Best bit? The journalist telling Wakefield to shut up about his book.
The National Autism Association tries and fails to defend Andrew Wakefield’s fraud
6 JanOf the groups pushing the vaccines-caused-an-epidemic-of-autism idea, the National Autism Association stands out. In a good way. They are the one group that actually has a non-vaccine segment to their agenda. They presented recently at the IACC on issues of safety. Unfortunately, they are stuck in the vaccine-causation debates of 10 years ago. Case in point: coincident with the lifting of the embargo on the BMJ’s pieces on Andrew Wakefield (e.g. How the case against the MMR vaccine was fixed) the NAA put out a statement defending Mr. Wakefield. (National Autism Association Says BMJ Article is Yet Another Attempt to Thwart Vaccine Safety Research)
As a part of this defense, they claim that Mr. Wakefield’s research has been replicated. The claim has been made before and upon scrutiny shown to be false. They use 5 references:
(1) Clinical Presentation and Histologic Findings at Ileocolonoscopy in Children with Autistic Spectrum Disorder and Chronic Gastrointestinal Symptoms, Arthur Krigsman, MD, et al, New York University School of Medicine, Autism Insights, 27 Jan 2010
(2) Endoscopic and Histological Characteristics of the Digestive Mucosa in Autistic Children with gastro-Intestinal Symptoms. Gonzalez L, et al. ArchVenez Pueric Pediatr, 2005;69:19-25.
(3) Panenteric IBD-like disease in a patient with regressive autism shown for the first time by wireless capsulenteroscopy: Another piece in the jig-saw of the gut-brain syndrome? Balzola F, et al. American Journal of Gastroenterology. 2005. 100(4):979-981.
(4) Childhood autism and eosinophilic colitis. Chen B, Girgis S, El-Matary W.. Digestion. 2010;81:127-9. Epub 2010 Jan 9].
(5) Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report, Timothy Buie, MD, et al, Department of Pediatrics, Harvard Medical School Pediatrics, Vol. 125 Supplement January 2010
Taking a lead from Catherina at JustTheVax, who showed last year that the “replication” of Mr. Wakefield’s results was not independent nor a replication, I will take a look at the 4 papers which are purported to “confirm” and association between autism and bowel disease.
1) A paper by Arthur Krigsman in Autism Insights. Arthur Krigsman was one of Andrew Wakefield’s partners at Thoughtful House when he wrote this. Both have since left. Autism Insights is an online journal whose editors include Dr. Krigsman himself. At the time Dr. Krigsman’s paper was published, the editorial board also included Andrew Wakefield. (strangely, Mr. Wakefield is no longer listed on the editorial board). Hardly independent. Right now, Autism Insights has 18 editors. They also have 8 published papers. Yes, they have twice the number of editors as papers. One has to question if this is a real journal. The Krigsman paper was timed to come out to support Andrew Wakefield at a time when his press was quite poor. Not a replication.
2) Gonzalez, et al.. From JustTheVax:
Gonzales et al, number 2, has been published in “Arch Venez Pueric Pediatr” which stands for Archivos Venezolanos de Puericultura y Pediatría. It was a bit tricky to get my hands on the paper, especially since the citation was not quite right, but I did manage and was not surprised to find that indeed the authors cannot replicate Wakefield’s 1998 “findings” of a distinct autistic enterocolitis, although they do report a higher incidence of gastrointestinal problems in their autistic group.
3) Balzola, et al.. Again, from Catherina:
Balzola et al, number 3, is a case report of one adult autistic patient with inflammed bowel.
4) Chen, et al.. Here’s the abstract, which spells out a rare association in 2 children, with possible mechanisms that may connect the two.
BACKGROUND/AIMS: The significance of the association between many gastrointestinal pathologies and autism is yet to be discovered. The aim of this report is to highlight an association between autism and microscopic eosinophilic colitis in 2 children. The possible mechanisms that may connect these two conditions are discussed.
METHODS AND RESULTS: A rare association between autism and microscopic eosinophilic colitis in 2 children is reported through retrospective chart review. Common causes of secondary eosinophilic colitis were excluded.
CONCLUSION: This report suggests the possibility of either impaired intestinal barrier function or an aberrant immune system that predisposes autistic children to sensitization to environmental antigens. Large controlled studies are needed to examine this hypothesis.
5) Bui, et al.. Here is the paragraph in that paper discussing Mr. Wakefield’s work:
In 1998, Wakefield et al. reported an association between ileocolitis and developmental regression in 12 children and coined the term “autistic enterocolitis.” From the same uncontrolled study they reported NLH of the ileum and colon as an abnormal finding in most children with ASDs. However, similar findings are known to be present in children with typical development, as well as children with food allergies and immunodeficiencies. The significance of these findings, therefore, is unclear. Wakefield et al. also proposed a causal relation between measles, mumps, and rubella (MMR) vaccination and autism, a suggestion that was later retracted by many of the original authors.
None of these papers is a replication of Mr. Wakefield’s work. And this is the best that the NAA can do to support Mr. Wakefield’s work, given 12 years of research since his paper in the Lancet. It also avoids the very clear problem with trying to “replicate” or “confirm” work that was fraudulent to begin with.
What is even more strange is that the NAA goes on in their piece to discuss the hypothesized link between autism and vaccines. Strange because Mr. Wakefield has been strenuously distancing himself from the impression that his paper “proved” a link between autism and vaccines.
Mr. Wakefield’s work was fraudulent. The BMJ says so in clearly and conclusively. It is time for some autism parent organizations to distance themselves from this man and his work. They are doing themselves and the autism communities as a whole any good by further association with him.
Current Trends In Autism Conference – April 29-30, 2011
6 JanI’ve written before here at LeftBrainRightBrain about the upcoming Current Trends in Autism Conference. At the time I first heard about it, I was hopefully optimistic that a good conference might be in the works. Autism parents are in great need of a real science based conference. The conference is being organized by the Lurie Family Autism Center LADDERS (“Learning and Developmental Disabilities Evaluation & Rehabilitation Services”).
The speaker list is now available, and I copy it below (go to their site if you want live links for each speaker):
Current List of Speakers
Margaret L. Bauman, MD
Director, TARF and LFAC/LADDERS/MGH; Associate Professor of Neurology, Harvard Medical SchoolTimothy Buie, MD
Pediatric Gastroenterologist, LFAC/LADDERS/MGHKatarzyna Chawarska, PhD
Director, Toddler Developmental Disabilities Clinic, Yale School of MedicineAnn Densmore, EdD CCC SLP/A
Founder, Child Talk; AuthorMarie Duggan
Founder/President, Technology For Autism Now; AAC/AT Consultant, Boston Higashi School for AutismPeter Gerhardt, EdD
Founding Chair, Scientific Council, OAR; Director of Education, Upper School, The McCarton SchoolCharles Henry, MD
Child Psychiatrist, LFAC/LADDERS/MGHDorothea Iannuzzi, LICSW, BCBA
Individual and Family Clinician, Milestones, Inc.Michael A. Mancusi, LICSW, BCD
Vice President, Health Center Operations, East Boston Neighborhood Health CenterMarvin Natowicz, MD, PhD
The Cleveland Clinic, Autism and Metabolic DisordersJerry Newport
Autism Activist; International Speaker; Subject of the Feature Film Mozart and the Whale; AuthorCarlos Pardo, MD
Associate Professor of Neurology and Pathology, The Johns Hopkins Hospital Department of NeurologyMary Elizabeth Parker, PT, MSPT, PCS, NCS
Department of Physical Therapy, Texas State University, San MarcosStephen Shore, PhD
Assistant Professor of Education, Adelphi University; ASA Board of Directors; AuthorTimothy Yu, MD
Department of Neurology, LFAC/LADDERS/MGHSheldon Wagner, PhD
Director, Behavioral Development and Educational Services, Inc.Michael Weiss, PhD
Director of Applied Developmental Analysis (ADA) Therapy, LLC; Adjunct Faculty, Psychology, Fairfield UniversityRosemary White, OTR/L
Director, Pediatric Physical & Occupational Therapy Services and Pacific Northwest PediatricAndy Zimmerman, MD
Pediatric Neurologist, LFAC/LADDERS/MGHAdditional speakers to be announced!
So far, one autistic adult is on the program, Jerry Newport. More autistic adults will be included as well.
BMJ editorial: Wakefield’s article linking MMR vaccine and autism was fraudulent
6 JanIn a recent post here on LeftBrainRightBrain we discussed the first in a series of articles by investigative journalist Brian Deer in the BMJ. There is also an editorial by the BMJ, “Wakefield’s article linking MMR vaccine and autism was fraudulent“. The Lancet’s retraction of the Wakefield paper was fairly mild, citing only that the patients were not consecutively referred and the study did not have ethical approval. The BMJ’s statement is much more clear, and with a reason. From the editorial:
The Lancet paper has of course been retracted, but for far narrower misconduct than is now apparent. The retraction statement cites the GMC’s findings that the patients were not consecutively referred and the study did not have ethical approval, leaving the door open for those who want to continue to believe that the science, flawed though it always was, still stands. We hope that declaring the paper a fraud will close that door for good.
Perhaps wishful thinking on their part, as there will always be people who believe Mr. Wakefield.
The BMJ goes further. They are calling for a review of other papers by Mr. Wakefield with the question of whether more retractions are warranted.
What of Wakefield’s other publications? In light of this new information their veracity must be questioned. Past experience tells us that research misconduct is rarely isolated behaviour. Over the years, the BMJ and its sister journals Gut and Archives of Disease in Childhood have published a number of articles, including letters and abstracts, by Wakefield and colleagues. We have written to the vice provost of UCL, John Tooke, who now has responsibility for Wakefield’s former institution, to ask for an investigation into all of his work to decide whether any more papers should be retracted.
This parent of an autistic child welcomes this move by the BMJ. I am grateful to the editors for their action.
BMJ press release: there is “no doubt” that it was Wakefield who perpetrated this fraud
6 JanHere is the press release for the series in the BMJ on Andrew Wakefield.
Today, the BMJ declares the 1998 Lancet paper that implied a link between the MMR vaccine and autism “an elaborate fraud.”
Dr Fiona Godlee, BMJ Editor in Chief says “the MMR scare was based not on bad science but on a deliberate fraud” and that such “clear evidence of falsification of data should now close the door on this damaging vaccine scare.”
She is struck by a comparison between researcher Andrew Wakefield’s fraud and Piltdown man, that great paleontological hoax that led people to believe for 40 years that the missing link between man and ape had been found.
She also questions the veracity of Wakefield’s other publications and calls for an investigation “to decide whether any others should be retracted.”
A series of three articles starting this week reveal the true extent of the scam behind the scare. The series is based on interviews, documents and data, collected during seven years of inquiries by award-winning investigative journalist Brian Deer.
Thanks to the recent publication of the General Medical Council’s six million word transcript, the BMJ was able to peer-review and check Deer’s findings and confirm extensive falsification in the Lancet paper.
In an editorial, Dr Godlee, together with deputy BMJ editor Jane Smith, and leading paediatrician and associate BMJ editor Harvey Marcovitch, conclude that there is “no doubt” that it was Wakefield who perpetrated this fraud. They say: “A great deal of thought and effort must have gone into drafting the paper to achieve the results he wanted: the discrepancies all led in one direction; misreporting was gross.”
Yet he has repeatedly denied doing anything wrong at all, they add. “Instead, although now disgraced and stripped of his clinical and academic credentials, he continues to push his views. Meanwhile the damage to public health continues.”
“Science is based on trust,” concludes Dr Godlee. “Such a breach of trust is deeply shocking. And even though almost certainly rare on this scale, it raises important questions about how this could happen, what could have been done to uncover it earlier, what further inquiry is now needed, and what can be done to prevent something like this happening again.”
The BMJ will explore these and other questions over the next two weeks.
Brian Deer in the BMJ: How the case against the MMR vaccine was fixed
6 JanBrian Deer, the investigative journalist who broke the story of the misdeeds of Andrew Wakefield, has a new article in the BMJ, How the case against the MMR vaccine was fixed. The article is prefaced:
In the first part of a special BMJ series, Brian Deer exposes the bogus data behind claims that launched a worldwide scare over the measles, mumps, and rubella vaccine, and reveals how the appearance of a link with autism was manufactured at a London medical school
This article is damning enough, but as a series this may lay out clearly, in one place, the cases behind the multiple ethical breaches which cost Andrew Wakefield his license to practice medicine in the UK.
Some may ask “why?” There is so much information out there about Mr. Wakefield and his misdeeds. Do we really need it again? I would say yes. In this BMJ series we have the research (and other) ethical lapses laid out in a medical journal. No lengthy GMC transcripts. No news stories with false balance. No “Callous Disregard” book.
The full article is worth the read. Here is the summary from today’s article.
How the link was fixed
The Lancet paper was a case series of 12 child patients; it reported a proposed “new syndrome” of enterocolitis and regressive autism and associated this with MMR as an “apparent precipitating event.” But in fact:
• Three of nine children reported with regressive autism did not have autism diagnosed at all. Only one child clearly had regressive autism
• Despite the paper claiming that all 12 children were “previously normal,” five had documented pre-existing developmental concerns
• Some children were reported to have experienced first behavioural symptoms within days of MMR, but the records documented these as starting some months after vaccination
• In nine cases, unremarkable colonic histopathology results—noting no or minimal fluctuations in inflammatory cell populations—were changed after a medical school “research review” to “non-specific colitis”
• The parents of eight children were reported as blaming MMR, but 11 families made this allegation at the hospital. The exclusion of three allegations—all giving times to onset of problems in months—helped to create the appearance of a 14 day temporal link
• Patients were recruited through anti-MMR campaigners, and the study was commissioned and funded for planned litigation
In multiple ways, the story of the Lancet article was crafted to support the conclusion Mr. Wakefield had–a conclusion he came to before starting on the research project.
Yes, before.
In his research proposal to the legal aid board, Mr. Wakefield made the following statement (quoted in Mr. Deer’s article):
““In contrast with the IBD cases [those set out in paragraph 2] which have a prima facie gastrointestinal pathology, children with enteritis/disintegrative disorder form part of a new syndrome. Nonetheless, the evidence is undeniably in favour of a specific vaccine induced pathology. ”
Mr. Deer presents a table comparing how the Lancet article reported the 12 children and how the records really show their cases. He compares regressive autism (only 1 patient’s records clearly show it), non-specific colitis (only 3 children showed it) and whether symptoms occured in the days following MMR (10 clearly did not, 2 are unclear). In all, none of the Lancet 12 children had all three features.
So that is the Lancet 12: the foundation of the vaccine scare. No case was free of misreporting or alteration. Taken together, NHS records cannot be reconciled with what was published, to such devastating effect, in the journal.
Mr. Deer opens his piece with a discussion he had with the father of child 11. Mr. 11 did not agree with the way his son was represented in the Lancet article. Mr. 11 states:
“Please let me know if Andrew W has his doctor’s license revoked,” wrote Mr 11, who is convinced that many vaccines and environmental pollutants may be responsible for childhood brain disorders. “His misrepresentation of my son in his research paper is inexcusable. His motives for this I may never know.”
We may never know the motives. In the end, I don’t care. It is the damage that this fraudulent research has caused to the autism communities and to public health that matter. Countless families have believed Mr. Wakefield, with parents blaming themselves for causing their child’s disability. As to public health, Mr. Wakefield is responsible for a drop in vaccine uptake in the UK, which led to disease and death.
Further reading on the subject can be found at Action For Autism with Wakefield and the MMR Autism Hoax
Paul Offit responds to Mark Blaxill
5 JanOver at Age of Autism today, financial whizz Mark Blaxill subjected Paul Offit’s finances to his usual searing intellect. I can’t quote from his post because its just to smart for me to understand!
Anyway, his conclusion has drawn the following response from Paul Offit in an email:
Just for the record: I no longer financially benefit from the sales of RotaTeq. My financial interests in that vaccine have been sold out by either The Wistar Institute, The Children’s Hospital of Philadelphia, or me. I will, however, continue to stand up for the science of vaccines because unfounded fears about vaccines have hurt children. That is why I do what I do and why I have always done it. And I will continue to closely follow the distribution of rotavirus vaccines because these vaccines have the potential to save as many as 2,000 children a day, which is why I joined the research team at Children’s Hospital.
Seems pretty clear to me 🙂
Quality of Life in Adolescents With Autism Spectrum Disorders: Reliability and Validity of Self-Reports
5 JanThis is one of those papers I really wanted to read and report on, but I fear that I will not get the time to do an in-depth read for some time. But the subject is very interesting and I wanted to get this out before it drops off my radar.
Here’s the abstract:
Shipman DL, Sheldrick RC, Perrin EC.
From the *Department of Pediatrics, Fallon Clinic, Worcester, MA; †Developmental-Behavioral Pediatrics Floating Hospital, Tufts Medical Center, Boston, MA.
AbstractPURPOSE: This study examined the reliability and validity of self-reported quality of life (QoL) among adolescents with autism spectrum disorders (ASDs) but without mental retardation (IQ >70) using a validated QoL measure, Pediatric Quality of Life Inventory. Secondarily, the self-reported QoL of adolescents with ASDs was compared with published normative data.
METHODS: Thirty-nine adolescents with ASDs and their parents completed a QoL instrument and brief measures of psychosocial distress and self-esteem. A screening test of cognitive abilities was administered to adolescents; parents completed an assessment of behavioral and emotional symptoms and an assessment of the presence and extent of autistic social impairments.
RESULTS: Adolescent self-reports of QoL demonstrated internal reliability and concurrent validity. Self-reports on the Pediatric Quality of Life Inventory demonstrated moderate to large positive correlations with a measure of self-esteem and moderate to large negative correlations with measures of anxiety and mood. Concurrent validity with parent proxy reports fell within the range of expected values based on past studies of inter-rater reliability for QoL, with parents of adolescents reporting lower QoL when compared with adolescent reports. Adolescents reported QoL below the population mean for all domains.
CONCLUSIONS: Results of this study provide preliminary evidence that adolescents with ASDs are able to report on their own QoL in a valid and reliable manner. Based on our findings, the measurement of QoL may be useful for clinical care and research about adolescents with ASDs.
The idea here is excellent–ask the autistics themselves about their quality of life (QoL). The authors found that the adolescents were more accurate than their parents in describing their quality of life. Reported quality of life is lower than for the general population. QoL is higher for adolescents with higher self esteem and lower for “measures of anxiety and mood”. I don’t know if the authors can or tried to tackle the question of whether high self-esteem contributes to quality of life, or the other way around…or if it is a much more complex situation? The study is limited to autistics with IQ>70. The group is fairly small as well. Of course the big question–how to improve quality of life? What from this study can help in that regard, or in directing future studies.
The past is present (non autism related post)
5 JanKev has recently discussed the book, Deadly Choices: How the Anti-Vaccine Movement Threatens Us All. Besides discussing the dangers the movement poses in its current form, Dr. Offit puts the anti-vaccine movement into historical perspective.
Ever since there was vaccination, there was a resistance to the practice. One of the easiest hooks is to discuss the ingredients. In the case of the original vaccine (which used the cowpox virus to protect humans against smallpox), the target was clear: it comes from cows. One of the more famous images was a cartoon made by James Gillray, showing people growing cow parts after vaccination (click image to enlarge):
It’s so 19th century. Or, is it?
I wasn’t aware of this image (or didn’t remember it) before I read the book. I was taken aback by the similarity to recent imagery used to frighten people about the rotavirus vaccine. If you recall, fragments of a pig virus were found in one of the rotavirus vaccine brands. This was a time for a reasoned, serious discussion. Was there potential for these virus fragments to be harmful? (as it turns out, the virus does not infect humans. It is even found in the fecal matter of humans who have recently eaten pig products).
Yeah, kinda cute and funny. The text of the post has headings like “Rotavirus Vaccines Use Monkey, Cow, Pig Materials for Production” and, for some odd reason, “Using Cancer Cells to Produce Vaccines? ” What this has to do with pig virus fragments in rotavirus vaccine is beyond me. The post goes on to link to a video by Barbara Loe Fisher, who discusses “fatal pig viruses”. Fatal to infant pigs, yes. Fatal to humans, no. But, Ms. Fisher doesn’t make that distinction.
Here’s another image, this time from the Age of Autism blog:
There is room for a real vaccine safety movement. In fact, vaccine safety advocates have been successful in creating real change. Dr. Offit makes this clear in his book. But scaring people with these images isn’t helping anyone.
Deadly Choices: How the Anti-Vaccine Movement Threatens Us All
4 JanI mentioned in a previous post that I was reading Deadly Choices and used it as the basis for a post on how much of a myth the idea of there being ‘mild’ diseases is.
I’ve (literally) just finished reading the book so I want to give it a review. I should be clear up front, I liked the book very much and I like Paul Offit too so you’re not going to find much negativity here.
The book is a clear and coherent look back at the roots of the modern anti-vaccine movement (mostly in the US but we get a sadly necessary large mention too), its leading proponents and figures. It also swings up to the modern day and looks at the contemporary anti-vaxxers such as Jenny McCarthy etc.
Sadly (from my point of view) it makes the role of modern day anti-vaccinationism clear: its mainly due to the confluence of vaccines and autism that has given rise to a politically motivated type of anti-vaxxer. To give examples we’re all familiar with its like when an out n out anti-vaxxer like the owner of the website whale.to became friends with the leaders of Generation Rescue that the initial overlap first occurred – first they borrowed material from each other then they become supporters of each other and now they follow the common goal of destroying the vaccine program in the West. That might sound a little over the top but its nonetheless true. Ask any anti-vaxxer what their goal is and that goal will be the eradication of vaccines.
Offit’s book is also a study of some of the incidents where vaccines _have_ been at fault and details how these rare occurrences are used to chronicle the side effects of vaccines and direct future safety testing. The first few chapters of the book make it clear just how important some of these tragic incidents have been to today’s safety testing. Another upcoming book that tackles this subject is Seth Monookin’s The Panic Virus and of course Offit’s own book The Cutter Incident details one such incident in great detail.
According to Offit himself:
I wrote this book for children; Deadly Choices is an attempt to stand up for them. A child’s vaccination decisions are made by his or her parents. If an adult chooses not to be vaccinated from Hepatitis B and she dies, that was her own choice to not be vaccinated. What bothers me is that children aren’t making that choice. Who represents the children?
And he’s absolutely right. In the same vein, whilst Deadly Choices is not an autism book per se, it should be the responsibility of the autism community to spread its message far and wide, partly because its the right thing to do and partly because its the modern day autism community that has spearheaded and led the contemporary anti-vaccine message. We have some wrongs to right.
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