-active immune system, not a weakened one. If they are on the increase this undermines your argument.
There are studies to show the efficacy and safety of vaccines. But I prefer real life examples. Ten years ago measles was one of the leading child killers in Africa with 396 000 deaths a year. A massive vaccination programme has reduced that to 36 000.
Rotavirus remains. Over half a million children a year die world wide after contracting rotavirus. That is one child a minute. After donating the vaccine free to Nicaragua for three years to demonstrate its effectiveness, Merck plans to make Rotateq available at cost price to developing countries were over 80 per cent of the deaths occur. That will make a dent in Dr Offit’s royalty payments but somehow I do not think he will mind.
Comment by Lorene Amet | October 27th, 2009
Mike
As you will be coming to Edinburgh next month to a conference that is too horrendously expensive for me and most parents to attend, why don’t we meet one evening for a drink? That way you could tell me face to face what it is exactly you are reproaching me, and perhaps take the opportunity to explain better how you help autism, as I seem only to hear about you in blogs rather than on the ground so to speak. I surely would be interested in hearing your frank views and to have an open discussion.
Lorene Amet
Comment by Prometheus | October 27th, 2009
Given that Dr. Houston has had ample time to post or point us to data supporting the efficacy of the enzyme products he sells, can I safely assume that this data does not exist?
Testimonials - as Dr. Houston must know - are not a reliable form of data. If that is all he has, it’s better than nothing, but not by a lot. After all, homeopathy and “Crystal therapy” have testimonials. There are even “testimonials” that reptilian space aliens have secretly replaced most of the leaders of the world’s nations.
So, am I to understand that Dr. Houston has based his assertions that there is some positive value to taking the enzymes he sells on “data” that are as reliable as the reptilian takeover of the world?
I am open to other interpretations.
Prometheus
Comment by Mike | October 27th, 2009
Lorene
you can read my “reproach” in my response to the article you wrote for Communication.
http://actionforautism.co.uk/2006/12/03/biomedical-interventions-in-autism-a-reply/
I see no need to explain how I help autism. I answer to my employers and to the parents for the children I teach. I answer to my fellow members of the NAS for my advocacy work and my lectures are judged on their merits by the professionals who attend.
You are correct that these conferences are too expensive for most parents. But their intended audience are professionals whose fees and expenses are paid by their employers.
My conference appearance is sandwiched between my full time teaching commitments so I am unlikely to have the time to meet in Edinburgh. I am attending the AGM of the National Autistic Society on November 14th if you want to meet there.
Comment by Kent Adams | October 28th, 2009
Mike, I went to the link you supplied and I’ve copied and pasted this straw man from you:
Those “500 medical doctors, throughout the world” also include a Dr. Schwartz in California who is not allowed to examine boys without a chaperone because of previous misdemeanours. The Medical Board of California (2006) is currently trying to permanently revoke his licence to practise medicine after he persistently broke their injunction not to examine boys without a chaperone.
He chose to get round this problem by inventing a novel way to “uphold the principle that children with autism not only have the right, like any other children, to full medical investigation, but that the investigation must be comprehensive.” He interviews their mothers instead. And, without ever seeing the boys, orders a series of tests and prescribes treatments for them.
This is the company that Amet keeps. These are a few of the medical doctors who endorse her biomedical approach to autism. I am surprised that the NAS would publish an article that is so weak on logic, so riddled with factual errors and, above all, so ethically compromised. It is no more than a thinly veiled advertisement for her clinic, a commercial for autism treatments that are not supported by the literature rather than a serious discussion of that literature.”
I’m a member of the American Economic Association http://www.vanderbilt.edu/AEA/ as are some of these economists that like to use autistic as a negative adjective: http://www.paecon.net/
Because I and some of the economists that write and contribute to the “Post-Autistic Economics Network” belong to the same association I do, am I responsible in some way for what these guys do? If so, can I tear into anti-autistic things the NAS has and continues to do and associate those with you?
Comment by Mike | October 28th, 2009
Kent
my point was that DAN doctors are not all doctors and some of them are facing disciplinary action by bona fide professional bodies which is apparently no impediment to their DAN status. Kerry was admitted to DAN status after a child died in his care and while criminal and professional enquiries into the case were still in process. A reputable body would have waited for the outcome of these investigations before admitting him.
This is not about their attitudes or their beliefs. It is about professional misconduct. A valid comparison with the NAS would be to point out allegations of misconduct by employees that were ignored by the Society.
It would not be right to hold individual members responsible for the actions of a corporate body. I am not saying that Amet is compromised by the behaviour of other DAN practitioners. DAN is compromised because it tolerates unethical and poossible unlawful behaviour by some of its members and until it puts its house in order it is not a credible organization. Amet does herself no favours by relying on DAN for validation of her work.
Comment by Lorene Amet | October 28th, 2009
Mike
I do not consider myself as a DAN practitioner; there is no mention of DAN on our web site if you take a look http://www.autismtrust.org.uk, and I do not need DAN to validate my work. I do not consider myself as a medical doctor either. We have a much broader approach to autism and that approach is very different for those who are high functioning adults than for those at the other end of the spectrum, non verbal and dealing with health issues affecting their development for example. We work as a charity that means non-profit making, we rely heavily on grants, donations and volunteer work (currently, 16 data clerks and 5 IT people, 3 of whom have an ASD). It seems that you likely do not know well what is going on here, and it is a shame that you have opted to propagate angry misinformation rather than to take the opportunity to receive more clarification with an open discussion. I appreciate though that to report effectively the outcomes of the work done is required, trust me I am working on this, with all the challenges this constitutes. I feel the autism community benefits from a range of expertise and understanding and whilst a debate is always beneficial in any area, misinformation and propaganda rarely are. So my offerto meet up still stands. I am in favour of an open dialogue, but I do not mind if you refuse one either. It does not make much difference to me or to autism whatever you chose to do.
Lorene
Comment by Mike | October 29th, 2009
Lorene
if you do not consider yourself a DAN practitioner perhaps you ought to ask them to remove you from their list of licenced health care practitioners.
http://www.autismwebsite.com/practitioners/foreign_lc.htm
Your current DAN page is here. http://www.autismwebsite.com/practitioners/foreign/Lorene_Amet,_Ph.D..htm
This is your DAN page from 2006
DAN! Healthcare Practitioner
Dr. Lorene Amet, DEA, DIP BioTechnol, D. Phil.
Autism Treatment Trust
26B Great King Street
Edinburgh EH3 6HQ
United Kingdom
Telephone: +44 (0) 131 558 7444
email: lorene.amet@autismtrust.org.uk
Specialties: Clinical scientist - Neuroscience/epilepsy
Provides comprehensive range of biomedical testing: Yes
Vitamin/mineral supplementation: Yes
Essential fatty acids: Yes
Gluten and casein-free diet: Yes
Diet avoiding food allergens and yeast: Yes
Feingold diet: Yes
Digestive aids/Probiotics: Yes
Colostrum: Yes
Transfer Factor:
Antifungal pharmaceuticals and nutriceuticals: Yes
Secretin:
Heavy metal detoxification: Yes
IVIG:
Antiviral medications: Yes
Other: Full clinic with psychological assessment and Education (ABA/Play) interventions. Give access to further local services such as HBTO, cranio-sacral therapy. Conducts research into autism treatment efficacy and environmental causes of autism. Access to supplements at the clinic will be made from July 2006.
Approx. time spent on initial consultation: 1 hour for first introduction consultation (initiation of biomedical testing) followed by 3 hour consultation with child with medical/scientific and psychology/education input.
Approx. time spend on follow-up consultations: Emails weekly, 1 hour consultation every 3 to 6 months and repeat consultation with medical and psychological surveillance every 6 months.
DAN Conferences: Completed Training by Dr. JMcCandless (2005)
If there is a discrepency between the responses listed above and the practitioner’s actual practice,
please write to us at: ARI, 4182 Adams Ave., San Diego, CA 92116; or fax: (619) 563-6840
Comment by Do'C | October 29th, 2009
“I feel the autism community benefits from a range of expertise and understanding and whilst a debate is always beneficial in any area, misinformation and propaganda rarely are.”
It’s difficult for me to take any disdain for misinformation from Lorene Amet seriously.
Source
The general claim that baby-hair mercury levels in autistic children are abnormally low isn’t much more than completely unsupported B.S.
Comment by Lorene Amet | October 29th, 2009
Well Mike
You have retrieve information that is no longer on the ARI web site! The other more recent one (not the one you have included) should indeed be removed as I am not a DAN practitioner according to their definition of a required attendance to their conference on a yearly basis. I see you guys are simply unwilling to enter in a healthy conversation. The report on baby hair is a report of 3 independent studies, they are not my studies, and this is to be taken into account in the light of other studies. There is a new one that has just come out that definitely shows mercury doses as found in the first Hep vaccination (the one given on day one in the US) is detrimental to brain development and this is apparent within the first few weeks of life. Perhaps before commenting on science, people should actually have the knowledge that is required to interpret the findings within a broader context.
I will leave you to continue your bloging without further interference.
Comment by Mike | October 29th, 2009
Lorene,
I am not angry and it is not misinformation to point out that until recently you made a point of advertising your DAN credentials. In an article published in Communication you made a point of referring to DAN thus:
The biomedical approach to autism is currently endorsed by over 500 medical doctors, throughout the world in a total of 23 countries.
You published an article in Medical Veritas - Critical evaluation of the Defeat Autism Now! (DAN!)
biomedical intervention in autism: A parent perspective
including a case study carried out over 18 months implementing the DAN protocol on an unnamed child (LA).
If you no longer wish to be publicly associated with Defeat Autism Now is it because the protocols you follow at your clinic have diverged to a significant degree from the DAN protocols? Or has your clinical practise remained essentially the same and there is another explanation?
I am glad that you do not consider yourself a medical doctor if only because you are not a medical doctor. However that is not clear on the ATT website. In the section addressed to new parents one could be forgiven for assuming that this refers to a medical consultation with you:
At ATT we offer both Bio Medical Intervention and Applied Behaviour Analysis (ABA) for the treatment of autism. Both treatment are tailor made to you needs.
For parents /interested in Bio Medical Intervention/ who are distant from Edinburgh we offer a telephone first consultation with Dr Lorene Amet (1 hour approximately). [...] After the tests are completed and Dr Amet has studied the results you can then visit the ATT clinic for a second consultation (4 hours) with your child. At this time an assessment of behaviour, communication and learning can be conducted with our behavioural Analyst at your request.
I assume your reference to a HepB study is the one by Andrew Wakefield and vaccine litigant Laura Hewitson, Hewitson L, Houser LA, Stott C, Sackett G, Tomko JL, Atwood D, Blue L, Railey White E, Wakefield AJ. “Delayed acquisition of neonatal reflexes in newborn primates receiving a thimerosal-containing Hepatitis B vaccine: Influence of gestational age and birth weight.” Neurotoxicology. 2009 Oct 2. [Epub ahead of print]
A commentary on this study has been published by one who does possess the knowledge that is required to interpret the findings within a broader context.
I am sorry if my attempts at clarity appeared hostile to you. And I hope you reconsider your decision to quit this discussion.
Comment by Kent Adams | October 29th, 2009
I happen to know Lorene very well and you have completely misinterpreted her. I can understand this to a degree. I often argue with her about some of this crap. However, you should be going after Geier and others (Lorene does not practice anything that could be considered dangerous as far as I know). Did you know Lorene went after the Geiers at a conference? Did you know she is working to shut down JRC? Its not all black and white Mike and don’t contribute motives that aren’t there. You’re talking out of ignorance here.
Does she have some beliefs you and I don’t? Yes. Are they ultimately harmful to autistics, no. She also has a son that is far more severe than your own and thus his station in life contributes to her own search for answers. However, since I’ve known her, she is sympathetic to ND, more than sympathetic to furthering an autistic friendly agenda than most I see on the Hub.
She works to get autistics out of institutional placements, has fought the school system in her locality to help broaden opportunities for autistics and is a voice of reason within her own biomed community, which you are not privy to. On the one side there is Lorene, the single mom doing what her employer asks her to do and on the other side is Lorene the mother that wants to help better the world for autistic lives. I sometimes have a hard time separating the actions of one from the other but I’ve come to know her and while we still have fierce disagreements, I’ve come to recognize that she is more complex than the way you have portrayed her here.
Back off!
Comment by Mike | October 30th, 2009
Kent
there are important issues here, not least that the treatments offered by the Autism Treatment Trust are not supported by the current level of scientific knowledge about autism. And the rationale for many of those treatments is contradicted by much of the scientific evidence.
The fact that Lorene is sympathetic to the ideas of neurodiversity does not mean that she should not be challenged for promoting quackery, even harmless quackery, in relation to more severely autistic children.
Perhaps you could furnish me with examples of motives I have allegedly attributed to Lorene, before telling me what I can and cannot do.
Comment by Do'C | October 30th, 2009
Give us a break with the “you guys are unwilling” nonsense. The claim on your web site is a standalone claim of fact, and it is yours (ATT’s), without reference to a “report”.
It’s still unsupported B.S. and you’ve propogated it here without so much as an apparent ounce of critical thinking on the subject. The notion that baby hair mercury levels are somehow “lower” in autistic children despite claims (not actual measurements of prenatal mercury exposure) is popular among those who believe that autism is synonymous with mercury poisoning (this is a popular belief among the DAN/chelation crowd, especially those who don’t understand the actual Holmes et al. paper). This belief seems to lead to an erroneous conclusion for many (which was acutally part of a hypothesis suggested by Holmes et al.) that someone who is a poor mercury excretor should have “lower” hair levels of mercury. Unfortunately for such believers, the opposite is true. In addition to basic anatomy and physiology of circulation and hair formation lending several clues as to what should be expected, it has been shown that genetic predisposition for diminished mercury excretion leads to increased hair levels of mercury, not “lower” [Gundacker et al.,2007].
Congratulations on your Hep B mercury bandwagon membership!
Hep B vaccines in the U.S. have been essentially Thimerosal-free since 2001-2002. Detrimental? Development related in a relevant way to humans? Autism?
Comment by Kent Adams | October 30th, 2009
“Perhaps you could furnish me with examples of motives I have allegedly attributed to Lorene, before telling me what I can and cannot do.”
I believe making a connection between a child molester and this woman was a bit over the top and turned your criticism into the politics of personal destruction. There isn’t any need for that. It certainly is less persuasive.
Comment by Mike | October 30th, 2009
Your example does not point to Lorene’s motivation. It points to the dubious nature of an organization she was promoting at the time.
I wrote that piece in 2006 in response to an article by Lorene that was published in the NAS magazine Communication in which she used DAN to support her argument against me.
Pingback by blog-thing : Political abuse and the abuse of autism | November 5th, 2009
[...] position on vaccines and biomedical treatments perfectly clear hereand, more recently, here. But I agree with her that Packing is barbaric. It is time that the French medical and educational [...]
Comment by Broken Link | November 9th, 2009
In case anyone is still interested in the Enzymes and Autism group, this morning I received a message from the moderator, Karen Defelice, which I have pasted below. I’d be very interested in knowing who was performing the “viral work” trial study and who will do the gluten sensitivity enzyme trial study:
____
I have been away for a bit and now am back. I will be catching up various parts of the message board. The http://www.enzymestuff. com site will be getting updated as well.
If you have posted here in the past, or know someone who has, and felt more response was needed, please have another go at it.
Two new trial studies will be starting shortly:
1. one to continue the viral work
2. one to test a new enzyme product that targets gluten-sensitivity
More information will be coming in the next month or so as the specifics are solidified. The viral trial will include pre and post viral testing and each participant will need to work with a health care professional they are comfortable with. If you think you may be interested in this or know someone that might be, I will be posting information in this group as well as on the enzymestuff. com site.
If anyone has suggestions for topics they would like to see included at the http://www.enzymestuff. com site, please let me know.
Karen.
Comment by Jessica Witmer | June 15th, 2010
Wow, Learning from the DAN! community saved two of my children!!! For you to call them QUACKS is unbelievable to me. This article strikes me as propoganda for Big Pharma.
Without the protocols in Bock’s book, my kids would be miserable and sick and probably have regressive autism by now.
Wow…unbelievable.