I have written in the past about the case of Abubakar Tariq Nadama here, here and here. In fact my first ever blog post in November 2005 began as an internal discussion document that I wrote for the National Autistic Society [NAS] following Abubakar’s death. It was subsequently published in Communication, the magazine for members of the NAS and roundly condemned by advocates for biomedical interventions in autism. I republished it on Blogger and invited my critics to debate with me there. 145 posts and 1,746 comments later the debate continues.
This week I was shocked to learn that criminal charges against the doctor responsible for treating Abubakar, Roy Kerry MD, had been dropped because the defense had presented new evidence. Science Blogger Orac’s analysis concurred with my feelings that the confusion engendered by misleading statements from the CDC in response to the killing of Abubakar created enough potential for reaonable doubt for the defence attorneys to persuade the District Attorney to drop the case.
But what new evidence could contradict the undisputed facts of a case in which a child was chelated by a physician who had never chelated a child before using a chelation agent with a black box warning that specifically warned against using an IV push to administer the medication? Kerry used the IV push on Abubakar twice and sanctioned the third and ultimately fatal IV push that was administered by a junior employee while Kerry was absent from his clinic.
Just to remind readers.
Abubakar was 5 years old. He was a lively, healthy autistic child. His mother moved with him to the USA to seek treatment for his autism. His father, a doctor who specializes in respiratory diseases, remained in England. Abubakar was seen by Dr Anju Usman, a Defeat Autism Now practitioner, who referred him to Kerry because of persistently elevated levels of aluminium. Kerry used an off label medication to treat him and he died.This is the part that really confuses me.
- I have yet to see any persuasive scientific evidence about a connection between aluminium and autism.
- Even if there were a connection between autism and aluminium there is no clinical indication that any formulation of EDTA, either Kerry’s drug of choice - Disodium EDTA [Endrate] or the allegedly “safe” alternative - Calcium Disodium EDTA [Versenate] has a therapeutic effect on aluminium levels.
- So why did Usman refer Abubakar to Kerry and why did Kerry use Endrate to treat him, not for elevated levels of aluminium, but for lead poisoning? And this despite the fact that Kerry’s own lab tests showed that Abubakar did not have a problem with lead.
The basis for my questions is public knowledge. You can read it in the Order to Show Cause issued against Kerry by the Pennsylvania State Board of Medicine. But you will not find any answers to those questions. I had hoped that a court case would provide answers. The principle players, under oath, would have to tell the truth. So why is there no court case? I began by agreeing with Orac. The CDC flubbed it with their waffle about the wrong chelator, as if there had ever been a right chelator for autism.
But rereading the blogs I came across this entry from Kristina Chew in which she provided a source for the Nadama family’s decision to sue Kerry, his medical practice and his medical supplier, Apothecure. As well as condemning Kerry and his clinic, the legal notice also indicts Apothecure for providing misleading information about the Endrate they supplied to Kerry and accuses them of causing Abubakar’s death.
32. The inaccurate, unsound and dangerous information communicated by the ApothéCure Defendants to Dr. Kerry and Dr. Lewis as described in paragraph 30 was a direct and substantial cause in Dr. Kerry’s commission of the negligent acts described in paragraph 24 and 25. Therefore the ApothéCure Defendants are legally responsible for the conduct described in paragraph 24 and 25.
So is Kerry relying on the incompetence and negligence of his supplier to escape blame for his own incompetence and negligence in the case of Nabubakar Tariq Nadama? Are Pennsylvania going to pursue Apothecure through the courts? Perhaps they should consult with their opposite numbers in Oregon. It seems that Apothecure have a track record of incompetence and negligence in the manufacture and supply of drugs.
There is another possibility. Kerry’s attorney said
He said the defense was prepared to present expert witnesses who would testify the damage that occurred to Nadama’s heart, leading to a lack of oxygen to his brain and his death, was caused by something else, six to eight hours before the treatment at Kerry’s office.
Witnesses would have testified that the chemical used — disodium ethylene diamine tetraacetic acid — was appropriate, and there was nothing wrong with Kerry using an intravenous push instead of a slower I.V. drip to administer it.
So what made this child so sick in the hours before his final, fatal chelation episode at the hands of Kerry? And why was it not apparent and sufficient to postpone the fatal IV push. And who are the bojos prepared to give expert testimony in contradiction of the recommendation of the FDA regarding IV push with EDTA? Do tell, soon, please.
Footnote:
This is the letter I wrote to the reporter who broke the story of Kerry’s escape.
Dear Brian
I have just read your report on the dropping of all charges against Roy Kerry in the case of Abubakar Tariq Nadama. I have blogged extensively on this case as has science blogger Orac, whose most recent post, http://scienceblogs.com/insolence/2008/05/no_justice_for_abubakar_tariq_nadama.php#more is in complete accord with my feelings on this matter. My amazement at the decision to drop all charges is only surpassed by my amazement at Kerry’s announcement that he wants to continue in medicine!
Kerry was a member of the American College for Advancement in Medicine. He was listed as a member in 2006, a year after Abubakar’s death. http://www.acam.org/dr_search/index.php?q=Kerry&field=lname&submitted=1 A search today yielded no results. ACAM is an alternative therapy outfit that promotes chelation for heart disease using disodium EDTA aka Endrate because it binds to calcium. The theory is that if heart disease results in calcium plaques forming blockages the Endrate will remove the calcium and destroy the plaques. This is quackery pure and simple and has no basis in science.
Kerry gave Endrate to Abubakar three times in a concentrated IV push, ignoring the black box warnings on the label to only give in a slow dilute infusion. Abubakar showed no indication of any of the diseases for which Endrate is licenced. They used the push instead of the infusion because Abubakar was a lively 5 year old who could not be held still for three hours. 4 adults held him down for 5 minutes strapped to a papoose board for the IV push. By the third treatment his body was so depleted of calcium that his heart stopped.
Although Kerry is no longer listed by ACAM he is on a list of Defeat Autism Now practitioners. http://www.autismwebsite.com/practitioners/us/Roy_Kerry,_M.D..htm DAN supports chelation as a treatment for autism. At the time of Abubakar’s death they made great play of the fact that they supported transdermal and oral chelation and not the IV chelation practised by Kerry. The following year he was admitted to their list after attending a one day conference for clinical training and agreeing to abide by their protocols. DAN’s treatment protocols also have no basis in evidence based medicine. And Kerry’s listing indicates that he will continue to offer IV chelation to autistic children. Will he switch from Endrate to Versenate, the formulation of EDTA that does not pull calcium out of young bodies? Will he use a slow infusion or will he revert to a rapid IV push on children forcibly restrained as in the case of Abubakar? Does DAN know or even care?
If another child should die it is not only Roy Kerry who should appear in the dock.
Mike Stanton
May 9th, 2008
Posted by
Mike |
Quackery in Autism, biomedical interventions, chelation |
2 comments
If you have not read them already I urge you to visit Kristina Chew’s and Interverbal’s blogs where they write on an extraordinary technique employed by French psychiatrists to “treat” autism.
And if anybody is fluent in French I would be interested to know what they are saying about it on Forum Autisme My own limited grasp of the language suggests that, thankfully, a lot of French people are outraged by this “treatment” as well.
“A French treatment for autistic children with psychiatric problems which involves wrapping the patient in cold, wet sheets from head to foot is undergoing a clinical trial for the first time, which critics hope will see an end to the controversial practice.
The treatment, known as “packing”, involves wrapping a child in wet, refrigerated sheets in order to produce a feeling of bodily limitation and holding, before psychiatrically trained staff talk to the child about their feelings. Critics have called the procedure cruel, unproven and potentially dangerous, but its proponents say they have seen results.”
This is not quackery from some fringe movement like DAN! This is quackery from the heart of the French psychiatric establishment where Freudian-based psychoanalysis still holds sway. Before we get too smug it is as well to remember that the Tavistock Centre in the UK is funded by the NHS to treat autism with psychoanalysis. And according to the Lancet
Delion recently gave a course on the technique at the Tavistock Clinic in London, which is part of the UK’s National Health Service. Maria Rhode, a psychotherapist at the clinic, points out that there are currently no effective treatments for autism, and that caring for such children presents a major, long-term challenge to health services.
Thank you to Michelle Dawson for this. Writing on her discussion list, The Misbehaviour of Behaviourists she also informs me that Professor Hobson is a member of the Tavistock Centre. As I understand it Hobson believes autism results from a failure of interaction between child and caregiver that he regards as “the cradle of thought,” the essential foundation of what it means to be human. Here we are again. Autism is seen as a deficit that makes you less than human. So abuse of these children is OK in the name of science. I am sure scientists who experiment on animals have to follow stricter codes of ethical practise than those that apply to autistics and other victims of psychiatric research.
August 30th, 2007
Posted by
Mike |
Autism, Autism rights, Quackery in Autism, ethics, psychiatry |
13 comments
Roy Kerry has finally been charged with involuntary manslaughter, endangering the welfare of a child and reckless endangerment two years after Abubakar “Tariq” Nadama died as a result of treatment he received at Kerry’s clinic in Portersville, Pennsylvania. Kerry also faces an enquiry into his competency from the state medical authorities and is being sued by Tariq’s parents. Amazingly, on the day that charges were filed against him, Kerry was unavailable for comment because he was too busy treating patients!
Kerry gave Tariq an IV push of disodium EDTA (Endrate). This was wrong in so many ways.
- Endrate is a chelating agent that draws calcium out of the body and can cause heart failure.
- It’s only indications are for the emergency treatment of hypercalcemia and for the control of ventricular arrhythmias associated with digitalis toxicity.
- Even then it should only ever be administered as a slow infusion, never as a rapid push.
- The label recommends a 3 per cent saline solution. Kerry used a 50 per cent solution.
Much has been made of the fact that Kerry may have inadvertently used the wrong type of EDTA. There is a “safer” version, calcium disodium EDTA (Versenate) which, according to the FDA is indicated for lead poisoning (acute and chronic) and lead encephalopathy. Even this carries dangers.
Generic Name: edetate calcium disodium
Dosage Form: Injection, usp
WARNINGS: Calcium Disodium Versenate is capable of producing toxic effects which can be fatal. Lead encephalopathy is relatively rare in adults, but occurs more often in pediatric patients in whom it may be incipient and thus overlooked. The mortality rate in pediatric patients has been high. Patients with lead encephalopathy and cerebral edema may experience a lethal increase in intracranial pressure following, intravenous infusion; the intramuscular route is preferred for these patients. In cases where the intravenous route is necessary, avoid rapid infusion. The dosage schedule should be followed and at no time should the recommended daily dose be exceeded.
The International Herald Tribune reports that
Kerry has argued that the boy’s symptoms improved after the first two treatments. He acknowledged there may have been a “miscommunication” about which medication to give the boy during the third treatment, but said that did not amount to gross negligence.
This suggests that maybe Kerry used the “right” version of EDTA on the first two occassions and his assistant administered the fatal dose of the “wrong EDTA in his absence. But this contradicts these statements in the official record of the Pennsylvania State Board of Medicine.
72. Respondent stated to Inspector Reiser that disodium EDTA is the only form of EDTA that he stocks in his office.
73. Respondent admits that CaNa2EDTA is available but he has never used this agent.
All three treatments used the same medication, Endrate. By the time of the third treatment Tariq’s young body could no longer withstand the depletion of calcium from his system and he died. Would Tariq have survived if Kerry had used Versenate? Perhaps. But Versenate is indicated for lead poisoning and Tariq did not have lead poisoning according to the same official record of the Pennsylvania State Board of Medicine
43. A physician who previously treated Tariq. recommended treatment with CaNa2EDTA as recently as June 2005.
44. Respondent obtained a “post provocative” urine sample from Tariq on July 22, 2005.
45. A “post provocative” sample is a urine sample taken after the patient has been subject to drug therapy or chelation.
46. The laboratory report of this sample was completed on July 29, 2005 and sent to Respondent.
47. This laboratory report listed Tariq’s lead level as “elevated” but not in the “very elevated” reference range.
48. It should be noted that this laboratory report has a notation in bold print that reads “Reference ranges are representative of a healthy population under non-challenge or nonprovoked conditions.”
49. Tariq had a minimal elevation of his lead level.
50. The result of Tariq’s urine test also revealed a marked depletion in the iron present in Tariq’s body.
51. Controlled studies have shown a correlation between learning problems and low iron levels in children.
52. Respondent subjected Tariq to a second round of Disodium EDTA chelation on August 10, 2005.
53. In Tariq’s medical chart for the date August 10, 2005, Respondent writes, “The last IV EDTA produced 15mcg of lead level per gram of Creatinine. We really expected a higher output. Recommend repeating the IV again. Use the 1 gram of EDTA … on the next IV we’ll do another collection … IV given in the right antecubital fossa with no difficulty over about a 5-minute span. He gets a little sleepy afterwards and then he recovers in about 5 minutes. Recheck in 2 weeks.”
54. Theresa Bicker, a medical assistant employed by Respondent, stated she administered the Disodium EDTA On the second treatment on August 10, 2005.
55. The Respondent ordered his second treatment.
56. Respondent was in attendance during the August 10, 2005 round of Disodium EDTA chelation.
57. The August 10, 2005 chelation treatment was administered by a five to ten minute IV push.
58. On August 23, 2005, a third and final round of Disodium EDTA chelation therapy was administered to Tariq.
59. Theresa Bicker administered the IV Disodium EDTA to Tariq.
60. Bicker requested Doctor Mark Lewis, D.O.) to come to the treatment room to help restrain Tariq for the IV push of Disodium EDTA.
61. Respondent was not present when Tariq received chelation on August 23, 2005.
62. Theresa Bicker administered the Disodium EDTA pursuant to Respondent’s orders.
There is no evidence for misinformation about medication here. Indeed there is strong evidence for continuity of treatment over the three sessions. Even with the evidence that Tariq’s lead levels were normal Kerry persisted in chelating the poor child. Kerry stated in his notes that “we really expected a higher output [ ... ] Recheck in 2 weeks.” I would expect a doctor to check the levels before initiating a further round of treatment, especially as Tariq found the procedure so distressing that he had to be strapped to a papoose board and restrained by 4 adults during treatment.
FOOTNOTE
In the immediate aftermath of this tragic affair DAN! did their best to distance themselves from any involvement. Kerry was not a DAN! practitionr. His treatment was not part of the DAN! protocol. But once the fuss died own Kerry was admitted onto the list of DAN! Healthcare Practitioners. Furthermore, DAN! have never acknowledged their part in Tariq’s treatment. Tariq was referred to Kerry by DAN! practitioner Anju Usman.
21. The July 22, 2005 entry in Tariq’s medical chart reads, “We don’t have the entire record at all. Mother left her entire volume of his records home. But we have been in communication with Dr. Usman regarding EDTA therapy. He apparently has a very high aluminum and has not been responding 10 other types of therapies and therefore she is recommending EDTA, which we do on a routine basis with adults.
She presumably is the “physician who previously treated Tariq, [and] recommended treatment with CaNa2EDTA as recently as June 2005.” So a DAN! practitioner used all her dark arts to cure Tariq of aluminium poisoning. When that did not work she sent him to ACAM practitioner, Kerry for IV treatment with Versenate, even though Endrate is ACAM’s drug of choice. Kerry went against Usman’s advice on three separate occasions.
Was Usman following up on her patient?
Should she have known that Kerry was using Endrate instead of Versenate?
When did Usman’s duty of care end towards Tariq?
Why isn’t she in the dock with Kerry?
Maybe we will find when this case comes to trial and Usman has to take the witness stand.
August 23rd, 2007
Posted by
Mike |
Autism, DAN!, Quackery in Autism |
16 comments
If I were part of a group of parents of autistic children organizing an international conference costing in the region of 200,000 US dollars, I would want the best speakers in the world. My top ten, out of all the speakers I have listened to at autism conferences, in alphabetical order are Tony Attwood, Simon Baron-Cohen, Gunilla Gerland, Chris Gillberg, Judy Gould, Temple Grandin, Wendy Lawson, Gary Mesibov, Clare Sainsbury, Lorna Wing. I can think of dozens of others who, in my opinion, would grace any international conference on autism, including old friends like Larry Arnold, Luke Beardon, Leneh Molton, Dennis Debbaudt and those I only know via the internet like Michelle Dawson, Roy Grinker, Mike Fitzpatrick, Dinah Murray and Estee Klar Wolfond. Then there are all the others whom I have never heard speak, never met and never swapped emails with, like Eric Fombonne and Donna Williams.
So who have the Autism Parent Network lined up for the Asian Autism Conference in Hong Kong this September? Here is the official list with their authorized biographies. There is not one internationally acclaimed authority on autism. And they have also studiously ignored the local talent. The authors of this paper and this paper who all found no connection between mercury and autism have not been invited to speak. But there are plenty of snake oil salesmen, faith healers, exorcists and nutty professors who still cling to the mercury hypothesis.
Dr Ken Bock
Dr Ken Bock received his medical degree with honors from the University of Rochester. He is an experienced DAN clinician, whose expertise lies in bringing a comprehensive integrative medicine approach to complex medical problems. Utilizing this patient-centered approach he has helped thousands of children on the road to recovery. In this lecture he will explain why the gut and diet are the first step on this road to recovery.
Dr Jeff Bradstreet
Dr. Bradstreet is the founder of the International Child Development Resource Center in Florida. He is an Adjunct Professor of Neurosciences at Stetson University, Florida and the Southwest College of Naturopathic Medicine, Phoenix, Arizona. Dr. Bradstreet serves as an active collaborator on research projects at numerous medical schools. His interests in autism include metal detoxification, hyperbarics and immunological management of gastrointestinal problems. Dr Bradstreet will review the favorable clinical observations and research outcomes regarding the use of Hyperbaric Oxygen in autism spectrum disorders and outline common protocols.
Dr Stephanie Cave
The years between 1991 and 2002 will probably go down in history as the most controversial for the vaccine program. Many children were given vaccines containing toxic amounts of ethyl mercury and aluminum, as well as live viral contaminants. Dr. Cave will discuss the impact that this has had on the pediatric population, and will give some information about the numerous new vaccines that are being recommended. She will explain how important it is to get vaccinated, but safely.
Dr Doreen Granpeesheh
Dr. Granpeesheh founded The Center for Autism and Related Disorders and through its 17 offices worldwide, she has provided diagnosis, assessment and behavioral treatment for over 5,000 children with autism and related disorders.
Dr Martha Herbert
Dr Martha Herbert is a Pediatric Neurologist at Massachusetts General Hospital (Harvard Medical School) and is on the faculty of Harvard Medical School. She specializes in children with learning and developmental disorders. In this lecture she discusses the growing body of research demonstrating biomedical problems like inflammation and oxidative stress in Autism which suggests that the brain may not be the prime target but rather caught in the crossfire of system-wide abnormalities whose treatment can lead to improved brain function
Dr Andrew Levinson
Dr. Levinson is an Advanced DAN!R Practitioner and has been working with children on the spectrum and their parents since 2000. He is an orthomolecular psychiatrist, a yoga master and the founder of Vitality Health & Wellness, a center committed to reversing the symptoms of Autism and related disorders and the AMRIT Foundation, a non-profit organization that raises monies to help families seeking biomedical interventions.
Dr Liz Mumper
Dr. Mumper is a general pediatrician who treats children with autism spectrum disorders and attention deficits and conducts clinical research in her Virginia practice, Advocates for Children. She is Medical Director of the Clinicians Training for Defeat Autism Now! and co-chair of the DAN! Advisory Board.
Dr James Neubrander
Dr Neubrander is board-certified in Environmental Medicine with special interests in heavy metals and folate/B12 chemistry. He has pioneered the use of Vitamin Methyl B12 in the treatment of Autism and evaluated over 75,000 injections of Methyl B12. It is his opinion that there are certain factors that must be in place, or avoided, for clinicians and parents to realize optimal benefits.
Dr James Partington
Director of the Star School in California on Applied Behavioural Analysis (ABA), an important part of the overall treatment of ASD
Dr David Quiq
Dr. Quig received his PhD in Nutritional Biochemistry from the University of Illinois. He is currently Vice President, Scientific Support for Doctor’s Data, and has recently co-authored and facilitated several studies pertaining to toxic and essential elements in children with autism and learning/behavioral disorders.
Mr Stephen Shore
Mr Stephen Shore was diagnosed to have autism at young age. He obtained a Special Education degree from the Boston University. He actively participates in work relating to the education, social aspects, employment and rights of autistic persons. Mr Shore will be receiving his PhD in Special Education in September
I have no idea what Stephen Shore is doing in such company, nor why he, Temple Grandin, Valerie Paradiz and her son Elijah Wapner appeared at the recent
US Autism & Asperger Association Conference
Treating Autism as a Medical Disorder;
Bringing Biomedical Treatments and Behavioral & Developmental Therapies Together
Temple is probably the most famous autistic person in the world. When autistic people and their advocates appear at conferences like this they are not providing a countervailing view. They are giving tacit approval and validation to the quack remedies being espoused by their fellow speakers. who ask “If we are so off the wall why is Temple happy to share a platform with us?” Why indeed.
Meanwhile, a much less spectacular, but probably more important meeting is scheduled to be held in London next month. it features two of my friends, Larry Arnold and Dinah Murray.
THE POLITICS
OF AUTISM
7 pm September 2007
@ City Hall,
off Tower Bridge, London SE1
SPEAKERS
Dinah Murray (University of Birmingham)
Larry Arnold (Member, NAS Board of Trustees)
David Morris (Disability advisor, Mayor of London)
All speakers currently provisional
To register for the meeting please phone/ text 07875838968 or 020 79835773 or email david.morris@london.gov.uk or rocobley@hotmail.com.
Owing to circumstances beyond our control we cannot guarantee a personal response to any or all enquiries, but all requests for registration will be added to the attendance list.
VERY IMPORTANT NOTICE
Anyone wishing to attend this meeting MUST register in advance. No registration = No Admission.
August 13th, 2007
Posted by
Mike |
Autism, Quackery in Autism, politics |
13 comments
George Elliot’s eponymous hero Felix Holt was a man of principle unlike his father. After his father’s death,
Felix was heir to nothing better than a quack medicine; his mother lived up a back street in Treby Magna, and her sitting-room was ornamented with her best tea-tray and several framed testimonials to the virtues of Holt’s Cathartic Lozenges and Holt’s Restorative Elixir.
But Felix would not countenance his mother living on the sales of the quack medicines left to her by her late husband.
I know that the Cathartic Pills are a drastic compound which may be as bad as poison to half the people who swallow them - that the Elixir is an absurd farrago of a dozen incompatible things; and that the Cancer Cure might as well be bottled ditch-water.
Felix was determined to earn an honest living.
I shall keep my mother as well - nay, better - than she has kept herself. She has always been frugal. With my watch and clock cleaning, and teaching one or two little chaps that I’ve got to come to me, I can earn enough. As for me, I can live on bran porridge.
Patrick Holford - true believer.
Ah, bran porridge! Patrick Holford would be proud. He is a great believer in bran. Unfortunately, like Holt’s father, he is also a great believer in pills and elixirs and cures for cancer. In fact Holford thinks he can cure most things including cancer, diabetes, heart disease, alzheimers, arthritis and, of course, autism - hence my interest. And once you are cured he promises to give you beautiful skin and improve your sex life as well!
Patrick Holford - Quack
OK. The guy is a quack. End of story. Unfortunately this quack appears regularly on national TV and is cited as an expert by many national newspapers. As a result his books are bestsellers and he is beginning to gain an international reputation. This makes him a dangerous quack. Fortunately over at Holford Watch a team of bloggers are on his case
This blog uses basic science to challenge the nutritionist Patrick Holford. Holford’s website describes him as “a pioneer…Britains best-selling author and leading spokesman on nutrition and mental health”. Holford’s key qualifications include “being frequently quoted almost weekly in…newspapers”; he also claims to be “a vegan who eats eggs and fish”. With all these credentials, there’s obviously a lot to learn from watching the guy!
Another favourite of mine is Moonflake who wrote this:
Patrick also claims to have miracle multivitamin cures for almost anything. Not feeling mentally acute? Let’s see what his advice is on improving you memory and concentration:
Here are five easy steps you can take now to help keep your mind and memory sharp:
1. Read my book ‘Optimum Nutrition for the Mind’ £12.99
2. Join 100% Health today and you can have this book at a members discounted price.
3. Have a personal nutrition consultation.
4. Attend my 100% Health Weekend Workshop
5. Follow my Brain Friendly Diet and supplement programme.
He can’t be taking his own advice, or he might have considered swapping steps 1 and 2. But maybe it’s not a trend. Maybe he really isn’t all about sucking you dry of every miserable penny. Let’s see what his advice on avoiding cancer is:
Here are five easy steps you can take now to say no to cancer:
1. Read my book ‘Say No to Cancer’ - £6.99
2. Join 100% Health today and this book can be yours for free.
3. Have a personal nutrition consultation.
4. Attend my 100% Health Weekend Workshop
5. Follow my ‘Say No to Cancer’ Diet and supplement programme.
I think there might be a pattern here.
Ben Goldacre has also used his Bad Science blog and his newspaper column in the Guardian to expose Holford’s quackery, especially his pernicious tour of Africa when he touted vitamins as a more effective rememdy for AIDS than AZT. Incidentally it was in Africa that journalist Tom Eaton coined the immortal description of Holford as an international bowel-whisperer. He is also anti vaccine, unless they are homeopathic vaccines. I kid you not. And we are not talking common or garden MMR or flu jabs here.
Although less well researched, you may wish to investigate homoeopathic immunisations. In one study 18,000 children were successfully protected against meningitis with a homoeopathic remedy, without a single side-effect.
Inevitably, The Quackometer has revealed that Holford is on the advisory board of Safe Harbor, which is a front organization for the Scientologists. So we can add wackery to quackery.
AIDS, Cancer, Diabetes, Meningitis - these are killer diseases and Holford is giving potentially lethal advice to sufferers who eschew orthodox interventions in favour of his quackery. Compared to this are his dabblings in autism a sideshow that we can safely ignore?
I think not. Autism may not be life threatening but quackery often is. And parents who are aware of his outrageous claims in other areas will be less likely to trust their child’s welfare to somebody like Holford. So I looked at his website (google it if you must. I refuse to link to misinformation) from which all subsequent Holford quotes are taken.
Patrick Holford on Autism.
Autism appears to be occurring more often and while autism used to occur primarily from birth, over the past ten years there has been a dramatic increase in late onset autism, most frequently diagnosed in the second year of life.
Holford is claiming, with no supporting evidence, that regular autism is present from birth but now we have an increase in late onset autism which strikes at 24 months.
Late onset autism does not exist. Part of the diagnostic criteria for autism is that the symptoms are present prior to 36 months. How can there be a late onset variation that appears 12 months earlier? I suspect that Holford is referring to regressive autism, a term used to describes the condition in those children who appear to be developing normally but then regress or fail to meet subsequent developmental milestones. Analysis of family videotapes has shown that this is a real phenomenon. But many of the children who regress into autism show signs of atypical development prior to regression and expert diagnosticians can spot subtle signs, indicative of autism, in these children that parents and non-specialist clinicians often miss.
Holford would like us to believe that regression is caused by factors like the child’s diet, environmental pollution or vaccinations. The fact is that regressive conditions can be genetic. We even know which gene is responsible in Rett Syndrome, a regressive form of autism found almost exclusively in girls.
Patrick Holford on the causes of Autism
As with many conditions there is debate as to whether autism is inherited or caused by something like diet or environment.
Actually there is no debate. The consensus is that autism is genetic. Lots of factors affect gene expression, including other genes. Environmental factors that begin in the womb and continue after birth also play a part. What we have is a complex interaction of the organism and its environment that defies simple either or explanations. Holford is trying to revive the old genes versus enviroment dichotomy which no self respecting biologist would countenance today.
Parents and siblings of autistic children are far more likely to suffer from milk or gluten allergy, have digestive disorders such as irritable bowel syndrome, high cholesterol, night blindness, light sensitivity, thyroid problems and cancer. Being breastfed also increases the risk.
This is nonsense, and badly written to boot. Does the final sentence refer to risk of disorders in parents and siblings or the risk of autism? Whatever happened to “Breast is Best”?
At first glance, once might suspect that autistic children may inherit certain imbalances. However an alternative explanation might be that other family members eat the same food and may be lacking the same nutrients and there is growing evidence that some of the nutritional approaches used to help correct dyslexia, dyspraxia and ADHD can make a significant difference to the autistic child.
None of this is supported by the data. It is anecdotal. But there are also many anecdotes from parents about the unusual eating habits of their children. In other words, they do not eat the same food.
Recently there has been a raging debate over the danger of the MMR vaccine causing autism in children. The official line is that there’s no good evidence of such a danger.
The debate is over. Wakefield was wrong. He thought he had found measles in the gut but it was in fact human DNA not measles RNA. The exchange reported by Autism Diva at the autism omnibus proceedings suggests that he published his results knowing that there was good reason to doubt them. Wakefield ignored the doubts. Real science is built on doubt and it is real science, not the official line that has debunked Wakefield.
Patrick Holford - How to Improve the Symptoms of Autism.
Ensure that any nutrient deficiencies are addressed - Research has shown that addressing nutrient deficiencies can dramatically improve symptoms in Autistic children.
Holford is not talking about healthy eating here. There is a lucrative market in selling vitamins, mineral supplements and essential fatty acids. Holford is part of this scam.
Remove Allergens - In addition to nutrient deficiencies, the most significant contributing factor in autism appears to be undesirable foods and chemicals that often reach the brain via the bloodstream because of faulty digestion and absorption.
Actually the scientists who subscribe to this theory regard it as evidence of food intolerance, not an allergy. Allergic reactions are immediate and can range from hives to anaphylactic shock. The effects of food intolerance build up over time. Evidence for food intolerances causing autism is weak and hotly contested. But, even if his sources are mistaken, Holford could at least do them the service of reading them properly and making sure he understands them before rushing into print!
The strongest direct evidence of foods linked to autism involves wheat and dairy and the specific proteins they contain - namely gluten and casein. These are difficult to digest and can result in allergy especially if introduced too early in life.
Once more, it is intolerance not allergy. Words matter. Accuracy matters, especially in medical matters. I am reminded of the old joke.
A man walks into the doctor’s surgery and says, ”I want to be castrated.” The doctor tries to dissuade him but finally agrees to do it. After the operation the doctor does his rounds and says to the man, “I am still baffled by your request. It was most unusual. Men normally come to me to be circumcised.” “Oh,” the man replies, “That was the word I was looking for!”
So, what is the right word for Holford: quack; charlatan; fake; snake oil merchant; conman; exploiter; evil, lying busturd? send your answers to info@patrickholford.com
EDIT
NHS Blog Doctor and Holford Watch have both commented on Patrick Holford today. Support your local quackbusters!
June 27th, 2007
Posted by
Mike |
Autism, MMR, Quackery in Autism |
13 comments
New Scientist has published an interesting commentary on the Autism Omnibus proceedings that are taking place in the United States Court of Federal Claims. They are quite rightly sympathetic to the Cedillo family whose case is the first of around 4,800 that seek to establish whether or not thimerosal containing vaccines, MMR or a combination of the two can cause autism. There is no question that Michelle Cedillo is severely disabled. There is a very big question over whether or not she is the victim of vaccine damage.
New Scientist is less sympathetic to some of those advising the parents and offering expert testimony on their behalf. They have identified a number of problems.
Lawyers representing the parents are acting on the assumption that their claims are statements of fact and that they are only having to go into court because of some kind of conspiracy between the US government and the vaccine manufacturers or ’big pharma’ in the parlance of the petitioners and their supporters. New Scientist again.
Those findings have not, however, stopped some lawyers from discussing the link as if it were already fact. The firm of Williams, Love, O’Leary, Craine and Powers, based in Portland, Oregon, is representing the Cedillo family. The company website states that “thousands of children” have developed autism “as a result of their exposure” to thimerosal.
One consequence of this mindset is that they are not approaching the court as an independent arbiter of two conflicting claims. Rather, they see the court as another obstacle in their fight for justice. Autism Diva has blogged about a very perceptive discussion of the trial on National Public Radio. One of the contributers, Gardiner Harris, a reporter with the New York Times observed that:
It’s a little bizarre that way, because the lawyers for the claimants — so normally when you go into a court where a judge is making the decision …. there’s a podium right in front of the judges and the lawyers stand in front of the judges… in this case the claimants’ attorney turned the podium around and spoke to the audience instead of to the special masters who will actually make the decision and I think it tells a lot about this case.It’s not clear that it’s all about money or even about winning for the claimants. I think … they are talking to a different audience.
I think that Harris is onto something. Some of those who believe that these autistic children are vaccine damaged have convinced themselves that government, the courts and the scientific establishment are all in cahoots with the drug companies. The children are victims of an enormous conspiracy. They do not expect to win. And if their ‘experts’ are shown up for fools or charlatans, their humiliation will be seen as martyrdom and may even enhance their status amongst those parents for whom the vaccine question has become an article of faith.
It is easy to imagine how well meaning others can be so impressed by the parents’ sincerity that they are swept up by an emotional tsunami that destroys their critical faculties. It is also the case that more cynical observers are quick to step into the wreckage to exploit the suffering with snake oil remedies and dubious research.
The New Scientist cites the Geiers as a case in point. Regular readers of this blog will be familiar with the exploits of this family firm and the stirling efforts made by Kathleen Seidel to investigate and expose their dubious activities. It looks like the New Scientist reads her blog as well. It cites her by name. So now its readers know about their phoney IRB that they use to give ethical cover to experimenting on children with Lupron.
And here’s a novelty. When my son was recruited to a research programme into autism at University College in London it did not cost us a penny. They paid all our expenses. Parents who want to enrol their children for the Geier’s research have to pay! Thanks to the New Scientist for this.
He [Geier] adds that he charges parents $500 for an initial consultation, but does not invoice them after that and so makes “virtually nothing” from his work with the families.
So let’s get this straight. The parents pay him $500. They or their insurance companies pay for all the necessary blood tests, lab work and the highly expensive lupron injections. They even administer the drugs themselves. One parent has reported sitting on his daughter to restrain her while injecting her with the drug. Geier works from his home in Maryland, a well appointed dwelling with a pool and a tennis court and a home made laboratory. He has no academic affiliation, though his son and co-author did lie about his affiliation on one of their papers. George Washington University cried, ‘Foul!’ and the paper was withdrawn and republished in a corrected version. Geier publishes the results of his “research” in obscure journals to bolster his career as an expert witness.
Last time out he did not do so well. According to his biography on Wikipedia:
Dr. Geier’s views have been found to fall outside of the scientific consensus. In a 2006 case[12] regarding an immunoglobulin containing thimerosal which was alleged to have caused autism, Dr. Geier’s testimony was found to fall below the Daubert standard, which essentially requires expert testimony on science to be scientifically sound and represent the general consensus. As Dr. Geier provided most of the plaintiffs’ evidence, the case was thus subject to summary judgment.
Amongst the criticisms in the judge’s decisions,[13] Dr. Geier’s literature review was found to be insufficient in justifying his claims, his lack of qualification in pediatrics was highlighted and he was found to be a “professional witness in areas for which he has no training, expertise, and experience,” whose testimony was “intellectually dishonest,” “nothing more than an egregious example of blatant, result-oriented testimony.”
The Omnibus hearings are taking place in a federal court. I only hope that, when Geier takes the stand and testifies to his research methods, his disregard for his research subjects’ [children] right to protection and his encouragment of insurance fraud will bring the Feds down on him like a ton of bricks and he can enjoy his martyrdom for the cause from behind bars.
New Scientist also mentions Robert Nataf, a French chemist.
One potential check for mercury involves a urine test for porphyrins, molecules that occur naturally in the body and bind to metals. Interest in the test accelerated last year following the publication of a paper claiming that autistic children had higher porphyrin levels than normal (Toxicology and Applied Pharmacology, vol 214, p 99).
While the researchers state in the paper that they have no conflicts of interest, lead author Robert Nataf is the founder of Laboratoire Auguste Philippe, a Paris-based clinic that sells porphyrin tests. When discussing his research with parents Nataf has also stated that he has a paper “in press” at The Lancet Neurology. Editors at the journal say they have no record of a paper by him. When asked to comment, Nataf did not clarify the situation.
If they had asked me I could have clarified the situation. It is one and the same paper. Last year New Scientist published a story about this paper. They interviewed another of the authors, Richard Lathe. I wrote to New Scientist pointing out that Nataf was telling parents that the research was going to be published by the Lancet and asked for clarification. Instead of clarifying the situation they suggested I contacted Lathe and clarify it for myself. I did and Lathe told me that Nataf had been premature. He omitted to say that the paper had been submitted to Lancet Neurology and rejected. So they had hawked it around until they found a journal with low enough standards to publish it.
Another of the authors of this paper was Lorene Amet. Amet has an autistic son. She has explored a number of therapies for him the including the Son-Rise method and ABA. Eventually she became a DAN! practitioner and set up a clinic in Edinburgh selling biomedical treatments, including chelation, to parents who can buy their porphyrin tests off her fellow researcher, Robert Nataf.
New Scientist concludes:
While Nataf’s failure to disclose his commercial interests may have breached normal publication ethics, it is likely to mean little to the parents of autistic children. Email groups dedicated to discussing the condition are full of pleas for help from parents frightened by a disease that shuts off their children from the rest of the world. Under such circumstances, says Israel parents are desperate for a cure: “If you had autistic children, would you wait for published trials, or would you treat them?
Alan Israel is one of those who profits from the parents. According to New Scientist he owns a pharmacy that sells the chelating agent DMSA to parents, a snip at a $100 for a month’s supply, and ‘treatment’ can last for years. He relies upon parents fear of “a disease that shuts off their children from the rest of the world.”
Autism is neither a disease nor does it shut children off from the world. New Scientist has made a good stab at the autism vaccine controversy. But the erroneous characterization of autism with which the article concludes is exactly the sort of thing that encourages desperate parents to seek desperate measures.
June 23rd, 2007
Posted by
Mike |
Autism, MMR, Quackery in Autism, autism parents |
11 comments
Moving tale that highlights genetic condition becomes sleeper hit of the year
Paul Harris in New York
Sunday June 17, 2007
The Observer
Like many good stories, The Memory Keeper’s Daughter begins on a dark and snowy night. But, unlike most first novels from barely known authors, the book has gone on to be one of the biggest hits in recent American publishing. It has sold more than 3.5 million copies in America and is due for publication in at least 15 other countries. It has done all this despite - or perhaps because - it is about one of the most emotional and difficult situations any new parents might face: a child being born with Down’s syndrome.
According to the Observer
The book has been a huge hit among parents of Down’s children and those who work with them. They have praised its portrayal of a child leading a full life and bringing happiness to a parent.
This is all very positive but I wonder, if the writer had interviewed people with Downs, would they have praised it because it portrayed a child with Downs bringing happiness to a parent? I have always found that the joy of parenthood derives from bringing happiness to my children. Perhaps this is what the writer meant, that parents can rejoice in their children’s happiness.
Apparently many prospective parents of Downs children do not believe that their child will be happy. Over 90 per cent of Downs fetuses that are identified by prenatal screening are aborted. The UK Downs Syndrome Association estimates that 10 in 10,000 live births are Downs. Earlier estimates, before amniocentesis became common, ranged from 15 to 24 in 10,000.
The relevance to autism
With Downs we know exactly where the genetic abnormality lies but have no idea why one of the parents produces a sperm or egg cell with an extra chromosome. We do not understand how this extra chromsome works to produce the features of Downs Syndrome and nearly 50 years after Professor LeJuene discovered the trisomy on chromosome 21 we are still a long way off being able to reverse or ameliorate its effects. All we can do is identify around a half of Downs pregnancies and offer an abortion.
A lot of money is being spent on research into genetic markers for autism. There is not just one, there are dozens of candidate genes for autism and, unlike Downs which is present from conception, there are as yet unknown environmental factors which may contribute to gene expression. Yet every discovery is trumpeted as leading to a possible cure or a genetic test to prevent autistic babies from being born.
This is damaging for a number of reasons.
- If a cure is thought to be just a few decades away this will divert funding way from research into ways of improving outcomes for people who are already autistic.
- To justify the huge expenditure autism has to be hyped as a health crisis that is devastating lives, when in fact it is lack of understanding and the irrational fears that this sort of hype encourages that are the biggest obstacles for many families.
- If autism is so unremittingly awful and the genetic solution is hyped as twenty years down the line parents of newly diagnosed children are going to be vulnerable to the biomedical quackery that is already entrenched among some sections of parents.
- Existing autistics will be viewed at best as victims and not as human beings with equal rights to acceptance and ethical treatment.
As public opinion increasingly lines up behind scientific opinion on the unfeasibility of the autism vaccine hypothesis it is important that we speak up for autism acceptance and challenge the triumphalism in those quarters of the mainstream medical and scientific research community that seek to eliminate diversity.
June 17th, 2007
Posted by
Mike |
Autism, Downs Syndrome, Neurodiversity, Quackery in Autism, disability rights, genetic research, parents |
7 comments
I nominate this for the annual “Teaching Granny to Suck Eggs award.”
Rigour, respect and responsibility: A universal ethical code for scientists
Rigour, honesty and integrity
Act with skill and care in all scientific work. Maintain up to date skills and assist their development
in others.
Take steps to prevent corrupt practices and professional misconduct. Declare conflicts of interest.
Be alert to the ways in which research derives from and affects the work of other people, and
respect the rights and reputations of others.
Respect for life, the law and the public good
Ensure that your work is lawful and justified.
Minimise and justify any adverse effect your work may have on people, animals and the natural
environment.
Responsible communication: listening and informing
Seek to discuss the issues that science raises for society. Listen to the aspirations and concerns of
others.
Do not knowingly mislead, or allow others to be misled, about scientific matters. Present and
review scientific evidence, theory or interpretation honestly and accurately.
This piece of guff is published by the British Government. Scientists are supposed to sign up to this in order to restore public confidence in science. Chief scientific advisor to the government, Sir David King has been promoting the code in a series of articles in the Guardian. To be honest, if I was a scientist my first reaction would be to feel insulted by such patronising nonsense. My second reaction would be profound disappointment.
This is our government’s response to growing public mistrust in science. There is a common perception that scientists have sold themselves to the big corporations and to government. So the government response is to ask to scientists to promise not to do all the things that they are wrongly accused of. It is akin to the no win situation where a man is asked, “When did you stop beating your wife.” Scientists are assumed to have a case to answer. The onus is on them to reassure the public by signing up to a code which can be summed up as, “I promise to be good from now on.”
It would be a lot better to actively defend science and point to the undoubted benefits it has brought. My favourite website at the moment is Sense About Science. This is not a government department. It is a charitable trust.
Sense About Science is an independent charitable trust promoting good science and evidence in public debates. We do this by promoting respect for evidence and by urging scientists to engage actively with a wide range of groups, particularly when debates are controversial or difficult.
If the government really wants to raise scientific awareness and understanding it could do worse than reprint this year’s annual lecture from Sense About Science, a spirited defense of science by Professor Richard Tallis, and post a copy to every household in the country.
Meanwhile, the people who really ought to sign up to the government’s ethical pledge are the same quacks and alternative practitioners who are cashing in on the public mistrust of real science and selling them pseudo-science. As Professor Tallis puts it, the problem is
why scientific expertise and science itself is regarded with suspicion; and why nonsense about science and nonsense passing itself off as science seems to be having such an easy time of it.
So let us apply the government’s ethical code not to science, but to those who are selling alternatives to science like ARI/DAN! the Autism Treatment Trust and the rest of the alternative autism treatment industry. How would they cope with this?
Scientists and institutions are encouraged to reflect on and debate how these guidelines may relate to
their own work. For example, acting with rigour, honesty and integrity may include: not committing
plagiarism or condoning acts of plagiarism by others; ensuring that work is peer reviewed before it is
disseminated; reviewing the work of others fairly; ensuring that primary data that may be needed to
allow others to audit, repeat or build on work, are secured and stored. Similarly, in communicating
responsibly, scientists need to make clear the assumptions, qualifications or caveats underpinning their
arguments.
For some intelligent, exciting writing about science and autism please visit these blogs:
http://autismdiva.blogspot.com/2007/03/down-time-or-what-red-queen-needs.html
http://photoninthedarkness.blogspot.com/2007/03/tale-of-two-studies.html
http://photoninthedarkness.blogspot.com/2007/03/tale-of-two-studies-part-second.html
http://www.autismstreet.org/weblog/?p=108
March 26th, 2007
Posted by
Mike |
Autism, Quackery in Autism, science |
9 comments
Rett Syndrome is unusual amongst autistic spectrum disorders for two reasons
- It is far more common in girls than in boys.
- We know what causes it - a mutation of the gene MECP2 on the X-chromosome.
Because it is genetic, Rett parents have not been chasing cures like some autism parents. This has made Rett syndrome a relatively quack free zone, so far. On Thursday a team of researchers led by Dr. Bird of the University of Edinburgh announced that they had successfully activated the MECP2 gene in mice using Tamoxifen and that this had led to a reversal of Rett like symptoms and an improvement in brain function. Kev and Kassiane have both blogged their concerns that the purveyors of autism quackery will try to exploit this and I share their concerns. Fortunately Dr. Bird is not only a very good scientist. He is also an able communicator. The Rett Syndrome Research Foundation have published a video of Dr. Bird talking about this research in which he says,
Tamoxifen only works in this context because the mice have been set up to respond to it by activating the MECP2 gene. But in order to get them to do that it was necessary to alter the struture of the gene in specific ways. It would have absolutely no effect in humans.
So, why all the fuss?
Firstly, this confirms the work of Dr. Huda Zoghbi who discovered the link between MECP2 and Rett Syndrome in 1999. I find this particularly satisfying because it was Dr. Bird who discovered the MECP2 gene in 1990. More importantly it suggests that if scientists can find out how to correct the mutation in the MECP2 gene in humans it may be possible to reverse the symptoms of Rett Syndrome. Girls have two copies of the X-chromosome, one from each parent. Research suggests that most of the mutations are inherited from the father. If scientists could find a way to inactivate the chromosome carrying the mutated gene and activate the normal back up would it work like the mouse experiment? That is the hope and the expectation expressed by Dr. Bird. It is still a long way off. The paper concludes that
The experiments do not suggest an immediate therapeutic approach to RTT, but they establish the principle of reversability in a mouse model and therefore raise the possibility that neurological defects seen in this and related human disorders are not irrevocable.
Autism Acceptance and Neurodiversity
Rett parents have long practised acceptance out of necessity and got on with the job of seeking those treatments and therapies that help their children. In the broader autism movement there have been similar arguments from necessity. Time spent seeking a non-existent cure is lost time. It is much better to get on with the job of relating to your autistic child and finding ways to help them. The quest for a normal child can impede that relationship and the child may feel your disappointment and be affected by it. The most terrible thing my son ever said to me was, “I wish I could have been the little boy you never had.” There is every possibility that non-verbal, apparently low functioning autistic children may harbour similar thoughts. So autism acceptance may be therapeutic, both for children and their caregivers
There are also arguments from diversity. These have arisen from within the autistic community, based on the concept of neurodiversity. Autism is seen, not as a defective way of being, but as a different way of being. There are autistic strengths as well as weaknesses. But science continues to see autism purely in terms of deficit. We should seek to celebrate diversity instead of trying to stifle it.
Some would go further and argue that autism is neither a medical nor a scientific phenomenon. Rather it is a social construct with a history that is open to deconstruction and reinterpretation. Larry Arnold discusses these ideas on his blog, most recently in his entry Autism, it’s not what you think, it’s how you do.
The ideas of neurodiversity speak to a wider audience than just parents. Though parents like myself have been persuaded by their arguments. Autistic adults are campaigning over human rights, not just for themselves but on behalf of autistics who are subject to questionable treatment in schools and institutions. Clinicians and researchers are being encouraged to move away from a disease model of autism and to start from a position of respect for the autistic condition. Autism organizations are being asked to take account of the opinions of autistic people and to include autistic people in their governing bodies. The National Autistic Society has made great strides in this respect. The page on their website entitled “Is there a cure?” begins with this quote from Joshua Muggleton, an autisic teen.
”We are not born to suffer. We are born to thrive. If you live in a dry area and your garden receives little water, you plant plants which like dry soil. But when you are given a plant that likes wet soil, you don’t kill it, you water it, you spend one of your 1440 minutes each day watering that plant. Because you know, that given the right care, that little bit of effort can produce spectacular blooms. And so it should be with children like us.”
The page ends like this.
Although this page has been written primarily for the parents of newly-diagnosed children, it may be helpful to note the viewpoints of some adults with autistic spectrum disorders. There is a growing movement amongst autism activists who don’t think in terms of ‘curing’ a ‘disorder’ but instead of celebrating difference. Please take time to read their viewpoints below.
It then links to stories about the Autistic Liberation Front, to Autistics.org, Neurodiversity.com and Don’t Mourn For Us. Whenever I get impatient with how slowly the NAS is moving I return to that page before turning to Michelle Dawson’s blog that documents the uphill battle with Canadian autism advocates who see normalization as the only option for all autistics whether they want it or not.
Is our position under threat?
Now that there is a real possibility of a cure for Rett Syndrome some time in the future, will it undermine the movement for autism acceptance and encourage those whose aim is normalization? Some will certainly see it that way. But in the short to medium term I predict that it will increase the tension between organizations like Autism Speaks that are funding research into genetic causes for autism and those like NAA and Safe Minds who think they already know the cause and the cure and are only interested in research that confirms their prejudices.
Neurodiversity has nothing to fear from sound research like Dr Bird’s. It helps to clarify our understanding of autism and adds to our understanding of neurology. Rett itself is a spectrum condition. Kerr et al have identified both strengths and weaknesses in Rett Syndrome and discuss the complexity of the symptom mix. Rett Syndrome has always seemed a very atypical pervasive developmental disorder. Whereas most PDDs are diagnosed on the basis of behaviour, Rett has distinct physical symptoms. These can be very distressing and potentially life threatening. I see no contradiction between wanting to relieve those symptoms and valuing diversity.
Part of the problem is that a lot of our thinking about neurodiversity has been shaped by our opposition to those who have sought to demonize autism and to eradicate it by any means necessary. Autism Diva has compared their position with the more positive attitude of Rett parents prior to Dr Bird’s research. And now there is hope for a possible cure they are not crying out to Cure Rett’s Now! In a video of parental responses one father expressed a hope that he might hear his daughter speak before he died, even if he had to wait until he was eighty.
Dr. Bird’s research raises important questions about getting the balance right when discussing treatments and cures in the context of respect for neurodiversity. It is a challenge, not a threat, and one that I welcome.
February 11th, 2007
Posted by
Mike |
Autism, Neurodiversity, Quackery in Autism, autism acceptance, autism parents |
26 comments
Treating Autism is hosting the two day Autism-Biomedical Conference at the Bournemouth International Centre with funding from the National Lottery this weekend. (Friday 9th and Saturday 10th February)
Regular readers of this blog will not be surprised to learn that I have misgivings about this. Basically the DAN! protocol is being promoted in a big way in England for the first time. This follows on from the success of Action Against Autism in setting up a DAN! clinic in Scotland under the leadership of Lorene Amet following their biomed conference in Edinburgh in October 2005.
I have three major objections to DAN!
- They accept as fact that there is an epidemic of autism caused by environmental toxins.
- They claim that by using chelation to remove these toxins children can be recovered from autism.
- Any charlatan or quack can become a DAN! practitioner merely by doing an eight hour training session at one of their conferences. Children have been sexually abused, injured and killed by DAN! practitioners whose details are still up on the DAN! website with no warnings about their professional misconduct.
I am particularly surprised that Anju Usman is such a prominent speaker at this conference. Dr Usman was the DAN! practitioner treating Abu Bakar Tariq Nadama after his mother took him from Britain to America seeking a cure for his autism. Dr Usman referred him on to Dr Kerry. Tariq subsequently died as a result of the treatment prescribed by Kerry. According to Kerry’s case notes, published by the Pennsylvania State Medical Board as part of their case against him,
“We don’t have the entire record at all. Mother left her entire volume of his records home. But we have been in communication with Dr. Usman regarding EDTA therapy. He apparently has a very high aluminum and has not been responding to other types of therapies and therefore she is recommending EDTA, which we do on a routine basis with adults. We therefore checked him to it … But on testing for the deficiency indicator we find him only indicating the need for EDTA at the present time. Therefore we agree with Dr. Usman’s recommendation to proceed with the treatment. She recommends 50mg per kilo. He is 42 pounds today. So we’ll treat him with a 20-kilo child and give 1 gram of EDTA.
Later on Pennsylvania State Medical Board reports that Usman actually recommended calcium disodium EDTA.
43. A physician who previously treated Tariq. recommended treatment with CaNa2EDTA as recently as June 2005.
There are two forms of EDTA. Disodium EDTA is used for the emergency treatment of hypercalcemia and in control of ventricular arrhythmias associated with digitalis toxicity. Tariq did not have either of these illnesses. Calcium disodium EDTA can be used to treat aluminum poisoning but is more commonly used for lead poisoning. The calcium is added because disodium EDTA on its own also binds to calcium. Tariq died because the disodium EDTA depleted his body levels of calcium to such an extent that his heart stopped.
The Pennsylvania State Medical Board also notes that Tariq had low levels of iron. And Usman had referred Tariq to Kerry because of high aluminum levels. Deferoxamine is often used to treat aluminum poisoning. It also binds to iron. If Usman was using that to treat Tariq it would explain his low levels of iron. It does not explain why she sent him to Kerry, a doctor who never ever used calcium disodium EDTA. He only ever used disodium EDTA
Even if I was a true believer in biomedical cures for autism, before I ever invited Dr Usman onto a conference platform, I would want to know
- Did she use Deferoxamine on Tariq? Was she monitoring his iron levels?
- Did she specify CALCIUM disodium EDTA to Kerry when she referred Tariq?
- If so, would he not have told her that he never used it and did not have it in stock?
- Did she understand at the time how different the two forms of EDTA are?
- Did she object when Kerry was granted DAN! status AFTER he killed Tariq?
We know that Kerry is unfit to practise medicine. Until questions about her role in the death of Tariq are settled there are serious doubts about Dr Usman. Will she answer these questions in Bournemouth? Will they even be asked? for Tariq’s sake, and for the sake of all the potential Tariqs, I hope so.
February 5th, 2007
Posted by
Mike |
Autism, DAN!, Quackery in Autism |
23 comments
