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From: kathy@safermedicines.org
To: complaints@pcc.org.uk
Sent: Monday, March 01, 2010 11:12 AM
Subject: Complaint against the Sunday Times magazine

Dear Sir/Madam

I am writing to complain about an article that was published in the Sunday Times magazine on 10th January 2010. The article, by Richard Girling, was called "How would you feel if you were an animal caged for scientific testing?" and is available online here: http://www.timesonline.co.uk/tol/news/environment/article6978955.ece.

The article breached the Editors' Code of Practice on: 
  


1

Accuracy

 

i) The Press must take care not to publish inaccurate, misleading or distorted information, including pictures.
iii) The Press, whilst free to be partisan, must distinguish clearly between comment, conjecture and fact.

Summary of complaint

1) The article is inaccurate in many ways but the most important inaccuracy is its central claim, on which its raison d'etre is based, that deep brain stimulation as a treatment for Parkinson’s disease was pioneered in monkeys (paragraph 12). In fact, the technique was pioneered in patients, as shown by an article in New Scientist, which I have attached with the relevant parts highlighted in red, showing that the technique was pioneered in a patient in 1987.

2) The article is misleading in that its subtitle: "With animal experiments on the increase, we enter Britain’s secret labs to put the scientists’ rationale to the test" claims to examine critically the scientific case for animal testing. Yet the article does no such thing. Instead, it presents the case for animal testing as beyond criticism, as summarised in paragraph 14: "Monkeys versus Mark? ... Mark wins, by a distance."

3) The article is partisan whilst presenting itself as neutral and balanced. Moreover, it does not distinguish clearly or at all between comment, conjecture and fact. On the contrary, it presents the author's personal opinions in the guise of facts, whilst omitting to mention that there are many scientists who would challenge them. The net result is an article that misrepresents its own stated purpose of putting scientists’ rationale to the test and misrepresents an issue (the medical value of animal experimentation) which could not be more important for medicine as nothing more than a dispute over animal rights. This is the antithesis of objective journalism.

I am making my complaint in the interests of the public, as the director of an independent patient safety organisation, Safer Medicines Campaign. Our concern is that patients are frequently harmed and even killed by an over-reliance on animal experimentation, which can be seriously misleading when applied to humans. The evidence for this is incontrovertible. Yet public opinion on the medical value of - and thus the justification for - animal experimentation is influenced strongly by its portrayal in the media. This is why it is so important that such portrayal is accurate.

Rather than complaining to the PCC in the first instance, I contacted the Sunday Times magazine, pointing out the breaches of the Code of Practice and offering to supply an article to help rectify the damage done by erroneously claiming that an almost miraculous treatment for Parkinson's disease would not have been possible without experiments on monkeys.

My correspondence with the magazine's Deputy Editor is [here]. I am disappointed that Ms Galvin appears to have used the opportunity to tell me that she would consider my proposal as a means to brush off my complaint. After six weeks, she passed my complaint on to the Letters Editor, who has now said, "We do not believe that there is any need to publish a correction." My correspondence with the Letters Editor is [here].

The unarguable fact is that deep brain stimulation as a treatment for Parkinson’s disease was pioneered in patients. Richard Girling himself acknowledges this fact in the attached correspondence with the Letters Editor. Ms Janmohamed now says: I think the problem seems to be with “discovered” and “pioneered”. However, as any dictionary will reveal, the two words mean the same thing. The technique was discovered in humans. Whether or not it was developed and refined in monkeys is immaterial. In fact, it was developed and refined in humans before experiments in monkeys were embarked upon - but that is beside the point. The crucial point here is that the words in the article: "pioneered in monkeys" are not true.

The significance of this point cannot be overstated. It is hugely significant for the article itself; indeed it is the very foundation on which the article is based. The author's personal "agonising dilemmas", as well as his indignation that, as he sees it, some opponents of animal experimentation would reject the benefits of experiments on monkeys, depend absolutely on the veracity of the claim that this important medical breakthrough was pioneered in monkeys. The significance of the point for readers is similarly huge. Few readers would choose the monkeys over Mark, given such a stark choice between, as Richard Girling put it, "the two guilts". However, since this medical breakthrough was actually made in humans, the agonising dilemma that pervades the article does not, in fact, even arise.

In conclusion, this article was based on an important inaccuracy, which was magnified through its use as the example on which the author's case in defence of the value of animal experimentation was built. Readers were misled, both literally and also symbolically, by this falsehood and the misrepresentation of the medical value of animal experimentation that followed from it, in the guise of an objective examination of the issue.

I hope that the Press Complaints Commission will oblige the Sunday Times to print a correction. I look forward to hearing from you.

Yours faithfully,

Kathy Archibald
Director
Safer Medicines Campaign


From: Becky Hales
To: kathy@safermedicines.org.uk
Sent: Wednesday, April 28, 2010 10:02 AM
Subject: Complaint 100832

Dear Ms Archibald,

I write further to your email of 2 April.

The Commission has now received an initial response to your complaint from the Sunday Times newspaper, a copy of which is attached to this email.

As you will see, the newspaper has explained – citing a selection of scientific research – that the surgical technique of Deep Brain Stimulation was not used to treat Parkinson’s in humans from the start. The editor has also provided a defence from the journalist concerned who maintains that the article was a balanced account of his experiences. The newspaper does not accept that the article is inaccurate.

It would appear that this matter might be best put to the Commission for its formal consideration under the Code. Of course, as this is only the first round of correspondence, I should be grateful to receive any further comments you may wish to make in light of the newspaper’s reply. In particular – given that the Commission’s primary aim is the resolution of all substantive complaints wherever possible – do please let me know any suggestions you have which would help to resolve this matter to your satisfaction.

I should be pleased to receive your response within seven days, or sooner, if convenient. Please do not hesitate to contact me if I can be of any assistance to you.

Yours sincerely,
Rebecca Hales
Complaints Officer
Press Complaints Commission


From: kathy@safermedicines.org
To: Becky Hales
Sent: Tuesday, May 04, 2010 9:44 AM
Subject: Re: Complaint 100832

Dear Ms Hales

Thank you for your email of 28 April. I would indeed be grateful for the Commission's formal consideration of my complaint under the Code.

Mr Tyrer is wrong to say that the New Scientist article I supplied is misleading. He misquotes and misrepresents Professor Benabid in his letter to you, and his "top-flight sourcing" of references from Barbara Davies is simply incorrect. In order to set the record straight, I have contacted Professor Benabid, who has supplied unequivocal proof of his momentous discovery, with a comprehensive list of references along with his comments (below).

It is clear from these references - particularly the two supplied in full - that DBS has been used to treat movement disorders including Parkinson's since Prof Benabid's pioneering discovery in 1987. Barbara Davies is simply wrong to credit work in monkeys in 1992, since Prof Benabid's work in humans pre-dates this by five years. As Prof Benabid points out (below), 1997 was clearly a misprint and should have said 1987, as it did a little later on in the same paper.

In light of all this, there can be no further denial of the fact that DBS for Parkinson's disease was pioneered in humans, not monkeys. Thus, Richard Girling's article was fundamentally inaccurate. As I explained in my complaint, the significance of this point cannot be overestimated. It is therefore extremely important that adequate reparation is made.

Richard Girling's response appears to address a different complaint from mine. I did not characterise anything he wrote as "conjecture". One of my complaints was that the article presented the author's personal opinions in the guise of facts (a breach of the Code), whilst omitting to mention that there are many scientists who would challenge them. Thus the article is dishonestly presented as a factual report, when it is actually an opinion piece. This complaint still stands.

I also maintain that the article is misleading in that its subtitle: "With animal experiments on the increase, we enter Britain's secret labs to put the scientists' rationale to the test" claims to examine critically the scientific case for animal testing. Yet the article does no such thing. The author cannot simply dismiss this complaint by re-inventing the article's stated purpose after the event and saying that "it was a piece about animal welfare, not the efficacy of animal testing per se." The article itself claims in its very title to be about the efficacy of animal testing per se.

Mr Girling says: "The experts who responded to the piece, both before and after publication, all commented on its fairness and balance. This correspondence is available to view if required." I would like to view this correspondence and would be very grateful if you could obtain copies.

In summary, I maintain that the article breaches the Code in three respects: it is inaccurate, it is misleading and it is partisan whilst presenting itself as objective and balanced. I would be grateful for the Commission's formal consideration of my complaint under the Code.

Thank you for inviting my suggestions for a satisfactory resolution. I would suggest that publication of a prominent correction, although welcome, would not constitute sufficient reparation for such an incorrect and misleading major feature article. I believe that publication of an equivalent-length article from Safer Medicines Campaign (in addition to a prominent correction) is the only way to resolve this matter satisfactorily.

I look forward to hearing from you.

Yours sincerely,

Kathy Archibald

Extracts from Professor Benabid's correspondence with me:

You are right I discovered serendipitously DBS at high frequency in 1987 during a thalamotomy for essential tremor.

When a discovery starts being claimed by others it means the discovery is valuable.

1: My discovery was Deep Brain Stimulation at High Frequency (around 100Hz and higher): this was a breakthrough because at about 100Hz, and higher, stimulation mimics the effect of a lesion (which was the classical method at this time to treat movement disorders, mostly in the Thalamus (Thalamotomy) or in the Pallidum (Pallidotomy). This is why I proposed it as a surgical method to replace in all situations the lesioning (also called ablative) surgery. This was quite quickly generally accepted (because it is more efficient, safer, and  reversible) and it has become a surgical breakthrough because of its surprising efficiency.

2: I made this discovery in the first months of 1987, in a serendipitous manner, during a thalamotomy for movement disorders (the first patient had Essential Tremor, the following patients were Parkinsonian, and later we also treated dystonias, as well as tremor in multiple sclerosis patients. The first case were reported in 1987 in the following paper: AL Benabid et al, Applied Neurophysiology, 1987 (reprint attached), and then in a large number of journals, including the Lancet in 1991 (which is 6 years before 1997!) (see reference list A). In Current Opinion 2003, (also attached) there was actually a misprint in the first line of the abstract, but on the second column of the first page, about the middle of the page  I wrote “Since 1987, high frequency stimulation (HFS) in the basal ganglia has been proven to produce the same effects as lesioning”,  which refers to the 1987 paper. In all articles where I described how this happened, I say, for the sake of exactness, that it was during a thalamotomy for essential tremor (which is not Parkinson’s disease of course) but the next patients and many others were Parkinsonian. 

3: I was the first person to make this discovery. Namely I clearly established the tight relationships between the high frequency and the lesion-like (which does not mean a lesion is created) effect of high frequency, still not fully explained.

Here is History as I saw it, and I have no doubt that many, for many reasons, want to rewrite it.


From: Becky Hales
To: kathy@safermedicines.org.uk
Sent: Thursday, June 17, 2010 8:46 AM
Subject: FYI - additional information regarding your complaint

Dear Ms Archibald,

Please find attached correspondence from the newspaper showing support for the animal testing article. I do apologise for not forwarding this to you at an earlier date.

The Commission is due to consider this complex complaint this week. If you have anything to add in light of the attached emails, do let me know.

Kind regards,
Rebecca
Rebecca Hales
Complaints Officer


From: kathy@safermedicines.org
To: Becky Hales
Sent: Monday, June 21, 2010 8:48 AM
Subject: Re: FYI - additional information regarding your complaint

Dear Rebecca

Thank you for forwarding the correspondence in support of the animal testing article.

The fact that three organisations supportive of animal testing were so pleased with the article shows clearly that it favoured their position. Barbara Davies - Communications Director of the UK's lobby group for animal testing - was pleased that the author "came over as open-minded". That this was a carefully orchestrated illusion is revealed by the involvement of the three groups early in the gestation of the article. Their correspondence adds further weight to my complaint that the article was partisan whilst presenting itself as objective and balanced.

However, the issue of bias was the third and least important of my complaints. My first and most important complaint was that of the central inaccuracy on which the article was based: that deep brain stimulation as a treatment for Parkinson’s disease was pioneered in monkeys. I have supplied conclusive proof that the technique was, in fact, pioneered in patients. Has the newspaper not responded to this point?

I am very concerned that you say (below) that the Commission is due to consider the complaint "this week" (ie. last week). Does this mean that it has already been considered; affording me no opportunity to respond, as you have invited me to do and as I have done, within two working days?

I would be grateful to know why I heard nothing at all for 31 working days after I supplied the above-mentioned conclusive proof, which has not been acknowledged, when your Complainants' Charter says: "We will aim to keep you informed of the progress of your complaint at intervals of no longer than fifteen working days".

I am also concerned that you describe the complaint as complex. I have to say that it appears quite straightforward to me: the article was based on a fundamentally inaccurate claim, whose inaccuracy I have proved beyond question. I hope that the Commission will not be dissuaded from such an irrefutable conclusion.

Kind regards,

Kathy


From: kathy@safermedicines.org
Sent: 22 June 2010 14:31
To: Becky Hales
Subject: Fw: FYI - additional information regarding your complaint Importance: High

Dear Rebecca

Please confirm you have received my email, thank you,

Kathy


From: Becky Hales
To: kathy@safermedicines.org
Sent: Tuesday, June 22, 2010 2:56 PM
Subject: RE: FYI - additional information regarding your complaint

Dear Ms Archibald,

Thank-you very much for your email.

I can confirm receipt of your message and can also make clear that when I said “this week” I meant within the next seven days (complaints are circulated every Thursday and yours will be prepared for the 24th).  I do apologise for not being clearer in my email.

The newspaper responded to your specific concern about deep brain stimulation in its first reply that was sent to you on 28 April.  I have received nothing further on this point except for the attached email in which the newspaper reiterates initial position and makes clear that it will not be publishing a correction at this stage.

We do aim to keep you informed of the progress of your complaint at intervals of no longer than fifteen working days, however this complaint has been slow to move forward due to the delay on the part of the newspaper (something which the Commission will consider when it reaches its decision on the matter).  There was little to report, but I apologise for not being in touch regularly.

If you have anything further to add in support of your position, do let me know.  Otherwise, I will next write to you following the Commission’s consideration of the complaints received against this article.

Kind regards and many thanks for your patience in this matter,
Rebecca


From: kathy@safermedicines.org
To: Becky Hales
Sent: Wednesday, June 23, 2010 2:40 PM
Subject: Re: FYI - additional information regarding your complaint

Dear Rebecca

Thank you for your email and explanation. I do appreciate that the delays have been caused by the lack of response from the Sunday Times. Thank you for sending their final reply, dated 1st June. Although I hope it is clear that the piece written by Craig Brierley is no defence against the unequivocal proof, supplied by Professor Benabid, of his momentous discovery, I would still appreciate the opportunity to explain to the Commission why this is so. My explanation will necessarily be brief, since I have such a short period of time in which to submit it.

The piece about DBS by Craig Brierley is a perfect example of an attempt to re-write history, in order for others to claim such a valuable discovery as DBS; precisely as Professor Benabid observed!

Bob Tyrer's claim that the document "makes clear that monkeys were crucial to the development of the DBS technique" is simply incorrect. The document merely claims (in its last sentence) that "the sub-thalamic nucleus as the optimal target for treating Parkinson's disease was identified in monkeys, not in humans". But that is not at issue!

The issue in question is whether the initial, pioneering discovery of the fact that DBS stops Parkinson's tremors was made in monkeys or humans. The unarguable fact is that it was discovered, as Professor Benabid recounted, complete with a comprehensive list of references from the scientific record, in his patients.

Nobody denies that DBS has been studied in monkeys since Professor Benabid's breakthrough discovery. But the momentous breakthrough itself was made in 1987 in a human patient. Craig Brierley's dates, given in his last sentence, of 1991-1995, are simply wrong, as the documented scientific record shows. I have previously supplied a reprint of Professor Benabid's paper, published in 1987, reporting his breakthrough. I would like to give the last words to Professor Benabid:  "You are right I discovered serendipitously DBS at high frequency in 1987 during a thalamotomy for essential tremor...
When a discovery starts being claimed by others it means the discovery is valuable... Here is History as I saw it, and I have no doubt that many, for many reasons, want to rewrite it."

I look forward to hearing from you after the Commission's consideration, which I'm still not entirely clear about whether it starts tomorrow or concludes tomorrow, hence my haste in sending this final comment before tomorrow.

Kind regards,

Kathy


Sent: July 5, 2010

PCC01
PCC02
PCC03


From: kathy@safermedicines.org
To: Becky Hales
Sent: Monday, July 26, 2010 3:47 PM
Subject: PCC decision re complaint about Sunday Times

Dear Ms Rebecca Hales

Thank you for your letter dated 5th July, enclosing the Commission's decision.

Thank you for your offer to provide further clarification of the Commission's decision. I would appreciate clarification of two points:

1) How did the Commission conclude that "the remedial action offered by the newspaper was sufficient as a response" to my complaint, when no remedial action whatsoever has been offered to me?

2) Did the newspaper actually say that they did not accept that Professor Benabid pioneered deep brain stimulation in 1987, after I had provided published proof that he did? Did they say that they would refuse to publish a correction, even after I had proved that Professor Benabid's success in humans predated by 5 years the 1992 monkey experiments cited by Barbara Davies? I have not seen this correspondence from the newspaper, although your Complainants' Charter states that the Commission will only consider material submitted by one of the parties to the complaint after it has been seen by the other party.

Furthermore, I must point out that the Commission is wrong to conclude that there was no breach of Clause 1 (Accuracy) of the Code and I hereby request that they reconsider this point.

To explain: as the Commission accepts, ultimately, a single point of fact was in dispute. The Commission accepts that Professor Benabid made the fortunate discovery of deep brain stimulation by accident in 1987 in a human patient. Indeed, since this is a fact, it was not possible for the Commission not to accept it. Yet your letter states that the newspaper did not accept it. Clearly, to dispute it, as the newspaper does, is to be wrong.

The Commission excuses this error on the newspaper's behalf by claiming that experimentation on monkeys had formed a vital part of the development of deep brain stimulation and that the technique had been adopted as a treatment for Parkinson's subsequent to its development and refinement in monkeys in the early 1990s.

Therein lies the Commission's error: these claims are incorrect and demonstrably so. Professor Benabid provided documented proof that deep brain stimulation has been used as a treatment for Parkinson's since 1987, i.e. before the experiments in monkeys had even begun. This is clear from the paper published in 1987, which documents 7 patients' successful treatment with deep brain stimulation. This proves beyond doubt that the technique was discovered in humans and used in patients from that moment forward: there was no question of waiting for results from monkeys before using the treatment in humans.

Therefore, the Commission must conclude that there was a breach of the Code on this point or be complicit in perpetrating a lie, the ramifications of which powerfully affect the public's perception of animal experimentation as a whole. I have made this point in previous correspondence but it is worth repeating here: Public opinion on the acceptability of animal experimentation – particularly its most controversial element, i.e. brain research in primates – is influenced overwhelmingly by the magnitude of its purported value to human health. Producing treatments for distressing disorders like Parkinson’s disease provides a powerful argument in defence of such controversial research. However, if such claimed successes are actually the fruit of research in humans, then such justification is utterly false.

Unless the PCC, like the Sunday Times, wishes to justify animal experimentation through misinformation, it has no alternative but to uphold my complaint, which rests on an indisputable point of fact.

Yours sincerely,

Kathy Archibald


From: kathy@safermedicines.org
Sent: 30 July 2010 08:49
To: Becky Hales; Scott Langham
Subject: Fw: PCC decision re complaint about Sunday Times
Importance: High

Dear Ms Hales and Mr Langham

I sent the email below on Monday but have had no acknowledgement of receipt, so am sending again. Please accept my apologies if you receive it twice.

Yours sincerely,

Kathy Archibald

From: Becky Hales
To: kathy@safermedicines.org
Sent: Friday, July 30, 2010 8:50 AM
Subject: RE: PCC decision re complaint about Sunday Times

Dear Ms Archibald,

Thank-you for your email.  I am sorry you are disappointed with the Commission’s decision and shall recall your file and examine the points you have raised.

I hope to be able to provide you with a substantive response on Monday.

Many thanks for you patience in this matter.

Kind regards,
Rebecca


From: Becky Hales
To: kathy@safermedicines.org
Sent: August 2, 2010

Dear Ms Archibald

I write further to my email of 30 July.

I note that you have contacted the Charter Commissioner with a complaint about my handling of the case.

Before the Charter Commissioner responds I thought it would be useful for you to have my reply to your email of 26 July.

I am sorry that you are disappointed with the Commission’s decision in this matter and are not satisfied with the way I handled your complaint.

In answer to your first question, the Commission concluded that the offer to publish a letter from one of the complainants was a sufficient response to the concerns that had been raised as the letter represented and opportunity to explain the discovery and development on DBS in greater detail and clarify the matter for readers.  Both you and the complainant who was offered the letter had voiced near identical concerns and had provided similar evidence supporting your arguments.  As a result, although there was no breach of the Code, the Commission decide that the issues you both identified within the coverage had been addressed through the offer to publish a relevant, critical letter.

I can also confirm that the newspaper did not accept that Professor Benabid pioneered deep brain stimulation in 1987 despite receiving all your correspondence, enclosures and the email from Professor Benabid himself.  I think I explained in my email of 22 June that the newspaper responded to your specific concern about deep brain stimulation in its first reply that was sent to you on 28 April and the Commission received nothing further on this point except for an email stating that the newspaper maintained its initial position and made clear that it would not be publishing a correction.

I note your argument that the Commission is wrong to conclude that there was no breach of Clause 1 (Accuracy) of the Code.   The Commission is always happy to reconsider its decision in cases where it has misunderstood the nature of a complaint or significant new evidence has come to light. However, on this occasion this would not appear to be the case as the Commission saw all correspondence and enclosures relating to your complaint and was aware of your position, as repeated in your email of 26 July.

The Commission’s decision makes clear that:

The following facts were not in dispute: Professor Benabid had made the fortunate discovery of deep brain stimulation by accident in 1987 while treating essential tremor in a human; the technique had been developed and refined in monkeys throughout the early 1990’s; deep brain stimulation has been subsequently adopted as a legitimate surgical treatment for Parkinson’s.
Given that experimentation on monkeys had formed a vital part of the development of deep brain stimulation, the Commission could not conclude that the reference to the technique being “pioneered in monkeys” was significantly inaccurate in such a way that would require correction under the terms of Clause 1 (ii).  The Commission took the view that the term “pioneer” has different meanings: for example, to initiate something or – as on this occasion – to develop something new.  In any case, the Commission was satisfied that the journalist had taken care to ensure the accuracy of the article by checking it against a number of sources in line with Clause 1 (i).  There was no breach of the Code on this point.

While I understand the points you are making, you do not appear to have identified anything further that would require the Commission to reconsider its decision.  I am sorry we could not be of more help on this occasion.

I will now pass your file on to the Charter Commissioner and I am sure he will respond in due course.

Yours sincerely,
Rebecca Hales


From: kathy@safermedicines.org
To: Charter Commissioner
Sent: Friday, July 30, 2010 11:13 AM
Subject: Request for scrutiny of PCC case 100832

Dear Sir Michael

I am greatly impressed by your willingness to recommend re-examination by the PCC of deserving cases and your view, which I share, that this is a proper role for the Charter Commissioner and one that should be recognised formally.

I hope you will agree that my complaint (Ref: 100832) is such a case. I understand that I cannot request a review of the PCC's decision simply because their decision is wrong. However, I believe that the way the complaint was handled led to their erroneous decision, as I will explain.

Firstly, I should explain why I assert categorically that the PCC's decision is wrong. This is because the subject of my complaint was an error of fact; a matter of the historical record, which simply cannot be denied.

I complained to the PCC on 1st March 2010 about an article published in the Sunday Times on 10th January. The article, by Richard Girling, was titled "How would you feel if you were an animal caged for scientific testing?" and is available online here: http://www.timesonline.co.uk/tol/news/environment/article6978955.ece.

I said that: "The article is inaccurate in many ways but the most important inaccuracy is its central claim, on which its raison d'etre is based, that deep brain stimulation as a treatment for Parkinson’s disease was pioneered in monkeys (paragraph 12). In fact, the technique was pioneered in patients, as shown by an article in New Scientist, which I have attached with the relevant parts highlighted in red, showing that the technique was pioneered in a patient in 1987."

Yet, bizarrely, the PCC concluded that no breach of Clause 1 (Accuracy) of the Code had been established. Their reasoning was that, although they accepted that the technique was discovered in a human patient in 1987, they took the view that the phrase: "pioneered in monkeys" was not "sufficiently inaccurate" to require correction. They defended the newspaper's use of the phrase by claiming that experimentation on monkeys had formed a vital part of the development of deep brain stimulation and that the technique had been adopted as a treatment for Parkinson's subsequent to its development and refinement in monkeys in the early 1990s.  

However, these claims are false. The technique was adopted as a treatment for Parkinson's in the late 1980s, some years before the experiments on monkeys to which the PCC gives credit. I provided the PCC with a number of references from the scientific literature, which prove this beyond dispute. Chief among them was the paper I have attached for your information, which - crucially - was published in 1987, and documents 6 Parkinson's patients' successful treatment with deep brain stimulation in those first few months alone.

I contacted Professor Benabid, the pioneer of deep brain stimulation, to request documentation of the fact that the story of his momentous discovery occurred as reported in the New Scientist article (also attached). Bob Tyrer of the Sunday Times had said (in his initial response, dated 27th April) that the New Scientist article "wrongly implies that deep brain stimulation was used to treat Parkinson's in humans from the start." Professor Benabid replied that:
You are right I discovered serendipitously DBS at high frequency in 1987 during a thalamotomy for essential tremor. When a discovery starts being claimed by others it means the discovery is valuable. It is easy to dismantle the controversies just by telling the story as I lived it. 
1: My discovery was Deep Brain Stimulation at High Frequency. This was quite quickly generally accepted (because it is more efficient, safer, and  reversible) and it has become a surgical breakthrough because of its surprising efficiency. 
2: I made this discovery in the first months of 1987, in a serendipitous manner, during a thalamotomy for movement disorders (the first patient was an Essential Tremor, the following patients were Parkinsonian, and later we also treated dystonias, as well as tremor in multiple sclerosis patients). The first cases were reported in 1987 in the following paper AL Benabid et al, Applied Neurophysiology, 1987 (reprint attached), and then in a large number of journals, including the Lancet in 1991 (which is 6 years before 1997!) (see reference list A). In Current Opinion 2009,(also attached) there was actually a misprint in the first line of the abstract, but on the second column of the first page, about the middle of the page  I wrote “Since 1987, high frequency stimulation (HFS) in the basal ganglia has been proven to produce the same effects as lesioning”,  which refers to the 1987 paper. In all articles where I described how this happened, I say, for the sake of exactness that it was during a thalamotomy for essential tremor (which is not Parkinson’s disease of course) but the next patients and many others were PD. In 1993, at the time of the first STN patient, I had operated 81 patients in the thalamus for either Parkinson’s disease (81%) or for essential tremor (19%). 
3: I was the first person to make this discovery. Namely I clearly established the tight relationships between the high frequency and the lesion-like (which does not mean a lesion is created) effect of high frequency, still not fully explained. 
Here is History as I saw it, and I have no doubt that many, for many reasons, want to rewrite it. I know this is life, but I thank you for devoting some of your time to prevent some kind of “Big Brother 1984 Rewriting”. 
These are the relevant extracts of Professor Benabid's reply. I have highlighted one sentence in red because it shows that by 1993, when the PCC (and the Sunday Times and Understanding Animal Research) claim that the technique was first used for treating Parkinson's, the operation had already been performed 81 times in one hospital alone.

Professor Benabid has been recognised and honoured with awards for his momentous discovery, as here, for example: http://translate.googleusercontent.com/translate_c?hl=en&sl=fr&u=http://www.victoires-medecine.com/palmares-lvm08.html&prev=/search%3Fq%3Dalim-louis%2Bbenabid%26hl%3Den&rurl=translate.google.co.uk&usg=ALkJrhjRHt12Km5K0CFSu7ql4t-uzDXUEg.

Professor Benabid does not dispute that monkey experiments contributed, latterly, to further development of the technique. However, nobody can deny that its discovery and adoption as a treatment for Parkinson's was based solely on clinical observation in patients. The significance of this point is such that it merits remedial action for three reasons:

1) The entire article was based upon this one fact. The author builds a convincing case in support of animal experimentation in general, and brain research on primates in particular, on the strength of the "fact" that such momentous breakthrough discoveries as deep brain stimulation are made in animals. As I said in my original complaint: The author's personal "agonising dilemmas", as well as his indignation that, as he sees it, some opponents of animal experimentation would reject the benefits of experiments on monkeys, depend absolutely on the veracity of the claim that this important medical breakthrough was pioneered in monkeys;

2) The Sunday Times (in Bob Tyrer's email of 27th April) asks the PCC to reject my complaint on the grounds that the New Scientist article "wrongly implies that deep brain stimulation was used to treat Parkinson's in humans from the start". The PCC has obliged, despite the fact that these grounds are false;

3) Not only is the point hugely significant for the article itself, but its significance for readers is similarly huge. Public opinion on the medical value of - and thus the justification for - animal experimentation is influenced strongly by its portrayal in the media. This is why it is so important that such portrayal is accurate. As I said in my original complaint: Few readers would choose the monkeys over Mark, given such a stark choice between, as Richard Girling put it, "the two guilts". However, since this medical breakthrough was actually made in humans, the agonising dilemma that pervades the article does not, in fact, even arise. Readers were misled, both literally and also symbolically, by this falsehood and the misrepresentation of the medical value of animal experimentation that followed from it.

It is important for me to record that I made my complaint in the interests of the public, as the director of an independent patient safety organisation, Safer Medicines Campaign. Our concern is that patients are frequently harmed and even killed by an over-reliance on animal experimentation, which can be seriously misleading when applied to humans. The evidence for this is incontrovertible. One of our aims is to correct the media's frequent misrepresentation of this issue, which could not be more important for the future of medicine, as nothing more than a debate over animal rights.

With apologies for the length of this email so far, I will now turn to explain, as briefly as possible, why I believe that the way the complaint was handled led to the PCC's erroneous decision.

My original complaint to the PPC was on 1st March. On 28th April, the PCC forwarded the email from Bob Tyrer to which I have refererred above. I replied on 4th May, saying (amongst other points):

Mr Tyrer is wrong to say that the New Scientist article I supplied is misleading. He misquotes and misrepresents Professor Benabid in his letter to you, and his "top-flight sourcing" of references from Barbara Davies [of Understanding Animal Research; the UK's leading pro-animal testing lobby group] is simply incorrect. In order to set the record straight, I have contacted Professor Benabid, who has supplied unequivocal proof of his momentous discovery, with a comprehensive list of references (attached) along with his comments [as above].

It is clear from these references - particularly the two supplied in full - that DBS has been used to treat movement disorders including Parkinson's since Prof Benabid's pioneering discovery in 1987. Barbara Davies is simply wrong to credit work in monkeys in 1992, since Prof Benabid's work in humans pre-dates this by five years. As Prof Benabid points out, 1997 was clearly a misprint and should have said 1987, as it did a little later on in the same paper.

In light of all this, there can be no further denial of the fact that DBS for Parkinson's disease was pioneered in humans, not monkeys. Thus, Richard Girling's article was fundamentally inaccurate. As I explained in my complaint, the significance of this point cannot be overestimated. It is therefore extremely important that adequate reparation is made.

I heard nothing more from the PCC until 17th June - an interval of 31 working days - despite their Complainants' Charter saying: "We will aim to keep you informed of the progress of your complaint at intervals of no longer than fifteen working days". On 17th June, I received an email that Bob Tyrer sent to the PCC on 21st May. It contained emails from three organisations supportive of animal testing, which gave the very strong impression that they had been involved in commissioning the article for the Sunday Times. I replied, saying:

The fact that three organisations supportive of animal testing were so pleased with the article shows clearly that it favoured their position. Barbara Davies - Communications Director of the UK's lobby group for animal testing - was pleased that the author "came over as open-minded". That this was a carefully orchestrated illusion is revealed by the involvement of the three groups early in the gestation of the article. Their correspondence adds further weight to my complaint that the article was partisan whilst presenting itself as objective and balanced.

However, the issue of bias was the third and least important of my complaints. My first and most important complaint was that of the central inaccuracy on which the article was based: that deep brain stimulation as a treatment for Parkinson’s disease was pioneered in monkeys. I have supplied conclusive proof that the technique was, in fact, pioneered in patients. Has the newspaper not responded to this point?

The correspondence from the three organisations was sent to me four weeks after the PCC had received it, and was only sent to me at all because I requested it.

On 22nd June, I received another email written to the PCC by Bob Tyrer, dated 1st June. Again, it is clear the PCC had no intention of allowing me to see this crucial correspondence, which I only saw belatedly because I requested it. Frustratingly, my complaint was then due for consideration, so I had only one day to respond. I responded on 23rd June, as follows:

Although I hope it is clear that the piece written by Craig Brierley is no defence against the unequivocal proof, supplied by Professor Benabid, of his momentous discovery, I would still appreciate the opportunity to explain to the Commission why this is so. My explanation will necessarily be brief, since I have such a short period of time in which to submit it.

The piece about DBS by Craig Brierley is a perfect example of an attempt to re-write history, in order for others to claim such a valuable discovery as DBS; precisely as Professor Benabid observed!

Bob Tyrer's claim that the document "makes clear that monkeys were crucial to the development of the DBS technique" is simply incorrect. The document merely claims (in its last sentence) that "the sub-thalamic nucleus as the optimal target for treating Parkinson's disease was identified in monkeys, not in humans". But that is not at issue!

The issue in question is whether the initial, pioneering discovery of the fact that DBS stops Parkinson's tremors was made in monkeys or humans. The unarguable fact is that it was discovered, as Professor Benabid recounted, complete with a comprehensive list of references from the scientific record, in his patients.

Nobody denies that DBS has been studied in monkeys since Professor Benabid's breakthrough discovery. But the momentous breakthrough itself was made in 1987 in a human patient. Craig Brierley's dates, given in his last sentence, of 1991-1995, are simply wrong, as the documented scientific record shows. I have previously supplied a reprint of Professor Benabid's paper, published in 1987, reporting his breakthrough. I would like to give the last words to Professor Benabid:  "You are right I discovered serendipitously DBS at high frequency in 1987 during a thalamotomy for essential tremor... When a discovery starts being claimed by others it means the discovery is valuable... Here is History as I saw it, and I have no doubt that many, for many reasons, want to rewrite it."

The Commission's letter containing their decision was dated 5th July: fully four months after my initial complaint. The letter said that: "the remedial action offered by the newspaper was sufficient as a response" to my complaint. But no remedial action whatsoever has been offered to me. I have sought clarification of this point but have not yet received a reply.

The PCC's letter states: "the newspaper did not accept the scenario put forward by the complainants - despite Professor Benabid's assertion that the "1997" date had been misprinted - and refused to publish a correction". This implies that the newspaper disputed that Professor Benabid pioneered deep brain stimulation in 1987, even after I had provided published proof that he did. I have not seen this correspondence from the newspaper, although the Complainants' Charter states that the Commission will only consider material submitted by one of the parties to the complaint after it has been seen by the other party. 

By the manner of its handling of the complaint, the PCC has failed to hold the Sunday Times to account for its errors. The PCC failed to forward the newspaper's replies to me multiple times. The newspaper has not engaged with any of the evidence I have provided. Perhaps this is because the PCC did not forward all of my replies to the newspaper? Or simply because the PCC did not seek a response from the newspaper to my submissions. The newspaper has repeated the same factual errors from the beginning, despite the fact that I have disproved them unequivocally. It is as though all of my emails have been ignored, both by the newspaper and the PCC. 

The PCC is supposed to be impartial, yet it has acted partially by choosing to believe a demonstrably false and misleading version of events, supplied by the UK's leading pro-animal testing lobby group (Understanding Animal Research) and other pro-animal testing lobbyists (Professor Roger Lemon is a member of the Council of Understanding Animal Research and Professor Tipu Aziz is a member of the Committee of pro-animal testing lobby group Pro-Test), in preference to the historically correct published record, obtained directly from the pioneer of the technique of deep brain stimulation, which I had supplied.  

Here is a clear example of both the Sunday Times and the PCC defending the orthodox Establishment view that animal experimentation is responsible for medical breakthroughs, in the face of conclusive proof that, in this case at least, it was not. This is particularly curious in light of the comment by the newspaper's managing editor, Richard Caseby, that: "The Sunday Times... has no agenda beyond challenging orthodoxies and presenting readers with intelligent and well-sourced scoops" (http://www.independent.co.uk/news/media/scoops-spin-and-the-strange-news-values-of-the-sunday-times-707421.html).

Unless the PCC, like the Sunday Times, wishes to justify animal experimentation through misinformation, it has no alternative but to uphold my complaint, which rests on an indisputable point of fact. I shall be most grateful to you if you are able to help them to see this.

Thank you very much for your attention. Please do not hesitate to contact me if I can supply any further information or answer any queries you may have.

Yours sincerely

Kathy Archibald


From: Charter Commissioner: Lt Gen Sir Michael Willcocks
To:kathy@safermedicines.org
Sent:25 November 2010

Dear Ms Archibald

I must apologise for the lengthy delay in responding to your complaint against the Press Complaints Commission’s (PCC’s) handling of your case against The Sunday Times which you believe led to an erroneous decision by them. Initially it was caused by my absence abroad for some months, but latterly by the complexities of your case with respect to that of another complainant and how both were handled by the Commission.

I have now had the chance to study the files relating to both cases which contain the correspondence between all parties as well as the record of the deliberations of the PCC itself. I have also had detailed discussions with the Director of the PCC and the Officer who handled your case, to ensure I understood exactly how the Commission arrived at its decision.

As you know, my remit as Charter Commissioner is to consider only the handling of complaints by the PCC; I have no authority to overturn their decisions. Nevertheless, I am prepared to ask them to reconsider a case where I believe there are grounds for so doing.

I have been at pains to disentangle what seemed at first to be a conflation of two separate complaints treated as one for the purpose of consideration. In fact, I discovered that, although both complaints were indeed examined at the same time, and the resulting decision covered both, each was separately considered entirely on its own merits throughout the investigation as you had requested. Further, I can assure you that the PCC did forward all your replies to The Sunday Times, and the Commission did see all the evidence you provided. In particular, they did see, and take into consideration, Professor Benabid’s paper and his subsequent emails which they regarded as undisputed.

Undeniably, there were a series of delays in the handling of your complaint, but these were largely caused by the failure of the newspaper to respond to the PCC within its stated timelines. This was highly regrettable, but the Commission recognised this in its findings and has written formally to The Sunday Times expressing its concerns over the matter. I find these delays did not affect the ultimate decision in the case.

Turning to that decision, although strictly it is outside my locus, it is clear to me from my examination of the Commission’s deliberations that they did understand what Professor Benabid had done and they accepted your account of matters, that humans had been central to the breakthrough  and discovery of this particular Parkinson’s treatment. Nevertheless, their decision turned on the meaning ascribed to the word “pioneered” in the context of the article. I believe the analogy is that, although Columbus discovered America and undertook exploration there, this does not preclude later exploiters of his work from being described as pioneers in common parlance. The PCC found that the use of the term in this way would not mislead readers and that there was, therefore, no breach of the Editors’ Code of Practice with regard to accuracy. I hope this helps to clarify matters.

In sum, I find that despite some poor practice on the part of the newspaper, your complaint was properly handled and fully considered by the PCC and that there are no grounds for a reconsideration of your case. Once again may I apologise for the delay in informing you of my conclusions.

Yours sincerely

Sir Michael Willcocks


From: Kathy@SaferMedicines.org
To: Charter Commissioner
Sent: Sunday, November 28, 2010 2:21 PM
Subject: Re: your reference: CC133

Dear Sir Michael

Thank you for your email of 25 November, explaining your conclusion that there are no grounds for a reconsideration of my case.

I realise that I have reached the end of the line of the complaints procedure and have nowhere left to turn to seek redress but I must point out to you, with all due respect, that your conclusion is wrong and unequivocally so. I hope that you will have the great courage to reverse your decision if I can show you why it is wrong. Please bear with me while I explain.

To use your analogy, the American pioneers were the first to establish new European/American settlements; thus enabling others to follow in their footsteps. The American Heritage Dictionary of the English Language has this definition: "One who ventures into unknown or unclaimed territory" (http://www.selah.k12.wa.us/SOAR/Projects2000/PioneerWeb/).

In the case of DBS, the pioneer in the rigorous sense of the first person to make the discovery, in a way directly analogous to Columbus, was Professor Benabid, as the PCC accepts. But even if the definition of pioneer is relaxed as you suggest, to include those who were the first to exploit the newly-discovered technique as a treatment for Parkinson's patients, those pioneers still comprise Professor Benabid and his colleagues, who treated a series of patients with DBS before other researchers followed in their footsteps and began practicing DBS in monkeys. These later researchers were exploiting the knowledge and experience of DBS that had already been gained in human patients; thus they cannot be described in any parlance as pioneers of the technique.

If we revisit the actual wording of the article:

"Mark has had Parkinson’s disease quite severely for 15 years, but can function near-normally thanks to a technique known as deep brain stimulation, which was pioneered in monkeys... So this was make-your-mind-up time. Monkeys versus Mark?"

to see the context in which the term was used, it is clear that the author credits the monkey researchers with the discovery and/or first practical use of the technique. In either case, he is wrong. Thus the article is inaccurate and the PCC is wrong to say otherwise.

To attribute any other meaning to the word pioneer is an abuse of language, which ill becomes the Sunday Times and should not be tolerated by those charged with upholding standards in the press.

If one accepts Professor Benabid's role in the discovery and development of DBS, as the PCC does, then one cannot simultaneously defend the claim that the technique was discovered and/or first developed in monkeys. Yet this is precisely what the PCC has done, in concluding that there is no breach of the Editors’ Code of Practice with regard to accuracy. Such a position is clearly untenable.

The claim that DBS was pioneered in monkeys is false. I have highlighted the importance of this falsehood many times already, since it is the crux of the whole article, which could be summed up in the three words: "Monkeys versus Mark?" Readers have been misled into believing that DBS would not be available to patients if not for research in monkeys and that therefore a choice must be made between them.

I am deeply shocked that you and the PCC are happy to defend such appalling standards of journalism, where truth is jettisoned in favour of good copy. I appreciate that this case has been complicated and technical but at its core, the issue is a simple matter of fact. I hope that you can now see the error clearly and that you will have the admirable courage to reverse your conclusion.

Yours sincerely

Kathy Archibald