Respectful Insolence

I’m almost beginning to feel sorry for Andrew Wakefield.

Well, not really. He did bring all the misery that’s poured down upon him like an unending waterfall of woe, such as the British General Medical Council (GMC) finding him guilty of research misconduct and soon very likely to recommend that he be “struck off,” a delightful British term for removing someone’s medical license and thus striking him off the list of licensed physicians. Soon after, the editors of The Lancet retracted his infamous 1998 paper that purported to suggest that there was a link between the measles virus in the MMR vaccine and enterocolitis in autistic children. After all, it was the “research” for this paper that had resulted in the ruling against Wakefield, and no wonder. It was incompetent, trial lawyer-funded research that may very well have been fraudulent. Given these findings, it was virtually impossible for The Lancet to stand by Wakefield’s study any more, although it was at least six years late compared to 10 of the 13 coauthors who had disavowed the paper earlier. Given the GMC’s findings, it was also difficult for the editors of NeuroToxicology not to make like The Lancet and withdraw Wakefield’s infamous “monkey study,” which had been accepted for publication but not yet formally published, although it had been published as an “E-pub ahead of print” on the journal’s website. The final blow came when Wakefield was forced to resign from the house of woo that he had founded, Thoughtful House in Austin, TX. Since then, he’s been looking for a way to bring himself into even further disrepute, but thus far, with only a recent exception or two, flown under the radar.

One of the issues that has been most mysterious about the whole affair has been the issue of scientific fraud. A little more than a year ago, investigative journalist Brian Deer capped off his then five year investigation of Wakefield with a report of compelling evidence that Wakefield had falsified data in his Lancet paper. Fourteen months later, Brian Deer has revisited the topic in a report for the British medical journal BMJ entitled Wakefield’s “autistic enterocolitis” under the microscope. In this article, Deer did something I’ve never seen published in a medical journal before. He went back and looked at the original clinical data from Wakefield’s paper and then had various experts look at it again and render opinions. He also talked to at least one of the original peer reviewers who had foolishly approved Wakefield’s paper, told him the results of his investigation, and then asked him if he would have approved the manuscript in light of the new analysis. In putting the story together, Deer paints a picture that shows Wakefield as almost certainly being behind major scientific fraud or gross incompetence, perhaps both.

First, Deer points out the impetus for Wakefield’s original 1998 study:

So what survives of “autistic enterocolitis” after Wakefield’s disgrace and the paper’s retraction? The answer requires an understanding of Wakefield’s mission, which was to discover precisely such a disease. Two years before the paper was published he was hired by a solicitor to help launch a speculative lawsuit against drug companies that manufactured MMR vaccine. And the instrument of their attack was to find what he called at the time “a new syndrome” of bowel and brain disease caused by vaccines.

Yes, Wakefield was a loyal minion of the trial lawyers to the tune of hundreds of thousands of pounds. He needed evidence, and he went looking for it. Unfortunately, reality did not cooperate:

But when the children were brought in to the Royal Free for ileocolonoscopy, between July 1996 and February 1997, a snag in Wakefield’s project emerged. The hospital’s pathology service repeatedly judged colonic biopsy samples to be unexceptional, and thought bowel disease was a possibility in only one child

In almost all cases, histopathologists reported a typical mix of cell types and numbers in the biopsy specimens. “Large bowel-type mucosa within normal histological limits,” said, for example, the report for child 3 in the series. “No evidence of architectural distortion or increase in inflammatory cells in the lamina propria,” said child 4’s.

The lead pathologist for the Wakefield project, and an author of the now retracted paper, was Susan Davies, now at Addenbrooke’s Hospital, Cambridge. At weekly meetings with paediatricians, the unexceptional results were confirmed.

For four of the 12 she made additional notes recording the position more bluntly: “no abnormality detected.”

AFter reading this, I’m guessing that you’re wondering: So what? Why not just go back and look at the original slides. Unfortunately, that is not possible. The original slides, for unexplained reasons, are no longer available. I don’t know what hospital pathology departments are like in the U.K., but here in the U.S., they keep the slides and the paraffin-embedded blocks used to make the slides for considerably longer than 12 years. I find it curious indeed that none of the slides from the original 12 “Wakefield children” is available for re-review by expert pathologists. It stinks. It stinks to high heaven.

Stymied in this, Deer did the next best thing, although it is not nearly as satisfying. He got the hospital pathology reports together and followed their trail through Wakefield’s study. What he found was the perfect confluence of incompetence mixed with what appears to be dishonest. For one thing, eight out of eleven of the children for whom pathology reports could be located had pathology reports that were stone cold normal. Contrast this to Wakefield’s paper, which reported “nonspecific colitis” in 11/12 children. How could this mismatch have come about. That is what Deer tried to find out.

Deer concludes (reasonably, based on my reading of the evidence) that the mismatch came about through ambiguities in the use of the term “inflammation” and “colitis.” Remember, we’ve discussed before, part of the reason that the GMC ruled against Wakefield is that he had children subjected to colonoscopies that were not medically indicated. A colonoscopy is an invasive procedure, and it is not to be taken lightly, even for valid medical reasons. Biopsies were then obtained. What needs to be understood is that some degree of inflammation is very common and not necessarily abnormal in the colon, particularly if you are looking for it. The more you look, the more you will find, and Wakefield’s group found a lot as they reexamined the slides for all the children, particularly the ones that had previously been described as “normal.” This resulted in:

“It was decided that the senior consultant histopathologist with expertise in intestinal disease (Dr Dhillon) should review all biopsies from autistic children, and that pathology should be graded on a pro forma (or grading sheet) designed by him,” Wakefield said last March, in a now suspended complaint to the UK Press Complaints Commission about one of my Sunday Times reports.

Notice how Wakefield says “inflammation,” not colitis. Why does this make a difference? Because the two are not the same thing:

As for the histological grades produced in any second review the published paper includes nothing of these. In any case, specialists I’ve consulted say that grading sheets are research tools and don’t generate clinical diagnoses such as colitis. Applying such terminology is a clinical decision: somebody must make a judgment. Moreover, in 1997, the British Society of Gastroenterology said that “inflammation requiring further investigation” to reach “a specific disease category” should be called “inflammation–unclassified.”15 Not colitis. Would the Lancet have published on just “inflammation–unclassified”? Would any claim of a new syndrome have sounded credible? And how many peer reviewers would have felt comfortable approving the paper if they had known that the hospital pathology service reported biopsy specimens as largely normal, but they were then subjected to an unplanned second look and reinterpreted?

The response from one of the Lancet’s peer reviewers of the Wakefield paper was “no”: he wouldn’t have felt comfortable. “I’m surprised the GMC didn’t make more of this,” said David Candy, paediatric gastroenterologist at St Richard’s Hospital, Chichester, who reviewed the paper in 1997. “That’s an example of really naughty doing–to exclude the original pathology findings.”

In any case series (which is what Wakefield is now calling his paper in a futile attempt to make it sound as though he wasn’t doing research and thereby avoid charges of research misconduct), omitting the original pathology findings is indeed a definite no-no. It’s just not done. Moreover, “reinterpretations” of any pathology findings must be thoroughly explained to the satisfaction of peer reviewers that the reinterpretation is not generating desired results, rather than looking at objective indices. It would indeed be a huge red flag to see a study in which the original pathology reports virtually all did not agree with the final research pathology reports. Any peer reviewer worth his or her salt wouldn’t approve a paper like that.

The big question, then, is: How were the findings of mild focal inflammation in many of the patients end up being translated to “nonspecific colitis”? Brian Deer makes a compelling case that it was Andrew Wakefield who “translated”:

Wakefield last year offered a glimpse into how this happened. He gave a detailed explanation for child 8–the only girl in the Lancet series. This 3 year old’s clinical notes said: “Histology normal.” The pathology service reported three large bowel biopsy specimens: “All pieces of normal colonic-type mucosa containing occasional lymphoid aggregates,” a consultant reported. “Minimal inflammatory changes. May be result of operative artefact.”

Wakefield wrote: “When the biopsies were reviewed and scored by experts in bowel pathology–namely, Drs Dhillon and Anthony–these doctors determined that there was mild inflammation in the caecum, ascending colon, and rectum,” he said. “This was correctly reported as non-specific colitis in the Lancet.” In other words, it looks like it was Wakefield who translated the scores.

Unfortunately, this is not an acceptable practice. Deer points out that minimal or mild inflammatory changes, in and of themselves, should not be reported as colitis. The reason is that the diagnosis of colitis actual evidence of injury to the lining of the colon. It is not enough simply to have an influx of inflammatory cells. Wakefield wasn’t a pathologist; so perhaps he didn’t know that. One wonders why the pathologists on the study weren’t more insistent on expressing their misgivings.

Sadly, BMJ apparently didn’t have the courage of its convictions in publishing the Brian Deer article. It had to go and present some “balance” by publishing a companion editorial by Professor Sir Nicholas Wright of Barts and the London School of Medicine and Dentistry, Queen Mary University of London. As Sullivan points out, Sir Wright has testified as a character witness for Professor John Walker-Smith, one of the faculty who worked with Wakefield and came under the gaze of the GMC. His editorial, Does Autistic Enterocolitis Exist?, is a jumbled mess that doesn’t really define “autistic enterocolitis” and isn’t clear on whether Wright is examining the question of whether there is a form of enterocolitis unique (or nearly so) to autistic children or whether autistic children have higher rates of enterocolitis than children without autism. In both cases, the evidence leans more towards an answer of “no,” but Wright clings to the possibility that “autistic enterocolitis” exists as an identifiable entity while acknowledging that a recent consensus statement does not support the existence of “autistic enterocolitis.” Unfortunately, scientific journals can sometimes be as prone to the “tell both sides” technique that I complain about so much as any newspaper.

In the end, it’s not entirely clear to me whether Wakefield’s apparent “translation” of inflammation into colitis was due to incompetence, wishful thinking, or clear cut fraud. What is clear to me is that, whatever the reason, whatever forces led Andrew Wakefield to produce such a scientifically worthless and deceptive paper, this was a failure on many levels. It was a failure of Wakefield, but it was also a failure of the peer review system. The warning signs were there, but not heeded. An incompetent and possibly dishonest “researcher” (and I do use the term loosely) took advantage, and the results were disastrous.

Comments

  1. #1 Andrew Dodds
    April 16, 2010

    It’s a major problem in scientific research.

    If a researcher is setting out to commit fraud, it can only be systematically uncovered by a very detailed questioning of every bit of every paper. And to do so would be hugely time consuming for the reviewers. There has to be a level of trust that researchers are acting in good faith for the system to work.

    This is already a severe problem in medicine where drug companies are less than entirely keen for negative findings to come out, and very keen for positive results. To some extent it is also a problem in climatology, although luckily the would-be fraudsters are too incompetent to even get the fraud right..

  2. #2 cynic
    April 16, 2010

    Alleged fraud aside, how on Earth did Brian Deer obtain, presumably confidential, patient records?

  3. #3 bluemaxx
    April 16, 2010

    CYNIC;

    good question. Two easiest ways to access records for such a purpose are with consent of the patient/parent, or as part of a Quality review process, for which, commonly in the United States, permission is often granted within the copious text of the blanket permission forms signed at time of admission. As long as patient identifying data is obscured/removed from the information product, confidentiality is preserved.

    But.. that is only my guess. Best circumstance, the hospital Quality folks decided to take a second look a series of patients with a report of side effects/problems. I am less likely to believe this is a huge BigPharma conspiracy event… :-)

  4. #4 jameslawrence01
    April 16, 2010

    was there no mention of the PCR results in there- very disappointing. Here is the testimony from the autism omnibus from nick chadwick. the person who did the PCR that wakefield relied on.

    ftp://autism.uscfc.uscourts.gov/autism/cedillo/transcripts/day10.pdf

    (Via the relentlessly effective neurodiversity)

  5. #5 jameslawrence01
    April 16, 2010

    Oh for those who can’t be bothered to wade through it: He only found false positices, and he told andrew wakefield at the time, but was ignored.

  6. #6 jameslawrence01
    April 16, 2010

    positives
    just as well it’s quiet

  7. #7 a-non
    April 16, 2010

    Actually, this report by Deer truly illustrates that Andrew Wakefield had no earthly idea what he was talking about. Which is bad in and of itself, but not unprecendented.

    But, as often happens, the cover up is worse than the crime.

    If Wakefield had come out and said that he was wrong about the MMR, wrong about autistic enterocolitis, admitted that his initial paper was inadequate, he might still have a legitimate medical career.

    But now there’s no chance – he’s all-in with the autism quacks and anti-vax nuts, and really has no choice but to continue to try to justify his research. And even with Deer’s findings, he’ll continue to do so, and his cadre of true believers will lap it up as they always do, no matter how ridiculous it might be.

  8. #8 Todd W.
    April 16, 2010

    @a-non

    Of course they will lap up Wakefield’s bilge. Brian Deer, they will say, just has a personal vendetta against Wakefield. He’s biased, in the pocket of Big PharmaTM, arrogant, yadda yadda yadda. Lots of attacks on the person, but never a word will be said about the actual facts that Deer brings up.

  9. #9 Dangerous Bacon
    April 16, 2010

    As a pathologist who regularly makes diagnoses on gastrointestinal biopsy specimens, my opinion of went on in this case is similar to Orac’s – it stinks.

    It should be re-emphasized that the presence of inflammatory cells (such as lymphocytes and plasma cells) is a normal finding in the mucosa of the G.I. tract. Moreover, there’s considerable variation in the number of inflammatory cells in people without signs/symptoms of disease, so there’s a pretty wide range of “normal” microscopic findings. The presence of inflammatory cells does not mean that there’s inflammation. If that was true, everyone’s tonsils would be “inflamed”, since tonsils are naturally loaded with inflammatory cells as part of our immune system.

    It is considered very dubious in pathology to issue a diagnosis such as “mild chronic colitis” based simply on seeing what seems like an increase in chronic-type inflammatory cells on a biopsy, without also seeing evidence of mucosal injury.

    I don’t know exactly what the consultant histopathologists saw on review of the autistic children’s biopsies that led them to think there was “mild inflammation”, rendered as “nonspecific colitis” in the Wakefield paper. I do know that it is not unknown to have clinicians pressing pathologists to generate findings that would validate the clinicians’ medical/surgical judgment, to the point that reports of “normal” pathology may result in complaints. As an example, pathologists who receive a gallbladder removed from a patient for “cholecystitis” and issue a report of a normal-appearing organ can get backtalk from the surgeon. Did the pathologist(s) working with Wakefield face explicit or implied pressure to find something in those biopsies (that the original pathologists did not see) that would justify the project and result in a publishable paper?

    The only way to answer this would be to send the biopsy slides to an expert panel of G.I. pathologists to review (preferably blinded as to which slides came from autistic children) and come up with consensus diagnoses. Unfortunately the “disappearance” of the slides and blocks makes this impossible.

  10. #10 Journal Checker
    April 16, 2010

    @cynic – how did BD get the confidential data – it’s well covered, Eady the judge ordered the data be disclosed to the media defendants in the libel action by Wakefield – the action that Wakefield eventually dropped at major cost. AoA correspondents keep asking the same question and keep ignoring the explanation which they have complete access to.

    There may be issues to do with the use subsequently made of the personal data after it was disclosed – but there’s no sign that anyone directly connected with the data is taking action.

    Of course I willingly stand to be corrected if anyone has better or insider information.

  11. #11 a-non
    April 16, 2010

    @9:

    I do know that it is not unknown to have clinicians pressing pathologists to generate findings that would validate the clinicians’ medical/surgical judgment, to the point that reports of “normal” pathology may result in complaints. As an example, pathologists who receive a gallbladder removed from a patient for “cholecystitis” and issue a report of a normal-appearing organ can get backtalk from the surgeon.

    That may be a legitimate reason why Wakefield perhaps “pressured” pathologists into making the diagnosis of colitis – I’m sure he was smart enough to realize that ordering a dozen colonoscopies and not finding anything wrong in any of the children would not just be doom for his research but would bring up the ethical question of whether the scopes were appropriate in the first place.

  12. #12 Sir Eccles
    April 16, 2010

    Am I the only one who has suddenly thought this sounds just like the plot to The Fugitive, where’s the one armed man? Get me Harrison Ford on the phone right now!

  13. #13 sheldon101
    April 16, 2010

    Wakefield, Walker-Smith and Murch had to be unethical from the very start.

    They needed to find a mild form of inflammation that was unusual in the kids they performed colonoscopies on. They did not want kids who met the normal rules for having a colonoscopy — these kids might have Crohn’s or ulcerative colitis or a standard bowel disease. They needed kids with relatively normal bowels, kids that the ethics committee would never allow to have colonoscopies performed on them for research purposes alone.

  14. #14 T. Bruce McNeely
    April 16, 2010

    As a pathologist, I agree with Dangerous Bacon’s comment and would like to add that GI biopsies in children normally have greater lymphoid activity than those in adults. I imagine that someone with an agenda might unconsciously interpret this as “chronic inflammation”, when compared with a biopsy from an adult which we see far more often. It is very unusual for a pathologist in a general hospital to see a GI biopsy from a child.
    I also find it odd that slides from 1997 are “missing”. Our hospital keeps slides for at least 20 years. I would like to know the guidelines for retention of slides and blocks that Wakefield’s hospital normally followed.
    There’s also the matter raised by Wakefield of the original examining pathologists supposedly “missing” multiple diagnoses of colitis. They deserve an apology.

  15. #15 Journal Checker
    April 16, 2010

    There’s a new Press Release today on behalf of AJW – it’s at:

    http://health.groups.yahoo.com/group/thoughtfulhousecenterforchildren/message/16732

  16. #16 Dawn in Austin
    April 16, 2010

    Must admit I’m so relieved that Wakefield is finally spiraling. Since moving here, I’ve been alarmed that he continued his research at the infamous ‘Thoughtful House’ here in Austin Texas, calling it “therapy”, apparently without any real media/medical scrutiny.

    Back in 2006 I wanted my autistic son to be involved in a horse therapy program and called the number on the website I was reading. The person who answered turned out to be a ‘Thoughtful House’ rep who informed me that my 13 year old son would have to be “re-diagnosed” by their doctors before he could be involved in their horse therapy program. I asked what that would involve and after much passing-of-the-phone on their end I was told that my son would have to undergo — among other things — a colonoscopy! My response was something like “WTF?!”

    That’s when I decided to do a little research about these characters at ‘Thoughtful House’ and discovered who/what kind of unethical creature Wakefield really is. Needless to say I never let any of them near my son.

    BTW, I think Brian Deer is a real hero for uncovering the truth about Wakefield & ‘Thoughtful House’ and sticking with it despite being falsely disparaged by media puppets like Olbermann. Thanks Brian! :-)

  17. #17 Todd W.
    April 16, 2010

    @Dawn in Austin

    I was told that my son would have to undergo — among other things — a colonoscopy!

    What!? If they were regularly performing colonoscopies on kids that came to TH, my guess is that that violates standard of care. Are they still doing this? Has the state board of medicine been alerted?

  18. #18 Vicki
    April 16, 2010

    a-non @11:

    I take it this is some new definition of the word “legitimate.” In my book, pressuring people to fake lab results so people won’t catch your unethical treatment of children may be explicable, but it is far from legitimate.

  19. #19 Pablo
    April 16, 2010

    Call me stupid, but isn’t this why we have things called “control groups”? In this case, you take samples from 12 autistic kids and 12 random, non-autistic kids, and ask the pathologist if they can pick out samples from the autistic ones.

    If there is pattern, then you should be able to do better than 50/50.

  20. #20 MikeMa
    April 16, 2010

    I’ve looked at several UK blogs about this as well as Brian Deer’s page and the GMC’s site and cannot find when the hearing on St Andy’s fitness to practice will occur. Has a date been set? Has it already occurred and is awaiting a decision? Inquiring minds want to know…

    Will be nice when St Andy is relegated to history’s dustbin.

  21. #21 Journal Checker
    April 16, 2010

    Dr Andrew WAKEFIELD, Professor John WALKER-SMITH, Professor Simon MURCH

    From : 07 April 2010 To : 11 June 2010

    Category : Fitness to Practise Hearings

    Info :
    Dr Andrew WAKEFIELD
    Professor John WALKER-SMITH
    Professor Simon MURCH

    Fitness to Practise Panel

    Planned dates: 7 April – 11 June 2010
    This session is expected to last 46 days.

    Please note that Thursday 15 April 2010 is a non-sitting day.

    The Fitness to Practise Panel will meet at Regent’s Place, 350 Euston Road,
    London NW1 3JN, to continue its inquiry into three new cases of conduct.

    This case will be considered by a Fitness to Practise Panel applying the General Medical Council’s Preliminary Proceedings Committee and Professional Conduct Committee (Procedure) Rules 1988.

    Dr Andrew WAKEFIELD
    GMC Reference number: 2733564
    Professor John WALKER-SMITH GMC Reference number: 1700583
    Professor Simon MURCH
    GMC Reference number: 2540201

    At this stage of the hearing the Panel may hear separate submissions in respect of Dr Wakefield, Professor Walker-Smith and Professor Murch on the following two issues:

    a) Whether, in relation to the facts which have been admitted and/or found proved, the practitioner has been guilty of serious professional misconduct; and

    b) Were the practitioner to be found guilty of serious professional misconduct, what sanction should be imposed on that practitioner’s registration.

    For details of the Panel’s findings against Dr Wakefield, Professor Walker-Smith and Professor Murch, as announced in January 2010, please see the
    General Medical Council’s website: http://www.gmc-uk.org

    Please note that following the submissions the Panel will deliberate in private session.

    The GMC’s statutory purpose is to protect, promote and maintain the health and safety of the public by ensuring proper standards in the practice of medicine.

    We investigate complaints about individual doctors in order to establish whether their fitness to practise is impaired and whether to remove or restrict a doctor’s registration.

    The GMC does not regard its remit as extending to arbitrating between competing scientific theories generated in the course of medical research.

    We cannot guarantee that all those wishing to attend the hearing will be able to do so, as seating is limited. If you plan to attend the hearing please email the GMC press office press@gmc-uk.org. In the event that we have to allocate seats those people who have notified the press office will be seated before others.

    -Ends-

    For further information please contact the Media Relations Office on 020 7189 5454, out of hours 020 7189 5444, fax 020 7189 5401, email press@gmc-uk.org, website http://www.gmc-uk.org.

    The General Medical Council licenses doctors to practise medicine in the UK. Our purpose is summed up in the phrase: Regulating doctors, Ensuring Good Medical Practice.

    The law gives us four main functions:
    • keeping up-to-date registers of qualified doctors
    • fostering good medical practice
    • promoting high standards of medical education
    • dealing firmly and fairly with doctors whose fitness to practise is in doubt

    close

  22. #22 Dan Weber
    April 16, 2010

    the judge ordered the data be disclosed to the media defendants in the libel action by Wakefield

    Whoa, I hadn’t realized this. Trying to shut up Deer with the lawsuit was probably the worst thing Wakefield could have done.

    Own goal.

  23. #23 Journal Checker
    April 16, 2010

    Missing slides, missing files and altered records. This is a classic. Where’s the paper trail for handling and issuing of slides?

  24. #24 a-non
    April 16, 2010

    @17:

    Touche. I readily admit I shouldn’t have used the word “legitimate” when referring to Wakers.

  25. #25 T. Bruce McNeely
    April 16, 2010

    Missing slides, missing files and altered records. This is a classic. Where’s the paper trail for handling and issuing of slides?

    The usual procedure (in my experience) is that slides and tissue blocks are kept on file for a specified number of years, and then are discarded. The retention time is in the range of 20 to 25 years. If slides are taken out of file drawers (for review etc), the space is marked by a card or a foam block and a record is kept of when it was taken and who took it out. If the slides are lost, new ones can be cut from the tissue blocks without loss of abnormalities (except for the uncommon case of a very tiny abnormality).
    Of course, someone could always go to the file drawers and lift the slides and blocks without recording it. Not that I’m accusing anyone, just raising possibilities.
    If the slide and block retention time for the Royal Free was 10 years or less, then they’re long gone.

  26. #26 MikeMa
    April 16, 2010

    Journal Checker,
    Thank you for the VERY detailed record. The celebration is tentatively set for mid-June!

  27. #27 Journal Checker
    April 16, 2010

    Hmm. Maybe someone could ask Royal Free under FOI for their protocols.

  28. #28 Journal Checker
    April 16, 2010

    @25 – with the GMC and subsequent appeals? Don’t count your chickens until they’re hatched, plucked, gutted, stuffed, cooked and on a dinner plate in front of you!

  29. #29 DT
    April 16, 2010

    The possible reasons for subjecting these poor kids to invasive endoscopies and biopsies are vanishing by the minute.
    We were told they were clinically indicated, and the biopsy findings held up as justification. Now we know they were in essence normal, with the exception of a single child.

    The Wakefield paper specifies and documents that in not one single case did gastrointestinal symptoms preceed the neurological regression.
    In other words, the core hypothesis for Wakefield, that of colitis developing, then leading to autism, is undermined by his own data.

  30. #30 Prometheus
    April 16, 2010

    Pablo asks:

    “Call me stupid, but isn’t this why we have things called “control groups”? In this case, you take samples from 12 autistic kids and 12 random, non-autistic kids, and ask the pathologist if they can pick out samples from the autistic ones.”

    I won’t call you “stupid”, since it is a reasonable question. The answer is that it would be unethical to subject “normal” (i.e. healthy, no GI complaints) children to the risk of colonoscopy just to provide a control group.

    One of the (several) unethical behaviors that Wakefield et al are accused of is that they performed colonoscopy – a procedure that carries a known (and non-zero) risk of injury – on children who did not have a legitimate medical indication for the procedure (autism is not recognised as an indication for colonoscopy except by a “select group” of practitioners, some of who will be appearing before the GMC this month). To do the same on children without any medical problems would be even more unethical.

    For JamesLawrence (comments 4 – 6), the reason that PCR was not mentioned is that the 1998 Wakefield et al study didn’t use PCR. If I remember correctly, the 1998 study said nothing about measles virus at all.

    Prometheus

  31. #31 Journal Checker
    April 16, 2010

    Prometheus: “… autism is not recognised as an indication for colonoscopy except by a “select group” of practitioners, some of who will be appearing before the GMC this month.”

    Do you mean a different group – not AJW et al?

  32. #32 Sullivan
    April 16, 2010

    Journal Checker,

    I think there is only one group appearing before the GMC this month who did colonoscopies on autistic children.

  33. #33 Prometheus
    April 16, 2010

    Journal Checker,

    No, I was referring to Wakefield et al. I wanted to make it clear that not all of the “select group” that thinks the diagnosis and evaluation of autism requires a colonoscopy is appearing before the GMC, but obviously I wasn’t as clear as I’d hoped.

    The sad fact is that there are still practitioners in the US – and probably also in the UK – performing colonoscopies on autistic children without legitimate medical indication and that they have not yet been brought to justice.

    We can only hope this oversight will soon be rectified.

    Prometheus

  34. #34 Phoenix Woman
    April 16, 2010

    By the way, Dana Blankenhorn’s fighting the good fight — and lo and behold, the anti-vaxers aren’t swarming his thread (yet). Sane and learned people predominate: http://www.smartplanet.com/technology/blog/rethinking-healthcare/is-there-really-an-autism-epidemic/1018/?tag=content;col1#comments

  35. #35 Calli Arcale
    April 16, 2010

    Just to add to what Prometheus said @ 30:

    One of the (several) unethical behaviors that Wakefield et al are accused of is that they performed colonoscopy – a procedure that carries a known (and non-zero) risk of injury

    Case in point for the non-zero risk of injury: I had heard that one of the children in the study had his bowel perforated in twelve places by the gastroenterologist, who was apparently not only unethical but incompetent as well. The boy wound up confined to the ICU for quite some time, and I believe he required a bowel resection as well. That’s pretty damn serious just for a control group. I’m positive Orac wrote on it; I’ll find the post in a minute.

  36. #36 Calli Arcale
    April 16, 2010

    Found it. Okay, I think this wasn’t one of the children in the study, but a child that Wakefield was treating based on the “results” of his study, performing colonoscopy to diagnose autistic enterocolitis. This will probably give Dawn in Austin some shudders, as this is basically the protocol Thoughtful House was recommending for her son. It’s pretty damning, in my opinion; one of the more disturbing elements is that the parents were apparently not informed that bowel perforation is a known (though rare) risk of colonoscopy. Staggering to think of it happening so extensively in a single procedure, but they should still have been informed of the possibility. That they weren’t is as damning toward Wakefield’s clinical practice as the Lancet scandal is towards his science.

    An autistic child pays the price for Andrew Wakefield’s antivaccination “research”

  37. #37 Sophia
    April 17, 2010

    Ehhhh, I can’t belive that this twatwaffle managed to make a name for himself in the US. Maybe I’m just inattentive (and only have my own health to worry about), but here it seemed to be used as a stick to bash the then prime-minister with (Tony Blair)- he wouldn’t say whether his kid had had the MMR jab, or had single jabs or nothing, and the Daily Heil*, sorry, I meant Mail, just went on and on about how it was some big conspiracy and that the establishment was out to get Wakefield etc etc. Turns out the Leo Blair had the triple jab, and the Heil not only dropped Wakefield but actually tried to blame him solely for the vaccine furore, as though somehow he’d written all their articles and headlines for them. Well, they’ve switched sides, which is something, although the damage has been done and vaccine uptake has dropped.

    What I’m trying to say (very badly, lol, sorry) is that I thought Wakefield and his horseshit was a UK problem. That he’s made a dent in the US is just depressing. In which case, I suppose I’d best warn you that there’s another Woo merchant coming your way from our little island: Gillian McKeith. She’s not an anti-vaxxer (that I know of), but she’s into all that nutriwoo, and what’s more, she looks at your poo. She then makes comments about your poo. And then claims to be able to tell which organs are doing what, just by looking at it. To be honest, it has to be seen to be believed.

    youtube clicky

    Oh, and she used to call herself Dr, but had to stop when she got taken to court for doing so without actually being a proper Dr…

    * there were others but this paper was his chief cheerleader in the press

  38. #38 Marge
    April 17, 2010

    “I find it curious indeed that none of the slides from the original 12 “Wakefield children” is available for re-review by expert pathologists.”

    It is possible that this is not fishy – the Alder Hey organ retention scandal (http://en.wikipedia.org/wiki/Alder_Hey_organs_scandal) came to light in 1999, a year after the publication of the paper. A hell of a lot of pathology departments got very twitchy in the aftermath of this report and threw out a lot of stuff that might possibly be construed as being improper, especially if it came from children. Those slides could well have been part of a general clearout, rather than anything related to the specifics of the research.

  39. #39 Brian Deer
    April 17, 2010

    To keep you all up with the news, Wakefield has posted his response to my BMJ report. You can read it at my site:

    http://briandeer.com/solved/bmj-response.pdf

    I won’t underestimate your intelligence by pointing out the things that are missing from this response. Plainly, the “non-specific colitis” diagnosis was Wakefield’s. My report references both the most directly authoritative sources on this subject, and also a beginner’s guide to histopathology.

    A pdf of my report is here:

    http://briandeer.com/solved/bmj-pathology.pdf

    Generally with this man, it’s pointless to engage in online exchanges that go beyond things that people can check for themselves. I think it’s important – particularly to assist anti-vax crusaders who fawn over him with the greatest familiarity, such as JB Handley, Marx Blaxill, Polly Tommey, David Kirby, Dan Olmsted and Arthur Krigsman – that they can go to material and evaluate it with their own eyes and brains. Then, perhaps, they can examine their consciences and question Wakefield on these matters in person.

    Thus, I draw attention to the most direct allegation against me, in the headline of his response:

    “Journalist Brian Deer’s Allegations about Dr. Andrew Wakefield fails to disclose press complaint”

    Anybody can go to my report and see not only that this complaint (which was suspended on February 10 at Wakefield’s request, following my pressure for it to be heard) is disclosed, but that it’s twice directly referred to in the text, quoted from, referenced in the footnotes and, in the online version, linked to by the BMJ.

    Nevertheless, you can be sure that this outrageously, evidently calculated, falsehood of Wakefield’s will be taken up by those less privy to the inner workings of the MMR-autism fraud, so as to inflame them, and upset their lives.

    This is no accident: and it’s the same pattern of behaviour I’ve encountered from him since he first deceitfully claimed, in 2004, that he had no conflict of interest. He was secretly being paid £150 an hour to back a lawsuit, which would have collapsed before it even started if he (retained expert for the claimants) had failed to state – when asked – that MMR was unfit for marketing. And on it went: nothing was retracted since there was no interpretation… no measles vaccine patent… gave his money to the Royal Free… Lancet paper wasn’t about MMR… results weren’t changed… the dog ate his homework…

    You can only get so many words on a page. Thus, my BMJ piece was hugely compressed from the full extent of the material I hold – and certainly covering ground it would be technically impossible to set out in The Sunday Times, or any general media. I could spend hours on the pathology questions: how the “controls” were manipulated and misrepresented, how Dhillon repudiated Wakefield in the journal Histopathology, and so forth…

    But, unless you’re a histopathologist (in which case you’ll probably be rolling around on the floor already), it only generates more of the same.

  40. #40 Akasha
    April 17, 2010

    “They needed kids with relatively normal bowels, kids that the ethics committee would never allow to have colonoscopies performed on them for research purposes alone.”

    But why would Josh Edwards have been fitted with a terminal ileostomy bag if his bowel was “relatively normal”?

    http://www.rescuepost.com/files/josh-pdf-1.pdf

    Don’t take my word for it – look at the photo.

  41. #41 Akasha
    April 17, 2010

    p.s. Quotation – http://www.rescuepost.com/files/josh-pdf-1.pdf:

    “After many more clearings for impaction, a medical consultant recommended removal of Josh’s large colon. But the surgeon only approved removal of the sigmoid colon. Josh now had a bowel bag…”

  42. #42 Brian Deer
    April 17, 2010

    Akasha,

    Thank you for bringing up the case of Josh Edwards. The exploitation of this boy is perhaps the most tangible deceit by the anti-vaxers. However much compassion one must feel for his mother, Heather Edwards, her personal conduct has been sickening.

    Josh was NOT included in the Wakefield study, and had nothing whatsoever to do with it. Rather, his mother, turned up outside the GMC hearing, in effect pretending to have something to do with the proceedings. Those less charitable than myself might see her as a kind of itinerant loon, who turned up in the hope of getting on television. I try to be more compassionate, and would say that she was overwrought and confused about what was going on, and most likely had been wilfully misled by others.

    In fact, what she was able to get on was a malicious hate video cobbled together by an amateur video enthusiast, in which it was made to appear that Josh was one of the children in question.

    I took the trouble to stop and debate these people on the street. I suggested that people should come in and follow the proceedings, and, in doing so, discover that the Lancet children were not found to have inflammatory bowel disease in the study.

    This enabled the malicious haters, who live to cause distress to others, to make it appear that I was saying that Josh didn’t have bowel disease. Absurd, dishonest and truly malevolent conduct. Just a wicked deceit, intended to fool people like you.

    Here is a report from The Sun on Josh Edwards:

    http://www.thesun.co.uk/sol/homepage/woman/health/health/article2206280.ece

    So you see? This is how it goes. A lie is spun, perhaps out of a certain amount of innocence, ignorance, call it what you will, exploited by people who are steeped in hatred and malice, and then peddled around the web to cause as much distress as can be provoked.

    So, Akasha, I’ve taken the time to address your point. What do you say to this?

  43. #43 Science Mom
    April 17, 2010

    @Akasha, What does Josh have to do with Wakefield’s fudging of his results? Do you understand that ASD children can still have co-morbidities? Since when is ‘impaction’ colitis? I know this is AoA’s latest poster child and frankly, it’s pretty sick how you and they are exploiting him.

  44. #44 Seb30
    April 17, 2010

    @Akasha 40/41

    Nice appeal to emotion. This document of yours was sickening.
    The best part being the ad at the bottom from an insurance company who specialize in parents of disabled children. No, no-one is using this poor boy to make money, only vaccine-pushers do so (sarcasm).

    Let’s stick to the scientific facts, in the future, will you?

  45. #45 T. Bruce McNeely
    April 17, 2010

    Marge:
    The controversy that you refer to had to do with retention of whole organs. Tissue blocks and slides contain only small samples of tissue. It is standard policy in all accredited histopathology labs to retain them for a specified number of years, and no one has raised a problem with this.

  46. #46 Akasha
    April 17, 2010

    “However much compassion one must feel for his mother, Heather Edwards, her personal conduct has been sickening.”

    What aspect of her personal conduct has sickened you?

    “Josh was NOT included in the Wakefield study, and had nothing whatsoever to do with it. Rather, his mother, turned up outside the GMC hearing, in effect pretending to have something to do with the proceedings.”

    Are you sure that’s what she was pretending? Maybe she was going there to support Wakefield?

    “Those less charitable than myself might see her as a kind of itinerant loon, who turned up in the hope of getting on television.”

    I dunno… If you’re having to look after a grown teenager who still soils himself around the clock, I would imagine ‘getting on television’ would be the last of your priorities. But who knows?

    “In fact, what she was able to get on was a malicious hate video cobbled together by an amateur video enthusiast, in which it was made to appear that Josh was one of the children in question.”

    Why would she make a malicious hate video? Did she actually wrongly state Josh was one of the Lancet children?

    “This enabled the malicious haters, who live to cause distress to others, to make it appear that I was saying that Josh didn’t have bowel disease. Absurd, dishonest and truly malevolent conduct. Just a wicked deceit, intended to fool people like you.”

    Hmmm…. sorry, who are the ‘malicious haters’ to whom you refer? Do you have a link?

    “Here is a report from The Sun on Josh Edwards:

    http://www.thesun.co.uk/sol/homepage/woman/health/health/article2206280.ece

    So you see? This is how it goes. A lie is spun, perhaps out of a certain amount of innocence, ignorance, call it what you will, exploited by people who are steeped in hatred and malice, and then peddled around the web to cause as much distress as can be provoked.”

    I don’t understand your point here at all. Are you saying she was lying in the sun article?

    “Akasha, What does Josh have to do with Wakefield’s fudging of his results?”

    I included the quotation to which I was responding in post 40, SM.

    “Nice appeal to emotion. This document of yours was sickening.”

    What’s wrong with emotion? What sickened you about the document?

    “The best part being the ad at the bottom from an insurance company who specialize in parents of disabled children. No, no-one is using this poor boy to make money, only vaccine-pushers do so (sarcasm).”

    I believe you’re appealing to emotion (which I think is fine, but you object to). Nice bit of conspiracy theory thrown in to boot.

    “Let’s stick to the scientific facts, in the future, will you?”

    I have. This whole blog entry is about the medical state of Wakefield’s patients. I’ve referred to the medical state of one of Wakefield’s patients. Are you suggesting the article was in factual error?

  47. #47 Visitor
    April 17, 2010

    “This whole blog entry is about the medical state of Wakefield’s patients. I’ve referred to the medical state of one of Wakefield’s patients.”

    Akasha,

    I fear you aren’t getting it. Josh Edwards was not one of Wakefield’s patients. The connection has been made up.

    Comprende?

  48. #48 Science Mom
    April 17, 2010

    “Akasha, What does Josh have to do with Wakefield’s fudging of his results?”

    I included the quotation to which I was responding in post 40, SM.

    The topic is how Wakefield grossly misrepresented the GI results of the Lancet children. So again I ask, what does Josh have to do with this?

    Again, your exploitation of this boy is revolting and he doesn’t have ‘autistic enterocolitis’, which, I believe, you are trying to portray.

  49. #49 Akasha
    April 17, 2010

    “I fear you aren’t getting it. Josh Edwards was not one of Wakefield’s patients. The connection has been made up.

    Comprende?”

    Your tone warms my heart. So you’re agreeing at least that *Josh* has both bowel disease and autism?

    “Again, your exploitation of this boy is revolting and he doesn’t have ‘autistic enterocolitis’, which, I believe, you are trying to portray.”

    What *does* he have, according to SM? Just autism and severe bowel disease?

    How does printing a linkn to an article about Josh constitute exploiting him?

  50. #50 Joseph
    April 17, 2010

    This whole blog entry is about the medical state of Wakefield’s patients. I’ve referred to the medical state of one of Wakefield’s patients.

    Did anyone else catch the equivocation fallacy?

  51. #51 Joseph
    April 17, 2010

    So you’re agreeing at least that *Josh* has both bowel disease and autism?

    I think we can all easily agree to that. Your point, Akasha?

  52. #52 Akasha
    April 17, 2010

    Well… for one, how is Science Mom distinguishing between the combination of autism and severe bowel disorder, and “autistic enterocolitis”, for a start?

  53. #53 Science Mom
    April 17, 2010

    “I fear you aren’t getting it. Josh Edwards was not one of Wakefield’s patients. The connection has been made up.

    Comprende?”

    Your tone warms my heart. So you’re agreeing at least that *Josh* has both bowel disease and autism?

    You are being very disingenuous. You are implying that Josh was one of Wakefield’s patients, he was not. It would be highly unusual for autistic children to NOT have co-morbidities such as a bowel disorder, NT children have them too and at the same rates as ASD children.

    “Again, your exploitation of this boy is revolting and he doesn’t have ‘autistic enterocolitis’, which, I believe, you are trying to portray.”

    What *does* he have, according to SM? Just autism and severe bowel disease?

    According to the Sun article and the Josh-ploitation article by his mother, there was no mention of colitis. So yes, a severe bowel disease. Do you honestly think that because an ASD child has a bowel disease/disorder that that somehow exonerates Wakefield? Try again, there were many more problems with his so-called findings that he lied about as well.

    How does printing a linkn to an article about Josh constitute exploiting him?

    Cut the coy act. Mother transposing words and thoughts from Josh? Ghoulish pictures? Wailing over Wakefield’s purely self-inflicted woes? Josh is a child that can’t consent to what she is doing and she is taking advantage of a special needs child to promote her own agenda and you are facilitating that. She has it plastered all over AoA and elsewhere and it is positively disgusting behaviour on yours and her part. No one should be shocked though, that is what your type does.

  54. #54 akasha
    April 17, 2010


    You are being very disingenuous. You are implying that Josh was one of Wakefield’s patients, he was not.”

    Am I heck.

    “It would be highly unusual for autistic children to NOT have co-morbidities such as a bowel disorder”.

    And why is that?

    “According to the Sun article and the Josh-ploitation article by his mother, there was no mention of colitis. So yes, a severe bowel disease. Do you honestly think that because an ASD child has a bowel disease/disorder that that somehow exonerates Wakefield?”

    Total strawman.

    “Cut the coy act. Mother transposing words and thoughts from Josh? Ghoulish pictures? Wailing over Wakefield’s purely self-inflicted woes? Josh is a child that can’t consent to what she is doing and she is taking advantage of a special needs child to promote her own agenda and you are facilitating that.”

    “Ghoulish pictures”?
    She’s *taking advantage* of him? To what end? What “agenda” is it that she and you both know about?

    “She has it plastered all over AoA and elsewhere and it is positively disgusting behaviour on yours and her part. No one should be shocked though, that is what your type does.”

    My type? Wow. What is “my type”?

  55. #55 Calli Arcale
    April 17, 2010

    Besides, from the perspective of Wakefield’s research, Josh’s case is irrelevant. If he were one of the patients in the study, it might be relevant, but he’s not. The patients in the study, whom Wakefield claimed all had “nonspecific colitis” mostly had normal bowels. That’s fraud, no matter how you dice it.

    It is horrible that this boy, Josh, has had to go through what he’s endured, but it really isn’t relevant. Lots of people have horrible things happen to them, and some of them happen to also be autistic. It doesn’t change the fact that Wakefield fudged data to create evidence of a nonexistent condition (autistic entercolitis), and that many children have suffered as a direct result who did not need to suffer.

    Josh’s case is sad — but what about Jack Piper? There’s a story of an autistic boy who *was* a patient of Wakefield, and who did suffer severe damage to his colon. Read it.

  56. #56 Visitor
    April 17, 2010

    Akasha,

    Why don’t you just say: “Oh, I’m sorry. I misunderstood. I thought that Josh was one of Dr Wakefield’s patients in the study Brian Deer was writing about in the BMJ.”

    Then maybe you could go back to wherever you got this information and discuss it with them. That way, knowledge advances. People exchange information. Life goes on.

    You were plainly misled, and rather than try to get things straight, you get into all this other stuff.

    Are you infallible or something? Do you have an image to maintain? Or what is it that’s going on with you here?

  57. #57 Akasha
    April 17, 2010

    Thankyou, Calli.

    The Lancet parents objected that the Royal Free team were the only ones to perform full clinical investigation, and that the top pediatric gastroenterologist confirmed that “this was a new bowel disease”.

    The GMC didn’t allow the lancet children into the hearing, let alone re-examine them.

    “The essential clinical findings remain unchallenged as far as their accuracy is concerned”. – Dr Horton, Lancet, 2006

  58. #58 Joseph
    April 17, 2010

    Well… for one, how is Science Mom distinguishing between the combination of autism and severe bowel disorder, and “autistic enterocolitis”, for a start?

    You really don’t understand the difference, Akasha?

    Let me try to explain with an example. Suppose an autistic child develops a chronic condition, say, eczema. Then I go and declare I’ve discovered a new clinical entity called “autistic eczema.” Is that reasonable or unreasonable?

  59. #59 Brian Deer
    April 17, 2010

    Akasha: For the sake of argument, I will take it on trust that you are a decent person expressing your genuine views about the facts. Therefore, I’ll deal with the next thing you have raised: the idea that parents weren’t allowed to take part in the GMC hearing (You say children, but I don’t think you mean that.)

    GMC proceedings are aversarial: like the courts. This is the foundation of justice in the common law area. Thus, either side – prosecution or defence – can call witnesses.

    The prosecution called one parent of the 12, and she gave very detailed evidence. The defence called none. This was their choice, and nothing to do with the GMC.

    Andrew Wakefield called no witnesses whatsoever. No expert, no eyewitness to what happened at the hospital. No parent. Nobody.

    Again, in a campaign of rank deceit, people like you have been told that the GMC wouldn’t allow parents to take part. That is just an outright lie, fabricated by someone who was paid by anti-vax interests in the United States to sit through the hearing, so as to produce fake reports of what happened.

    Why, if people care about autism, or vaccination policy, or child health, anybody would orchestrate such a barrage of deceit is quite beyond me.

    But, if you know any lawyer, or generally educated person who knows about public affairs, they will surely be able to explain to you the adversarial process, and why it is the fairest route to justice.

    If you were courteous and approached the thing in the right way, the GMC might itself explain to you its procedures and answer any questions you may have.

    But, please, don’t just cut and paste bits of rumour you find on anti-vax websites. Unlike, for example, my very extensively peer-reviewed report in the BMJ, they are contrived without the slightest regard to truth or decency towards others.

    In short, if you aren’t a conner, then you’ve been conned.

  60. #60 T. Bruce McNeely
    April 17, 2010

    The GMC didn’t allow the lancet children into the hearing,

    Why should they do that?

    let alone re-examine them.

    Oh good, more colonoscopies!

  61. #61 Science Mom
    April 17, 2010

    “You are being very disingenuous. You are implying that Josh was one of Wakefield’s patients, he was not.”

    Am I heck.

    You most certainly are, see post #46, you stated, “This whole blog entry is about the medical state of Wakefield’s patients. I’ve referred to the medical state of one of Wakefield’s patients.” He isn’t now is he?

    “It would be highly unusual for autistic children to NOT have co-morbidities such as a bowel disorder”.

    And why is that?

    Because the ASD population is still part of a larger population that experiences clinical diseases and disorders. It would be rather remarkable if ASD children didn’t experience them now wouldn’t it? What we look for is if there are significant differences between ASD children and NT children and morbidities and as far as GI pathologies, there aren’t any, nor are there any novel pathologies, such as Wakefield suggested.

    “According to the Sun article and the Josh-ploitation article by his mother, there was no mention of colitis. So yes, a severe bowel disease. Do you honestly think that because an ASD child has a bowel disease/disorder that that somehow exonerates Wakefield?”

    Total strawman.

    If you are going to accuse someone of an argument fallacy, you may want to actually know what that fallacy means. You asked, “What *does* he have, according to SM? Just autism and severe bowel disease?” I answered. He was never diagnosed with colitis, so what does that have to do with Wakefield and his phoney diagnoses for the Lancet paper?

    She’s *taking advantage* of him? To what end? What “agenda” is it that she and you both know about?

    Of course she is taking advantage of him; another ‘mummy martyr’ who wants to blame vaccines. Can Josh consent to what his mother is doing? Do you think he would really appreciate pictures of his colostomy bag and near-naked pictures plastered all over the internet? I’m sure you think you can justify this, but you really can’t. All children deserve respect and a right to privacy by their parents. You can tell their ‘story’ without exploiting them, but it isn’t as emotionally-charged, now is it?

    My type? Wow. What is “my type”?

    The parents who think nothing of exploiting their children for their own gain.

  62. #62 Nick
    April 17, 2010

    Akasha doesn’t care, brian. She has made it painfully clear in the past several responses that when a argument that overturns her petty talking points comes about- she either makes asinine comments or moves on to the next set of irrelevant talking point.

    Why is this case relevant, Akasha? The kid wasn’t involved in the Wakefield trial and there is nothing to suggest that his horrific bowel syndrome and autism (despite your intellectually dishonest attempts to interlink the two) are related at all.

  63. #63 Prometheus
    April 17, 2010

    Akasha comments:

    “So you’re agreeing at least that *Josh* has both bowel disease and autism?”

    Does that seem hard to imagine? Would it be so odd – given that about 6% of all children (according to one study, the range I’ve seen is from 4% to 11%) have “bowel disease” of one kind or another, with chronic constipation being the most common – that many autistic children also have “bowel disease”?

    A few limited studies suggest that the rate of “bowel complaints” (primarily chronic constipation) is higher in children with developmental delay, although there are problems with sampling in the studies I’ve seen.

    What would be unusual is if autistic children didn’t ever have “bowel disease”. Or if they had it less often than other developmentally delayed children.

    So far, nobody has shown – with data, not “anecdotes” and “in my opinion” statements – that autistic children have more bowel complaints or different bowel complaints than other groups of developmentally delayed children. Sure, a number of people say it, but nobody has data that support their claims.

    So, what we have left is that the 1998 Wakefield et al study ignored the evaluation of the hospital pathologist in favor of a pathologist on their research team (who knew what Dr. Wakefield wanted to find) and then quietly substituted “colitis” for “inflammation”, even though the two terms – in the world of bowel pathology – are not interchangeable.

    At best, this paints Dr. Wakefield and his colleagues as bumbling neophytes in the field of medical research. They should have known that having a member of their research team over-ride the hospital pathologist’s assessment without a compelling reason would be seen as “fiddling with the data” (because it is!). They should have known that inflammatory cells were an expected finding in pediatric bowel biopsies and they should have known that “inflammation” does not equal “colitis”, even in the colon.

    Another, less favorable interpretation of these actions is that they represent a deliberate attempt to falsify the findings of the study. Only time will tell which interpretation is correct, but neither are flattering to Dr. Wakefield and his colleagues.

    Prometheus

  64. #64 Chris
    April 17, 2010

    In addition to his severe developmental disorder, my son also has a very severe heart condition. Using Akasha’s logic, every child who has a developmental disorder should have regular echo-cardiograms to check for heart disorders.

    Of course echo-cardiograms are less invasive than colonoscopies.

    (as an aside, a certain number of children die each year from undiagnosed heart problems, especially young athletes — there have been arguments that echo-cardiograms be performed on all adolescents before they go into sports, but the costs for that can be prohibitive)

  65. #65 Omri
    April 17, 2010

    A hell of a lot of pathology departments got very twitchy in the aftermath of this report and threw out a lot of stuff that might possibly be construed as being improper, especially if it came from children. Those slides could well have been part of a general clearout, rather than anything related to the specifics of the research.

    In the United States, that would be a felony.

  66. #66 Calli Arcale
    April 17, 2010

    Akasha:

    Thankyou, Calli.

    You’re welcome — but did you read the link I provided, about Jack Piper? I don’t think you did, because it’s such a painful story, it would be hard to read it and not comment. It’s also probably not what you think.

    If you want to know how Wakefield was connected to one autistic boy’s bowel problems, read about Jack Piper. Seriously. It will shock you.

  67. #67 David N. Brown
    April 18, 2010

    “I find it curious indeed that none of the slides from the original 12 “Wakefield children” is available for re-review by expert pathologists. It stinks. It stinks to high heaven.”

    Something I looked up after it popped to mind:
    http://s0.ilike.com/play#Loudon+Wainwright+III:Dead+Skunk:146609:s1569142.8166541.3708942.0.1.75%2Cstd_79bd1a31f4b2c7dfd717c298be731c4f

    “Dead study in the middle of the road…”

  68. #68 skepacabra
    April 18, 2010

    Great panel talk today at NECSS today, Orac. And it was great to finally get to talk to you in person.

  69. #69 JCmacc
    April 18, 2010

    Just to support Madge’s position: I’m a UK-based researcher and recognise what she says. Post Alder-Hay scandal new law was being drafted which eventually became the Human Tissue Act of 2004, making the previous version of the 1960’s far, far stricter. Before the final version became law, early drafts would have made almost any sample retention problematic (it was unworkable which is why it was revised) and this was happening in a climate of press hysteria and increasing interest from legal firms looking for parents they could use in money-chasing acions where samples from children had been retained without clear consent.

    Lots of people became paranoid about any samples, including immortalized cells in culture, fixed tissue on slides etc as it was obvious far more detail of patient consent was required but couldn’t be retrospectively obtained. All these sample types were in scope of the early drafts of the 2004 Act. It would have made cancer research impossible as the early drafts included human cells in culture, even to the point of requiring patient consent every time the cells were passaged in culture. Luckily, the final draft was considerably more sensible.

    None of the above is a defence of Wakeield, just that the lack of samples is something you’ll find in other cases of the time, so that particular issue isn’t as much of a smoking gun as it would seem. The rest of what Wakefield did is obvious and indefensible – it doesn’t require conspiracy theory.

  70. #70 JCmacc
    April 18, 2010

    Just to support Madge’s position: I’m a UK-based researcher and recognise what she says. Post Alder-Hay scandal new law was being drafted which eventually became the Human Tissue Act of 2004, making the previous version of the 1960’s far, far stricter. Before the final version became law, early drafts would have made almost any sample retention problematic (it was unworkable which is why it was revised) and this was happening in a climate of press hysteria and increasing interest from legal firms looking for parents they could use in money-chasing acions where samples from children had been retained without clear consent.

    Lots of people became paranoid about any samples, including immortalized cells in culture, fixed tissue on slides etc as it was obvious far more detail of patient consent was required but couldn’t be retrospectively obtained. All these sample types were in scope of the early drafts of the 2004 Act. It would have made cancer research impossible as the early drafts included human cells in culture, even to the point of requiring patient consent every time the cells were passaged in culture. Luckily, the final draft was considerably more sensible.

    None of the above is a defence of Wakeield, just that the lack of samples is something you’ll find in other cases of the time, so that particular issue isn’t as much of a smoking gun as it would seem. The rest of what Wakefield did is obvious and indefensible – it doesn’t require conspiracy theory.

  71. #71 JCmacc
    April 18, 2010

    Apologies for the double post

  72. #72 Journal Checker
    April 18, 2010

    But this was an extant research study supposedly (maybe case review), under serious overview, with no informed consent problems, so the researchers said. Background material and samples should have been put into quarantine in my opinion until all questions answered.

    As said before, an FOI may elicit information about these samples and contemporary ones.

    By the way – what do hamsters have to do with Max Clifford and Andrew Wakefield?

    “DrWakefield
    And who’s this Max Clifford guy they’re getting themsleves in a hissy fit about? Somethin’ to do with hamsters rings a bell….” from AJW’s Twitter.

    I can’t work out what the pun is – it’s been a bad day – sorry.

    Is Max Clifford representing AJW or not? Does anyone know? Or is AJW being represented
    by a hamster instead? Less likely to ask awkward questions.

  73. #73 Dedj
    April 18, 2010

    Freddie Starr was alledged to have eaten someone’s hamster in the 1980’s. Max Clifford was involved in promoting the story at some point.

    13th March 1986 in The Sun, apparently.

    So, Freddie Starr and Grand Theft Auto both benefited from Max Clifford promoting sensational stories about them. Now, he might be working for Wakefield.

  74. #74 Journal Checker
    April 18, 2010

    Ah. What a burk I am not to remember the Freddie Ate My Hamster story – I’m not a Red Top reader though so it’s not deeply imprinted in my memory.

    But back to the point, you’re saying that just as Max Clifford helped Freddie Starr promote a wholly false eating a hamster story, then he might be helping (if confirmed) AJW promote a “wholly false” “Brian Deer is a Big Pharma PR agent” story?

    Does eating hamsters help cure or aggravate autism BTW?

  75. #75 Journal Checker
    April 18, 2010

    http://www.ageofautism.com/2010/04/brian-deer-in-bmj-and-dr-andrew-wakefields-response.html

    Have you seen the appalling fascist and threatening comments posted on the AoA site by Media Scholar (sic) and Sylvia, which presumably John Stone has ‘moderated’ onto the site – or failed to exercise due diligence by keeping them off.

    If I were Brian Deer I would be demanding they be removed and taking it up with the AoA ISP.

    There’s a hugely unpleasant element lurking behind the anti-vax front line – what motivates them? Always it is said – follow the money – they say Big Pharma backs everything they disagree with – but anti-vax have money interests too. Just look at the sponsors and advertisers.

    I will come back to John Stone in due course. I say he’s lost any personal privacy defence argument by failing to edit out these appalling posts.

    Why don’t they just argue against what Brian Deer publishes? If he’s so bad at what he does that should be easy.

    The fact that they don’t always just do that but make these appalling personal attacks suggests they don’t have the evidence.

  76. #76 MikeMa
    April 19, 2010

    Journal Checker
    The AoA jokers live in an echo chamber. No dissenting opinion is ever allowed. As a result the bounds of truth, evidence, fairness and critical thinking are all laid waste.

    Several morons want to know why a ‘hack’ like Deer gets to contribute to a medical journal. The fact that logic and reading comprehension are enough to investigate a medical issue seems to completely escape their orbit. They can’t understand the science so they feel that everyone else must be like them. Their threats are as empty as their heads.

  77. #77 Todd W.
    April 19, 2010

    @Journal Checker

    As MikeMa said, AoA has a double standard. Dissenting opinions get booted, but almost anything goes for supporters. There are numerous posts by their regulars that violate the commenting policy, yet on-topic, respectful posts that disagree with the party line do not make it past moderation. Try too many of such posts, and you find yourself banned from commenting altogether. For all that they clamor about censorship, they seem to like it well enough when they can do it to others.

    It’s for that reason that I created Silenced by Age of Autism, so that people who try to comment at AoA, but find themselves censored, can still have their comments see the light of day. And before me, Kim Wombles created Countering Age of Autism for similar reasons. There is also Age of Ignorance blog that has similar origins.

    That leads to not only a dearth of intellectual honesty and open debate, but outright lies being published without the chance for people to correct them. For example, Jake Crosby posted an article a couple weeks back that had, if not lies, blatantly false statements. I posted a correction and copied it over at Silenced. Similarly, Rene Najera had one of his comments here copied over at AoA, taken out of context and casting him in a negative light, but he was not able to correct the matter, except by posting at Silenced.

    The atmosphere to expect at AoA is one of “If you’re not with us, you’re against us. End of story.”

  78. #78 David N. Brown
    April 19, 2010

    My take on AoA:
    What I find especially ironic is that, in US jurisdictions, all they would have to do to head off a libel lawsuit is POST A CORRECTION. In my case, I recently warned them that not posting comments from me responding to a complaint of theirs would be grounds for me to sue (if I could afford a lawyer). They not only refused, but posted a new article making the same claim that my censored comments had corrected. If they keep this up, they will be sued, and I doubt whether they could even cover the court costs without direct assistance from “sponsors”. Said sponsors might be less than enthusiastic about bailing them out of a situation created by their policies.

  79. #79 DebinOz
    April 19, 2010

    OT, but apparently John Best has finally had his poor child taken from him. No more chelation therapy for this boy.

    http://hatingautism.blogspot.com/?zx=cd363371443a4c4c

  80. #80 Todd W.
    April 19, 2010

    He is a very disturbed, angry man. I fear for anyone near him.

  81. #81 Broken Link
    April 20, 2010

    In other entertaining activity on the anti-vax sites:

    On AoA someone posted a link to an old (2006) Daily Mail article on Steve Walker’s work which supposedly found measles virus in the guts of autistic kids. Some of you may remember this – it was in an abstract at a conference, and the entire study has never been published, indicating that likely something was wrong, very wrong there.

    Well, this Daily Mail article happened to have a recent date appended to the top, and the anti-vaxers assumed it was recent work vindicating AW. So, despite the fact that all the comments were dated 2006, the article took off like wild-fire. This is how desperate so many are to find vindication for AW. So much so that Walker himself appeared on abmd, post #112885, and cleared up the matter. But that doesn’t stop the conspiracy mongers to attribute all sort of dark forces at work:

    (from abmd, post #112920)

    Steve Walker:

    As a point of clarification – this news is not new. The original newspaper
    article by Sally Beck was published in 2006 during the time we were presenting
    these preliminary findings at the IMFAR in Montreal. I am unsure why it now
    appears as a ‘current article’ in the Daily Mail.
    Steve Walker

    Dad FourKids:

    I will speculate a bit about your observation. Bear in mind that as a Yank, I
    have very limited knowledge about the interplay between the British Media, govt.
    officials and public at large, but here goes…
    The witchhunt against Wakefield was engineered via the Times using the industry
    toady Deer. He published many “borderline” libelous statements about Wakefield,
    which were parrotted by the Daily Mail (among other outlets). if memory serves
    me right, Wakefield at some point filed a legal complaint against the various
    papers for printing untrue statements as though fact, and the Daily Mail was one
    of the papers which found it necessary to publish a public appology for doing
    so. (If memory serves me, the Times never did.)
    I recall when this study first crossed the net, but I believe the mail may have
    NOT printed it at that time, quite possibly under pressure from the Govt. as the
    proceedings against Wakefield were just getting underway, and the Status Quo
    (MOH knows all and the MMR is virtually Mannah) could not be upset before the
    case against Wakefield for his heresy was complete.
    Now that Wakefield has been publically “birched” and his 1998 Stufy formally
    retracted, the Mail is free to publish this replication, because it will not
    change a thing on the Official Record. I believe that those who have sat
    through the hearings or waded through the actual transcripts have found that the
    govt. never actually challenged Wakefield’s science, just exploited whatever
    minor technicalities they could conceive to protect their stand on the MMR.
    (Sidebar: Since we are striking from the official record any research which has
    “ethical” violations attached to their authors, we should now through out all 3
    of Fombonne’s, since he has been found to have illegally accessed medical
    records, and Hvid’s and Madsen’s, since a sr. member of their teams has stolen
    study funds and allegedly also taken the data, which conveniently protects it
    from independant evaluation, and which (if true) I believe he holds hostage in
    order to force the CDC to let him keep the $2M he swiped.)
    It matters little to the Wakefield case that replication comes out. I believe
    that the Govts. on both sides of the ocean already know the truth, and since
    Wakefield was not challenged on points of science, but on points of ethics he
    can remain stricken from the roster. What occurred to him was simply punishment
    for not falling into goose-stepping line; had he lived 100 years ago he would
    have been tossed in jail, had it been 300 years ago he would have probably been
    beheaded.
    I would like to think that the Mail publishing this now, although just a little
    late to truly be effective, is in small part an appology to Andrew for the small
    part they played in maligning his good name. Only the brass at the Mail could
    confirm that.
    One of the biggest mistakes people who stand on the sidelines of this (or any
    other “scientific”, public health dilemma) make is looking at things strictly
    through the microscope, with almost no consideration to the human factors of the
    players. As long as you have human beings making decisions about policy you
    have to allow room to consider the human nature that may come into play. Greed,
    pride, power, and ego are all just as important as the nuts and bolts science,
    and that is something that all too often the news media leaves out altogther.

  82. #82 Akasha
    May 2, 2010

    Dr Susan Davies responds to Brian Deer:

    “Caution in assessing histopathological opinions. 30 April 2010

    As one of the pathologists in question, I wish to respond to some of the issues raised in the recent article by Brian Deer(1), and accompanying editorial by Nick Wright(2), on the histopathological aspects of autistic enterocolitis.

    There is some misrepresentation of my involvement and lack of understanding of the process in studies involving histopathology.

    Firstly, at the time in question I was working solely for the NHS and acted as the key pathologist for the clinical gastroenterology paediatric team. I was not the lead pathologist for this, or any other Wakefield project.

    Secondly, I was not responsible for reporting the majority of the biopsy specimens from the twelve children, initially written up in the Lancet paper(3). This period predated the advent of subspecialty reporting and a number of consultants, each with varying levels of expertise and gastroenterology interest, were responsible for reporting these cases. It is erroneous to consider these reports to be more accurate than any subsequent review. Nick Wright writes that there is nothing intrinsically wrong with such a review of the histopathology. I would state more strongly that ANY study of histopathology has more credence, with reduced inter- and intra-observer variation, when a systematic review, using defined structured criteria over a short time-frame, is performed.

    As to the severity of any pathology, there was a gradual awareness by those attending the regular clinicopathological conferences that we were identifying subtle changes in some of the mucosal biopsies from autistic children. Subtle does not always indicate insignificant: the focal features of cow’s milk protein enteropathy may be misinterpreted as normal; the hidden pathogen in immunodeficient syndromes is identified only by close scrutiny; the presence of Helicobacter pylori in gastric biopsies was previously not recorded, as they were considered insignificant.

    The significance of any minor changes cannot be determined at the outset; the natural history evolves and/or may be altered by any therapy, but the changes must first be recognised. It may not be widely appreciated that the separation of the upper limit of normal from the lower spectrum of abnormal in histopathology is not always clear cut (and not only in the gastrointestinal tract).

    Without going into extensive detailed histopathological description, there does appear to be some confusion within the discussion of these cases. It should be appreciated that the term ‘colitis’ covers a range of changes from minimal, self-limiting and non-specific, to extensive, severe and characteristic; as such it is difficult to select a point from within a spectrum for a single definition. Reference was made to focal active colitis(4), although later it is stated that minor changes are not to be called colitis. In personal practice, as evidenced at the GMC hearing, I had a different threshold from the other co-authors who performed the review and translated those findings into words.

    While a clinical gastroenterologist might consider caecal active inflammation with incipient crypt abscess formation to be normal in children(1), this is a significant finding to be recorded by pathologists. The dismissal of ‘a bit of architectural distortion’ as insignificant underscores the problem of histopathological complexity as this, in fact, is a key feature in the assessment of colonic biopsies(5).

    Time may indeed bring greater clarity to our understanding of what, if any histopathological changes may be associated with autism.

    References
    1. Deer B. Wakefield’s ‘autistic colitis’ under the microscope. BMJ 2010; 340: 838-41.
    2. Wright N. Does autistic enterocolitis exist? BMJ 2010; 340: 819-821.
    3. Wakefield AJ, Murch SH, Anthony A, Linnell J, Casson DM, Malik M, et al. Ileal-lymphoid-nodular hyperplasia, nonspecific colitis, and pervasive developmental disorders in children. Lancet 1998; 351: 637-41.
    4. Greenson JK, Stern RA, Carpenter SL, Barnett JL. The clinical significance of focal active colitis. Hum Pathol 1997;28:729-33.[
    5. Jenkins D, Balsitis M, Gallivan S et al. Guidelines for the initial biopsy diagnosis of suspected chronic idiopathic inflammatory bowel disease. The British Society of Gastroenterology Initiative. J. Clin. Pathol. 1997; 50; 93–105.

    Susan E Davies,
    Consultant Histopathologist
    Addenbrookes’s Hospital, Cambridge CB2 0QQ
    Competing interests: None declared”

  83. #83 Nick Wright
    May 15, 2010

    I have just come across this blog and seen the comments on my editorial, and some of the comments of pathologists. You say that my editorial is ‘a jumbled mess that doesn’t really define “autistic enterocolitis” and isn’t clear on whether Wright is examining the question of whether there is a form of enterocolitis unique (or nearly so) to autistic children or whether autistic children have higher rates of enterocolitis than children without autism’. Nice. How can you define a condition which may not be nosological entity? We are faced we a claim which may or may not be true. I don’t ‘cling’ to anything- I don’t know the answer and neither do you. But you have already made up your mind – the answer is no, there is not. This has been the whole trouble with this topic – ever since I served on the MRC Committee which first looked at this matter, it is clear that science went out of the window on both sides – in both the Royal Free group and the Department of Health. The only reasonable position is this – that children with ASD have an increased incidence of gastrointestinal disorders, the cause of which is not known. ‘Autistic enterolitis’ has been proposed as an entity, but there is little or no evidence that it exists as one. The only way to sort this is to do more research, but I would not advise anyone in the UK in the current climate to approach the MRC or Wellcome for a grant to do this, or an ethical committee to start doing invasive investigations on patients with ASD, in the current climate. Which itself is a problem. But there is little doubt that bowel disease in autistic patients is a real CLINICAL problem.

    Its disappointing to see such emotion and personal bias creeping into what is supposed to be a scientific debate

  84. #84 patricia davidson
    September 5, 2011

    we have a young male patient who developed autism after the MMR vaccine, although whether it is actually related to the vaccine is unclear at this point. however, what is clear is that of more recent date he has developed a severe bowel disorder and has been quite seriously ill with it… he is now on the mend with intensive therapy including steroids… his bowel disorder (original symptom was constipation) commenced some time ago and deteriorated over time into Crohn’s disease.. he is profoundly autistic and now has severe entero-colitis/Crohn’s.. his parents are now examining all the issues involved in their son’s passage through life. He was born in 1996…

  85. #85 Scottynuke
    September 5, 2011

    Unverifiable necromancer troll is unverifiably necromancic…

    And yes, it’s entirely clear the autism and vaccine are unrelated.

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