ATTENTION MHRA: PROFESSOR GILBERG STRATTERA STUDY! ACTION NEEDED *NOW*

ATTENTION MHRA: PROFESSOR GILBERG STRATTERA STUDY! ACTION NEEDED *NOW*

Joined: January 1st, 1970, 12:00 am

September 2nd, 2007, 6:52 pm #1

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Joined: January 1st, 1970, 12:00 am

September 2nd, 2007, 6:57 pm #2

NOW! Not next month, next year, next decade when death tolls have risen. NOW! n/t
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Joined: January 1st, 1970, 12:00 am

September 2nd, 2007, 7:01 pm #3

'We take any necessary action to protect public PROMPTLY if there is a problem' n/t
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Joined: January 1st, 1970, 12:00 am

September 2nd, 2007, 7:02 pm #4

HOW LONG IS MHRA'S "PROMPTLY"? So far OVER A YEAR AND STILL NO ACTION! n/t
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Joined: January 1st, 1970, 12:00 am

September 2nd, 2007, 7:06 pm #5


What a FARCE the MHRA are.
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Joined: January 1st, 1970, 12:00 am

September 2nd, 2007, 7:09 pm #6

MHRA DO NOT protect the public, we need ANOTHER group to protect the public from MHRA n/t
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Joined: January 1st, 1970, 12:00 am

September 5th, 2007, 10:31 pm #7


http://scientific-misconduct.blogspot.c ... tific.html

<H3 class=post-title><FONT color=#000066>The Gillberg affair and the fall of a scientific journal (JAACAP)</FONT></H3>
<DIV class=post-body>
<DIV><FONT color=#000066><IMG height=382 alt="Journal of the American Academy of Child and Adolescent Psychiatry" hspace=10 src="http://www.thejabberwock.org/blog/2/jaacap.png" width=247 align=left vspace=10 border=0></FONT>Professor Christopher Gillberg was Professor of child psychiatry at Gothenburg University, in Sweden. He is visiting Professor of psychiatry at the <STRONG><FONT color=#000066>University of Strathclyde</FONT></STRONG> in Glasgow. He is involved in patient care at the <STRONG><FONT color=#000066>National Centre for Young People with Epilepsy</FONT></STRONG> and is registered as a Child Psychiatrist in the UK as of 21 April 2004 (Medical Qualification Lakarexamen 1973 Goteborg, Specialist Register Child and Adolescent Psychiatry from 21 APR 2004, GMC number 6095760). Notably, this registration with the General Medical Council occurred after the events referred to below.

I have much to say about this affair, but I will concentrate only on the role of a medical journal, and my discussions with that journal.

For detailed discussion, original documents and references relating to this incident see <STRONG><FONT color=#000066>here</FONT></STRONG>. Briefly, in 2002 Gillberg was accused of research misconduct in critical research involving a psychiatric concept known as "DAMP". This is part of the ADHD spectrum of diagnoses, and an area of medicine which is under intense scrutiny. Evidence to support the allegations of research misbehavior seem to be substantial (<STRONG><FONT color=#000066>here</FONT></STRONG>). The authors refused to allow anyone to inspect their data properly. A court ordered that the data be made available to investigators. Before that could be enforced, though, the data was deliberately destroyed --100,000 pages, covering 16 years of research on children. The approach of Gothenburg University was subject to extensive criticism (as detailed <STRONG><FONT color=#000066>here</FONT></STRONG>). Despite the destruction of data under such circumstances, the relevant publications purporting to represent those data have not yet been retracted. Such a situation is untenable.

The intention of this post is not to discuss Christopher Gillberg or the precise alleged misconduct. The mechanics of the affair are of considerable interest but are not directly pertinent here. However, the Gillberg affair raises a number of issues that are pertinent to this blog
  • the failure of structures designed to maintain integrity in medical science
  • the collusion of institutions, medical journals and commercial entities with scientific misbehavior
  • convenient manipulation of language and definition to obscure distortion of the scientific literature</LI>
Perhaps the most critical implicated publication is the following:

<STRONG>Rasmussen P, Gillberg C. (2000) Natural outcome of ADHD with developmental coordination disorder at age 22 years: a controlled, longitudinal, community-based study. J Am Acad Child Adolesc Psychiatry. 2000 Nov;39(11):1424-31 <FONT color=#000066>Pubmed Link</FONT>.</STRONG>

Now this prestigious journal, the Journal of the American Academy of Child and Adolescent Psychiatry is already under considerable international fire over another paper which has not yet been retracted. In particular, in a widely discussed recent television broadcast the editor of JAACAP displayed no concern when presented with evidence that an important paper about GSK's antidepressant drug Paxil and the infamous study 329 published in JAACAP - a) might have reported "findings" that misrepresented the underlying data, b) that this should have been known to the writers, and c) that reviewers had been ignored. It is possible that this publication might have contributed to the death or injury of some children. For discussion of this JAACAP affair see <STRONG><FONT color=#000066>here</FONT></STRONG>, <STRONG><FONT color=#000066>here</FONT></STRONG>, <STRONG><FONT color=#000066>here</FONT></STRONG>, <STRONG><FONT color=#000066>here</FONT></STRONG>, <STRONG><FONT color=#000066>here</FONT></STRONG> and <STRONG><FONT color=#000066>here</FONT></STRONG>.

In that instance, Editor Dr Mina Duncan simply stated on a Panorama Television Broadcast [<STRONG><FONT color=#000066>Link</FONT></STRONG>, <STRONG><FONT color=#000066>Link</FONT></STRONG>] that:

<STRONG>"I don’t have any regrets about publishing [the study] at all – it generated all sorts of useful discussion which is the purpose of a scholarly journal."</STRONG>

As <STRONG><FONT color=#000066>previously discussed</FONT></STRONG> according to this logic, we should publish studies with as many flaws as possible so that we can “usefully discuss” them.

With that in mind, I reproduce my trail of correspondence with the Editors of JAACAP about this other Gillberg publication (Child Adolesc Psychiatry. 2000 Nov;39(11):1424-31) and the shocking dismissive response.

<STRONG>It is not clear to me that JAACAP should any longer be considered as a legitimate scientific journal.</STRONG>

Date: Wed, 23 May 2007 15:17:50 +0100
<STRONG>From: Aubrey Blumsohn
To: Sherri Willoughby, Editor JAACAP</STRONG>
Subject: Gillberg Publication in JAACAP

Dear Dr. Willoughby,

I write further to some information that has been circulating about a 2000 publication in JAACAP about a putative psychiatric disorder in children (Rasmussen & Gillberg, 39: 1424-1431).

It is apparent that the raw data underlying this (and perhaps other) publications has been destroyed by the authoring scientists and their team. Refusal of a scientist to reveal raw data would normally provide prime facie evidence of scientific misconduct. Destruction of such data while questions were being asked about the veracity of the research would constitute a very serious breach of scientific norms.

I am therefore writing with two simple questions:


<OL>
[*]Is the journal aware that the raw data underlying this manuscript was destroyed by the authoring scientific team?
[*]This manuscript and it's conclusions are clearly unsafe. I am concerned that this manuscript has not yet been retracted. Please let me know what steps have been undertaken to do this or explain why this has not yet been done.</LI>[/list]Kind Regards

Dr Aubrey Blumsohn
MBBCh, PhD, MSc, BSc(hons), MRCPath
Subject: RE: Gillberg Publication in JAACAP
Date: Thu, 24 May 2007 13:29:56 -0500
<STRONG>From: "Sherri Willoughby" JAACAP
To: "Aubrey Blumsohn"</STRONG>

Dear Dr. Blumsohn,

Policies regarding the retention of raw data are not under the purview of the Journal. These are typically set by the academic institution where the investigators work and/or by the funding agency (or regulatory body, in the case of medications, although that does not apply to this study).

Sincerely,

Sherri Willoughby, Managing Editor
Journal of the American Academy of Child and Adolescent Psychiatry
At the same time Doug Keenan, a mathematician, received a similar "reply"

<STRONG>From: "Sherri Willoughby" JAACAP
To: "D.J. Keenan"</STRONG>
Subject: RE: JAACAP data request policy

Dear Dr. Keenan,

Thank you for your interest in the Journal and its policies.

JAACAP has a longstanding policy that unpublished instruments and manuals be made available by the author to interested readers (but we do not require that this be free of charge).

We do not have a policy on access to data, but if we should receive a request (e.g. for purposes of a meta-analysis), we would refer the requester to the corresponding author of the paper. We do not obligate the author to provide the data. If the Journal did, in the future, develop such a policy, it would apply only to papers published after the policy was established and to authors who were informed of the policy before submitting to JAACAP (by having it in the Instructions for Authors).

Sincerely,

Sherri Willoughby, Managing Editor
Journal of the American Academy of Child and Adolescent Psychiatry
I replied as follows:
Date: Thu, 24 May 2007 20:23:09 +0100
<STRONG>From: Aubrey Blumsohn
To: "Sherri Willoughby" Editor JAACAP</STRONG>
Subject: Re:Gillberg Publication in JAACAP

Dear Dr Willoughby

I am sorry but your reply appears to me to be wholly inadequate. This paper involves a putative psychiatric disorder in children.

You seem to be suggesting that the destruction of data, under conditions where that data is being questioned isn't (nor should be) of any concern to you as an editor of a Journal.

I wish to publish your response, but I thought I would give you the chance to further clarify your position on this.

Kind Regards

Dr Aubrey Blumsohn
MBBCh, PhD, MSc, BSc(hons), MRCPath
Having received no further reply, I wrote again....
Date: Tue, 5 Jun 2007 15:36:51 +0100
From: Aubrey Blumsohn
To: "Sherri Willoughby" Editor JAACAP
Subject: Re:Gillberg Publication in JAACAP

Dear Dr Willoughby,

Thank you again for your illuminating response.

I have been reading your instructions for authors that would have pertained at the time this manuscript was submitted. http://edmgr.ovid.com/jaacap/accounts/i ... April1.htm

1) Firstly I note that you subscribe to ICMJE guidelines in terms of data. You therefore import into your guidelines for authors clear guidelines with regard to data.

2) I further note that the web address to ICMJE within your guidelines has an error (a space) which suggests perhaps it is has not been referred to recently.

3) Perhaps some aspects of editorial practice and good science are so obvious that they do not require explicit mention in guidelines.

4) I also note that you hold copyright on the publication. This must surely imply that you vouch for its contents.

Might I ask whether you have enquired of the institution concerned whether they have completed their analysis of these data to check the veracity of the reported findings. If not, this may be appropriate at this juncture.

Your response would be appreciated.

Best wishes

Dr Aubrey Blumsohn
MBBCh, PhD, MSc, BSc(hons), MRCPath
and again ......
Date: Sun, 10 Jun 2007 10:46:25 +0100
From: Aubrey Blumsohn
To: "Sherri Willoughby" Editor JAACAP
Subject: Re:Gillberg Publication in Journal of the American Academy of Child and Adolescent Psychiatry

Dear Dr Willoughby

I have not received an acknowledgment of my last communication below.

Please therefore accept this communication as a formal letter of concern to you as Editor with regard to the veracity of the paper:

Rasmussen & Gillberg (2000) JAACAP 39: 1424-1431

I must admit that I also have serious concerns about potential Editorial misconduct in this instance.

I believe JAACAP was also somehow involved in publishing disputed research involving Seoxat/Paxil, and I would have serious concerns about the plausibility of JAACAP given such repeated instances of apparent disconcern about scientific integrity.

Best wishes

Dr Aubrey Blumsohn
The problem extends beyond questions of ADHD, child psychiatry, Gillberg or the JAACAP. By ignoring such problems, the integrity of all research involving human subjects is put into jeopardy. When journal editors behave in this manner, it raises questions about the entire research enterprise in medicine.

Such behavior on the part of a journal editor is also unfair to the many authors who have published respectable and legitimate science within their pages. It means that all manuscripts published in JAACAP should be viewed with suspicion. It is also unfair to the many psychiatrists and psychologists who are involved in honest clinical practice, and whose profession has been brought into disrepute.

What exactly is the function of a scientific journal beyond serving as a laundering operation?

</DIV></DIV>
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Joined: January 1st, 1970, 12:00 am

September 5th, 2007, 10:51 pm #8


Articles that should never be accepted into a medical journal in the first place and would be more at home in the pages of a tabloid.&nbsp; Here are the rapid responses to one such article that BMJ published.

http://www.bmj.com/cgi/eletters/335/7616/370#175765

<STRONG><FONT face="" size=+1>Rapid Responses to:</FONT></STRONG>

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<DT>[font=]FEATURE:[/font]
[font=]Jonathan Gornall[/font]</FONT>
<DD>[font=]<STRONG>Hyperactivity in children: the Gillberg affair</STRONG>
BMJ 2007; 335: 370-373 <NOBR>[Full text] </NOBR>[/font]</DD></DL></DD></DL></TD>
<TD vAlign=top></TD></TR></TBODY></TABLE>
<STRONG><FONT face="" size=+1>Rapid Responses published:</FONT></STRONG>


<DL>
<DD>
<DL>
<DT><FONT face=verdana,arial,helvetica,sans-serif size=-1><IMG alt="[Read Rapid Response]" src="http://www.bmj.com/icons/misc/sectionDOWN.gif" border=0> <STRONG>An extraordinary scientist and clinician</STRONG>
<DD>Helen Minnis &nbsp;&nbsp;(25 August 2007)</FONT> </DD></DL>
<DD>
<DL>
<DT><FONT face=verdana,arial,helvetica,sans-serif size=-1><IMG alt="[Read Rapid Response]" src="http://www.bmj.com/icons/misc/sectionDOWN.gif" border=0> <STRONG>Research ethics and ADHD</STRONG>
<DD>Christine Puckering &nbsp;&nbsp;(29 August 2007)</FONT> </DD></DL>
<DD>
<DL>
<DT><FONT face=verdana,arial,helvetica,sans-serif size=-1><IMG alt="[Read Rapid Response]" src="http://www.bmj.com/icons/misc/sectionDOWN.gif" border=0> <STRONG>Rewriting history – the Gillberg affair</STRONG>
<DD>Janne Larsson &nbsp;&nbsp;(31 August 2007)</FONT> </DD></DL>
<DD>
<DL>
<DT><FONT face=verdana,arial,helvetica,sans-serif size=-1><IMG alt="[Read Rapid Response]" src="http://www.bmj.com/icons/misc/sectionDOWN.gif" border=0> <STRONG>Anti-psychiatry</STRONG>
<DD>Vanna Beckman &nbsp;&nbsp;(1 September 2007)</FONT> </DD></DL>
<DD>
<DL>
<DT><FONT face=verdana,arial,helvetica,sans-serif size=-1><IMG alt="[Read Rapid Response]" src="http://www.bmj.com/icons/misc/sectionDOWN.gif" border=0> <STRONG>Larsson: Scientologist - yes or no?</STRONG>
<DD>Jonathan Gornall &nbsp;&nbsp;(2 September 2007)</FONT> </DD></DL>
<DD>
<DL>
<DT><FONT face=verdana,arial,helvetica,sans-serif size=-1><IMG alt="[Read Rapid Response]" src="http://www.bmj.com/icons/misc/sectionDOWN.gif" border=0> <STRONG>Profound ethical issues smoothed over</STRONG>
<DD>Aubrey Blumsohn &nbsp;&nbsp;(2 September 2007)</FONT> </DD></DL>
<DD>
<DL>
<DT><FONT face=verdana,arial,helvetica,sans-serif size=-1><IMG alt="[Read Rapid Response]" src="http://www.bmj.com/icons/misc/sectionDOWN.gif" border=0> <STRONG>A well-researched article by J Gornall</STRONG>
<DD>Elisabeth Fernell &nbsp;&nbsp;(2 September 2007)</FONT> </DD></DL>
<DD>
<DL>
<DT><FONT face=verdana,arial,helvetica,sans-serif size=-1><IMG alt="[Read Rapid Response]" src="http://www.bmj.com/icons/misc/sectionDOWN.gif" border=0> <STRONG>The Freedom of Information Act is a cornerstone in our democracy</STRONG>
<DD>Janne Larsson &nbsp;&nbsp;(3 September 2007)</FONT> </DD></DL>
<DD>
<DL>
<DT><FONT face=verdana,arial,helvetica,sans-serif size=-1><IMG alt="[Read Rapid Response]" src="http://www.bmj.com/icons/misc/sectionDOWN.gif" border=0> <STRONG>Jonathan Gornall misses critical ethical research questions</STRONG>
<DD>Leif R Elinder &nbsp;&nbsp;(3 September 2007)</FONT> </DD></DL>
<DD>
<DL>
<DT><FONT face=verdana,arial,helvetica,sans-serif size=-1><IMG alt="[Read Rapid Response]" src="http://www.bmj.com/icons/misc/sectionDOWN.gif" border=0> <STRONG>Gillberg: A further defence</STRONG>
<DD>Philip J. Graham &nbsp;&nbsp;(4 September 2007)</FONT> </DD></DL></DD></DL>
<HR color=#000000 noShade SIZE=1>


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<TD align=left><A name=175206><!-- null 2 --></A><FONT face="" size=+1><STRONG>An extraordinary scientist and clinician</STRONG></FONT></TD>
<TD vAlign=bottom align=right><FONT face="" size=-1>25 August 2007</FONT></TD></TR></TBODY></TABLE></TD>
<TD noWrap><IMG height=17 alt=" " src="http://www.bmj.com/icons/spacer.gif" width=16> <IMG alt="Next Rapid Response" src="http://www.bmj.com/icons/misc/grayDOWN.gif" border=0> <IMG alt=Top src="http://www.bmj.com/icons/misc/sectionTOP.gif" border=0> </TD></TR>
<TR><!-- begin author sidebar -->
<TD vAlign=top width=125><FONT face="" size=-2>Helen Minnis,
Senior Lecturer in Child and Adolescent Psychiatry
<EM>University of Glasgow</EM>
Send response to journal:
Re: An extraordinary scientist and clinician

</FONT>

</TD>
<TD><FONT face="" size=-1><!-- article ID: 335/7616/370 -->
Jonathan Gornall’s detailed exploration of the appalling moral dilemma faced by Professor Chris Gillberg and his team is long overdue and much welcome. However, it still does not do justice to the true worth of this extraordinary scientist and clinician. What makes Professor Gillberg stand out among his peers is his ability to forge and nurture meaningful scientific collaborations with new research groups which thrive under his mentorship. The fact that Professor Gillberg’s scientific output has, if anything, increased since this affair began is testament to the fact that there are research teams all over the world who are benefiting from collaborating with him. I, for one, am proud to be part of such a team.
Competing interests: None declared</FONT>
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<TD align=left><A name=175483><!-- null 2 --></A><FONT face="" size=+1><STRONG>Research ethics and ADHD</STRONG></FONT></TD>
<TD vAlign=bottom align=right><FONT face="" size=-1>29 August 2007</FONT></TD></TR></TBODY></TABLE></TD>
<TD noWrap><IMG alt="Previous Rapid Response" src="http://www.bmj.com/icons/misc/grayUP.gif" border=0> <IMG alt="Next Rapid Response" src="http://www.bmj.com/icons/misc/grayDOWN.gif" border=0> <IMG alt=Top src="http://www.bmj.com/icons/misc/sectionTOP.gif" border=0> </TD></TR>
<TR><!-- begin author sidebar -->
<TD vAlign=top width=125><FONT face="" size=-2>Christine Puckering,
Consultant clinical psychologist/research fellow
<EM>Royal Hospital for Sick Children, Yorkhill, Glasgow G3 8SJ</EM>
Send response to journal:
Re: Research ethics and ADHD

</FONT>

</TD>
<TD><FONT face="" size=-1><!-- article ID: 335/7616/370 -->
In writing this response, I am required by the BMJ to obtain written agreement of any patient who might be able to identify him or herself from what I write. This, and similar more stingent protection, is required by committees for the ethics of research for the protection of the families who allow us to hear about their difficulties. They do this in the belief that what we are doing will ultimately improve our understanding and the help we offer. Were we unable to offer guarantees of confidentiality and anonymity, research into causes and treatment of mental health problems would not be possible. Professor Gillberg had given such a guarantee to participants in his studies. I would support his integrity in keeping that promise even at considerable personal and professional cost.
On the topic of AHDH, I was a member of the SIGN guideline group. As a psychologist with an interest in parenting and parenting interventions I would have expected to favour family behavioural treatments. I would have been mistaken! The evidence was not strong that this alone was effective. The amelioration of core symtpoms by appropriate medication in well- diagnosed cases was clear. This does not rule out the advantages, indeed necessity, for good family and educational support and management, but appropriate medication can help children to stay within the school system, learn effectively and avoid the adverse long term consequences of disruptive home and school life.
On a clinical level, my experience of Professor Gillberg's work with patients is that he is a careful, skillful and empathic clinician, who far from seeking to marginalise, exclude or stigmatise children or their families, offers them a generous share of his knowledge and understanding which is both empowering and comforting.
Ref SIGN guideline 52 Attention deficit and hyperkinetic disorders in children and young people. www.sign.ac.uk/pdf/sign52.pdf
Competing interests: None declared</FONT>
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<TD align=left><A name=175503><!-- null 2 --></A><FONT face="" size=+1><STRONG>Rewriting history – the Gillberg affair</STRONG></FONT></TD>
<TD vAlign=bottom align=right><FONT face="" size=-1>31 August 2007</FONT></TD></TR></TBODY></TABLE></TD>
<TD noWrap><IMG alt="Previous Rapid Response" src="http://www.bmj.com/icons/misc/grayUP.gif" border=0> <IMG alt="Next Rapid Response" src="http://www.bmj.com/icons/misc/grayDOWN.gif" border=0> <IMG alt=Top src="http://www.bmj.com/icons/misc/sectionTOP.gif" border=0> </TD></TR>
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<TD vAlign=top width=125><FONT face="" size=-2>Janne Larsson,
writer - investigating psychiatry
<EM>home</EM>
Send response to journal:
Re: Rewriting history – the Gillberg affair

</FONT>

</TD>
<TD><FONT face="" size=-1><!-- article ID: 335/7616/370 -->The Gillberg affair was over. The court records told the story. It was not possible to conceal and destroy publicly funded and owned research. All levels of the Swedish judicial system had found Christopher Gillberg and his colleagues guilty.
But for some reason journalist Jonathan Gornall rewrites history to make Professor Gillberg an innocent victim.
The main part of Gornall’s story goes to prove that Gillberg’s refusal to open his research for examination was right. In the defence for Gillberg’s actions and his colleagues’ destruction of research data, Gornall uses all the arguments heard of in media during the court process. But this affair is not a matter of religious beliefs or who can have talked to whom at some time in history, neither is it a matter of what some psychiatrists think. This is about parents’ right to know the scientific research behind the diagnoses ADHD and DAMP, the right to informed consent. This is about law, need for transparency and the good Swedish Freedom of Information Act. And the court process is definitely over. All levels of the judicial system have come to the same conclusion. The Chief Justice of Appeal in the Gillberg case even said that the sentence of the court would be formulated in a pedagogic way “so that everyone can read it”.1 And so it was. The Parliamentary Ombudsmen, who initiated the prosecution said: “I think it is a very good sentence, it is well written, well arranged and pedagogic…”2 An extensive summary of the Gillberg affair can also be found on the web site of The Parliamentary Ombudsmen.3
It would have been possible for Gornall to read this information or get it summarized in English, so to avoid repeating the old and long ago rejected arguments.
----------
Sweden has an old and proud tradition of Freedom of Information. Citizens and media have the right to know what is going on in government agencies and in projects funded and owned by the public. Even if psychiatrists object, this also applies to their projects and research.
When key biological psychiatrists in 1999 met with the National Board of Health and Welfare to plan for the diagnosing and drugging of large segments of the child population in Sweden, they had expected their plans to be hidden from public view. They had expected the plans and manuscripts to be issued as the official view of the State, without any form of public debate.
To their surprise this did not happen. A court found, with reference to the Freedom of Information Act (FOIA), that the documents should be released to the public. And so they were spread around among interested persons and an intensive debate over the handling of children was started. The psychiatrists involved did definitely not appreciate this. Similarly, the release of the documents is not appreciated by Gornall, who in his article represents this as something suspect and a matter of who sent whom what.
The view among psychiatrists about the release of documents and the ensuing debate can be exemplified by a request from Christopher Gillberg’s colleague, Peder Rasmussen (who later destroyed the research data). Rasmussen wrote to the National Board of Health and Welfare calling for actions: “I write to you in a very urgent matter where your help/action would be of great importance. A wave of unrestrained and totally ideologically based critic against neuropsychiatry in general and DAMP and Christopher Gillberg in particular is sweeping over the country…”4 Rasmussen is requesting that the National Board of Health and Welfare should take action to restrain the debate and critical views against Gillberg and psychiatry in media.
But the official in charge at the National Board of Health and Welfare instead took heed to the critical voices. He said: “We now of course have to reconsider our position and take in serious representatives for both schools [in the project].”5 This however did not happen and the official vanished from the project. Instead the National Board of Health and Welfare hired Gillberg’s earlier colleague Lars Hellgren and put him in charge. The content of the coming recommendations from the National Board of Health was assured for the group of biological psychiatrists.
Gillberg’s role in the medicalization of and prescription of psychiatric drugs to children in Sweden and Norway cannot be overstated. He has been the top psychiatric authority in both countries. Gornell also rewrites or omits vital data in this part.
In the 1997 article, referred to by Gornall, Gillberg actually states: “Around 10 percent of all children have considerable neuropsychiatric problems.”6 [Emphasis here.] In his book the year before he said: “A cautious conclusion is that DAMP and ADHD together afflict around one child out of ten.”7 “Conditions”, which, according to Gillberg, “to a large or considerable degree are due to disturbances /disorders or injuries in the function or structure of the central nervous system”, and of which he says: “Genetic factors and acquired brain injury are the cause of neuropsychiatric disorders, alone or in combination.”8
Gornall describes Gillberg’s views as “in step with mainstream psychiatric thinking”, and that may be true. But consensus among biological psychiatrists is not the same as science. The statements above cannot be proved in a single case of “ADHD”. There is no objective test to determine the alleged physical or chemical abnormalities in the brain of persons labelled ADHD – the statements above are just speculations. And so, well over 100 000 Swedish children are said to be suffering from a “brain disorder” – when in actual fact no one has been able to prove its existence.
And the children are all candidates for psychiatric drugs. Contrary to what Gornall writes in the article Gillberg has pushed for – and succeeded to get – a heavy increase in the prescription rates of Ritalin, Concerta and Strattera in Sweden and Norway. In an article from 2001 Gillberg and co-author Heiervang write: “One thing of concern during the last decade has been the marked increase the last decade in the use of drugs for ADHD to children in the US. This has led to a critical review of praxis in the US, without any evidence found that too many children get drugs. Instead it looks like many children earlier did not get the treatment they should have got. It is an ongoing problem that many children with ADHD do not get access to effective drugs, or are treated with too small doses to get a good enough effect.” 9 In other words – the problem was not the known harmful effects from the psychiatric drugs; it was that too few children got drugs or that they got too small doses. Not even the drugging of children in the US was a problem.
It’s a pity that English-speaking persons do not have the possibility to read the clearly written sentences in the Gillberg affair. If they could they would see that Gornall’s article in another light.
References
1 Göteborgsposten, Gillberg dömd i hovrätten [Gillberg sentenced in the Appeal Court], February 8, 2006, [This and other quotes in the article translated from Swedish.] http://www.gp.se/gp/jsp/Crosslink.jsp?d=113&a=257703
2 SVT, Hovrätten fastställde domarna [The Appeal Court confirmed the sentence], February 8, 2006, http://mobil.svt.se/svt/jsp/Crosslink.j ... rik_535083
3 Justitieombudsmannen, Anmälningar mot befattningshavare vid Göteborgs universitet angående underlåtenhet att verkställa kammarrättsdomar rörande utlämnande av handlingar, m.m., [A summary of the Gillberg case at the Parliamentary Ombudsmen] June 26, 2006, http://www.jo.se/Page.aspx? MenuId=106&MainMenuId=106&Language=sv&ObjectClass=DynamX_SFS _Decision&Id=2024
4 Rasmussen, letter to The National Board of Health and Welfare, with copy to 14 colleagues, October 13, 2000.
5 Mebius, interview in the paper Ordfront 1-2/2001.
6 Gillberg C, Ekman S. Skolan knäcker 120 000 barn [School ruins 120 000 children]. Dagens Nyheter, March 20, 1997.
7 Gillberg, Ett barn i varje klass [One child in each class], 1996.
8 Gillberg, Neuropsykiatriska aspekter [Neuropsychiatric aspects], March 8, 1999, http://www.sos.se/sos/publ/referat/0036-008.htm
9 Gillberg/Heiervang, Oro i kroppen – oro i knoppen [Worry in the body – worry in the head], BT, September 24, 2001, http://www.bt.no/meninger/kronikk/article132089.ece
Competing interests: (Affiliated with many groups and persons critical of the medicalization and drugging of children.)</FONT>
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<TD align=left><A name=175610><!-- null 2 --></A><FONT face="" size=+1><STRONG>Anti-psychiatry</STRONG></FONT></TD>
<TD vAlign=bottom align=right><FONT face="" size=-1>1 September 2007</FONT></TD></TR></TBODY></TABLE></TD>
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<TD vAlign=top width=125><FONT face="" size=-2>Vanna Beckman,
freelance journalist and writer
<EM>Kungälv, Sweden</EM>
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Re: Anti-psychiatry

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<TD><FONT face="" size=-1><!-- article ID: 335/7616/370 -->
My compliments to Jonathan Gornall for a well written and researched article on the Gillberg affair. I know something about the pitfalls of the story as I recently published a book in Swedish on the same theme, "Strider under hjärnåldern. Om ADHD, biologism, sociologism", Pavus 2007.
In the book I attempt to understand and depict the scientolgists' way of working, especially their shrewd networking with people who do not at all share their more bizarre science fiction like mythology, but who for many reasons like to contribute to the resistance to psychiatry generally and the diagnosis of ADHD specifically. This is where the two Swedish sociologists Eva Kärfve and Thomas Brante appear. They belong to the camp of anti-psychiatrists like Thomas Szasz, Peter Breggin, Sami Timimi and Steven Rose who can make good use of the information that the so called Citizens Commission on Human Rights may extract from various sources, but also fear to be connected with it and its sponsor, the Church of Scientology. Also, none of them can point to any research of their own in the field.
Vanna Beckman, Sweden, Freelance journalist
Competing interests: None declared</FONT>
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<TD align=left><A name=175696><!-- null 2 --></A><FONT face="" size=+1><STRONG>Larsson: Scientologist - yes or no?</STRONG></FONT></TD>
<TD vAlign=bottom align=right><FONT face="" size=-1>2 September 2007</FONT></TD></TR></TBODY></TABLE></TD>
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<TD vAlign=top width=125><FONT face="" size=-2>Jonathan Gornall,
Freelance journalist
<EM>London</EM>
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Re: Larsson: Scientologist - yes or no?

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<TD><FONT face="" size=-1><!-- article ID: 335/7616/370 -->
I welcome the response from Janne Larsson. I was sorry that he did not take advantage of several opportunities to talk to me while I was researching my article. In fact, he ignored three invitations to be interviewed and to clarify his role in proceedings.
He states that "this affair is not a matter of religious beliefs or who can have talked to whom at some time in history", but of course when it comes to his role, and his motives for having taken the actions he took, his beliefs are absolutely central - both to events and to the question of his credibility and objectivity as a writer in this field.
Mr Larsson signs himself as a "writer - investigating psychiatry". I am unable to say whether he is a Scientologist - he has been asked and, I notice, still fails to say - but it is a fact that he writes for Scientology publications. It's a reasonable assumption that he shares at least some of Scientology's core "values".
One of these "values" is the notion that psychiatry is an evil that must be destroyed. It would help others to judge the worth of Mr Larsson's comments and "revelations" about psychiatry if he could confirm whether or not this is a view shared by him. If so, then it would be easier to know what to make of many of his comments, including the startling disclosure that "When key biological psychiatrists in 1999 met with the National Board of Health and Welfare to plan for the diagnosing and drugging of large segments of the child population in Sweden, they had expected their plans to be hidden from public view".
Perhaps Mr Larsson would like to take this opportunity disclose his commitment to Scientology - and, if he is prepared to admit that he is a member of that organisation, to reveal the extent of its role in the campaign to discredit Professor Gillberg?
Competing interests: Author of article</FONT>
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<TD align=left><A name=175718><!-- null 2 --></A><FONT face="" size=+1><STRONG>Profound ethical issues smoothed over</STRONG></FONT></TD>
<TD vAlign=bottom align=right><FONT face="" size=-1>2 September 2007</FONT></TD></TR></TBODY></TABLE></TD>
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<TD vAlign=top width=125><FONT face="" size=-2>Aubrey Blumsohn,
Consultant, Sheffield Teaching Hospitals
<EM>Sheffield Teaching Hospitals NHS Trust</EM>
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Re: Profound ethical issues smoothed over

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<TD><FONT face="" size=-1><!-- article ID: 335/7616/370 -->The "Gillberg affair" raises profound issues.

The substance of the affair goes to the heart of what should be central to ethical discussion in a respectable medical journal. The issue at stake concerns the relationship between raw data and the representation of those data. That issue is central to a majority of recent scandals which have damaged the scientific basis of medicine and the trust of our patients.
It also concerns the availability of raw data to journals, fellow scientists, consumers, those who claim to police matters of integrity in science and even to authors themselves. In short, it concerns the safety of the entire scientific enterprise.
Gornall's piece in the BMJ skirts around every one of the principles while discussing a few snippets relating to the personalities involved. Even then, critical and well documented facts [1] are entirely ignored or misrepresented.
The piece pretends that the concerns raised about the Gillberg science were somehow vague. They were not [1]. In short, the critics of Gillberg's work asserted that the supposed results he obtained could not have arisen from the experiment as designed. They provided good grounds for such concerns. Furthermore they asserted that the study as described was incompatible with the obtaining of ethical approval as described. Gornall misrepresents this by stating that those who had raised the issues of misconduct "seemed to have no evidence of forgery, but only suspicions". Quite what readers are supposed to make of this topsy turvy logic is anyone's guess. The formal allegations submitted by Elinder and Kärfve, as well as the responses by Gillberg are available [1], yet Gornall fails to reference these.
Gornall fails to point out that several others had raised concerns which would only have been possible to address through scrutiny of raw data [1]. The Gillberg group claimed that the Chairman of the Ethical Committee, Ove Lundgren somehow exonerated them from scientific misconduct. Ove Lundgren himself denies this. In a letter to the Dean/Rector of the University, Ove Lundgren states: "I have never in my professional life felt so exploited as I have felt in this affair" (Ove Lundgren, University of Gothenburg, Feb. 21, 2005). Lundgren made the following statement:
"I got a printed list of the participants of the 16 year long study. The list was said to include the participants of the study. When I looked into the first file some of the participants that apparently had been part of the study according [to] the records in the file were not included on the printed list." [1]
Gornall also fails to point out that Elinder and Kärfve and Karfe were not the only persons who were refused the raw data. Gillberg himself eventually agreed that the University should appoint outside experts to examine the raw data. Three such experts were appointed (two Professors of Child Psychiatry and a Professor of medical sociology). Gillberg then withdrew his agreement to outside scrutiny. The Gillberg group also rejected an independent investigation offered by the Swedish Research Council. And then the Gillberg team destroyed the data making any scrutiny impossible.[1]
The <STRONG>only</STRONG> fact of the affair that is relevant to a serious ethical discussion is straightforward. The Gillberg team destroyed raw data having faced an accusation of research misconduct pertaining to those data. They destroyed those data despite a court order that it should be made available for scrutiny.
Gornall also misrepresents several other well documented facts while failing to cite public documents [1] that would allow readers to check. For example both the courts and the Parliamentary Ombudsman were repeatedly critical of Gillberg.
The Gornall piece also fails to comment on the fact that the key scientific papers based on these data have still not been retracted by the journals concerned [2]. Such a situation is untenable.
None of the participants in this affair are scientologists, and anyone who has followed these debates will be aware that this form of ad hominem assertion is almost routine when misconduct in psychiatric research is raised. I am surprised that the BMJ has seemingly assisted in promoting this form of tangential debate.
All of the key documents relating to this affair are available [1], many in English translation. Gornall could quite easily have cited these, but he failed to do so.
Discussions relating to the most basic principles of honest research are increasingly taking place outside of our Medical Journals [1,2] and there is good reason for that. If we are worried about the role of scientologists in the practice of medicine, we need to get our own house in order. Our profession is rendering itself increasingly irrelevant to the debate about its own functioning.
The brief moral of the BMJ piece is that future researchers faced with specific questions over the plausibility of their findings should simply destroy their data. They will no doubt be supported by the BMJ and their careers will continue unhindered.

<STRONG>References:</STRONG>

<OL>
[*]Collated documents on the Gillberg Affair: http://www.informath.org/apprise/a6400/b9.htm
[*]The approach of the J Am Acad Child Adolesc Psychiatry http://scientific-misconduct.blogspot.c ... tific.html </LI>[/list]
Competing interests: None declared</FONT>
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<TD align=left><A name=175753><!-- null 2 --></A><FONT face="" size=+1><STRONG>A well-researched article by J Gornall</STRONG></FONT></TD>
<TD vAlign=bottom align=right><FONT face="" size=-1>2 September 2007</FONT></TD></TR></TBODY></TABLE></TD>
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<TD vAlign=top width=125><FONT face="" size=-2>Elisabeth Fernell,
Neuropaediatrician
<EM>Habilitation Centre for pre-school children with autism, Rosenlund, 104 62 Stockholm, Sweden</EM>
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<TD><FONT face="" size=-1><!-- article ID: 335/7616/370 -->
My sincere gratefulness to journalist Jonathan Gornall for his accurate and well-informed article in BMJ about the process that has been initiated and maintained by a few persons in Sweden with the aim to discredit, slander and crush professor Christopher Gillberg. I have had the advantage of collaborating with Christopher Gillberg for more than 20 years, and, so, would like to express my appreciation and respect for his exceptional clinical knowledge and experience as well as his broad and excellent competence in research regarding so many aspects of the large neuropaediatric/neuropsychiatric field. Professor Gillbergs empathy, humanity and dedication to patients and their families is widely acknowledged. In research, professor Gillberg gives invaluable contributions to several research groups in many countries.
It is unbelievable to me that scientologists accuse him for advocating pharmacological treatment as the primary intervention in ADHD. All who have worked with professor Gillberg or have listened to him or have read his books or articles know that he first and foremost advocates other measures, based upon the underlying cognitive/executive dysfunctions in ADHD. That means that the first line of intervention, as emphasised by professor Gillberg, is based upon specific pedagogical measures, parent education and support. Of course, he recommends that children with severe symptoms not be withheld from effective pharmacological treatment.
The well-researched article by Jonathan Gornall will be an eye-opener for those who had not fully realised the extent of the campaign, which was launched in Sweden against professor Christopher Gillberg, with the aim to ruin his reputation. The BMJ article clarifies the process, and – hopefully - legal actions will bring justice after this nightmare.
Competing interests: None declared</FONT>
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<TD align=left><A name=175765><!-- null 2 --></A><FONT face="" size=+1><STRONG>The Freedom of Information Act is a cornerstone in our democracy</STRONG></FONT></TD>
<TD vAlign=bottom align=right><FONT face="" size=-1>3 September 2007</FONT></TD></TR></TBODY></TABLE></TD>
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<TD vAlign=top width=125><FONT face="" size=-2>Janne Larsson,
writer - investigating psychiatry
<EM>home</EM>
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Re: The Freedom of Information Act is a cornerstone in our democracy

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<TD><FONT face="" size=-1><!-- article ID: 335/7616/370 -->When Gornall did "research" for the article he showed his lack of interest in relevant facts already from the beginning. When in email he was referred to extensive and good summaries of the Gillberg affair in English, published on-line [1], he said he already knew about this. He was not interested. His approach - like his article - was more of a tabloid journalist building up a story on religious background, ethnical origin or sexual disposition of persons involved.
The sentences in the Gillberg affair were, as mentioned, written in a very clear way so that everyone could understand them – or should be able to understand them. A good translated summary should have been published in the BMJ, instead of a gossipy article repeating the arguments the courts have rejected long ago.
Gornall describes the use of the Swedish Freedom of Information Act (FOIA) in the derogatory terms of “attacks” and “get their hands on the material”, and in general represents it as something suspect. But the FOIA is a cornerstone in our democracy. It is about citizens' right to know what is going on in different agencies and in publicly funded and owned research projects – like Gillberg’s research. It also protects the integrity of individuals.
Finally, Gornall quotes and makes quite a point of Elias Eriksson’s complaint about the sentences to the Chancellor of Justice. He writes: "The application is under consideration." His source omitted to tell him that the Chancellor dismissed the case months ago. The case is closed.
[1] Documents on the Gillberg affair http://www.informath.org/apprise/a6400/b9.htm
[2] Dagens Medicin, JK granskar inte Gillbergärendet [The Chancellor of Justice does not investigate the Gillberg affair], June 7, 2007.
Competing interests: (Affiliated with many groups and persons critical of the medicalization and drugging of children.)</FONT>
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<TD align=left><A name=175794><!-- null 2 --></A><FONT face="" size=+1><STRONG>Jonathan Gornall misses critical ethical research questions</STRONG></FONT></TD>
<TD vAlign=bottom align=right><FONT face="" size=-1>3 September 2007</FONT></TD></TR></TBODY></TABLE></TD>
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<TD vAlign=top width=125><FONT face="" size=-2>Leif R Elinder,
Paediatrician
<EM>Community of Uppsala , 75103 Uppsala, Sweden</EM>
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Re: Jonathan Gornall misses critical ethical research questions

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<TD><FONT face="" size=-1><!-- article ID: 335/7616/370 -->
Jonathan Gornall misses critical ethical research questions
Instead of carefully discussing the ethical aspects of the "Gillberg affair" and the implications for medical publishing, Gornall takes a pin-hole view concentrating entirely on a supposed personal dispute reported to him by Gillberg. By concentrating on the personality aspects while ignoring completely the key problem of science, Gornall has done a grave disservice to integrity.
As subject of the article, I have no interest in the supposed personality aspects reported by Gornall. Gornall might however have benefited from checking the facts presented. For what it is worth, over the past 40 years I have only met Gillberg on two or three occasions (last in 1996). I have never had any association whatever with Scientology, if that is of any relevance. Gillberg himself has tried to turn this problem of ethics and data into a personal dispute.
Even if the personality aspects as presented by Gornall are true, it is unclear why he would feel compelled to write about them at this stage. I suspect that the reason is that individuals on the internet have begun to address the scientific and ethical questions that Journals have so far bypassed.
The reported aim of this 15 years study was to document "the natural outcome" in children Gillberg deemed as having a particular diagnosis without intervention" (1). Important ethical approvals for parts of the study are "missing" (letters dated 12 Sep 2006, 24 Oct 2006, Academy Director Claes-Olov Olsson, University of Gothenburg). The Gillberg group claims that the Chairman of the Ethical Committee, Ove Lundgren, has exonerated them from scientific misconduct even though Lundgren himself disputes this (2). The Gillberg group rejected an independent investigation offered by the Swedish Research Council (21 Mars 2003, C Gillberg, Peder Rasmussen, Letter to the Rector, University of Gothenburg). The reasons provided by Gillberg for refusing to allow scrutiny of any data (even by the Swedish Research Council) do not stand up to serious examination.
Christopher Gillberg - as leader of the research team failed to take responsibility for several dubious actions made by his group, including the illegal destruction of 100 000 pages of research material. Serious and specific questions were raised about the implausibility of the supposed findings and the relationship of the findings to the study methodology and the ethical approval. The allegations of misconduct will never be addressed, since the data is now destroyed. The BMJ (through Gornall) appear to regard this as a satisfactory situation.
Gornall fails to address any of the critical ethical research questions or the role of medical journals in this affair. The documentary record is ignored completely. Instead he invokes unfounded and malevolent "guilt by association" campaigns against critics, as well as the old chestnut of scientology. In so doing he has defamed myself and others who have who raised very legitimate scientific questions about this research.
We live in a society that encourages a focus on prurient interests, and which sometimes invents prurient stories where they do not exist. This is not however the function of a medical journal, particularly when the principles of science have been ignored. The content of Gornall's piece is as spurious as it is irrelevant to the actual matter at hand. The BMJ should be ashamed.
Leif Elinder
Paediatrician
Uppsala, Sweden
References:
(1) C Gillberg, Europ Child and Adol Psych
vol 2 Issue 2 July 1993, s 126
(2) Ove Lundgren, Letter to the Rector,
University of Gothenburg, Feb 21,
2005
=======================
Competing interests: Subject of the article</FONT>
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<TD align=left><A name=175797><!-- null 2 --></A><FONT face="" size=+1><STRONG>Gillberg: A further defence</STRONG></FONT></TD>
<TD vAlign=bottom align=right><FONT face="" size=-1>4 September 2007</FONT></TD></TR></TBODY></TABLE></TD>
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<TD vAlign=top width=125><FONT face="" size=-2>Philip J. Graham,
Emeritus Professor of Child Psychiatry, Institute of Child Health, London
<EM>27, St. Albans Road, London, NW5 1RG, London</EM>
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Re: Gillberg: A further defence

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<TD><FONT face="" size=-1><!-- article ID: 335/7616/370 -->
I write as a colleague of Christopher Gillberg whom I have known over the past twenty years. I had heard of the difficulties that he had been experiencing before reading Jonathan Gornall’s article but had not realised the full extent of the hostile attacks that had been made on him and his work.
Professor Gillberg’s critics believe that children with Attention Deficit Hyperactivity Disorder (ADHD) or the strongly overlapping condition, Deficits in Attention, Motor Control and Perception (DAMP) are just normal children who are unusually active and distractible or ‘wayward’. It is indeed well established that children who are diagnosed with ADHD fall at one end of a continuum. There are many well-recognised medical conditions such as obesity and hypertension in which this is also the case. But surely a child of ten weighing 70kg requires medical diagnosis and treatment as would a man of 40 with a blood pressure of 200/130. The fact that their disorders fall at one end of a continuum does not mean they can be treated as just a bit fat or just a bit hypertensive. Similarly children diagnosed with ADHD are not ‘just wayward’. Those with this diagnosis, If severely affected, are often excluded from school because of behaviour difficulties and have major problems with their learning and relationships. If they are not severely affected they are not treated with medication. The prevalence of the disorder that Professor Gillberg has found is in line with that found in many American studies, although British estimates are rather lower. Further the fact that ADHD and the closely allied condition DAMP that Gillberg has described have an important biological basis is now well established by genetic, neurophysiological and neuropharmacological studies.
The poor outcome for these children that appears to be the central concern of his critics has been confirmed in numerous other studies. Reviewing the literature in the standard textbook of child and adolescent psychiatry, Schachar and Tannock 1 conclude ‘compared with their non-AD- HKD peers, previously affected persons are at approximately five times greater risk for substance abuse (tobacco, alcohol, illicit drugs), antisocial behaviour (aggression, trouble with the law, admission to juvenile facilities) and other psychiatric disorders such as depression and anxiety….Academic and educational problems persist into adolescence; by the time they are adults, hyperactive children have completed significantly less schooling and hold lower-status jobs than their non- hyperactive peers’.
In his rapid response Janne Larsson refers to ‘biological psychiatrists’. Although there are certainly child and adolescent psychiatrists whose particular research interest is in biological factors influencing behaviour, I know of no psychiatrists who, in their clinical work, have an exclusively biological approach. When I was in clinical practice I treated about one child in twenty with medication. Mostly I used psychological and social therapies. Did this make me a biological psychiatrist? In the 1980s I conducted a clinic for children with ADHD using a dietary approach to management. We carried out two controlled clinical trials. Did this work, using a ‘natural’ but also a physical treatment make me more or less of a biological psychiatrist? The question is meaningless. Incidentally my case records made during the trials contained much personal information about the families of the patients we treated including, for example, marital problems, parental alcoholism and criminal behaviour. If I had been ordered by a court to make these data available to other researchers as a result of clearly uninformed and prejudiced concerns I should have been extremely reluctant to do so bearing in mind the conditions of confidentiality under which they had been obtained. I would probably not have destroyed the data, but if my colleagues had chosen to do so I would not have been surprised or critical of them. I have to admit I would probably have been relieved they had extracted me from a major ethical dilemma.
Most, if not all child and adolescent psychiatrists are well aware of the dangers of inappropriate medicalisation of what is in effect normal behaviour, another error for which Professor Gillberg is condemned. It would be misleading to suggest that inappropriate medicalisation never occurs; indeed in some countries, especially those with a commercialised health care system, it is regrettably common. But, in my view, this is not an error into which Professor Gillberg has fallen. He is a widely respected figure in his field who was the first Editor-in-Chief of a peer- reviewed journal, European Child and Adolescent Psychiatry. The title of the very first paper in the journal he edited was ‘Psychosocial Stressors: Concepts, Causes and Effects’ - hardly an indication of an editor with an exclusively biological approach.
Finally, it is perhaps inevitable that the fact that members of his Department destroyed data which would otherwise have had to be made available to outside people will raise suspicions that some of his data had been falsified. Given the undertaking that his Ethics Committee had insisted he make to his research subjects before interviewing them, I find the destruction of the data quite understandable without any need to invoke the possibility of fraud. Further, Professor Gillberg’s findings, especially in relation to outcome, are largely, if not entirely in line with those others have obtained. If his findings were unexpected or he was making claims for entirely new discoveries there might be some reason to suspect fraud, but this is not the case. Indeed if he had claimed that the children with DAMP had a good prognosis, I would have been much more inclined to suspect fraud.
I am left with a strong impression that he has been the victim of an attack motivated by an ideology that is generally hostile to medical investigation and diagnosis, an ideology that might well turn its attentions elsewhere. Of course, doctors too have their own ideology and it would be wrong if this were immune to criticism.
1 Schachar S, and Tannock R. Syndromes of hyperactivity and attention deficit. In: Rutter M. Taylor E. eds. Child and Adolescent Psychiatry, Fourth Edition: Oxford: Blackwell Publishing, 2002, 399-418.
Competing interests: None declared</FONT>
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September 5th, 2007, 11:07 pm #9

<DIV id=LegacyContent>
<P id=slugline>BMJ&nbsp;&nbsp;2007;335:370-373&nbsp;(25&nbsp;August), doi:10.1136/bmj.39304.486146.AD

Feature
<H2 class=sertitle>Research ethics</H2>
Hyperactivity in children: the Gillberg affair
<DIV class=Credits>
<STRONG>Jonathan Gornall</STRONG>, <EM>freelance journalist</EM></STRONG></SUP>
</DIV>
London

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<SPAN id=em0>[url=mailto:Jgornall@mac.com]Jgornall@mac.com[/url]</SPAN>
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<P id=article_remark>What drove members of a highly respected psychiatric research<SUP>
group to defy the Swedish courts and destroy 15 years' worth of irreplaceable data? A decade after the Gillberg affair began, Jonathan Gornall examines the facts


Over one weekend in May 2004, three researchers in the University of Gothenburg's department of child and adolescent psychiatry shredded tens of thousands of documents, destroying all data from a 15 year longitudinal study following 60 Swedish children with severe attention deficit disorders.
What became known as the Gillberg affair began in 1996, at a community summer party on the Swedish island of Resö. Among the guests were Leif Elinder, a paediatrician recently returned to Sweden after several years spent working abroad, and Christopher Gillberg, professor of child and adolescent psychiatry at Gothenburg University.
The men had known each other since childhood, when they had met on the island most summers. Professor Gillberg had since become a world expert in autism and attention deficit disorder and a leading proponent of deficits in attention, motor control, and perception (DAMP), a Nordic concept developed in the 1970s to describe a combination of hyperactivity, lack of attention, and clumsiness and later regarded as a subcategory of attention deficit hyperactivity disorder.
What was said at that party depends on whom you ask, but both men agree they spoke briefly about Professor Gillberg's work, that Dr Elinder wanted to meet to discuss the work further, and that he was rebuffed. Dr Elinder says Professor Gillberg wasn't interested; Professor Gillberg says he simply didn't have the time.

Professional disagreement
While working as a paediatrician in Hamilton, New Zealand, Dr Elinder had developed doubts about the diagnosis and treatment of children with behavioural problems and he hoped to discuss this with Professor Gillberg. "We saw many wayward kids," he said, "and I felt that people expected me to label them, to give them a diagnosis, and treat them with Ritalin or amphetamines." At first, he said, "I just followed the trend, but I became sceptical."
The following March, Dr Elinder read a newspaper article cowritten by Professor Gillberg, which declared that 120 000 Swedish children (10%) had some kind of neuropsychiatric problem, including but not limited to attention deficit disorders and Asperger's and Tourette's syndrome.1 "We are talking about a real waste of human resources," Professor Gillberg wrote, appealing for more awareness among teachers of these children and their problems. "Most things in life you can as an adult compensate for, but a ruined self-esteem and a feeling of being useless can never be repaired completely."
Professor Gillberg's estimate of the size of the problem was in step with mainstream psychiatric thinking. America's surgeon-general stated in 2001 that in the US "1 in 10 children and adolescents suffer from mental illness severe enough to cause some level of impairment."2 Dr Elinder, however, thought Professor Gillberg's view was "absolutely wrong. Of course there is such a thing as wayward children, but you cannot diagnose an inborn, neuropsychiatric defect."
In an article published shortly afterwards in the Swedish Medical Journal, Dr Elinder questioned Professor Gillberg's 10% figure. In his view, "cultural handicaps" were being wrongly classed as medical conditions.3
Professor Gillberg's article also caught the attention of Eva Kärfve, an associate professor of sociology at Lund University. She had become more aware of attention deficit disorders, she says, when she introduced the last two of her five children to kindergarten. "I found that those working in pre-schools were suddenly talking in medical terms. Ten years earlier I had never heard this. Now they were saying, ‘Has that child a defect, a dysfunction?' They were not talking about family life, a child's emotional environment, like they used to do. I felt I had to look into this."
Her concern, she says, was that such diagnoses had "a flavour of degeneration theory—that there are people who are right and people who are not. I felt it was a political movement pretending to be scientific."

Degrees of difference
It wasn't long before Professor Kärfve and Dr Elinder joined forces and, when Professor Kärfve began work on a book attacking Professor Gillberg's work, the paediatrician contributed a chapter. The book, Brain Ghosts—DAMP and the Threat to Public Health, published in 2000, suggested that the purpose of the diagnosis of DAMP was "to achieve no other permanent change than segregation."4
The claim outraged Professor Gillberg's camp, which accused Professor Kärfve of lies and misrepresentation and protested to Lund University that her book was "the opposite of what was true."
Professor Gillberg's supporters also suspected that the documents that had formed the basis of Professor Kärfve's book had been supplied to her by a writer linked to the <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG> movement, which has a long standing opposition to psychiatry.5 6
The documents arose from a conference on attention deficit hyperactivity disorder that Professor Gillberg had attended in the autumn of 1999. Shortly afterwards, Janne Larsson, a journalist who writes for the Swedish chapter of the Church of <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG>'s Citizens Commission on Human Rights,7 applied to the National Board of Health and Welfare for access to the conference material. The delegates objected, maintaining the materials were working documents and not yet public property and the board rejected the application. However, a spokesperson for the board confirmed that Mr Larsson had won a court order granting him access.
Professor Kärfve originally told me that the documents from the conference had been posted to her anonymously by what she assumed to be a disillusioned insider at the board. Later, however, in an email dated 5 July 2007 she conceded: "Larsson did send me the same material, but somewhat later." She had, she insisted, "never used anything sent to me by him." Mr Larsson declined three invitations to comment.
Two months after the publication of Professor Kärfve's book, the Journal of the American Academy of Child and Adolescent Psychiatry published a follow-up of the participants in the Gothenburg study at the age of 22.8 The paper reported that 58% of 55 participants with attention deficit disorder, none of whom had received stimulant treatment, had developed personality disorders, committed serious crimes, or misused drugs or alcohol. This compared with 13% in the control group.
Professor Gillberg discussed the findings at the annual meeting of the Royal College of Psychiatrists in London in July 2001. "I was shocked," he told the conference. "These children are so much worse off in terms of education and employment than the general population. We must learn that all these children and adults are individuals and changes in attitude are more important than treatment."
The sentiment was at odds with the by now popular media view of Professor Gillberg as someone who would like to give drug treatment to all Sweden's children. Although he shares the common professional view that it is "beyond doubt that central stimulants ameliorate basic symptoms" of attention deficit disorder, Professor Gillberg is also on record as stating that drugs should not be used "unless other avenues of intervention have been entered first."9

Accusations of misconduct
Professional debate over the possible overdiagnosis of conditions such as attention deficit disorder and overuse of stimulants in their treatment is nothing new.10 11 But in 2002 Professor Kärfve and Dr Elinder took the debate to another level, accusing Professor Gillberg and colleagues of research fraud and launching a series of applications to gain access to the raw data behind the Gothenburg study.
After the experience with data from the 1999 conference, Professor Gillberg's group was adamant they would not release them. As two of Professor Gillberg's Gothenburg colleagues, Elias Eriksson and Kristoffer Hellstrand, were to put it later in an appeal to the Chancellor of Justice, "The important thing is not how Kärfve and Elinder would have handled the information, but that Gillberg could not guarantee to the participants that the information would be handled correctly . . . much of the information they chose to propound in the media has been highly misleading or untrue."
They added: "One can attack a researcher for carrying out poor research. But when one accuses someone of deliberate dishonesty one has exceeded a clear boundary."
Professor Kärfve led the charge, writing to Professor Gillberg and colleagues in February 2002 to request access to the individual records behind all five phases of the group's longitudinal study. She was refused, on the ground that the material was confidential, and she took the case to the Administrative Court of Appeal.
On 13 April Dr Elinder wrote to Bo Samuelson, then vice chancellor of Gothenburg University, demanding an investigation to determine "whether good ethical standards of research" had been adhered to. "How can the scientific community be persuaded that the children who were examined in 1978 were identical to the young adults who were examined in 1993?"
Dr Elinder's request was rejected by the university's ethics council, but three weeks later, Professor Kärfve demanded an inquiry, claiming: "The disposition and design of these studies entertain certain misgivings" giving rise to questions of "manufacturing and forgery of data and sources."
Like Dr Elinder, Professor Kärfve seemed to have no evidence of forgery, but only suspicions. These included surprise at the low drop-out rate, a subjective disagreement with "The treatment of the finding of ‘depression' as a variable in the judgment of poor outcome," and cynicism about whether the psychiatrists who had made follow-up diagnoses throughout the study had been truly blind to the participants' original diagnosis. As the university's ethics council commented in a response on 24 February the following year, "Several of Kärfve's critical comments about the article have nothing to do with scientific misconduct, but rather deal with interdisciplinary differences of views . . . which Kärfve regards as fraud." The researchers had "put in a lot of effort to make the drop-out rate as low as possible" and the council concluded that Kärfve's petition "does not prove that Rasmussen-Gillberg's research is not following good scientific conduct."

An underlying motive?
The attacks continued, with Dr Elinder demanding access to the material on 9 July. Shortly after this shadow of <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG> crossed the story again.
Professor Gillberg's group has always claimed that in the autumn of 2002, at the height of the battle to gain access to their data, Professor Kärfve attended an anti-psychiatry <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG> conference in Germany. She admits attending the meeting, but has maintained that she did so only as an observer and in her role as a sociologist. <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG>, she said, was a "scary" movement about which she had written critically.
However, a circular for the conference, "International hearing on psychiatry labeling and drugging children," listed Professor Kärfve as a participant, alongside seven other speakers, including the presidents of the American and Italian branches of <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG>'s Citizens Commission on Human Rights. Furthermore, Nicola Cramer, a spokesperson for the German branch, told me that although to her knowledge Professor Kärfve did not belong to the <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG> church, she had been "one of many guest speakers who took part in this hearing. She spoke about the Swedish psychiatric disorder DAMP."
Professor Kärfve responded in an email that she "did not lecture or ‘associate' at that meeting." She said that she did talk to Nicola Cramer, but did not talk publicly, apart from giving a few replies at what she later discovered to be "a strange kind of press conference."
She could not recall how she had learnt about the meeting but was adamant that she had given no lecture there and, in any event, "I never felt it could have done me any harm to talk to people . . . there is always someone you can reach."
Professor Kärfve was not the only sociologist at the conference. She was accompanied by Thomas Brante, the head of her research department at the University of Lund, who has publicly backed Professor Kärfve's actions in the Gillberg affair. Professor Kärfve wrote in the same email that he could confirm that she was there to investigate <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG> and not to lecture.
Whatever the truth or wisdom of Professor Kärfve's association with <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG>, the church has eagerly exploited the Gillberg debate and Professor Kärfve's role in it. In an online article in 2005, the Swedish branch of the commission boasted of having conducted a lengthy campaign against Professor Gillberg,12 while online the international commission quotes Professor Kärfve as saying: "The claim that ADHD is biologically caused or stems from a metabolic disturbance in the brain is not scientifically founded in any way."13
An account of the Gillberg affair also features in the current issue of Freedom, a magazine published by the Church of <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG> International.14 The article seems to be a collection of extracts from previously published sources, none of which is attributed.
One quote, from Professor Brante, was taken from a rapid response he submitted in 2004 to a BMJ article about the destruction of Professor Gillberg's data: "The most rational . . . course of action would be to withdraw all research relying on the [Gillberg] data."15
Another passage from Brante's BMJ response did not appear in the Freedom article. "Claims have been made that Professor Kärfve is a scientologist, that she runs a personal campaign, vilifying Professor Gillberg," wrote Brante. "These are mistaken . . . <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG> is a church and Kärfve has no links whatsoever to it." There was, however, no mention of the trip he and Professor Kärfve had made to Munich.

Confidentiality
The year 2003 saw a series of court actions, orders, and appeals as Professor Kärfve and Dr Elinder fought to get their hands on the material, and Professor Gillberg and colleagues resisted. The study participants and their parents had opposed the release of the material, said the group, and the volume and nature of the data made anonymising impossible.
Professor Gillberg had personally guaranteed confidentiality to all the participants. One of the documents he had signed, on the instruction of the university's ethics committee, assured them that "you will never be registered in public data records of any kind and the data will be treated so that nobody apart from those of us that meet you and have direct contact with you will be able to find out anything at all about you."
Furthermore, Professor Gillberg asserts that his refusal to part with the material was in accordance with the World Medical Association's ethical principles for research, as stated in the Declaration of Helsinki.16
His stance divided Swedish academe. More than 300 scientists, including Arvid Carlsson, Sweden's most recent Nobel Prize winner, signed a petition supporting him; others opposed him. Professor Gillberg was even criticised for having given assurances of confidentiality in the first place—a criticism made in the pages of his university's magazine by Björn Thomasson of the Swedish Research Council: "The problem is that Professor Gillberg has given assurances that he evidently had no right to give. One cannot promise that the material will not be scrutinised by someone outside the research group. He has simply gone too far."17
Gunnar Svedberg, vice chancellor of Gothenburg University, summed up the ethical dilemma facing Professor Gillberg and colleagues in a letter to Professor Kärfve and Dr Elinder in September 2003: "Professor Gillberg refers [to] the reasons for his refusal, among them customary ethical standards and statutory requirements that apply to medicine and to research. A large number of researchers at different universities in Sweden have written to me to state that ethical reasons prevent the release of the material concerned to outsiders without the consent of the participants."
The legal system, however, paid no heed to Professor Gillberg's dilemma. Twice in 2003 the Supreme Administrative Court rejected his applications to appeal the decisions allowing Professor Kärfve and Dr Elinder access to the data on the ground that "he lacked any interest in the case that could be acknowledged in law as entitling him to apply for a rehearing of the issue."18

Destructive conclusion
The final act began on 4 May 2004, when the court overturned a last attempt by the university to demonstrate that Professor Kärfve and Dr Elinder were not acting as proper researchers and, therefore, were not entitled to examine the documents. On 6 May the university informed Professor Gillberg's department that it must make the data available. In an email reply the same day, Professor Gillberg, working in England, declared he would not cooperate. Three days later, Professor Gillberg's three colleagues informed the university's vice chancellor that they had destroyed all the data.
On 27 June 2005, just over a year after the material was shredded, Professors Gillberg and Svedberg were convicted of misuse of office. Professor Gillberg was given a conditional sentence and both men were fined and ordered to pay costs.19 Professor Gillberg's application to appeal was rejected.
On 26 January 2006, Professors Eriksson and Hellstrand, two of Professor Gillberg's colleagues at Gothenburg who had not been part of his research group, wrote to Sweden's Chancellor of Justice to seek a judicial review. The legal process, they said, had been "exploited in the most wide-ranging slander campaign heard in current Swedish debate. That has meant that the public have been led to believe that Professor Gillberg and co-workers have committed research fraud . . . The manner in which public officials contributed to the success of this campaign deserves analysis." The application is under consideration.
Two months later, psychiatrists Peter Rasmussen and Carina Gillberg (Professor Gillberg's wife and one of the main researchers in the group) and unit administrator Kerstin Lamberg were convicted of destroying government documents and fined.
None of the main protagonists in the affair has escaped unscathed. In 2003, two of Professor Gillberg's colleagues accused Professor Kärfve of "scientific dishonesty" in her book and demanded an investigation by her university. They also suggested she might be linked to the Church of <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG>. Initially, Lund University rejected the complaint. Dr Rasmussen, one of the three who had destroyed the research data, then appealed to the National Agency for Higher Education, which agreed that the university should have examined the allegations in greater detail.
In March 2005, Lund invited the Swedish Research Council to evaluate the material, but the investigation stalled. "It took almost a year to find two experts who were . . . willing to take on the task," says Björn Thomasson, the council officer who had criticised Professor Gillberg and who headed up the investigation into Kärfve. "It was a very hot potato."
Two experts were finally found—Denny Vågerö, a professor of medical sociology and director of the Centre for Health Equity Studies at Stockholm University, and Jan-Otto Ottosson, a professor of psychiatry at Gothenburg—and by March 2006 they had made their report.
Although Professor Ottosson felt that some of Professor Kärfve's criticisms were unjustified and "sometimes based on misunderstanding," and that the tone of Brain Ghosts was "confrontational" and "insinuating," both men agreed that the book was polemical criticism rather than research and that, therefore, Professor Kärfve could not be guilty of breaching good research practice.
The report added that the council's review team had, therefore, taken no position on whether there was any basis for Professor Kärfve's criticisms. Furthermore, it had not concerned itself with the allegation that she was allied to <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG>.
Although exonerated, Professor Kärfve, who continues to teach at Lund, believes the accusations against her put an end to funding by the Swedish Research Council. "They will always deny it, but I realise I will never get grants any more," she says.
The council declined to comment, but confirmed that grant applications from Professor Kärfve had been rejected in 2001, 2002, 2005, and 2006.
She would not, however, hesitate to do the same again: "I am totally convinced I was right. The campaign against me made me more convinced that this was worth looking into . . . If they were conducting this research in a proper manner, they wouldn't have treated me like they did."
Although Dr Elinder continues to work for the Resource and Knowledge Centre of the Social Services in the city of Uppsala, he has parted company with the Försäkringskassan, the Swedish social insurance agency, for which he had worked as a medical adviser. The same views that led him to attack Professor Gillberg isolated him within the agency.
"I was sceptical about giving people permanent sick leave for vague diseases," he said. In Sweden, half a million people of working age were receiving benefit while not working, and "many of them don't have any specific symptoms apart from their own feelings."
Robin Lapidus, a spokesperson for the agency, confirmed that Dr Elinder and the organisation had terminated his employment by mutual agreement in February 2006. They had had "opposing views about assessing the right to sickness benefits. Among other things he had difficulty with relating incapacity to work to so-called ‘symptom diagnoses.' Doctors specialising in social insurance counsel the social insurance agency on medical matters. They do not make decisions."
Professor Gillberg's work continues. Research funds have continued to flow his way, and in November the Swedish Research Council awarded him a record sum for three years of study into autism.
The affair has, however, left deep scars. Professor Gillberg has lodged a grievance against the Swedish state with the European Court of Human Rights. The court cannot overturn Professor Gillberg's conviction, but it can rule that the state's actions were wrong. Professor Gillberg's five page submission to the Court of Human Rights sums up the dilemma in which he and colleagues found themselves and the sense of injustice he still feels:
"In my view," wrote Professor Gillberg, "it is unreasonable that I am first obliged to give strict promises of confidentiality by the State in order to conduct medical research, then . . . I am ordered by the State to break hundreds of promises of confidentiality . . . then I am indicted by the State and, ultimately, am sentenced as a criminal by the State because I had not broken those promises of confidentiality that I had the State's instruction to give.
"Something is clearly wrong in this chain of events, but it is difficult to see how the error can be mine."
</SUP>
<SUP>

</SUP>

<HR align=left width="30%" noShade SIZE=1>
<A name=""><!-- null --></A>Competing interests: None declared.<SUP>

<A name=""><!-- null --></A>Provenance and peer review: Commissioned, peer reviewed.

References

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<LI value=7></SUP>Larsson J. Legaliserar Ritalina igen efter 38 år. Mänskliga Rättigheter 2006;1. www.kmr.nu/tidn.htm<!-- HIGHWIRE ID="335:7616:370:7" --><!-- /HIGHWIRE --><SUP> <A name=REF8><!-- null --></A>
<LI value=8></SUP>Rasmussen P, Gillberg C. Natural outcome of ADHD with developmental co-ordination disorder at age 22 years: a controlled, longitudinal, community-based study. J Am Acad Child Adolesc Psychiatry 2000;39:1424-31.<!-- HIGHWIRE ID="335:7616:370:8" -->[CrossRef][ISI][Medline]<!-- /HIGHWIRE --><SUP> <A name=REF9><!-- null --></A>
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Joined: January 1st, 1970, 12:00 am

September 5th, 2007, 11:29 pm #10


Its obvious from his response to his own article that he is obfuscating from the point (being the scientific misconduct or not of the Gillberg affair) and also clear from his response that he doesn't know whether Janne is or is not a scientologist:

http://www.bmj.com/cgi/eletters/335/7616/370#175765

<EM>I welcome the response from Janne Larsson. I was sorry that he did not take advantage of several opportunities to talk to me while I was researching my article. In fact, he ignored three invitations to be interviewed and to clarify his role in proceedings. </EM>
<EM>He states that "this affair is not a matter of religious beliefs or who can have talked to whom at some time in history", but of course when it comes to his role, and his motives for having taken the actions he took, his beliefs are absolutely central - both to events and to the question of his credibility and objectivity as a writer in this field. </EM>
<EM>Mr Larsson signs himself as a "writer - investigating psychiatry". I am unable to say whether he is a Scientologist - he has been asked and, I notice, still fails to say - but it is a fact that he writes for Scientology publications. It's a reasonable assumption that he shares at least some of Scientology's core "values". </EM>
<EM>One of these "values" is the notion that psychiatry is an evil that must be destroyed. It would help others to judge the worth of Mr Larsson's comments and "revelations" about psychiatry if he could confirm whether or not this is a view shared by him. If so, then it would be easier to know what to make of many of his comments, including the startling disclosure that "When key biological psychiatrists in 1999 met with the National Board of Health and Welfare to plan for the diagnosing and drugging of large segments of the child population in Sweden, they had expected their plans to be hidden from public view". </EM>
<EM>Perhaps Mr Larsson would like to take this opportunity disclose his commitment to Scientology - and, if he is prepared to admit that he is a member of that organisation, to reveal the extent of its role in the campaign to discredit Professor Gillberg? </EM>
<EM>Competing interests: Author of article "</EM>

<EM></EM>&nbsp;

This presumably&nbsp;means that Gornall is in that defensive group of&nbsp; people who, whenever questions are raised about scientific misconduct, accuse all those who question the misconduct of being 'scientologists' or 'anti-psychiatry' or 'anti-drug' &nbsp;rather than investigating and debating the <STRONG>ISSUE OF&nbsp; MISCONDUCT</STRONG>.&nbsp; Its&nbsp;the&nbsp;<STRONG>MISCONDUCT</STRONG> that people are anti. Without the <STRONG>MISCONDUCT</STRONG> then people would have nothing to be 'anti' about.&nbsp; DUH!

For the <STRONG>BMJ,</STRONG> a medical journal, to take part in that is just so unethical and unprofessional.

And in <STRONG>RED!&nbsp; LOL!</STRONG>&nbsp; Why not emphasize the questions raised about the<STRONG> issue </STRONG>itself in red?&nbsp; They're far more important.

A surprisingly poor quality article, and a poor show by the BJM in not only publishing it but adding the colour.

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