Monday, October 01, 2007

NHS Choices Spreads Confusion About Allergy and Intolerance Tests

Question mark and reminders
Journalists and and a certain class of nutritionists frequently conflate allergy and intolerance. UK newspapers regularly carry stories about 'food allergies' where the topic is actually food intolerance and it is not unusual for IgG blood testing to be promoted as a scientifically and clinically validated test for the diagnosis of food allergies or intolerance. These misunderstandings are so common that I notice when a journalist doesn't make these mistakes.

Nonetheless, I was particularly irritated when a correspondent drew my attention to an NHS site with a section dedicated to allergies: Which allergy test? The page carries some useful information about various tests, both those which are available from the NHS and those that are direct-to-consumer. For some of the tests (e.g., the hydrogen breath test for lactose intolerance or the coeliac self-test) there is information about the specificity and sensitivity, as reflected in the number of accurate diagnoses, false positives or false negatives. Some of the descriptions even carry a warning that some tests are "[d]ismissed by allergists as unreliable and unscientific" (systematic kinesiology) or may be offered by people who "may not have relevant qualifications" (VEGA). The inclusion of such information for some tests and not for others makes it seem as if there are no comparable concerns for those tests where they are not mentioned rather than a lack of actual clinical data or research.

However, the credulous writer/s gave no such caveats about YorkTEST’s foodSCAN tests.
In this test, you send a small blood sample to YorkTest Laboratories. The lab examines your blood for IgG antibodies, which it believes cause food intolerance. Results are given in a traffic-light code: foods to avoid (red), to rotate (amber), and to eat freely (green).
Tests for: food intolerance.
Pros: the only intolerance test supported by Allergy UK. It is also supported by well-known figures such as Dr Hilary Jones and Patrick Holford.
Cons: very expensive (around £250).
However, when the well-respected clinician, Dr Glenis Scadding, Consultant Allergist at the Royal Nose, Ear and Throat Hospital gave her testimony to a House of Lords Committee that was considering allergy and allergic disease in the UK, she characterised IgG tests for food intolerance as a waste of money":
What I do dispute is that it is worth making any attempt to identify IgG antibodies. We all make IgG antibodies to food....I see no way in which this can be used to guide diet.

I don't think there's any point in spending money on IgG antibody tests. You're better off going to see a dietitian and using an exclusion diet followed by reintroduction. The IgG antibody tests are liable to leave patients on diets that are inadequate and patients often like to think they're improving. They carry on in the teeth of very little improvement and may end up malnourished.

I think [self-testing kits] should be banned.
The YorkTest foodSCAN range is available as direct to consumer tests; however, they are also frequently recommended by nutritionists who typically do not have any recognised or specific training in allergy diagnosis or management. It isn't clear why the people who put the NHS Choices Guide together did not take note of this strong criticism from an acknowledged expert when they noted allergists' criticism for other tests but chose to mention that the foodSCAN test is endorsed by well-known names without disclosing their relationship with YorkTest. Similarly, the Allergy UK Consumer Award is only based on anecdotal report and is no indication of clinical or scientific value. Allergy UK is admonished for their support of this testing in the House of Lords report.

In a comprehensive report HL 166-I (pdf from which pg numbers are given), the Committee makes a number of good recommendations and provide some useful summaries. Pages 86-88 cover the issue of direct-to-consumer tests such as the YorkTest foodSCAN IgG test for food intolerance and the YorkTest-Allergy UK MAST IgE test for allergies to food and airborne allergens, amongst others.

The House of Lords summed up their advice as follows (pg 87):
We are concerned both that the results of allergy self testing kits available to the public are being interpreted without the advice of appropriately trained healthcare personnel, and that the IgG food antibody test is being used to diagnose food intolerance in the absence of stringent scientific evidence...We urge general practitioners, pharmacists and charities not to endorse the use of these products until conclusive proof of their efficacy has been established.

It almost seems gratuitous to add that the House of Lords aligns themselves with clinical experts in their notion of who is qualified to diagnose allergies and allergic disease (hint, it is not the typical holder of a Diploma ION nor an auto-didact nor self-proclaimed expert nor celebrity nutritionists).

It is absolutely clear that the House of Lords has considered the evidence and finds that there is no adequate scientific or clinical support for the usefulness of these blood tests as a direct to consumer item; further than that, there is clear cause for concern as to the relevance of the tests. The House of Lords urges professionals in positions of responsibility and authority, whose opinions or recommendations may influence others, to refrain from endorsing this technique. NHS Choices includes cautions about other tests and techniques, it should include them about the YorkTest foodSCAN range and IgG testing for food intolerance.

People trust sources of information that come with the implicit imprimatur of the NHS. The information about the allergy tests is shoddily researched and rather confusing. NHS Choices should rethink their guide. They need to amend the text about IgG food intolerance tests and some direct to consumer allergy and intolerance tests to reflect the well-founded concerns expressed in the report from the House of Lords.

Related reading:

Science Lessons takes a lively look at kinesiology for food intolerance testing
Patrick Holford, IgG Testing and the House of Lords
Patrick Holford and His "Deeply Impressive" Scientific Proof
Patrick Holford Endorses Allergy/Intolerance Blood Test: The House of Lords Wants Responsbile Professionals To Cease Endorsement of Such Techniques
Food intolerance testing and migraine
Truthiness and referenciness make the case for IgG food intolerance tests
More allergy and intolerance testing nonsense: part 1
More allergy and intolerance testing nonsense: part 2
Quote Mining and Misrepresentation: Poor Ways to Claim Clinical Validation or Sound Science
What is the Significance of IgG Antibodies and Testing?
Why IgG Testing for Food Intolerance Is Not As Simple As ABC or Doh Ray Mi

Labels: , , , , , , , ,

Friday, September 28, 2007

Possibly a Watershed in Responsible Medical Reporting?

Faustus and the Devil Meet
For some of us, the day that The Observer published some egregiously poor reporting about the incidence of autism in the UK and a series of errors about the MMR vaccine, was a landmark in shoddy medical journalism. I dubbed it St. Maximilian Kolbe and Blessed Titus Brandsma Day: once The Observer had published those notorious pieces, it guaranteed abysmal coverage of the issue for the next 100 days.

There was outrage throughout the UK blogosphere. Many people wrote to The Observer to correct these stories, not least Dr Fiona Scott whose views had been misrepresented and one apiece from Prof. Baron-Cohen and Prof. Bustin. Baron-Cohen:
[Your] article linked MMR and autism.

The research does not...

The best estimate of the prevalence of autism is the 1 per cent figure published in the Lancet in 2006.

My view is that any apparent rise is likely to be driven by better recognition, greater awareness, growth in services, a widening of the definition of autism and a shift towards viewing it as a spectrum rather than a categorical condition.
Bustin (see Fitzpatrick for a summary of Bustin's devastating testimony):
Remarkably, there is no reference in your story to the fact that on 11 June the first of 4,800 cases in autism proceedings came to trial at the United States Court of Federal Claims in Washington. These are designed to establish whether or not autism can be caused by MMR. For the first time, a succession of highly respected researchers in epidemiology, genetics, virology, molecular biology and other medical and scientific disciplines - the 'medical and scientific establishment' of the Observer article - provided detailed evidence of why, in their opinion, there is no medical or scientific basis for any claim linking the MMR vaccine with autism.
You might have thought that the interventions from these two luminaries might have made it into the subsequent Readers' Editor response to the letters and the result of his investigations into the story. The short piece was riddled with self-exoneration. The Head of News says:
'I believe it was legitimate to include the thoughts of two of the authors of the study. We didn't conflate the two issues; the issues are already conflated.

'We worked hard to give a non-incendiary, balanced view. I believe we had to give the readers all the information we had. After all, they would ask, "Could MMR be a factor?"
Sins of omission and commission abounded. They seemed unrepentant about publishing the inflammatory 1 in 58 figure but grudgingly acknowledged that perhaps they might have included the other figures that were less disturbing and more inline with current estimates (amongst many much-needed corrections, they didn't touch the issue of it being a tool that may generate a 50% rate of false positives which may be acceptable if it has good specificity). It doesn't seem to disturb them that their conclusions are at considerable variance with the contents of of a report about that screening tool (pdf) from Baron-Cohen's research centre (HT to correspondent who sent me this link). The concluding sentiment and sentence are breathtaking for their complete lack of any awareness of the issues that fuelled the strong response of so many readers plus the introduction of a novel definition of accurate.
And the central point, in my view, is that the leaked story of the apparent rise in the prevalence of autism was a perfectly legitimate and accurate story in its own right, which did not need the introduction of the MMR theory.
Oh misery me! Omnes plecum plangite! However, if the Guardian/Observer offered a completely inadequate apologia pro ephermeris sua (HT Kristina Chew) then The Independent among many other papers wasvox stulti as was Channel 4 News for repeating those figures uncritically.

Jon of Holford Watch has been indefatigable in chasing corrections and amendments to these stories. He phoned both The Guardian and The Observer on many, many occasions to explain what was wrong with those stories. Jon was instrumental in having some online corrections published in The Guardian which carried some uncritical follow-ups that reproduced 'facts' from The Observer. Even after Dr Ben Goldacre published his remarkably restrained coverage of what was so appalling about media coverage of MMR-related issues, the editor of the The Observer refused to retract the story (judging by the the sins of omission rather than actual action).

The belief in a link between MMR-vaccines-mercury-autism has cultish overtones. Most religions have an act of contrition. Several months ago, I argued that the UK media collectively needed to make an act of contrition and perform an act of reparation. My preference was that these should take the form of some informed coverage and some active retraction of those abused figures. However, it rather seems as if obduracy in this matter may lead to a sacrificial act: Madame Arcarti floats the possibility that a senior person from The Observer is going, although the precise identity is unclear.*
This is the result of news ed Kamal Ahmed getting to keep his job - the result of an investigation into the embarrassment over the MMR splash that wasn't a story of two months ago (Catch up here, on the very good bad science website). The Scott Trust got involved, editor Roger Alton had to go to before them and receive six of the best like a naughty schoolboy. [Edited to embed URL.]
Jon has been diligent in pursuing a correction to 'MMR-idiocy' and has published a vigorous response to this news:
Hopefully the rumour is accurate, and Alton will face the consequences of his actions. I think it is entirely appropriate that – if a newspaper Editor publishes something both stupid and damaging on their front page, then refuses to retract the story – their career should suffer as a consequence of this.
Whatever the rights and wrongs of this rumour, it is not enough. I would far rather that The Observer stopped the Quackometer's MMR Apology Counter and retracted those stories and errors. I would rather that they did some soul-searching and resolve to be more responsible in reporting medical stories full-stop, but particularly those with significant public interest, and those where emotion seems to trump science. If somebody has to leave, that is a dramatic action: will it put editors on notice that medical reporting has to be handled responsibly and, above all, be accurate? It will be fascinating to see how this story plays out over the next few weeks.

Update* The Independent and an anon commenter on the Madame Acarti story indicate that they sacrificial lamb's identity may be illusory as may any hope for an improvement in journalistic standards for responsible reporting in science/health.

Related posts

Did Scoop Campbell Pull a Brizendine: More on Science and Journalism
Myth: Measles Is A Trivial Illness, There's No Point to Vaccination
MMR Vaccine Does Not Contain Mercury, Thiomersal, Thimerosal and It Never Has
Myth: Autism Omnibus Hearings Have Not Included Evidence About MMR
The Observer Still Doesn't Understand Corrections of Fact
Confused by 'Muddled Medical Research'? Scoop Campbell to the Rescue
Observer MMR Story Has Disappeared From the Archives: Why?
The British Medical Journal Embarrasses Itself by Reproducing That Notorious 1 in 58 Figure
Another Day of Shame for UK Media on Topic of MMR and Autism
Autism: The Truth Plus Sensitivity, Specificity and All That Is Decent to Reveal About Predictive Values
Wakefield: Another Triumph for Mainstream Journalism in the UK
Anthony Cox: How virulent were The Observer’s MMR articles?
Dr Michael Fitzpatrick on Stephen Bustin's devastating testimony and why there is nothing in the MMR-autism theory
Brian Deer for a very readable summary of The MMR-autism scare and Wakefield's role in it.
Brian Deer on Prof. John Walker-Smith and his involvement in experimentation on children with autism symptoms and his statement relating to the revelations about the Lancet paper.
Brian Deer on Prof Simon Murch and his involvement with the studies and his defence of the Wakefield research. Brian Deer has performed a thorough analysis of the differences between that statement and the claims made in the Lancet paper
Daily Telegraph on Prof Murch and his statement that there is no link between MMR and autism
Brian Deer has made available an easy-to-read format of the cross-examination of Dr. Arthur Krigsman in the Cedillo case of the Autism Omnibus.
Anthony Cox of Black Triangle: Virological evidence does not support a link between MMR vaccine and autism
Andrew Wakefield, Chronology and "Bad Science"
Patrick Holford and Dr Andrew Wakefield's Discredited Findings: Part 1 and Part 2
Wakefield's Latest Tent Mission on the Doctrine of Autism
Kevin Leitch on Andrew Wakefield and the death of the MMR debacle
Patrick Holford, MMR and What Passes for Hard Evidence
Mike Stanton on Patrick Holford and his unusual views on vaccination, MMR and autism
Ben Goldacre of Bad Science: Try Me, Sh*thead - the strange case of Carol Stott, Wakefield and the Observer
Dr Crippen of NHS Blog Doctor: Andrew Wakefield, MMR, Autism and the GMC
Tony Hatfield of Retired Ramblings: What the Observer's MMR Piece Didn't Tell You!
Tim Worstall: Crap Reporting in the Observer
Anthony Cox: New Autism Fears, A Man in Denial and MMR Memes in Newspapers
Mike Stanton: Cry Shame on Wakefield and MMR
Kristina Chew of Autism Vox: 1 in 58
Ms Clark of Autism Diva: Embattled Andy Wakefield Speaks and Wakefield and Walker-Smith: Dishonest and Irresponsible
Russell Brown of Public Address: Bad journalism, old stories
Wakefield and Why the Edith Piaf Routines is Baseless: Part 1
Patrick Holford and Andrew Wakefield

Thanks to Wellcome for use of this open access image.

Labels: , , , , , ,

Wednesday, September 26, 2007

House of Lords Reports on Allergy And Allergic Disease

Imagine having a Ferrari that you are only ever allowed to drive in a velodrome. Imagine further, that there is a noise-limiter on the engine and that you are not allowed to exceed 12 miles an hour. The UK is in the somewhat remarkable position of having some of the most well-respected and expert clinical allergists and immunologists in the world yet employing them within a National Health Service that is infamous for its lack of adequate allergy services and the poverty of available resources.

A House of Lords Committee has been investigating allergy and allergic diseases in the UK. The House of Lords (HoL) committee has issued a comprehensive report (HL 166-1 or pdf) and made some strong recommendations that seem wholly appropriate to the scale of need within the UK.

It is breathtakingly difficult to obtain a referral to a clinical allergist in the UK. In the whole of the UK, we have the equivalent of 26.5 consultant posts: approximately 5 of those are specialists in paediatric allergy. Clinical allergists frequently express their concern that it is this lack of provision that is driving some desperate people towards inappropriately qualified advisers who may lack a full understanding of allergy, anaphylaxis, intolerance and their appropriate diagnosis and management. The lack of timely access to NHS allergy diagnosis and management pushes people who suspect that they have allergies towards the more dubious fringes of CAM or to testing laboratories that claim clinical validation and "sound science" for their product range of tests.

Both allergies and intolerances can have a dramatic and deletrious impact on quality of life. Allergy can kill. It is difficult to write about less severe forms of allergy because it is not practical to predict whether or not a mild allergy might suddenly become a life-threatening allergy.

A number of children 'grow out of' allergies but many of them don't although there is some indication that timely intervention for allergic rhinitis might mitigate the onset of asthma. Some children have allergies that are multi-systemic and this puts them at particular risk.

Allergies are typically managed, not cured. An exception to this is the laborious process of immunotherapy for some allergens which is rarely available on the NHS in the UK and is reserved for those people for whom medical management has failed. However, allergic rhinitis and hayfever respond well to immunotherapy. Immunotherapy can take a long time: people with allergies are exposed to small doses of the substance which causes a reaction in order to "desensitise" them and the exposure is increased gradually to erode the response. Immunotherapy is a well-established standard of care in other countries and known to lighten the disease burden for some allergies. Dr Lourdes de Asis has provided an excellent overview of allergen immunotherapy and reports that where it is used appropriately:
Immunotherapy is successful in up to 90-95% of patients with seasonal allergies and up to 85% of patients with year-round allergies.
Professor Hourihane gave evidence on immunotherapy to the HoL committee; he commented:
The NHS is the laughing stock of Europe for its absence of immunotherapy for allergic diseases.
The technique, which used be given in GPs' surgeries, fell into disrepute in the UK after the mid-1980s after a report from the Committee on the Safety of Medicines in 1986 found that immunotherapy had caused 26 deaths over the previous 30 years. However, Committee Chair, Baroness Finlay of Llandaff, reports that it seems that immunotherapy was being administered to "the wrong patients by the wrong people in the wrong places".

The report makes interesting reading and there are many useful recommendations that would make a dramatic difference to allergy services within the UK and a significant difference to the appropriate management of allergic disease and the quality of life of many people. One of the most striking recommendations is the unequivocal support for the re-introduction of immunotherapy as a management technique for allergy and allergic disease with appropriate caveats governing the people and conditions for whom/which this is most effective and the setting for such treatment (a specialist tertiary centre, see pg 79 pdf).
Immunotherapy is a valuable resource in the prophylactic treatment of patients with life-threatening allergies, or whose allergic disease does not respond to other medication. Although initially expensive, immunotherapy can prevent a symptomatic allergic response for many years, and may prevent the development of additional allergic conditions, so its wider use could potentially result in significant long-term savings for the NHS. We recommend that NICE should conduct a full cost-benefit analysis of the potential health, social and economic value of immunotherapy treatment. [pg 81, pdf.]
This is a comprehensive and fine report with many important recommendations that I shall explore in other posts (not least, the importance of food-labelling; the call for responsible professionals and charities to stop endorsing direct to consumer allergy and intolerance tests and an outline plan to set up a national network of specialist allergy centres).

However, one dispiriting note is that the HoL Committee can only make recommendations. The National Allergy Strategy Group (NASG) represents clinicians working in the field of allergy, and cautions that this is the fourth national report highlighting deficiencies and the Department of Health has failed to act on any of them despite increasing evidence of the marked increase in allergies in the UK. The NASG representative said:
Health Ministers must act now.

Unless health authorities and trusts are directed to develop services and funding is identified, patient care will not improve.

Investment to train more specialists in allergy and to support GP education is needed.

Failure to diagnose and treat allergy is resulting in continuing illness and cost to the NHS.
These clinicians are experts; they have a very clear view of the desperate state of allergy services on the NHS. It is long past time that the Dept. of Health should stop making these people tootle round velodromes; these clinicians deserve better and so do millions of people throughout the UK who need the provision that they recommend.

Labels: , , , , , ,

Monday, August 06, 2007

Did Scoop Campbell Pull a Brizendine? More on Science and Journalism

monorail cat is out of service
There have been lots of tedious stories in the news about the alleged chattiness of women and the Trappist-like qualities of men. One of the major sources for this recent nonsense is Louann Brizendine.
The San Francisco Chronicle took the appearance of the new paper in Science about women's and men's chattiness as a prompt for a front-page story last Friday (July 6), and of course got some quotes from San Francisco resident and myth spreader Louann Brizendine. Quotes of astonishing disingenuousness, it turns out. Brizendine's newest story is this:
My book is really about hormones, and that one line [about women uttering three times as many words per day as men] has been taken out of context. It's fascinating, anytime you talk about sex differences, it's controversial. But the bottom line is, there are more similarities than differences between men and women.
So first she claims to be just an ordinary working endocrinologist. Then, like a politician caught on tape saying something derogatory about negroes, she plays the "I-was-taken-out-of-context" card. Next, she ruminates in wonderment at the controversiality of the whole topic (could it be the fault of the press, perhaps, pumping all this up?), and then, in a dramatic big-lie U-turn, she endorses the "more-similarities- than-differences" position that properly belongs to her critics...

[I]t's Brizendine now who is the hunter of the origins of the myth — a myth that she now implies she has almost nothing to do with!
Scoop Campbell is responsible for a new myth, that of the wretched 1 in 58 prevalence for autism among UK schoolchidren (see, e.g., this discussion about autism and MMR on WDDTY). Campbell is also responsible for significant inaccuracies about the content and safety profile of vaccines. Yet, it is Campbell who has produced a Special Report for Those Confused By Muddled Medical Research; first amongst those muddlers who are responsible for such confusion would be Scoop Campbell.
many media reports last week [detailed] new medical or scientific research on key health issues. Some involve real breakthroughs, others are more questionable.

'The public ends up very confused,' says Professor Jack Winkler, a sociologist of science at London Metropolitan University. 'Every week we are told about some new wonder ingredient in our diet that's different to the one we read about a year ago.'
A UKDietitian has responded (comment 2), arguing that:
Campbell's attempts to disguise his central role in the 'muddled world of medical research' - with regards autism last week and nutrition this week - by pointing the finger elsewhere fails miserably.

It's ironic that this article - just like his MMR article that preceded it - demonstrates beautifully the central role of the journalist (and this one in particular) of perpetuating 'muddle'.
Is this an elaborate ruse for Scoop Campbell to claim that although mistakes were made, they were not by him, it's the fault of pesky scientists and their muddled research? Not his muddled research for his journalism, nor his lack of understanding of even the basics of his subject-matter? Not his fault for failing to check his sources and materials with relevant principals?

Has Campbell pulled a Brizendine yet, or will that only be true the next time that he purports to inform the public understanding of MMR, autism or vaccinations?

How much of this can be attributed to newspapers failing to educate their readers in how to distinguish reputable sources of information and well-validated research? How much responsibility do newspapers accept for muddling health and medical news that has plausible physiological/scientific mechanisms and those that do not?

Back in 2005, Mark Liberman argued that we would raise standards in science reporting by lowering them. Liberman has a very well-worked out plan, but if Campbell is anything to go by, the mainstream media has little interest in the public understanding of science, choosing to concentrate on what science and health have to offer in the way of fodder for the gaping maw of newsrotica (an obsession with salacious news stories).

Other than scoopmania, is there a neologism that captures sloppy, sensationalised reporting of health and science?

Scienceblogs host many good discussions about science. However, too frequently, there is little discussion about the science, more the public statement of different views and the interpretation/rejection of publications in line with the respective writers' or commenters' confirmation bias. In non-specialist fora, the science discussion has a distressing tendency to favour the more attractive narrative rather than the scientific plausibility.

There is more to be said about whether journalism is changing and the issue of wisdom v. ignorance in networked crowds. Scoop Campbell is thought-provoking in some ways - it is a shame that it is more about his potential emulation of Brizendine rather than a positive contribution to the public understanding of science.

Related reading

Wakefield: another triumph for mainstream journalism in the UK
Autism: The Truth Plus Sensitivity, Specificity and All That Is Decent to Reveal About Predictive Values
The British Medical Journal Embarrasses Itself by Reproducing That Notorious 1 in 58 Figure
Ben Goldacre Breaks His Silence on the Media Coverage of the MMR, Autism Stories
Observer Gives A PoMo Clarification: Retract Already
Anthony Cox: How virulent were The Observer’s MMR articles?
Myth: Measles Is A Trivial Illness, There's No Point to Vaccination
MMR Vaccine Does Not Contain Mercury, Thiomersal, Thimerosal and It Never Has
Myth: Autism Omnibus Hearings Have Not Included Evidence About MMR
The Observer Still Doesn't Understand Corrections of Fact
Confused by 'Muddled Medical Research'? Scoop Campbell to the Rescue

Labels: , , , , , ,

Sunday, August 05, 2007

Confused by 'Muddled Medical Research'? Scoop Campbell to the Rescue

Black and white image of a revolving door: text on the floor reads, 'I'm afraid of revolving doors'
Scoop Campbell was the trigger for St. Maximilian Kolbe and Blessed Titus Brandsma Day: once The Observer had published those notorious pieces, it guaranteed abysmal coverage of the issue for the next 100 days. Following Campbell's fine example, other staff from The Observer duly obliged with failed clarification upon failed clarification and no adequate apology although one of these articles has now disappeared from the archives seemingly related to legal enquiries.

Jon of Holford Watch has been remarkably diligent about following up on factual errors with The Observer's Readers' Editor but it seems that Steve Pritchard is still not ready to acknowledge that Campbell erred in points of fact, and that Pritchard's attempts to deny this are increasingly ludicrous.

Campbell was wrong. The article that was so egregious that Healthbolt has styled it as a hoax has been withdrawn.
The zombie autism/MMR thing is back. In the new BMJ, Ben Goldacre tells the appalling story of an article in the UK's Observer newspaper that claimed new research had found the prevalence of autism to be much higher than previously believed -- 1 in 58 -- and that "leading researchers" thought this might be due to the MMR vaccine. None of the above was true. Period. The article can only be described as hoax. The study found no such thing, one of the "leading researchers" had no such opinion, and the other, who is not even part of the study team, works for Andrew Wakefield, the doctor who started the whole thing with a fraudulent paper in The Lancet many years ago, which has been withdrawn. [My emphasis.]
There are still errors of fact-not interpretation, fact-in the article that is still available in the archives. These errors are serious enough to pollute the public understanding of issues that are relevant to public health, namely the composition and safety profile of vaccines.

This weekend, we have learned that there is yet another outbreak of measles among unvaccinated children. One of the reasons that some parents have declined to vaccinate their children is the sensationalist reporting of an unsubstantiated link between vaccinations and autism; reporting that has been untempered by subsequent reports that find that there is no evidence for such a link.

So, it is with spectacularly bad timing that the The Observer carries a Special Report by Campbell: Confused by health advice? Then read on. It beggars belief that somebody perceived a need for clear guidance on important matters of public health and the cry went up, "Send for Scoop Campbell; nobody does it like him!".
It kills you; no, it does you good. Hang on, here's another report that says ... Denis Campbell looks at the muddled world of medical research
Seriously, that's what it says. One has to assume that the sub-editor has a tongue-in-cheek sense of humour in such matters. It reads like an apt description of Campbell's knowledge of the matters that he is writing about in the assumed capacity of expert mediator between scientists and the public. It is not always true that medical research is muddled. Many substances and interventions have both advantages and disadvantages; it's a somewhat sophisticated argument but it should not be beyond the wit of Observer journalists to write with appropriate qualifiers and nuances.

As it is, for Campbell to be The Observer's journalist of choice seems like breathtaking incompetence or arrogance. I feel that they have let loose someone with the subtle understanding of science that invites comparisons with Margaret Cavendish, Duchess of Newcastle and her remarkable musings on What is liquid?
All that doth flow we cannot liquid name
Or else would fire and water be the same;
But that is liquid which is moist and wet
Fire that property can never get.
Then 'tis not cold that doth the fire put out
But 'tis the wet that makes it die, no doubt.
Just how much contempt does The Observer have for its readers? Well, enough to ignore what might have been an excellent opportunity to retract Campbell's completely erroneous report, that must have 'baffled' many, that there is a 1 in 58 prevalence of autism among UK schoolchildren. Le Canard Noir is not easily stirred, but he has been moved to describe this article as "barefaced cheek, hypocrisy and cowardice". Quite.

It is past time that Pritchard and Campbell paid attention to the hoardes of people who are waving correction slips at them. Is it time to pick up the virtual pitchforks and flaming torches in the form of more corrections and besiege the citadel of the Readers' Editor's office?

Update 14:00: Le Canard Noir is sufficiently irritated that he has added an Observer-MMR Non-Apology Counter to his front page.

Related reading

Wakefield: another triumph for mainstream journalism in the UK
Autism: The Truth Plus Sensitivity, Specificity and All That Is Decent to Reveal About Predictive Values
The British Medical Journal Embarrasses Itself by Reproducing That Notorious 1 in 58 Figure
Ben Goldacre Breaks His Silence on the Media Coverage of the MMR, Autism Stories
Observer Gives A PoMo Clarification: Retract Already
Anthony Cox: How virulent were The Observer’s MMR articles?
Myth: Measles Is A Trivial Illness, There's No Point to Vaccination
MMR Vaccine Does Not Contain Mercury, Thiomersal, Thimerosal and It Never Has
Myth: Autism Omnibus Hearings Have Not Included Evidence About MMR
The Observer Still Doesn't Understand Corrections of Fact

Click on the image or visit Flickr.

Labels: , , , , ,

Saturday, August 04, 2007

The Observer Still Doesn't Understand Corrections of Fact

To recap: on July 8, The Observer sullied its reputation as a quality newspaper by publishing two articles that were breathtakingly inaccurate. They added to their ignominy by subsequently issuing clarifications that were nothing of the sort (neither apologising nor clarifying).

Along with many other people, I wrote to The Observer to correct some inaccuracies. My email is as follows; I have yet to receive an acknowledgement and these matters are still outstanding.

From: Shinga
Date: 08-Jul-2007 12:32
Subject: Corrections to Campbell's Articles
To: Readers' Editor

Dear Sir/Madam,

I'm sure that you will receive many well-founded objections to the two companion pieces by Denis Campbell. I wish to comment on some of the many factual errors in these pieces but shall concentrate on the Wakefield interview in this post.

The factual errors are so numerous that even picking this short selection at random yields several examples:
Critics point out that the US court case is not about the MMR vaccine itself but centres on the use of a preservative called thimerosal, which contains 50 per cent mercury and until a few years ago was added to routine vaccinations given to children in the US under one. Crucially, it has never been an element of the MMR vaccine here.
The Autism Omnibus Hearings have included extensive discussion of the MMR vaccine. The various experts for both the petitioners and respondents have discussed the MMR vaccine, the claimed presence of wild or vaccine strain measles virus in biological samples, and various hypotheses that include biological mechanisms for the contribution of thiomersal/thimerosal and MMR vaccines in the aetiology of autism. Some examples follow; all quotations are from the court transcripts (pdf files):

Mr Matanoski of the legal team for the Secretary of Health and Human Services discussed MMR in his resumed opening comments on Day 6:
We want you to be sure in your own mind that MMR vaccine is not causing autism because you've had good evidence to look at and
consider on that...[pg 10 of 345]

A serious accusation has been leveled. A serious accusation has been leveled against an important part of the public health arsenal against a preventable disease. An accusation has been leveled that MMR vaccine causes autism. That accusation must be answered, and we will answer it...

This accusation goes against a vaccine that is designed to prevent a killing disease. [pg 11 of 345]

...we are going to put on the evidence this morning and throughout this week that will allow you to effectively deal with that and to show you that MMR vaccine is indeed safe. [pg 16 of 345]

You heard from Dr. Hepner [one of the petitioners' expert witnesses: Day 3], and frankly, I think the PSC [Petitioners' Steering Committee] may have cringed at one part of her testimony, that is, when she said that MMR vaccine causing autism is an unproven hypothesis. [pg 18 of 345]
Similarly, on Day 12, Mr Powers, for the Petitioners Steering Committee (PSC), said:
You have a case here [the Cedillo case] that is a test case for the theory, the general theory that a combination of exposure to thimerosal-containing vaccines with a significant dose of ethyl mercury early in a child's life, combined then with MMR, can result in a complex system response that present symptoms that can get diagnosed as autism.

And in particular a suppressed immune system from the thimerosal in the vaccines, the introduction of the attenuated live measles virus then persists, and the persistence of that virus leading to a complex biological process of disease...
[pg 19 of 49 or 2887]
From the same transcript of Day 12, Mr Matanoski:
You need to find whether Michelle Cedillo's autism occurred before her vaccine. You need to find whether the PSC has proven that autistic spectrum disorders can be caused by MMR.

Whether or not there's inflammation in Michelle's Cedillo bowel or intestines, you need to find whether or not MMR can cause autistic spectrum disorder. [pg 30 of 49 or 2898]
Prof. Bustin's testimony is entirely concerned with the discussion of whether or not the findings of measles virus in the biological samples (a foundation stone of the work of Wakefield and those who claim to have replicated his findings) can be relied upon. In brief, he discusses his investigations and the expert report that he had prepared for the UK MMR litigation; he reports that the Unigenetics findings are unsound.

It is unusual for a misunderstanding to be so widely propagated that an government agency has to issue a clarification that a substance has never been part of a vaccination, but the FDA has done that for thimerosal and MMR.

MMR is a live vaccine, it would be unwise to add the thimerosal preservative to it because it would inactivate it and render it useless. Thiomersal/thimerosal any similar mercury compounds have never been a component of MMR anywhere.

Amidst the many complaints that you may receive about these articles, it would be helpful to correct these errors.

I know that other people (notably Jon of Holford Watch) have contacted Readers' Editor Steve Pritchard of The Observer with similar concerns and they have received unsatisfactory replies. I may well discuss some of these responses tomorrow if The Observer continues to fail to correct/retract those pieces. However, for now, I will remark that the only proper response to Pritchard's latest response is to be scornful. For a hint as to the tenor of the response, assume that the Readers' Editor requires us to believe that the informed reading public has misinterpreted Scoop Campbell's writings, rather than that Campbell made a mistake or that Pritchard erred in supporting him. Pritchard seems to have overlooked that if Jon's interpretation erred, and mine erred, then so did David Batty's (who reproduced some of those facts in a piece for The Guardian, a piece that has now been edited to remove those claims).

It defies belief that a credible Readers' Editor for a quality broadsheet can have a writing style that makes Scoop Campbell's look subtle and sophisticated coupled with New York Governor Eliot Spitzer's instinct for framing a sincere apology (albeit Pritchard seems to believe that the mistake lies with the readers/correspondents, not the staff). Pritchard's attitude is the more incomprehensible when one considers that one of these infamous articles has already been withdrawn for unspecified reasons that may be related to possible legal investigations.

I find this issue particularly irritating in the context of a recent, thoughtful article in Seed Magazine the outlines the difficulties faced by science journalists in developing countries:
Science and technology writers in the developing world are taking on issues that have profound implications for the countries and emerging economies in which they report. One need think only of the African AIDS crisis, climate change, prescription-drug access, agricultural biotechnology, bird flu, and many other specific science issues that have huge importance for the developing world. Perhaps the most crucial issue in places like Africa and South Asia is health policy, which is inextricably intertwined with social progress--more-productive nations tend to be those whose citizens are healthier and live longer. Philip Hilts, a former science and medical reporter for both the New York Times and the Washington Post who has spent many years working in developing countries, observed that as health improves, wealth follows. By informing governments, NGOs, and the international community about their countries' health policies, science writers in the developing world are performing a job that's fundamental to international development.

Yet despite having such a critical role to play, in many cases science journalists from the developing world face a series of hurdles that I, comfortably ensconced in Washington, D.C., simply never encounter. For some of these writers, basic research resources like cheap and reliable telephone service, libraries, and even dictionaries can be scarce. And while the physical act of researching and writing can present dramatic logistical challenges, science correspondents in some parts of the world are also faced with the worry that offending despotic or corrupt governments will result in retribution...

The specific challenges faced by the science journalist—getting access to scientists, getting them to talk about their work, the work of their peers, or recent studies and their implications—are also more difficult to overcome.
I have not complained about matters of interpretation in the above email but about facts that are easily checked and verified. Campbell, Pritchard and their support staff on The Observer are awash with resources. MMR, the safety of the vaccination programme, autism, and children's health are all significant areas for public concern and journalism in these areas has a particular significance and responsibility. As Fiona Fox explained, they could have had access to all the scientific expertise that they wanted to check facts both big and small, and to talk through the likely implications of those articles. If they were to compare their resources to those of their colleagues in other countries, then that is an additional cause for shame.

Related reading

Wakefield: another triumph for mainstream journalism in the UK
Autism: The Truth Plus Sensitivity, Specificity and All That Is Decent to Reveal About Predictive Values
The British Medical Journal Embarrasses Itself by Reproducing That Notorious 1 in 58 Figure
Ben Goldacre Breaks His Silence on the Media Coverage of the MMR, Autism Stories
Observer Gives A PoMo Clarification: Retract Already
Anthony Cox: How virulent were The Observer’s MMR articles?
Myth: Measles Is A Trivial Illness, There's No Point to Vaccination
MMR Vaccine Does Not Contain Mercury, Thiomersal, Thimerosal and It Never Has
Myth: Autism Omnibus Hearings Have Not Included Evidence About MMR

Labels: , , ,

Thursday, August 02, 2007

Where's Molly and the Rest of That Generation?

Book cover for Unstrange MindsAutism Diva has a thought-provoking post with many poignant links about the issues raised by Where's Molly? Where are the others?
One day in 1957, when Jeff Daly was 6 years old, his little sister Molly, disappeared.

Every night at dinner, he would ask his parents the same question, "Where's Molly?"

Every night, he says, he received the same answer: "Stop asking about Molly."

Decades later, Daly learned that his parents had sent Molly to a state institution nine days before her third birthday. Nearly 50 years later, Daly found his sister and made a documentary about his search.

"Since the movie, literally hundreds of people have come up to us and said, 'I had a [relative] that I remember my family talking about that was sent away. Do you know how we can find out about that person?'" says Daly...

There's a timeline that explains that in 1967 about 195,000 people, half of whom were children were institutionalized for being disabled, many of them would have been diagnosable as autistic by today's standards. Many of the were treated brutally and died in those institutions of the actions of drugs and of neglect and disease.
Reading the remainder of Autism Diva's post, I'm reminded how strange it is when I hear people ask, "If there is no epidemic of autistic spectrum disorders, where are all the older ASDs?". My mother's family was the lynchpin for many others. My grandmother held a 'come all ye' that was open to all friends, relatives and neighbours every Friday evening. My mother recalled that every weekend, although most people returned home after the evening, they had around 25 people staying over with them; the children would top-and-tail in the beds and others would sleep wherever they could fashion a sleeping space. The come all ye was primarily a social event but it also provided food and regular respite for relatives who were caring for those who needed 'special care and attention' (as it was known).

It sounds rather Gormenghast but my mother's childhood home had a large and comfortable basement level. An assortment of friends and relatives lived in the basement at various times. By report, they included people who had fallen on hard times (but social delicacy forbade discussion of this) along with those who didn't like noise, being surrounded by others, or busy visual scenes. They ate with the family as they chose, or took their meals down with them. Some of them had particular aptitudes and roles for which they were accepted and praised for their contribution to the household. One of the young men took over all of the endless mangling of the laundry and helped out with the extensive vegetable preparation that took place before every family meal (he would prepare the vegetables in the basement kitchen or would occasionally do it upstairs if my grandmother would promise not to sing, and my gregarious great-grandfather were not present). Another was known to be a dab hand at keeping the machinery running in the local dockyards.

When I was a child, most extended families had a couple of relatives who needed 'special care and attention' from other family members. Families who were separated from their extended families sometimes had children who 'disappeared' (this seemed to happen in new build estates that were created to meet the post-war housing shortage). Depending on their age, some of these children may have been to Children's Homes. Older children tended to disappear to Borstal (if male) or a 'home for wayward boys and girls'; others went to residential schools when they became too large or heavy to be managed at home by their mother.

A few years ago, I met someone who was horrified to discover that her husband had a sister whom he hadn't seen since he was a very young child. Somewhere in the early 60s, the sister had regressed when she was around two-years old. She spent hours at a time, running around the perimeter of the garden. She was terrified if people laughed, either in the same room or on the television. One day, the family took her to a residential home and thereafter, although the parents visited twice a year, her brother found it to be too upsetting and stopped seeing her. After the new bride found out about the sister, she started to visit her. Her husband accompanied her but would wait in the car during the visit; he was still unable to see his sister.

Autism Diva has provided a poignant example of Roy Grinker's argument in Unstrange Minds that there is no epidemic of autism. Kristina Chew presents a good overview of Grinker's findings. Both Chew and Grinker wrote an essay that is well worth reading: If There’s No Autism Epidemic, Where are all the Adults with Autism?
Just where might those 1 in 150 adults with autism be?

As surprising as it may seem, they are living and working among us.

Some live at home with their aging parents or siblings. Some live in group homes, or in institutions. Some have jobs and live independently. Many have the diagnoses given to them when they were children, such as mental retardation, seizure disorder, or schizophrenia. Recently, one of us met a severely autistic 60 year old woman in eastern Tennessee, who we’ll call Donna. Donna’s internist diagnosed her with autism ten years ago, when she was 50. Her mother said that Donna’s first label, in 1950, was “mentally retarded with emotional block and obsessive compulsive traits.” Today, for the purposes of public assistance, she is classified as mentally retarded.

There is no record anywhere to suggest that Donna is “autistic.”
Like Autism Diva, I wonder how many people like Molly there are in the UK. I wonder how many people are puzzled as to the identity of young children in photo albums.

Edited: August 4. Kristina Chew has told us about JP and other invisible or disappeared children.

Labels: , ,