Rapid Responses to:

REVIEWS:
David Elliman and Helen Bedford
Hear the Silence
BMJ 2003; 327: 1411-a [Full text]
*Rapid Responses: Submit a response to this article

Rapid Responses published:

[Read Rapid Response] Another view
richard horton   (12 December 2003)
[Read Rapid Response] Where the problem really lies
CA Johnson   (12 December 2003)
[Read Rapid Response] Richard Horton's view
Neville W Goodman   (12 December 2003)
[Read Rapid Response] Hear the Silence Reviews
Gary S. Goldman   (13 December 2003)
[Read Rapid Response] Re: Hear the Silence Reviews
Mark Wilks   (13 December 2003)
[Read Rapid Response] "Hear the Silence" Reviews
Gary S. Goldman   (14 December 2003)
[Read Rapid Response] societal responsibility
Jan M Perkins   (14 December 2003)
[Read Rapid Response] Dr Elliman is WRONG
Kathleen F. Yazbak, David Elliman, Helen Bedford   (14 December 2003)
[Read Rapid Response] Hear the Silence
William Pimm   (14 December 2003)
[Read Rapid Response] Beliefs are just Beliefs ?
L S Lewis   (14 December 2003)
[Read Rapid Response] Re: Another view
David Elliman, Helen Bedford   (14 December 2003)
[Read Rapid Response] Two separate questions
Ed Cooper   (14 December 2003)
[Read Rapid Response] Why don't you ask 'Why'?
Heather C Adams   (14 December 2003)
[Read Rapid Response] A conspiracy of silence
GH Hall   (14 December 2003)
[Read Rapid Response] Re: Two separate questions - but to one we KNOW the answer
L S Lewis   (15 December 2003)
[Read Rapid Response] Re: Re: Another view
M C Feliciello   (15 December 2003)
[Read Rapid Response] Re: Re: Two separate questions - retract or clarify?
Ed Cooper   (16 December 2003)
[Read Rapid Response] Re: Re: Two separate questions - and the lessons of historyfy?
L S Lewis   (17 December 2003)
[Read Rapid Response] We heard the silence
John Phillip Heptonstall   (18 December 2003)
[Read Rapid Response] Hear the Silence
Fred V Griffiths   (18 December 2003)
[Read Rapid Response] Re: We heard the silence
MC Felicello   (18 December 2003)
[Read Rapid Response] MMR
Carol C Williams   (19 December 2003)
[Read Rapid Response] Re: MMR
Penny Mellor   (19 December 2003)
[Read Rapid Response] Autism protocol
Ellen C G Grant   (19 December 2003)
[Read Rapid Response] More than just being wrong
Lenny Schafer   (22 December 2003)
[Read Rapid Response] Reviews of "Hear the Silence"
Donna M. Samuels   (23 December 2003)
[Read Rapid Response] There are non so blind...
Paul Lynch   (25 December 2003)
[Read Rapid Response] Re: There are non so blind...
Thomas Valentine   (26 December 2003)
[Read Rapid Response] Re: Re: There are non so blind...
Paul Lynch   (27 December 2003)
[Read Rapid Response] Re: Re: Re: There are non so blind...
Thomas Valentine   (27 December 2003)
[Read Rapid Response] Blair answer the question or resign
Brian George Smith, SS8 8LL   (1 January 2004)
[Read Rapid Response] For those who do not believe that there are serious side effects from live or attenuated vaccines
Alan Challoner   (4 January 2004)
[Read Rapid Response] Re: For those who do not believe that there are serious side effects from live or attenuated vaccines
Ed Cooper   (4 January 2004)
[Read Rapid Response] Re: For those who do not believe that there are serious side effects from live or attenuated vaccines
Peter J Flegg   (5 January 2004)
[Read Rapid Response] Re: Re: For those who do not believe... A response to Dr Flegg
Alan Challoner   (6 January 2004)
[Read Rapid Response] Epidemiology - Relevance and Usefullness
David R Sherman   (6 January 2004)
[Read Rapid Response] Re: Epidemiology - Relevance and Usefullness
Adam Jacobs   (7 January 2004)
[Read Rapid Response] Re: Epidemiology - Relevance and Usefullness
sharon m latta   (7 January 2004)
[Read Rapid Response] SSPE and measles vaccine
Peter J Flegg   (8 January 2004)
[Read Rapid Response] Hear the Protocol
MC Feliciello   (10 January 2004)
[Read Rapid Response] Re: Re: Epidemiology - Relevance and Usefullness
David R Sherman   (11 January 2004)
[Read Rapid Response] Re: Re: Epidemiology - Relevance and Usefullness [Correction]
David R Sherman   (12 January 2004)
[Read Rapid Response] Re: Hear the Silence Reviews And the Danish Study
David R Sherman   (15 January 2004)
[Read Rapid Response] Unequal standards
John Daniel Stone   (18 January 2004)
[Read Rapid Response] Re: Unequal standards
David R Sherman   (18 January 2004)
[Read Rapid Response] Unequal standards
John Daniel Stone   (19 January 2004)
[Read Rapid Response] Unequal standards: a challenge to David Elliman, Helen Bedford and Mike Fitzpatrick
John Daniel Stone   (23 January 2004)
[Read Rapid Response] The basic question
David R Sherman   (24 January 2004)
[Read Rapid Response] The silence continues
John Daniel Stone   (25 January 2004)
[Read Rapid Response] Re: Re: Unequal standards
David R Sherman   (5 February 2004)

Another view 12 December 2003
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richard horton,
editor, the lancet
the lancet

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Re: Another view

The outrage expressed over Channel 5's Hear the Silence by those on the front-lines of care, especially those who deliver vaccination services to vulnerable individuals and communities, is understandable and justified. However, the refusal of those with senior public-health responsibilities to engage in a debate provoked by this programme is, in my view, a serious error of judgement - one that only feeds existing public scepticism about the profession's and the Department of Health's attitude to Andrew Wakefield's extreme and unsubstantiated claims about the safety of MMR.

There is an alternative reading of Hear the Silence. I write as the editor of the journal that published Andrew Wakefield and colleagues' first paper on this subject. But, more importantly, I write as the parent of a 3-year-old girl who has had the MMR vaccine and who is healthy and happy - and protected from several life-threatening illnesses.

1. The film presents us with the acute feelings of two caring and loving parents who see their child develop in ways that are entirely alien to them, and to which they react in contrasting and sometimes conflicted ways. This developmental pathway creates challenges at school, within the family, and during encounters with often stretched medical and welfare services. A perfectly natural reaction, surely, is to say, "Something happened to my child. What could that something have been?" How should we as doctors respond to this question? With a mix of compassion and evidence, of course. The full weight of the latter has been brought to bear on this debate. But the tone of outrage in the reaction to this film diminishes the former, and so belittles the experiences of some families living with a child who has autism (although not all, as Mike Fitzpatrick's piece so tellingly shows).

2. It is easy to condemn Hear the Silence for taking a one-sided view. The programme shows a clear uncertainty within the family about the cause of their son's illness. At one point, the mother and father debate the events that preceded their child's first symptoms. "It didn't happen", says the father. Was he ever normal? he asks. And how would we know? In a subsequent scene, the father points out that temporal association is not the same as cause (having a heart attack in a car, he argues, does not mean that the car caused the heart attack). While the film proceeds to lend considerable emotional force to the mother's early view that MMR and autism are linked in some way, the programme presents a more complex and contrasting picture than reviewers have so far suggested.

3. Hear the Silence seems to me to be, first and foremost, an investigation into the evolution and nature of the mystery we call autism - and the mystery that it still remains. The conclusions of the film, as I read them, are that the MMR/autism hypothesis is unproven, that the vast majority of medical opinion aggressively supports the safety of the vaccine, but that research should continue nevertheless. Most of us who have read the published (and in some cases unpublished) research know that an overwhelming quantity of data now exists to rule out MMR as a cause of autism. But the problem we face is that there is imperfect laboratory evidence that is claimed to support Andrew Wakefield's point of view. That work needs to be repeated, improved upon, and published to reveal, finally, the true validity of his all-but refuted hypothesis. While these laboratory studies remain unchallenged, Andrew Wakefield's claims are likely to retain some measure of credibility.

4. The programme also raises the issue of individual responsibility in sharing a very low level of risk from vaccination in return for large gains that will benefit a community. This matter is put very emotively in Hear the Silence - that children's vaccine-related adverse effects are the cost of society's commitment to herd immunity. (Although the film does responsibly indicate that there is not one shred of evidence to support a divided vaccine policy.) One does not have to be anti-vaccination to recognise that this is an issue worth debating, especially at a time when in some areas of health, such as HIV-AIDS, human-rights perspectives controversially dominate over traditional public-health approaches.

5. How do we as a profession value our patients' testimony? In this film, Andrew Wakefield says, "I can't censor the patients' story". His "evidence" is dismissed as "anecdotal" by colleagues. Yet doctors know that there is truth in both arguments. Patient histories can indeed be notoriously unreliable, and they certainly need to be supported by other evidence from physical examination, investigations, and so on. But histories can also sometimes contain essential truths that we as doctors must look for with care and attention. There are sadly countless examples where histories have been ignored, to everybody's cost. So why can we not discuss the value, validity, and imprecision of the patient testimony honestly and openly and calmly?

6. The Department of Health is portrayed as being cold and heartless in its reaction to Wakefield's arguments. But perhaps a more interesting question arises here, one that is only fleetingly touched on in Hear the Silence - namely, how should government respond to a challenge to one of its cornerstone public-health measures? It is surely reasonable to ask whether the Department has handled this matter effectively? Do we not want a health service that takes evaluation of policies, as well an technologies, seriously? And why can that debate not be conducted publicly?

In sum, while the characterisations in this film are sometimes ludicrously unfair (the depiction of Ken Calman, for example), and while Andrew Wakefield is romanticised to the point of embarrassing caricature, Hear the Silence is a thoughtful drama that raises important questions that both profession and public alike should be prepared to sit down and discuss. That one side of this much-needed engagement resists dialogue, with what comes across as a mixture of anger and scorn, seems to me to be unforgivable.

Richard Horton

Note: I have seen a preview copy of Hear the Silence. I did not take part in its production.

Competing interests: None declared

Where the problem really lies 12 December 2003
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CA Johnson,
Parent
LA9

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Re: Where the problem really lies

"All this film can do is raise anxieties," say David Elliman and Helen Bedford. They may be right. Most haven't seen it yet and until we do can't review or comment. But helpful or dangerous, many parents will view it as at least as trustworthy as the advice of the medical establishment, the vaccine manufacturers and the Department of Health. Just this week I listened to a doctor on BBC Radio 4 tell listeners that we should blanket vaccinate the UK for hepatitis B. When specifically asked about side- effects, he carefully ommitted the serious ones (including arthritis and heart problems) aired on the very same station a few days earlier! Why, I ask, if not to disseminate pro blanket-vaccination propaganda?

The one-size-fits-all approach to vaccination causes more needless deaths than a mere film, both by serious reactions to the vaccines and by breeding distrust of vaccines in general. It will not achieve its goal (herd immunity and the prevention of deaths from disease) as the public grows ever more skeptical and self-informed. The message from previous public health debates, e.g. BSE, is clear: acknowledge problems, research them, develop strategies to combat them, and the public will trust you. Ignore the personal testimonies, vaccinate all regardless and villify those who rock the boat, and you will breed yet more distrust.

Money must be put into researching why adverse reactions to various vaccines occur in a few cases. That is the way to combat public fear and falling uptake.

Competing interests: Mother of healthy (touch wood) children who have received MMR on schedule)

Richard Horton's view 12 December 2003
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Neville W Goodman,
Consultant Anaesthetist
Southmead Hospital, Bristol, BS10 5NB

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Re: Richard Horton's view

Richard Horton's observations about 'Hear the Silence' (which I have not yet seen) are valid, but any such observations must be made in the context of their being, first, overwhelming evidence in favour of the risk -benefit of the vaccine and, second, decreasing take-up of the vaccine, which threatens the public health. It seems to me that his observations bear the same relation to real life as much moral philosophy does: it is interesting to argue the points, but it's not what happens.

This play has received enough advance publicity for it to get higher audiences than Channel 5 usually gets. As Horton says of the play, "the characterisations in this film are sometimes ludicrously unfair (the depiction of Ken Calman, for example), and ... Andrew Wakefield is romanticised to the point of embarrassing caricature...". One has to ask: why these characterisations? The effect of the play will be to reduce the uptake of vaccine even further. I would be surprised if there were not epidemiologists out there waiting to correlate vaccination rates with the weeks before and days after the programme is broadcast.

Where I do agree with Richard Horton is in his questioning the government's attitude. By making single vaccines available for those who wanted them, while continuing to support the triple vaccine, they would have defused the issue, and Channel 5 would not have commissioned such a play. As I have quoted before (1), of the Italian government's response to Di Bella's claims to cure cancer, 'To ignore the emotional element in the public response is to omit a critical factor from the problem and thereby render it insoluble' (2).

1 Goodman NW. MMR: a public health disaster? Hospital Medicine 1998;59:584.

2 Anonymous. Support for a pragmatic health minister. Nature 1998;392:421.

Competing interests: None declared

Hear the Silence Reviews 13 December 2003
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Gary S. Goldman,
Computer Scientist
Gary S. Goldman, Computer Consultant

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Re: Hear the Silence Reviews

I have read numerous commentaries on the upcoming docudrama concerning MMR and Autism and was hoping someone could provide me with the "numerous epidemiological studies showing no link."

I have engaged in research recently that demonstrated the number of cases of autism among individuals aged 6 to 21 in U.S. schools increased from 12,222 in 1992-1993 to 97,847 in 2001-2002, for an overall increase of 700% [United States Department of Education, Individuals with Disabilities Act (IDEA). U.S. Annual Report to the Congress; http://www.ideadata.org/tables25th\ar_aa3.htm. Last accessed November 7, 2003].

The Denmark study by Madsen et al published in 2002 was believed to be the most exhaustive and therefore most convincing study concluding no association exists between MMR vaccination and autism in Denmark. This retrospective cohort study investigated 537,304 children during 2,129,864 person-years, born between 1991 and 1998, or a mean age of 4 years old. However, since autism is usually diagnosed at age 5 or older in Denmark, many children born in 1994 and thereafter had not as yet been diagnosed during this study period. Furthermore, of the 2.1 million person-years of observation time, 0.81 million person-years (537,304*1.5) or 39% were among children aged less than 1.5 years who had not received the MMR vaccination.

Thus, the systematic error associated with missing the majority of autism diagnoses in the Madsen study was a major shortcoming and the conclusions would have benefited by the additional consideration of both longitudinal autism incidence data and the examination of older cohorts. Children with Asperger's Syndrome and high functioning autism, who have minimal speech and behavior impairments, are not suspected and diagnosed as early as those children who have been deeply affected since birth.

Additional confounders inherent to the Madsen study contributed to further bias resulting always in the underestimation of autism among children immunized with MMR vaccine, thus leading to a defective conclusion.

The other historical studies that opposed a link between MMR vaccine and autism had insufficient follow-up time, too small sample size or insufficient statistical power, utilized passive surveillance, demonstrated conflicts of interests, or had other limitations that made the nature of the study inconclusive. These comments apply to the following studies that I have personally reviewed in great detail:

[1] Peltola H, Heinonen OP. Frequency of true adverse reactions to measles-mumps-rubella vaccine: a double-blind placebo-controlled trial in twins, National Public Health Institute and Children's Hospital, University of Helsinki, Finland, Lancet April 26, 1986; 1(8487):939-42.

[2] Miller C, Miller E, Rowe K. Surveillance of symptoms following MMR vaccine in children, Practioner Jan. 1989, 233(1461):69-73.

[3] Taylor B, Miller E, Farrington CP, et al. Autism and measles mumps and rubella vaccine: no epidemiological evidence for a causal association, Lancet, Jun. 12, 1999; 353(9169):2026-9.

[4] Patja A, Davidkin I, Kurki T, Kallio MJ, Valle M, Peltola H. Serious adverse events after measles-mumps-rubella vaccination during a fourteen year prospective follow-up. Pediatri Infect Dis J, Dec, 2000; 19(12):1127-34.

[5] Kaye JA, del Mar Melero-Montes M, Jick H. Measles, mumps, and rubella vaccine and the incidence of autism recorded by general practioners: a time trend analysis, BMJ Feb. 2001; 322(7284):460-3.

[6] Dales L, Hammer SJ, Smith NJ. Time trends in autism and in MMR immunisation coverage in California, JAMA March 7, 2001; 285(9):1183-5.

[7] DeStefano F, Chen RT. Autism and measles-mumps-rubella vaccination: controversy laid to rest? CNS Drugs 2001; 15(11):831-7.

[8] Taylor B, Miller E, Lingam R, Andrews N, Simmons A, Stowe J. Measles, mumps, and rubella vaccination and bowel problems or developmental regression in children with autism: population study. BMJ 2002 Feb 16; 234(7334):393-6.

[9] Wing L, Potter D. The epidemiology of autistic spectrum disorders: is the prevalence rising? Ment Retard Dev Disabil Res Rev 2002; 8(3):151-61.

[10] Elliman DA, Bedford HE. Measles, mumps and rubella vaccine, autism and inflammatory bowel disease: advising concerned parents. Paediatr Drugs 2002; 4(10):631-5.

[11] Makela A, Nuorti JP, Pella H. Neurologic disorders after measles -mumps-rubella vaccination. Pediatrics 2002 Nov; 110(5):957-63.

In my continuing research I found recent studies that include clinical and laboratory data suggesting that a link between MMR and autistic disorders is biologically plausible:

[1] Weibel RE, Caserta V, Benor DE, Evans G. Acute encephalopathy followed by permanent brain injury of death associated with further attenuated measles vaccines: a review of claims submitted to the National Vaccine Injury Compsensation Program. Pediatrics, March 3, 1998; 101(3 Pt 1):383-7.

[2] Singh VK, Lin SX, Yang VC. Serological association of measles virus and human herpesvirus-with brain autoantibodies in autism. Clin Immunol Immunopathol. 1998 Oct; 89(1):105-8.

[3] Kawashima H, Mori T, Kashiwagi Y, Takekuma K, Hoshika A, Wakefield A. Detection and sequencing of measles virus from peripheral mononuclear cells from patients with inflammatory bowel disease and autism. Dig Dis Sci, Apr. 2000, 45(4):723-9.

[4] Spitzer WO, Aitket KJ, Dell'Aniello S, Davis MW. The natural history of autistic syndrome in British children exposed to MMR. Adverse Drug React Toxicol Rev, Aug. 2001; 20(3):160-3.

[5] Singh VK, Lin SX, Newell E, Nelson C. Abnormal measles-mumps- rubella antibodies and CNS autoimmunity in children with autism. J Biomed Sci., Jul-Aug 2002; 9(4):359-64.

[6] Uhlmann V, Martin CM, Shiels O, et al. Potential viral pathogenic mechanism for new variant inflammatory bowel disease. Molecular Pathology, 2002; 55:1-6.

[7] Mehta BK, Munir KM, Does the MMR vaccine and secretin or its receptor share an antigenic epitope. Med Hypotheses 2003 May; 60(5):650-3.

I am hoping someone could actually provide me one or more references to support their side of the issue. Certainly when only a few cases of autism occur in close proximity to the MMR and cause late onset autism where there were verbal skills and other skills present and then a regression, it might be easy to dismiss these cases as due to coincidence. When there are hundreds of cases, one starts to think, "Can all of these be in error?" Presently, we seem to be beyond this stage.

Would appreciate your thoughts.

Sincerely, Gary S. Goldman, Ph.D.

Competing interests: None declared

Re: Hear the Silence Reviews 13 December 2003
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Mark Wilks,
Clin Scientist
St Barts Hospital EC1A 7BE

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Re: Re: Hear the Silence Reviews

I read Richard Horton’s letter on the Hear the silence’ debate with interest. Horton points out that there is ‘imperfect laboratory evidence that is claimed to support Andrew Wakefield's point of view’ and some of us might put it a bit stronger than that. But his claim that ‘(w)hile these laboratory studies remain unchallenged, Andrew Wakefield's claims are likely to retain some measure of credibility’ shows a complete failure to grasp the nature of the problem.

The believe that MMR vaccine and autism or colitis or a sub set of either disease or both diseases are linked to MMR cannot be refuted by laboratory experiments. It might be possible to demonstrate such a link, but it cannot be refuted by a negative result or a 100 negative results, it is simply a belief: just as someone who is convinced that a mobile telephone mast has given them (or a neighbour) cancer cannot be convinced by a sophisticated epidemiological study that there is no correlation.

The more interesting question is why such health scares find such a widespread and receptive audience in society, a point that Michael Fitzpatrick addresses in his book ‘The tyranny of health’.

No one would expect anything much of a Channel 5 programme anyway, but it was Horton‘s decision to publish the original study of 12 cases in the Lancet in 1998, albeit with a critical commentary, did more than any other single event to boost the anti MMR campaign, and I’m sure much more than this programme will.

Gary Goldman, in his response, finds fault with a number of epidemiological studies on MMR and autism, although I’m not sure how many of these he dismisses for ‘demonstrating conflicts of interest’. If he really can’t find ‘numerous epidemiological studies showing no link’, he could do worse than start with the most recent work from Taylor and Miller and co-workers of which he must be aware (1-4). Or has he dismissed those as these demonstrating a conflict of interest too?

1: Lingam R, Simmons A, Andrews N, Miller E, Stowe J, Taylor B. Prevalence of autism and parentally reported triggers in a north east London population. Arch Dis Child. 2003 Aug;88(8):666-70.

2: Miller E, Andrews N, Waight P, Taylor B. Bacterial infections, immune overload, and MMR vaccine. Measles, mumps, and rubella. Arch Dis Child. 2003 Mar;88(3):222-3.

3: Andrews N, Miller E, Taylor B, Lingam R, Simmons A, Stowe J, Waight P. Recall bias, MMR, and autism. Arch Dis Child. 2002 Dec;87(6):493-4.

4: Taylor B, Lingam R, Simmons A, Stowe J, Miller E, Andrews N. Autism and MMR vaccination in North London; no causal relationship. Mol Psychiatry. 2002;7 Suppl 2:S7-8.

Yours

Dr Mark Wilks Department of Microbiology

Competing interests: None declared

"Hear the Silence" Reviews 14 December 2003
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Gary S. Goldman,
Computer Scientist
Gary S. Goldman, Computer Scientist

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Re: "Hear the Silence" Reviews

The four manuscripts cited by Dr. Mark Wilks have a common author/coauthor, Andrews N, and a common confounder. This is best illustrated perhaps using the manuscript titled, “Recall bias, MMR, and autism” in which the abstract indicates parents of autistic children with regressive symptoms who were diagnosed after the publicity alleging a link tended to recall the onset as shortly after MMR more often than parents of similar children who were diagnosed prior to the publicity.”

When physicians and parents are told that vaccines are virtually completely safe and not made aware concerning the possibility that a severe adverse event can follow vaccination, often times such event is not correlated with the vaccination and as a consequence it goes unreported. In this instance, any such vaccine-induced adverse events that are reported are grossly underestimated. So, indeed, prior to publicity hinting that there might be a link, there were very few if any physicians and/or parents even willing to consider the possibility that late-onset autism may be linked with MMR vaccination. This reporting bias has skewed the data that has been analyzed and presents a significant confounder in the referenced studies.

Sincerely,

Gary S. Goldman, Ph.D.

Competing interests: None declared

societal responsibility 14 December 2003
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Jan M Perkins,
Assistant Professor
CMU 49340

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Re: societal responsibility

I appreciate the thoughtful response of Richard Horton and his raising the issue of societal responsibility in the choice of families to give vaccines.

I am not interested in debating the interpretation of research studies with closed minds and shall not do so. Instead I would like to address this issue of responsibility.

As others have noted there should not be a one size fits all vaccine policy. There are recognized reasons why some individuals should not have some vaccines. There are also certain to be unrecognized vulnerabilities. Where some individuals are predisposed to suffer damage such as autism and gut pathology from particular vaccination schedules is not know and cannot be known without better research.

Surely it makes sense to identify such vulnerabilities and allow altered schedules. Or if individuals are forced to follow a schedule that causes them harm in the name of benefiting society, then does not society have a responsibility to those individuals? Shouldn't society ensure that the individuals and their families who are destroyed by this be given enough support to allow their life to be endurable even if it can never be normal again?

Epidemiological studies, retrospective chart reviews, and the like cannot capture the gut pathology of autism or chart its timeline. When a child is spending his days smashing his head into a concrete floor and screaming it is easy to miss gut problems and hard for them to rate mention in medical notes. When treating the gut eliminates the behaviours it all seems so obvious. But for ideological, not scientific, reasons it is all but impossible to get a physician to acknowledge or treat the gut pathology.

In typical children who later acquire the diagnoses of ulcerative colitis or Chron's disease, the only predictive early finding is failure to thrive. If a parent can get a physician's attention long enough to get a height and weight on an autistic child, any variations are dismissed as artifacts of the autism or the self-limiting diets that often develop along with the autism and gut pathology. Even a plain x-ray to reveal the increase incidence of constipation on up to acquired megacolon or rectum in these children is very difficult to get.

I do believe that individuals should at times act for the greater good. But this means that society owes a debt to those who are harmed as a result. The all too frequent tragedies that occur when families are left to cope alone with severe autism make it clear that this debt is not being acknowledged and needed support is not provided.

There is also the broader issue of whether classic utilitarian ethics is the best model for the complex modern health care system. It works beautifully for managing a large computer network where defective systems can be scavenged for spare parts and thrown on the trash heap when they cease to have enough useful parts to make them valuable. With the increased number of sacrifices for the greater good required by using this model in health care, we risk creating a world in which unacceptably large numbers of individuals are left with the greatest misery.

jan perkins

Competing interests: Sibling of an individual who developed "atypical encephalitis" shortly afer MMR, mother of a severely autistic child who was developmentally normal till MMR, health professional committed to reviewing evidence with an open mind

Dr Elliman is WRONG 14 December 2003
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Kathleen F. Yazbak,
Director of a Nonprofit Organisation
Boston, MA 02114,
David Elliman, Helen Bedford

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Re: Dr Elliman is WRONG

“Hear the Silence” is a Channel 5 drama due to be aired on Monday, 15 December. The content of this programme has been widely discussed in newspapers and airwaves across Britain. I am utterly dismayed at the personal attacks being launched against Dr Andrew Wakefield, and am writing to publicly support his crucial research.

The obvious defensiveness of the public health authorities and government officials who have aimed their vitriol at Dr Wakefield speaks for itself. If there were no credence to a potential MMR-Autism link, why would they even give Dr. Wakefield the time of day?

I’d like to mention that many of the public health authorities who are bemoaning this programme are the very same ones to whom I have personally written incessantly over the last 6 years, and from whom I have never received a single response, not even to say, “I’m sorry you believe this happened to your child.”

There have been 2 articles published this week in The Guardian that mention “inaccuracies” in the script written by Timothy Prager. The source of these accusations hasn’t been publicly revealed. But the result is that we have a national British daily that has published unattributed quotes, and hasn’t even checked out the supposed inaccuracies. This is simply unethical, immoral and irresponsible.

Timothy Prager wrote “Hear the Silence” after meeting many families like mine. Juliet Stevenson’s character, Christine Shields, is an amalgam of the hundreds and thousands of us who have witnessed, with horror, our previously normally-developing child regress into autism.

“Hear the Silence” has a strong message: Why is the medical research simply not being allowed?

So I ask, why aren’t the authorities concerned that the incidence of autism is sky-rocketing? The Scotsman published the following quote just this week, on 6 December, 20003: “One primary age child in 49 has been diagnosed with, or is awaiting diagnosis of, autistic spectrum disorder in the Inverness area, according to the survey carried out by the authority’s education department.” This statistic is staggering.

I also wish that the authorities would stop saying that regressive autism is not a new phenomenon. Dr. Bernard Rimland, who runs the Autism Research Institute in San Diego, CA, and who has been compiling statistics on autism for over 40 years, said on July 14, 2002, “Late onset autism, (starting in the 2nd year), was almost unheard of in the ‘50s, ‘60s, and ‘70s; today such cases outnumber early onset cases 5 to 1, the increase paralleling the increase in required vaccines.”

And if it isn’t MMR, then what is causing this epidemic? I can tell you that the answer is not to be found in the epidemiological, or “statistically” based studies that those in authority purport as the final word. Parents need to be interviewed and children need to be examined. In my son’s case, when the team at the Royal Free Hospital conducted biopsies during a colonoscopy, they found something sinister: measles genomic RNA in the walls of his intestine. Why aren’t the authorities concerned about the presence of vaccination strain measles in some children with autism?

Shouldn’t the health of our children, and not political imperatives, come first?

Isn’t there enough smoke around this topic to allow parents the choice of single vaccinations rather than forcing them to choose between MMR or nothing?

Only when the scientific research is allowed will we know definitively whether MMR causes autism in certain children. Please know that I am one of thousands of mothers who will not stop being a thorn in the authorities’ sides until this research occurs.

Kathleen Yazbak Boston, Massachusetts

Competing interests: I am the mother of a 10 year old boy who suffers from regressive autism and bowel disease, and has measles genomic RNA in his gut tissue

Hear the Silence 14 December 2003
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William Pimm,
Student
tr112af

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Re: Hear the Silence

Dear Ed

Up till now supporters of MMR vaccination have tried to use science to support their cause, pointing out flaws in Wakefield's research methodology and publishing studies that show there is no link between autism and MMR vaccination. Central to this argument is an examination of the strengths and flaws in methodology, but this makes boring television and is not understood by newspaper hacks or TV journalists and is a complete turn off for the viewing public.

Can you imagine Jeremy Paxman and David Dimbleby quizzing scientists on confidence intervals, correlation coefficients and the difference between association and causation. No - my advice to the advocates of MMR vaccination is to hit back with another TV film in which paediatricians and scientists who support MMR are portrayed in the same romantic light given to Andrew Wakefield in 'Hear the Silence' , with Sean Connery (or better still Russell Crowe?) playing the part of Brent Taylor, who can be portrayed comforting parents whose children have died or been brain damaged from measles, while he pursues honest scientific endeavour in the face of media headlines spreading scare stories about the risk of vaccination. Meanwhile Andrew Wakefield can be portrayed as an adult surgical gastro-enterologist, with minimal training in paediatrics, little contact with the on-going care of children with autism, no expertise in the management of autism, but handsome, telegenic, self promotional, and giving desperate parents a much needed explanation for their child's problems.

I hasten to add that this suggestion has no bearing to the facts as they stand, and any resemblance to characters living or dead is entirely coincidental if not completely false.

Will Pimm

Competing interests: None declared

Beliefs are just Beliefs ? 14 December 2003
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L S Lewis,
General Practitioner
Surgery, Newport, Pembrokeshire UK SA42 0TJ

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Re: Beliefs are just Beliefs ?

<The believe that MMR vaccine and autism or colitis or a sub set of either disease or both diseases are linked to MMR cannot be refuted by laboratory experiments. It might be possible to demonstrate such a link, but it cannot be refuted by a negative result or a 100 negative results, it is simply a belief: >

Such a crass and disingenuous statement presupposes that these 'beliefs' are mistaken, surely ? Or is Mark saying that ALL beliefs are incapable of disproof ? I currently believe that MMR does not cause Autism. But evidence would change my mind.. Karl Popper showed better than I that Science proceeds by serially discarding hypotheses ( ie: by showing certain beliefs to be untenable - so make a new hypothesis).

Gary Goldman has summarized his rational researches to date into the question 'Can one refute the statement that MMR did cause autism ?'. The hypothesis should be stated thus:-

'MMR Vaccination increases the incidence of Autism'

Failure to find statistical significance should lead to rejection of this 'belief'. I put it to you, Mark, that thoroughgoing pilot studies comparing Treated vs 'untreated' groups, can straightforwardly confirm or refute the hypothesis, and should have been performed before any Mass Medicine be recommended. To date such studies as there are can be sullied by critics, and the general public shuns MMR. History shows that single vaccinations (ie: the schedule prior to MMR introduction was NOT associated with anything like the current rates of autism ). That schedule did protect against Measles - but sadly today doubting parents are NOT allowed by State and licensing laws to return to that option... Isn't this unreasonable ?

Meanwhile Autism goes on rising, whilst MMR is falling !! Armed with this knowledge ( or is that a mistaken belief, Mark ? ) can we now get on with acceptable single or multiple vaccination schedules, and look vigorously elsewhere for the real causes of Autism? I agree with Richard Horton. Public Health professionals are foolish not to seize the opportunity to get into the Channel 5 debate...

Hear the Silence ?

Competing interests: Maximising Vaccination VS. Free Society

Re: Another view 14 December 2003
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David Elliman,
Consultant in community Child Health
Great Ormond street Hospital, London, WC1,
Helen Bedford

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Re: Re: Another view

Richard Horton does us a disjustice when he implies that our criticism of the film shows a lack of compassion. We frequently speak to parents who, because of the grossly distorted media portrayal of Dr Wakefield's research, are anxious about allowing their children to have the MMR vaccine. The parents' distress is entirely understandable, but should have been unnecessary because of the lack of evidence for the MMR- autism link. We have repeatedly stated this and our sympathy for parents with autism. To say that the film throws up doubts about the supposed MMR- autism link and is mainly a depiction of autism suggests that Richard has not seen the same film that we did and all the other people whose accounts we have heard or read about. Even those sympathetic to the film have not come away with this impression. It is very clearly an account of the search of a mother and a doctor for the cause of autism. Once they came up with a hypothesis linking the development of autism and the administration of the MMR vaccine, nothing else is considered and the dramatic licence allows the producers to make no significant mention of any opposing views. It is indeed easy to condemn the film as being one-sided, because it is. Enormous sums of money have been spent on research into autism and this research continues. It is a great pity that money has had to be spent in refuting an hypothesis which should never have been given the attention it has received.

Richard suggests that professionals don't listen to parents enough. This may be true, but listening to parents means just that. It means listening carefully to what they say, (after all they do know their children best) and then interpreting what they say, turning it into a credible hypothesis and testing it. If a parent tells us that A follows B, we should not doubt that. If a parent tells us that A caused B, we should use our training to test out whether that is likely. To do anything different is abrogating our responsibility of care.

Neither of us has resisted dialogue in the past and nor will we in future. However we have no intention of adding respectability to what is essentially a piece of irresponsible entertainment. If Channel 5 really did want to open up the debate in a useful manner, then they would have made a very different film. One that really was a thoughtful drama, something this was not.

Competing interests: We have received funding for research from vaccine manufacturers.

Two separate questions 14 December 2003
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Ed Cooper,
Locum Cons. Community Pediatrician
Gt Ormond St, London WC1

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Re: Two separate questions

Much of the confusion is caused by the conflation of two questions into one. I have found this when I talk with families in immunisation advisory clinics; it is there in some affected parents’ BMJ rapid response contributions; and it appears now that even the editor of the Lancet is not quite free of it.

Here is one question: is there any connection between measles virus, natural or attenuated for vaccine use, as one strain or another, and autism?

Here is another question: if - if - there is any connection between measles virus and autism, is it influenced by giving, simultaneously, two other attenuated strains of live virus, mumps and rubella, together with the attenuated measles virus, as a vaccine?

The first question is a good research question. Andrew Wakefield and some colleagues asked it. Wakefield had previously asked another good research question: Crohn’s Disease is gut inflammation of quite unknown cause – could measles virus, wild or attenuated, be implicated in its etiology? He chose reasonable strategies to try to answer the question and, without the certainty that is so elusive in science, he and others, friends and enemies, effectively came up with the answer: no.

In the course of that research the autism question came up. Autism is like Crohn’s Disease in that its cause is a complete mystery. Wakefield and colleagues published the 1998 Lancet paper. It was a question-raising paper, proposing a hypothesis but not testing it. Testing a hypothesis involves testing it against potentially refuting data, either simultaneously through some sort of control, or later through predictions following from the hypothesis that are either borne out or fail.

In that 1998 paper there was a complete absence of any controls, but the predictions have subsequently been tested and – without the certainty that is so elusive in science, etc., etc. – they have not been borne out. It was still a valid question. Tired and frustrated public health doctors are disgruntled that the Lancet published a paper so much weaker than many that have been rejected, but the Lancet has always seen its function as grabbing new ideas, it was not such a big sin, Dr. Horton is fairly clean in responsibility for the subsequent debacle.

But, in the public relations business that went along with the launch of that 1998 paper, at a press conference, Dr. Wakefield emitted an idea of his own, based on no research, just a thought: maybe it was better not to combine measles vaccine with mumps vaccine and rubella vaccine. And the trouble began.

Time and again since then there have been headlines in the press along the lines of: “New research throws further doubt on controversial MMR vaccine”, but there is never anything to read below the headline on mumps or rubella. To the best of my knowledge, Wakefield himself has attempted no research on MMR vaccine, just on measles vaccine and measles virus.

As things stand, anyone who has doubts on giving their child MMR vaccine should have the same doubts on giving their child measles vaccine alone, as a single vaccine. Parents who fear MMR are generally willing to give single measles vaccine because they know that any risk of that vaccine is outweighed by the risk of measles, a condition that makes children much sicker than modern parents find tolerable even when it is uncomplicated, and that kills or maims them when it is complicated. Presumably the risk they tolerate on behalf of their child includes the tenuous, speculative risk of autism following the single vaccine. If they are willing to give single measles vaccine then they can only be unwilling to give MMR if they believe that there is some evidence suggesting a difference in late side-effects between measles vaccine in MMR and measles vaccine alone, and there is absolutely no such evidence. There is no reason to seek it because there is no basis for a research question. There is no more reason to test MMR vaccine for late side-effects against a single measles vaccine of the same strain than there is to test a blue vaccine against a white vaccine. That has not been done either. It is not absolutely, formally impossible that blue vaccine is safer than white vaccine, but naturally the list of possible questions of the blue-white type is infinite.

This is why almost no public health and child health doctors view the single-vaccines alternative as the middle ground, the compromise area. A programme attempting six separate single virus injections per child (on top of all the other immunisations) could only harm attempts at population herd immunity, as well as causing pain and increasing fear in individual children. To embark on such a programme in the absence of any reasoning – well, no.

The debate, however, is bringing up real issues on individual choice versus the public good and some of the most telling points have been made in BMJ responses from parents, professionals, journalists and others, from all over the world. But the debate has not been served by conflation of possible risks of attenuated live measles vaccine with the risk of a combined vaccine.

Competing interests: None declared

Why don't you ask 'Why'? 14 December 2003
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Heather C Adams,
none
02030

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Re: Why don't you ask 'Why'?

Sir,

So yet again the debate on MMR rages as it has done so for many years. Numerous studies have been published supposedly supporting its safety. As a parent of an affected child,I remain perplexed as to why none of these studies has looked at the affected children . At what point will the professional members of your subscribers turn their considerable energies to asking why these children developed bowel disease along with developmental regression? I fear this curiosity will remain dormant for many a year to come and in its abscence I have grown weary of relying on your profession for answers. Reluctantly, I moved my family to the USA two years ago where difficult questions are more readily aired and political will to address the catastrophe of autism is not buried in invective rhetoric at those seeking answers.

Competing interests: Parent of autistic child.

A conspiracy of silence 14 December 2003
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GH Hall,
Retired physician
EX1 2HW

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Re: A conspiracy of silence

What has been wrong with the whole MMR fiasco and indeed other vaccination problems is the refusal of the authorities to reveal what they knew about the efficacy and safety of these products before they were released. How stringent were the tests? Where were they done, and by whom? Was there any independent assessment? What numbers were involved and what was the power of the studies to reveal a 1%, 2%, 3% risk of damage at 1, 2, 3 years- and so on? Why aren't the drug firms obliged to open their work books about results on currently used vaccines? Why is it permissible to excuse workers in this field of the conventional mandatory need to run proper randomised controlled trials to obtain convincing answers? The usual answer to these questions- if one can elicit a response at all -is that the whole matter of population protection is too important to be subjected to this sort of delay and questioning. This amounts to a classic example of begging the question- ie, assuming you know the answer already. The hypocrisy of the DoH mandarins, BMA and academics is sickening: openness, honesty, and transparency are promised but not delivered when the chips are down. The public is right to suspect that things are being hidden from it. The issue is not whether or not MMR causes autism or Crohn's disease, but to expose the real facts about the competence or otherwise of vaccine and drug testing, and why discussion of these matters is suppressed. Our watchdogs have been debarked, and I for one am pleased to see that the media are keeping up the pressure.

Competing interests: None declared

Re: Two separate questions - but to one we KNOW the answer 15 December 2003
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L S Lewis,
GP
Surgery, Newport, Dyfed, SA42 0TJ

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Re: Re: Two separate questions - but to one we KNOW the answer

Ed Cooper states..

< As things stand, anyone who has doubts on giving their child MMR vaccine should have the same doubts on giving their child measles vaccine alone, as a single vaccine. >

But he forgets that we gave single measles vaccine to infants long before MMR was invented. I certainly did - for 15 years before MMR the childhood vaccination schedule included single measles vaccine at 9 months. The rate of Autism was much less than it is today - even allowing generously for 'unrecognised cases'. We therefore KNOW it was safe in this regard !

Yet the DOH is taking issue with ANYONE who offers single Measles vaccine - because it mistakenly believes it 'undermines' its own case for MMR. The single products are no longer licensed 'because the manufacturers did not apply', but off-licence use with informed consent by a doctor remains (for the moment) legal and difficult to obtain.

I am not against MMR - I believe it is safe - but I am in favour of facts being acknowledged, and false arguments being refuted.

So Ed - would you care to retract your statement ?

Competing interests: None declared

Re: Re: Another view 15 December 2003
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M C Feliciello,
N/A
Leeds

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Re: Re: Re: Another view

Dr Elliman, in your rapid response of 14.12.03 I noted the comment:

"If a parent tells us that A caused B, we should use our training to test out whether that is likely. To do anything different is abrogating our responsibility of care."

Which is laudable, but I was curious as to how often this rigorous testing has been carried out in laboratory conditions rather than relying on apparently questionable statistical analysis.

After all, the parent is citing the individual case of their childs health history not that of a population, would it not be good manners to investigate the individual claim in each instance?

MCF

Competing interests: Parent of Autistic child

Re: Re: Two separate questions - retract or clarify? 16 December 2003
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Ed Cooper,
Locum Cons. Pediatrician
Gt. Ormond St, London, WC1

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Re: Re: Re: Two separate questions - retract or clarify?

I can retract willingly enough, because I agree with Dr. Lewis that measles vaccine does not cause autism. But the sentence he objects to is only intended as an "if...then..." argument: if and only if you fear MMR as a generator of autism, then you should fear single measles vaccine by the same token. Dr. Lewis points out one more good, historical reason not to fear single measles vaccine. My point is that fear of the addition of mumps and rubella to that vaccine is a separate question from the fear of measles vaccine itself. Whereas there is contentious, convoluted and suspect "evidence" for the measles fear - DNA signal from gut cells, for example - there is no evidence of any kind whatsoever, good, bad or indifferent, for the other fear.

Giving single vaccine to a young child in 2003: to perform a second- best medical procedure in the absence of any argument for it other than the irrational choice of the patient's proxy, against what I believe to be the best interest of the patient, troubles me.

Competing interests: None declared

Re: Re: Two separate questions - and the lessons of historyfy? 17 December 2003
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L S Lewis,
General Practitioner
Newport, Pembrokeshire, SA42 0TJ

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Re: Re: Re: Two separate questions - and the lessons of historyfy?

Thanks Ed for being so kind. We both agree that Single measles Vaccine does not cause Autism.

But some parents fear that combination MMR might, and I cannot persuade them otherwise. So I want to be allowed to give them what we both agree is a safe alternative - single Measles vaccine. This worries you, not me. Compulsion and brow-beating is not an option. If I am not allowed to give single Measles vaccine then the child will go unvaccinated. Soon the threshold of 'herd immunity' will be crossed and severe Measles mayhem will follow (Mumps and Rubella are not an immediate danger - consequnces will come smaller or later ). I would prefer to get on with consent and raise the rate of Measles immunisation.

Back to your 'worries' about accepting parents concerns and offering second-best.. Isn't that exactly how we weathered the public's collapse in confidence in Pertussis ? - We continued with DT&Polio, as 'second -best'... and continued to discuss, explain and negotiate with parental concern. DT&Polio, and separate D, T, or P remain available at Doctors' discretion. It is also interesting to note how an authoritarian line that Pertussis was 'completely safe' soon gave way to admissions that Some vaccines were worse than others - and eventually we switched to Acellular Pertussis. The DOH has chosen to ignore this experience, and instead persists with an authoritarian line that 'nothing else but MMR will be allowed'. Such a line, in the face of unpersuaded parents who withhold consent, beggars belief. It is fiddling while Rome burns - and looks to some parents like offering BSE burgers to our children.

Best Wishes,

Competing interests: None declared

We heard the silence 18 December 2003
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John Phillip Heptonstall,
Director of The Morley Acupuncture Clinic and Complementary Therapy Centre
Leeds LS27 8EG

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Re: We heard the silence

Sir

The authors 'rose tinted spectacles' view of the medical approach to dealing with autistic children and their parents is unsurprising...it would take little research for them to have an accurate perspective, as that shown in the film, something they have obviously not done despite their stated roles - I notice the lack of declaration of their status as having been oft' funded by vaccine supliers, perhaps the BMJ could correct this omission.

The silence my wife and I heard from the medical system when our son was pre-diagnosis was deafening. GPs were oblivious and uncomfortable; he was managed by a Professor of paediatric neurology for a couple of years; then a Child Development Centre Consultant for a couple of years; and a Professor of Psychiatry for poor sleep for months who we later found had written of his suspicion of autism in our sons medical notes but had not told us, but he had told the Child DC Consultant. A Speech Therapist later admitted to us that 'it was more than her jobs worth to have informed us of her suspicions of autism during the 2 years she worked with him'....the list goes on.

Granted this was in the late '80s/early '90s but what sort of medical fraternity denies patients - children - and the people entrusted with their care (parents) their suspicions of autism. WE had to confront the Psychiatrist about his suspicions of autism, he then had to show us his file, we then had to confront the Consultant. Gps had been singulalry useless in the face of autism, and the education system and educational psychologist referred to our son as 'severely mentally retarded' without mention of autism.

It was schools for autism Headteachers who so easily 'diagnosed' him - through his demeanor, movements, actions in certain surroundings, the sounds that he made we were told were typical of a classically autistic child.

We sought a further Psychiatric opinion and the Professor rapidly confirmed the autism.

The whole system - government, medical, educational and social is still in denial about autism and the consequences to society, though less so thanks to the enduring publicity autism has received this past decade. A diagnosis leads to special needs funding - finance - and therein lay the problem according to people we dealt with over the years - lifelong funding; funding by the public for the public, the same public who unwittingly pay for vaccines that probably cause a good percentage of autism while the system remains in denial.

The portrayal on TV of an autistic child and his family was not untypical from our experiences, and of families with autism we know; some families have had a much harder ride and continue to do so - the programme probably portrayed a middle way.

The debate that followed was a travesty - the 'system' could not find a scientist to debate with eminent scientists 'worried about MMR'. No one of scientific import would appear to debate for the public and MMR on such an important and emotive topic - yet they seem very eager to front epidemiological studies on behalf of government that are so obviously scientifically flawed - a pretty damning endightment on government scientists and strong confirmation that most scientific evidence in favour of the MMR probably lacks conviction. One hopes the public learnt a good lesson.

Regards

John H.

Competing interests: An autistic son

Hear the Silence 18 December 2003
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Fred V Griffiths,
General Practitioner
Polzeath Cornwall PL27 6UG

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Re: Hear the Silence

Concerning this very biased documentary, I felt that there was one big flaw in the storyline. By any standards, this child's reaction to the first injection was severe.

--When he had the second injection was enquiry made about this? If not why not. I believe many would not have given it. I certainly would not.

--F.V.Griffiths General Practitioner.
--Medical Adviser to InfoGenie Ltd/Norwich Union HealthCare.

Competing interests: None declared

Re: We heard the silence 18 December 2003
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MC Felicello,
n/a
Leeds

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Re: Re: We heard the silence

John Heptonstalls response of 18.12.03 brings into sharp relief an issue often overlooked, but was touched on in the film "Hear the Silence"

Regardless of parental suspicions of aetiology of Autism, one of the many facets that appears to unite Parents and Carers is a deep and well founded bitterness due to the fragmented & disparate nature of the diagnostic procedures and subsequent inadequate care pathway.

Johns' account is not too dissimilar to that of other parents and reflects the lack of co-ordination of awareness or resources still prevalent.

Dietary Intervention as touched on in the film, is as yet little understood or implemented by health authorities. Usually funded and managed by the parent as the most appropriate and effective non- pharmacological means of reducing their childrens pain and "fog". In many cases it provides the platform of increasing clarity necessary for successful implementation of educational strategies of which ABA is but one.

ABA is as yet an intervention to be fought for on an individual basis with each LEA. Expensive, intensive and all too often funded by the parent as the most appropriate tool to reach their child, it can provide the means to allow the child access to mainstream education as depicted. I know of at least one couple resorting to a re-mortgage of their home to continue educational intervention in this way, though that option is not available to every family affected.

In one scene, the character Christine Shields chooses to read the fairy tale of "The Little Red Hen" to her children; a tale that may yet offer some insight to those who have professional contact with parents of affected children and have failed to employ listening skills.

MCF

Competing interests: parent of an autistic child

MMR 19 December 2003
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Carol C Williams,
Clerical Assistant
Mount St Nottingham NG1 2BR

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Re: MMR

When my daughter had the DPT, oral polio, hib at 6 months she reacted badly and had a respiratory arrest. It took 2 years for her development to get back to normal, during which time I had to look after her and only when I flipped in hospital did I get any respite care. I would like to ask Dr Elliman why even with daughters previous reaction is it still recommended that she has the MMR. It seems to me that health professionals are just thinking about getting a higher uptake of the MMR and forgetting about the child itself.

Competing interests: None declared

Re: MMR 19 December 2003
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Penny Mellor,
Advocate
Home WV9 5HX

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Re: Re: MMR

Andrew Wakefield, that's what I call a doctor, committed, brave, caring and somebody who listened to parent's concerns and didn't dismiss them as being "over potective" or "hysterical" and not a "munched" mother in sight!

I am a mother to 8 children ages ranging from 24 years down to two, all my children were breastfed until they were at least one with the exception of my last baby who was stopped when Judge Guy Whitburn put me in prison.

None of my children have ever been vaccinated with anything apart from BCG not just because of the controversy, because not one solitary scientist has ever been able to show me any evidence that I had not adequately immunised my children via the breastfeeding, neither could they tell me that if I had have vaccinated on top of antibodies already recieved via me, would I be overdosing them.

Here are the facts for the fence sitters.

Not one of my children (and it can't all be genetics because there are three different fathers) has any allergies, asthma, learning problems, had apnoea, gut problems, nothing and apart from a couple of bangs on the head which had to checked at A & E, none of them have ever been hospitalised, none go to the GP's, none of them are ever ill apart from the usual childhood illnesses. Within my family on my mothers side, they all suffer from hayfever, that has not manifested itself in my children.

All my children contracted the usual childhood diseases all were kept off school and drove me mad because they were fit as fiddles, all play outside in the dirt, climb trees, fish in streams etc, I have two cats and two dogs so my children have been exposed in every sense possible to diseases that according to the government could kill or maim them.

Simple question, if GP's are paid to encourage uptake of the MMR vaccine and "breast is best" why aren't they paid to encourage to get more women breastfeeding?

SIDS is at a much lower rate with breastfed babies and all the recent research proves that it helps babies develop positively in every area, not to mention the automatic immunity against diseases the first few days of breast feeding gives a child.

So I see this as my own "research". Breast is best and I believe that my children are living proof that there are alternatives to vaccines, much less lucrative for the drug companies of course, because of course collustrum can be obtained for free!

Competing interests: Cynical about the medical profession and their links to the drug companies

Autism protocol 19 December 2003
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Ellen C G Grant,
physician and medical gynaecologist
20 Coombe Ridings, Kingston-upon-Thames, Surrey, KT2 7JU, UK

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Re: Autism protocol

Maddalena Feliciello has asked me if I use the DAN (Defeat Autism Now) protocol, which is described at www.autism.com. This has been developed by Bernard Rimland, whom I first met at a Clinical Ecology Conference in Miami in 1979. We had already found that allergic reactions to foods were more common in migraine patients with higher serum copper/zinc ratios. Wheat and milk were the commonest food precipitants to be unmasked by exclusion diets. Clinical Ecologists in the UK are usually members of the British Society for Allergy, Environmental and Nutritional Medicine and have the advantage of being able to use Biolab Medical Unit for relevant investigations. Similar protocols are used for most patients. We published evidence from two studies that children with specific learning problems had lower zinc in thier sweat and higher toxic meatls in their sweat and hair than children without problems.

Preconception care involves attempting to reduce the risks of unexplained infertility and recurrent miscarriages and unhealthy children by assessing nutritional and toxic metal status in prospective parents, who may be otherwise symptomless. Ideally, repletion of common deficiencies, usually of zinc, magnesium, manganese, chromium, selenium, molybdenum, B vitamins and essential fatty acids, should be confirmed several months before conception. A functional superoxide dismutase test is needed to determine copper status. As about one in three pregnancies are unplanned, annual testing seems to be the way forward.

Zinc deficiency and toxic metal overload increase the risk of recurrent infections. Repeated courses of antibiotics increase the risk of a positive gut fermentation test and also increased gut permeability to larger than normal protein particles, including those from wheat and milk. Zinc and magnesium deficiencies increase the numbers of foods causing demonstrable reactions, such as changes in pulse rate. Long-term zinc deficiency can reduce pancreatic exocrine secretions, which in turn, also prevents absorption of nutrients or supplements.

High protein low allergy diets, monitored nutritional repletion, antifungal medication and immunoglobulin-containing probiotics are used to treat or prevent many conditions. Excessive consumption of wheat and milk can increase urinary losses of zinc and magnesium, which in turn cause B vitamin and EFA pathway deficiencies. Lead levels have reduced because of lead free petrol but mercury levels can increase from tuna consumption, dental amalgam and some vaccines. Most cadmium contamination is from tobacco smoke and aluminium from food containers.

Competing interests: Mother of two dyslexic children

More than just being wrong 22 December 2003
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Lenny Schafer,
advocate
Schafer Autism Report, 9629 Old Placerville Rd. Sacramento, CA 95827 USA

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Re: More than just being wrong

The outrage expressed over Channel 5's Hear the Silence by those on the front-lines of care [. . .] is understandable and justified.

That one side of this much-needed engagement resists dialogue, with what comes across as a mixture of anger and scorn, seems to me to be unforgivable.

Well, which is it Mr. Horn? Should caregivers’ outrage be “justified’ or ‘unforgiven’? I, however, anticipate the day when the truth finally emerges and perhaps many of those obfuscators in pubic health and their apologists would face the justice of medical tribunals for their criminal negligence for ignoring the autism epidemic. Know sir, that you and fellow collaborators face a far greater consequence than the embarrassment of being wrong. You are accessories after the fact for the iatrogenic epidemic of autism. However, if I’m wrong, no big deal, I’m supposedly only an ignorant, hysterical parent of a child with autism. Perhaps, but many such parents are getting very tired of eating your medical cake. If not vaccines, then what? Why aren’t our children being properly examined? Since when do public health officials ignore the victims of a potential epidemic? Since they have developed conflicted interests like saving their hides over dirty vaccines.

Competing interests: Writer has a child with autism.

Reviews of "Hear the Silence" 23 December 2003
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Donna M. Samuels,
mother and homemaker
Mt. Washington, KY 40047

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Re: Reviews of "Hear the Silence"

In regards to the negative reviews of the “Hear the Silence” TV drama, a quotation comes to mind spoken during the Congressional hearings on Thimersol-Containing vaccines. During these hearings, Bernard Rimland, the founding director of the Autism Research Institute of San Diego, stated he once heard, “The chronology of man’s progress is the history of authority refuted.”

The link between thimerosal-containing vaccines to neurodevelopmental disorders has biological plausibility. It is a moral and scientific imperative that this issue be fully investigated with the highest level of professional integrity.

Competing interests: I am the mother of a son with autism.

There are non so blind... 25 December 2003
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Paul Lynch,
Patient advocate
Swansea

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Re: There are non so blind...

Having already responded to Michael Fitzpatricks' damming review of "Hear the Silence" (1) I find myself somewhat disappointed that yet again competing interests have not been declared. David Elliman and Helen Bedford have both received money from the vaccine manufacturers SmithKline Beecham and Pasteur Merieux Merck Sharp & Dohme. And, that Elliman and Bedfords' subsequent report was used by the government to reiterate its obstinate and increasingly polarized view that the MMR vaccine is (allegedly) safe. (2)

Perhaps these staunch supporters of the MMR vaccine have been blinded by glare of the mercury career ladder within the medical establishment (the hotter the topic the higher they rise) and are therefore unaware that the autism process has been objectively and cogently explained far beyond their own explanations (3), consequently rendering their opinions extremely naive, if not entirely suspect..

Regards, Paul Lynch

(1) http://bmj.bmjjournals.com/cgi/eletters/327/7428/1411?ck=nck#43975

(2) http://www.whale.to/m/all/elliman.html

(3) http://www.countrydoctor.co.uk/education/education%20- %20Pollution%20update,%206.03.htm

Competing interests: None declared

Re: There are non so blind... 26 December 2003
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Thomas Valentine,
teacher
n/a

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Re: Re: There are non so blind...

Dear Paul Lynch

I suggest that you have tried to counter the views of Helen Bedford and David Elliman by pointing out a real or perceived conflict of interest but you have not addressed the issues that they raised in their review. It is legitimate to point out a conflict of interest, but a conflict of interest, real or perceived, does not in itself, mean that a statement or argument is false.

Thomas Valentine

Competing interests: None declared

Re: Re: There are non so blind... 27 December 2003
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Paul Lynch,
Patient advocate
Swansea

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Re: Re: Re: There are non so blind...

Dear Thomas Valentine,

I thought I had expressed my opinion of the so-called issues raised in the review by Bedford, Elliman and indeed Fitzpatrick more than sufficiently. However, for the sake of clarity, I shall sum up in one word: "Humbug".

All in all it's just more bricks in the wall of silence.

Regards, Paul Lynch

Competing interests: None declared

Re: Re: Re: There are non so blind... 27 December 2003
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Thomas Valentine,
teacher
n/a

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Re: Re: Re: Re: There are non so blind...

Dear Paul Lynch

You succinctly sum up your opinion of the review by Drs Elliman and Bedford as 'Humbug'. Does this apply to their comments that the film is "an accurate portrayal of the extreme difficulties of looking after a child with autism and the obstacles in the way of getting appropriate educational provision" or a factual statement when they point out that "at one time Dr Wakefield believed he had proven a link between the single measles vaccine and adult Crohn's disease" ?

Would it not be more accurate to say that the parts of the review that you found to be humbug are where the opinions of Dr Elliman and Bedford differ from your own?

Best wishes

Thomas Valentine

Competing interests: None declared

Blair answer the question or resign 1 January 2004
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Brian George Smith,
Retired
n/a,
SS8 8LL

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Re: Blair answer the question or resign

A lot of minds would be put at rest if Tony Blair would answer the main question in everyones' minds. Did his child have the MMR.? I am sure if he had he would have been the first to say.

Also I consider Government officials should be treated in the same way as Heads of Industry when they make mistakes such as this, which is going to result in terrible hardship for children and their families.

At the end of the day it is the Governments' responsibility to make a decision about the MMR debate. There is a major problem and we know it as grandparents of an affected child. Tony Blair knows this also and should allow the research by Dr Wakefield and his colleagues to continue or how else are these children who have been affected by vaccine damage going to be helped.? There could be a cure out there and the government is preventing this being found.

Stop thinking about money and think about the children in this world who are paying for the mistakes of Government and Drug Companies.

I am sure any government officials with new babies will not be subjecting their child to the MMR vaccination !!

Sincerely, Brian G Smith (Mr) amiexe

Competing interests: Grandson suffering with adverse to MMR

For those who do not believe that there are serious side effects from live or attenuated vaccines 4 January 2004
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Alan Challoner,
Retired
LL18 5UR

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Re: For those who do not believe that there are serious side effects from live or attenuated vaccines

In response to those who do not believe that there are serious side effects from live or attenuated vaccines, I would like to suggest further areas for research based on the following evidence.

The fact that there even exist different strains of the vaccine has to do with the way they are produced. Most vaccines in use today contain live, attenuated viruses (as do measles, polio, rubella, influenza, yellow -fever, varicella).

The "transmutation" (attenuation) of a virulent wild strain into a vaccine is today still an empirical process. The virus is subject to several passages in various cell cultures under non-optimal growth conditions. Through this process the virus changes its specific properties, remains however a "live" virus. The mechanism involved in this attenuation is not known in any detail. Following that, a few safety investigations are made and the reactivity and efficacy is tested on laboratory animals and volunteers.

Live vaccines posses a higher risk of contamination with micro- organisms than other vaccines. Oncogenetic viruses are, for example, present in mammalian cell strains used in vaccine production. [1]

Live vaccines attenuated by conventional procedures are commonly carriers of unknown genetic modifications. Particularly when these modifications are only minor, like localised mutations, the danger of back mutation into a pathogenetic virus is possible.

Because vaccines are applied million-fold on entire populations, overlooked viral contaminations, back mutations, new mutations of the attenuated vaccine, or insufficient attenuation of the pathogene may have dramatic consequences for a large number of people. [2]

This would be consistent with an existing theory that autistic individuals suffer a chronic state of over-arousal, and portray abnormal behaviours to diminish the arousal. The lack of lateral inhibitors, contained in the cortex, would affect an individual's ability to discriminate between competing sensory information, (Casanova, idem). Researchers do not yet know whether the difference in the number and size of the mini-columns is attributable to a gene mutation or some other factor. [3]

The U.S. Department of Health & Human Services, Centers for Disease Control and Prevention, National Immunization Program, promulgates that the risks from MMR vaccine can be permanent brain damage, [4] and influenza. (The US Institute of Medicine’s immunisation safety review committee has been investigating whether the influenza vaccine might carry a risk of the demyelinating disorder Guillain-Barré syndrome.) [5]

Coulter’s hypothesis presents molecular mechanisms that may account for the similarities in sequelae to various central nervous system infections and, in some children, to vaccinations. [6]

Based upon the facts, (i) that fever is a vaccination reaction experienced by many individuals [7], and

(ii) that fever and oedema are stimulated by similar cytokines [8,9,10]

A subset of vaccinated children— as a direct result of vaccination- induced cytokines release— may be likely to experience both encephalitis and subsequent encephalopathy. [11]

For instance, recent research findings are instructive regarding autistic children for whom— as neonates, infants or toddlers— medical records show a history of infections, antibiotic treatments, vaccinations, and temporally associated onset of autistic traits (e.g., Baker et al (idem), & Coulter (idem).

As suggested by Coulter (idem), a range of mild but significant post- vaccination neuropathies may occur.

i. Fever is strongly associated with interleukin-1, interleukin-6, and tumour necrosis factor alpha (IL-1, IL-2, TNF-alpha; (Luheshi et al, idem)). ii. Brain inflammation is strongly associated with those same cytokines,. [12,13] iii. IL-1 and IL-6 are among primary components in inflammatory expansions of B-cells and T-cells, which can migrate to tissues from which, for instance, the anti-neural epitopes are derived. Furthermore, because the very mechanism of vaccination-induced immunity derives from clonal expansions of B-cells [14], cytokines needed for B-cell clonal expansions are induced and present as a causally related response to vaccination.

If, prior to or immediately subsequent to vaccination, any neuronal damage, however slight, has occurred in response to the child's infections and/or antibiotic treatments, then the child probably has some activated microglia [15] and some anti-neuronal antibodies, as well as activated T- cells and B-cells whose epitopic focus is derived from neurons that were injured either,

(i) during the prior infections and treatment, or (ii) as a result of vaccination-induced oedema [16].

Not only do inflammatory cytokines modulate blood-brain barrier permeability [17], but perivascular microglial cells of the blood brain barrier can become antigen-presenting cells encoded with epitopes from the injured tissue within the brain, and these perivascular cells allow activated T-cells to pass from peripheral circulation, across the blood brain barrier, into cerebro spinal fluid wherein additional autoimmune- like damage can ensue. A similar crossing of the blood brain barrier occurs with activated B-cells.

If, from the child's prior infection(s) and/or from vaccination- induced oedema, activated T-cells and B-cells exist with neuronally derived epitopes, at least in some individuals during their response to vaccination, the following sequence may ensue:

(i) clonal expansions of existing T-cells and B-cells having neuronally derived epitopes, (ii) further activation of microglia in brain regions already damaged, (iii) increases in blood brain barrier permeability, thereby allowing activated T-cells, etc, to enter the brain. (iv) Furthermore, as the clonally expanding T-cells, etc, travel toward brain cells having sequences similar to the neuronally derived epitopes, encephalitis would be one result of these events and, more importantly, additional sequelae would include increased autoimmune-like damage to neurons that, prior to the vaccination, had been only mildly, perhaps even unnoticeably damaged by the prior infections.

In extreme cases of individuals having vaccination-induced clonal expansions of immunological cells with neuron-based epitopes, autism might be a result.

Nearly any vaccine may have the potential for inducing neuronal damage in persons with neuronally derived epitopes. In other words, any vaccination that induces strong antibody responses,

(i) would appear to be capable of inducing fever-generating cytokines and, therefore at least hypothetically, (ii) could simultaneously induce clonal expansions of pre-existing T- and B-cells encoded with neuronally derived epitopes, thereby leading to increased neuronal damage in varying degrees across individuals.

That vaccinations are helpful to society is without question; however, that some individuals suffer permanent and damaging sequelae to vaccinations is also well documented. The purpose of further research would be to understand better the mechanism by which vaccination-induced neuronal damage can occur in some individuals.

Three additional concepts are helpful for understanding inflammation- related pathologies of the central nervous system:

(i) molecular mimicry— whereby epitope sequences are virtually identical between an immunogenic pathogen and a naturally occurring molecular sequence [18], (ii) cross-reactivity— e.g., when a lipo-polysaccharide amidst a cellular bilipid layer induces a wider range of immunological responses involving self-membrane sequences [19], and (iii) epitope-spreading or "determinant spreading", i.e., a process that also describes spontaneously occurring widening ranges of immunogenicity.

Each of these three processes illustrates ways that autoimmune neuronal damage may be induced and the range of neuronal targets expanded in response to fever-related levels of cytokines release that occur in response to vaccinations. These processes would be more likely in some children if, due to infections and/or antibiotics, the child has T- and/or B-cell subsets encoded with neuronally derived epitopes.

In extreme cases, sufficient interleukin-2 levels in damaged areas of the central nervous system could mobilise lymphokine-activated killer cells (LAKs), which then might induce a more general damage, thereby yielding increasingly severe neurological deficits.

Additional factors may augment the mechanisms of neuronal damage outlined here in above:

i. Targeting the cerebellum and temporal lobe: Swartz [20] mentions that the temporal lobe and cerebellum are likely targets for oedema- induced neuronal damage. Furthermore, certain hippocampal regions as well as Purkinje cells of the cerebellum have a relative deficit of apoptosis- related protein Bcl-2, thereby inclining cells in those regions toward apoptosis [21] if and as oedema-induced injury occurs [22]. ii. Cerebellum: Discrete lesions of the cerebellum are associated with mania, depression, bipolar disorders, and OCD; and more than thirty bacterial, fungal, and viral infectious agents are known to be able to affect the cerebellum [23]. iii. Other inflammatories: In addition to IL-1, IL-6, and TNF-alpha, the following are additional factors influencing brain inflammation: Platelet- activating factor, prostaglandins E2 and I2, leukotriene B4, and polymorpho-nuclear neutophil leukocytes [24].

As stated in a recent guideline for physicians, vaccination-induced inflammation ought be treated aggressively (Fukuyama et al, idem), and better understanding of pathogenic processes, of risk factors, and of preventive or corrective measures are worthwhile goals.

From Hansard 11 Jan 1999 : Column 63

The information given to the public has always been that the MMR vaccine has been safely used in other countries, particularly the United States, and that it provides lifelong protection against all three infections with a single administration.

What the public are not told is that in a study that was completed before the launch of the 1994 MMR campaign, children given the injection were three times more likely to suffer convulsions than those who did not receive it, and that the vaccine caused five times more cases of the rare blood disorder thrombocytopenia purpura than expected. Besides sometimes causing dangerous mutations like atypical measles, the vaccine has been associated with numerous side effects, including deafness, encephalitis, febrile convulsions, Guillan-Barre Syndrome and sub acute sclerosing panencephalitis— a fatal wasting disease that is only very rarely associated with measles. The noble Lord, Lord Clement-Jones, mentioned the possible connection with autism.

For contraindications and side effects of live measles vaccination see;

http://www.rxlist.com/cgi/generic2/measlesvax_ad.htm

[1] KIMMAN TG, Risks connected with the use of conventional and genetically engineered vaccines, Veterinary Quarterly , Aug 1992, Vol 14(3), 110-118

[2] BROWN F, Review of accidents caused by incomplete inactivation of viruses, Dev Biol Stand, 1993, 81 (1), 103-7

[3] CASANOVA MF, BUXHOEVEDEN DP, SWITALA AE, ROY E. Minicolumnar pathology in autism. Neurology 2002 Feb 12; 58(3): 428-32.

[4] http://www.cdc.gov/nip/publications/VIS/vis-mmr.pdf

[5] BMJ 2003;326:620 ( 22 March 2003 )

[6] ALLEN, A.J., LEONARD, H.L., & SWEDO, S.E. (1995), Case study: a new infection-triggered, autoimmune subtype of pediatric OCD and Tourette's syndrome. Journal of the American Academy of Child and Adolescent Psychiatry, 34, 307-311.

[7] BELLANTI, J.A., FISHMAN, H.D., & WIENTZEN, R.L. (1987), Adverse reactions to vaccines. Immunology and Allergy Clinics of North America, 7, 3, 423-445.

[8] LUHESHI, G., & ROTHWELL, N. (1996), Cytokines and fever. International Archives of Allergy and Immunology, 109, 301-307 [listing IL -1, IL-6, and TNF-alpha as the primary cytokine pyrogens].

[9] QUAGLIARELLO, V.J., WISPELWEY, B., LONG, Jr., W.J., & SCHELD W.M. (1991), Recombinant human interleukin-1 induces meningitis and blood- brain barrier injury in the rat: characterization and comparison with tumor necrosis factor. Journal of Clinical Investigation, 87, 1360-1366.

[10] YAMASAKI, Y., MATSUURA, N., SHOZUHARA, H., ONODERA, H., ITOYAMA, Y., & KOGURE, K. (1995), Interleukin-1 as a pathogenetic mediator of ischemic brain damage in rats. Stroke, 26, 676-81.

[11] BAKER, S.M., & PANGBORN, J. (1996), Clinical assessment options for children with autism and related disorders: a concensus report of the Defeat Autism Now! (DAN!) conference, Dallas, Texas, January 1995. San Diego, Autism Research Institute.

[12] BANKS, W.A., KASTIN, A.J., & GUTIERREZ, E.G. (1993), Interleukin-1-alpha in blood has direct access to cortical brain cells. Neuroscience Letters, 163, 41-44.

[13] CERIANI, G., MACALUSO, A., CATANIA, A., & LIPTON, J.M. (1994), Central neurogenic antiinfammatory action of alpha-MSH: modulation of peripheral inflammation induced by cytokines and other mediators of inflammation. Neuroendocrinology, 59, 138-143.

[14] ADA, G.L. (1993), Vaccines. In: Fundamental Immunology, 3rd edition, Paul, E.P., editor, New York: Raven Press, Ltd.

[15] MICROGLIA are the smallest of the glial cells. Some act as phagocytes cleaning up CNS debris. Most serve as representatives of the immune system in the brain. Microglia protect the brain from invading micro-organisms and are thought to be similar in nature to microphages in the blood system.

[16] FUKUYAMA, Y., SEKI, T., OHTSUKA, C., MIURA, H., & HARA, M. (1996), Practical guidelines for physicians in the management of febrile seizures. Brain & Development, 18, 479-84.

[17] BANKS, W.A., & KASTIN, A,J. (1991), Blood to brain transport of interleukin links the immune and central nervous systems. Life Sciences, 48, PL117-PL121.

[18] BAUM H, DAVIES H, & PEAKMAN M. (1996), Molecular mimicry in the MHC: hidden clues to autoimmunity? Immunology Today, 17, 64-70.

[19] VAN ROOIJEN, N. (1989), Are bacterial endotoxins involved in autoimmunity by CD5+ (Ly-1+) B cells? Immunology Today, 10, 334-336.

[20] SWARTZ, M.N. (1984), Bacterial meningitis: more than just the meninges. New England Journal of Medicine, 311, 912-913.

[21] There are 3 different mechanisms by which a cell ‘commits suicide’ by apoptosis. (1) one generated by signals arising within the cell, (2) another triggered by death activators binding to receptors at the cell surface. [TNF-a; Lymphotoxin; and Fas ligand (FasL)]; (3) a third that may be triggered by dangerous reactive oxygen species.

[22] HARA, A., HIROSE, Y., WANG, A., YOSHIMI, N., TANAKA, T., & MORI, H. (1996), Localization of Bax and Bcl-2 proteins, regulators of programmed cell death, in the human central nervous system. Virchows Archives. 429, 249-53.

[23] COHEN, B.A., & LIPTON, H.L. (1990), The cerebellum and CNS infections. In: Infections of the central nervous system. D Schlossberg, editor; New York: Springer-Verlag.

[24] SAEZ-LLORENS, X., RAMILO, O., MUSTAFA, M.M., MERTSOLA, J., & Mccracken, G.H. (1990), Molecular pathophysiology of bacterial meningitis: Current concepts and therapeutic implications. The Journal of Pediatrics, 116, 671-684.

Competing interests: Father of a daughter who was brain damaged by the DPT vaccine and has autisic syndrome.

Re: For those who do not believe that there are serious side effects from live or attenuated vaccines 4 January 2004
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Ed Cooper,
Locum Cons. Community Pediatrician
Gt Ormond St, London WC1

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Re: Re: For those who do not believe that there are serious side effects from live or attenuated vaccines

Alan Challoner cites this website URL: http://www.rxlist.com/cgi/generic2/measlesvax_ad.htm

I have had a look at it and I am impressed.

I would recommend anyone following this debate looking for objectivity to have a look at it (all of it!). Thanks, Alan Challoner.

Competing interests: None declared

Re: For those who do not believe that there are serious side effects from live or attenuated vaccines 5 January 2004
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Peter J Flegg,
Consultant Physician
Blackpool, FY3 8NR

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Re: Re: For those who do not believe that there are serious side effects from live or attenuated vaccines

Allan Challoner espouses an hypothesis by which vaccination might cause autism. Essentially he proposes that fever is the culprit. I wonder if he could explain why this only applies to vaccine-induced febrile reactions, and not naturally acquired infections which are far more likely to be pyrogenic?

Also, he implies that SSPE is more likely to result following measles vaccination than natural measles infection. This is untrue. Over a 20 year period, Japanese epidemiologists found 184 cases of measles-related SSPE as opposed to 11 probable vaccine-related cases. They determined the incidence of SSPE as between 6.1 and 40.9 (mean 16.1) per million cases of measles and between 0 and 3.08 (mean 0.9) per million doses of vaccine following attenuated live vaccination(1).

In the UK, over a similar 20 year study period, rates of SSPE fell dramatically coincident with increasing vaccine coverage and reduction in the incidence of measles. Calculated rates os SSPE were 4.0/100,000 cases of measles compared with 0.14/100,000 doses of vaccine(2).

(1) Okuno Y, Nakao T, Ishida N, Konno T, Mizutani H, Fukuyama Y, Sato T, Isomura S, Ueda S, Kitamura I, et al. Incidence of subacute sclerosing panencephalitis following measles and measles vaccination in Japan. Int J Epidemiol. 1989; 18: p684-9.

(2) Miller C Farrington C P, Herbert K. The epidemiology of subacute sclerosing panencephalitis in England and Wales, 1970 to 1989. Int J Epidemiol. 1992; 21: p998-1006.

.

Competing interests: None declared

Re: Re: For those who do not believe... A response to Dr Flegg 6 January 2004
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Alan Challoner,
Retired
LL18 5UR

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Re: Re: Re: For those who do not believe... A response to Dr Flegg

In answer to Dr Flegg, I would first like to say that in my response I was putting forward research that was connected to serious side effects from live or attenuated vaccines. None of the research was mine.

He asks about whether I can explain why vaccine damage following febrile convulsions only applies to vaccine-induced febrile reactions, and not naturally acquired infections, which are far more likely to be pyrogenic. [I do not necessarily subscribe to his thesis here.] There are (at least) two things going on with vaccine-induced febrile reactions, firstly the reaction which allows for the blood/brain barrier to be breached and secondly the passage of toxins into the brain. Each case will be different for obvious reasons. Where the result is autism, it will be because the areas of the brain damaged include (some of) those that are normally found to be faulty in classical autism. The case I make here is that classical autism and autistic syndrome from brain damage are two different aetiological circumstances.

At high enough concentrations, glutamate is toxic to neurones. There is evidence that prolonged seizures in convulsive status epilepticus may lead to damage of nerve cells. Blood pressure drops during a seizure. If the seizure is prolonged and blood pressure remains low for longer, insufficient blood will reach the brain. Blood transports oxygen and also glucose, which is the food for cells. If seizures are prolonged, the brain will eventually be deprived of oxygen and the nerve cells start dying. In addition, a convulsion uses up glucose, therefore if insufficient blood reaches the brain to provide enough glucose; this too can cause damage to nerve cells.

There is a third issue, and that is the age at which the vaccine- induced febrile reactions occur. The fever-induced convulsions that some young children suffer, appear to have no long-term impact on their brain functioning. However, there is a risk of developmental problems when infants suffer the seizures. Recent research shows that children with a history of fever-induced seizures actually outperformed others in tests of memory and learning capacity. The exception was for children who suffered febrile convulsions before the age of 1 year. These children were at increased risk for deficits in mental abilities. However, it also reinforces the concern that during infancy, these seizures may injure certain brain cells and lead to more profound dysfunction. [1, 2]

Serious reactions that might imply the existence of brain damage from vaccines were tabulated by Greco et al and quantified as indirect evidence that pertussis vaccines may result in a post-vaccine encephalopathy. [3]

Another patient study indicates that seizure activity originating in a specific location of the brain (hippocampus) causes the region to become irreversibly damaged. [4]

Earlier reports had presupposed that infantile convulsions following DPT vaccinations were only triggered and not caused by the vaccine. This was one of the pillars of the Loveday v Renton case. Cherry et al, have refuted this.

“Pertussis immunisation is a precipitating factor of the first febrile convulsion in children prone to have febrile convulsions...” [People should not generalise by concluding that only children who are 'genetically predisposed' have vaccination-induced febrile seizures (FS).]

In a similar study, with more focused data, only 6 of 60 and 15 of 60 children with severe DPT reactions had personal or familial history of prior seizures, indicating that the majority of children with severe reactions had no prior personal or familial FS as indicators of 'genetic predisposition'. [5]

Dr Flegg reports that, Japanese epidemiologists found 184 cases of measles-related SSPE as opposed to 11 probable vaccine-related cases. That is 6%, a figure I suspect that is rather more than the percentage of children who are harmed by vaccination over those who are not. That other researchers have confounded that outcome with different percentages only proves that vaccine damage is not something that can be looked at adequately by using epidemiology. Each case is unusual and different from all others in the characteristics of the damage and of the outcome. There have, I believe, been almost 900 awards to subjects under the Vaccine Damage Payments Act. I challenge Dr Flegg to find any two that are alike.

[1] BARAM, Tallie Z. and SHINNAR, Shlomo. Do febrile seizures improve memory? Neurology 2001 57: 7-8

[2] CHANG, Y. C.; GUO, N. W.;. WANG, S. T; HUANG, C.C.; and TSAI J.J. Working memory of school-aged children with a history of febrile convulsions: A population study. Neurology 2001 57: 37-42.

[3] GRECO D, SALMASO S, MASTRANTONIO P, et al. A controlled trial of two acellular vaccines and one whole-cell vaccine against pertussis. N Engl J Med. 1996;334:341-348.

[4] THEODORE, W. H.; BHATIA, S.; HATTA, J.; FAZILAT, S.; Decarli, C.; BOOKHEIMER, S. Y. and GAILLARD, W. D. Hippocampal atrophy, epilepsy duration, and febrile seizures in patients with partial seizures. Neurology 1999 52: 132

[5] CHERRY JD, HOLTZMAN AE, SHIELDS WD, et al. Pertussis immunization and characteristics related to first seizures in infants and children. Journal of Pediatrics 1993;122:900-903.

Competing interests: Father of a daughter who was brain damaged by the DPT vaccine and has autisic syndrome.

Epidemiology - Relevance and Usefullness 6 January 2004
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David R Sherman,
-
CV5 7FB

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Re: Epidemiology - Relevance and Usefullness

As a parent of an 8 month old son I have watched the Five program and studio discussion with interest.

The fundamental questions the program seemed to pose to me were:

(assuming the portrayal was reasonably accurate in the areas of parent / doctor interaction) why is the medical profession so fragmented?;

why has the original position (of raising the question as to whether there is or could be a link) been so mis-represented and the vitriol based on the position that a link was asserted?;

why were the pro-question "experts" polite, willing to brook unending interruptions and, by and large, reasoned whilst the anti-question group were the complete opposite (and, apparently, not the "experts" in the field)?;

One point that both sides seemed to agree on is that the current decision is based on Epidemiological Studies and that Epidemiological Studies are of no use nor comfort to any particular Patient or Parent.

We were given statistics regarding the rates of infection and deaths both pre and post the introduction of the MMR jab - although one (curiously) quoted figures from post 1992 even though the jab was introduced prior to that. If you are going to use figures then you have to be honest and accurate as any inconsistency merely allows for error / oversight to blossom into conspiracy.

What I did and (and believe could not) derive from this glut of information was the ability to determine the risks associated with A) having the MMR jab, B) having single jabs or C) having no jabs for my son.

Is it not possible for anyone of these (no doubt esteemed and richly rewarded) Epidemiologists to simply say "Probability of serious consequences through Measles and / or Mumps and / or Rubella without MMR is X whilst probability of Autism following MMR is Y?". This can be done even if one does not accept a causal link between the MMR jab and Autism.

Again, in the absence of the information (which one has to assume is or could be easily available), it is very easy to conclude that the reason the figures have not been or cannot be produced is that the prevalence of Autism is far higher than that already in the Public Domain and the sacred Herd immunisation may be further harmed were the "true" figure to become known.

I as a parent have (selfishly) only the best interests of my child at heart. If it is the case that the risks to my child of experiencing Measles and / or Mumps and / or Rubella are increased by not having MMR but the consequences of doing so are less than having MMR then frankly I don't give a damm about the herd! I suspect this is a commonly held position and that is what is worrying the DOH / CMO etc etc.

If anyone can provide me with the figures (or a source where they can be found) then I would be most grateful.

Competing interests: None declared

Re: Epidemiology - Relevance and Usefullness 7 January 2004
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Adam Jacobs,
Director
Dianthus Medical Limited, London SW19 3TZ

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Re: Re: Epidemiology - Relevance and Usefullness

David Sherman asks whether someone can supply figures for "Probability of serious consequences through Measles and / or Mumps and / or Rubella without MMR is X whilst probability of Autism following MMR is Y".

This is a reasonable question, but the figures are actually pretty useless by themselves. To make an informed decision about whether to opt for MMR, one would also need to know the probability of serious consequences through measles, mumps, or rubella following MMR and the probability of autism without MMR.

Competing interests: None declared

Re: Epidemiology - Relevance and Usefullness 7 January 2004
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sharon m latta,
director
po16

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Re: Re: Epidemiology - Relevance and Usefullness

The simple fact is that there is no known cause for autisum and till that time then parents will have questions as to it's safety and rightly so. It is true that at this time it is not known as to if a link exists between MMR and Autisum, or should i say no link that would be good enough for the medical community.

The observations of the parents should be taken into account when they say that the change in their child followed the MMR. They are after all the people who would know their child best. Observation is key to finding the cause of Autisum, if the views of the parents are not taken into account then how can full research ever be carried out in an open minded factual way.

As with all medical treatment adverse reactions can and do occur. Why is it that when the question of vaccine reaction is raised that the medical world seem to have a brick wall up?

I believe fully that vaccination was at the very minimum the catalyst in my daughters death 'What one see's one knows'. However i am not of the mind that children should not be vaccinated as i feel that for the vast majority the health benifits out weigh the risks. It would be nice to think that in years to come more funding would be put to finding and accepting that in a small number of children reactions do occur, maybe then it would be possible to indentify these children prior to them being subjected to possible risk ill health.

With such a grey area it is no wonder that parents feel that they can not make an informed choice for what is best for thier child.

Competing interests: None declared

SSPE and measles vaccine 8 January 2004
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Peter J Flegg,
Consultant Physician
Blackpool Victoria Hospital, UK FY3 8NR

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Re: SSPE and measles vaccine

Alan Challoner fails to recognise the basis behind my earlier correspondence (5th Jan), so I shall try to be more clear.

He supports a theory that might explain neuronal damage occuring after febrile reactions, but I still fail to see why this non-specific effect should be confined purely to vaccination reactions (and he provides no evidence concerning this). His earlier correspondence has implicated these febrile reactions in the aetiology of vaccine side effects causing neuronal damage such as SSPE, presumably to give credence to them as a cause for other disorders such as autism.

However he wrongly implied SSPE is commoner with measles vaccination than it is with acquired measles. Both studies I have cited concur on the risk being 20 to 40 times more likely with acquired measles(1,2), despite his attempts to gloss over this fact by saying one cannot assess vaccine damage epidemiologically.

If SSPE was more frequent following measles vaccination than natural infection, there might be grounds for exploring this association and its relevance to autism in greater depth. However, it is not, therefore there are not.

(1) Okuno Y, Nakao T, Ishida N, Konno T, Mizutani H, Fukuyama Y, Sato T, Isomura S, Ueda S, Kitamura I, et al. Incidence of subacute sclerosing panencephalitis following measles and measles vaccination in Japan. Int J Epidemiol. 1989; 18: p684-9.

(2) Miller C Farrington C P, Herbert K. The epidemiology of subacute sclerosing panencephalitis in England and Wales, 1970 to 1989. Int J Epidemiol. 1992; 21: p998-1006.

Competing interests: None declared

Hear the Protocol 10 January 2004
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MC Feliciello,
n/a
Leeds

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Re: Hear the Protocol

It may be of some interest to both Medical Practioners and Parents that the Autism Research Unit of Sunderland University will be holding a one day conference on March 27th in Newcastle on Tyne entitled;

Biomedical factors in Autism: a logical sequence of interventions for Autistic Spectrum Disorders.

Details of the speakers plus booking form may be found at this address:

http://osiris.sunderland.ac.uk/autism/autplan.html

I can highly recommend both the event and the pricing structure as I had the pleasure of attending the Day Conference in 2003, though you might want to bring a packed lunch (1)

So much to discuss, so little time.

MCF

(1) BMJ 2003;326:1155-1156 (31 May), doi:10.1136/bmj.326.7400.1155

Abbasi K, Smith R Editorial "No More Free Lunches"

Competing interests: Parent of Autistic Child

Re: Re: Epidemiology - Relevance and Usefullness 11 January 2004
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David R Sherman,
Parent
CV5 7FB

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Re: Re: Re: Epidemiology - Relevance and Usefullness

Adam Jacobs responds with "To make an informed decision about whether to opt for MMR, one would also need to know the probabil

Adam Jacobs responds with "To make an informed decision about whether to opt for MMR, one would also need to know the probability of serious consequences through measles, mumps, or rubella following MMR and the probability of autism without MMR."

 

Whilst I appreciate the response and, in general, would agree with the additional factors that would need to be taken into account I believe, in this instance, they are erroneous.

 

  • Firstly, in respect of the statement "one would also need to know the probability of serious consequences through measles, mumps, or rubella following MMR" - is it not the case that the consequences following any of the infections is the same and it is simply the likelihood of such infection that would be the variable? If this is the case then the program (nearly) provided the answer in the figures they provided in the slides showing the rates of incidence of the 3 diseases pre and post MMR. So that information was provided?

 

  • Secondly, in respect of the statement "the probability of autism without MMR." - surely, as there has been no causal link accepted by the medical profession, then the probability of autism without MMR remains unaffected. The only alternative I can otherwise see is that the withholding of MMR causes more autism (which without any cause / effect would be amazing) or less autism (which is surely the point of the debate). Unless one accepts that MMR PREVENTS autism - has anyone authoritively suggested that so far? - I have not heard of any such assertion.

 

Just to give an idea of how obscure / difficult the information seems to be: I have extracted from the Green Book [1] and figures from 3 pages at "MMR The Facts" [2]:

Statistics on countries using MMR [3],

Statistics on countries not using MMR [4],

The MMR world map [5]

 

From these figures it is possible to combine the information relating to Births and Reported cases of Measles for the countries specified (except where the information is not available) and convert these to percentages. Yet this is not given on the DOH's pages - again one is forced to ask "why not?" as surely one of the factors most significant is the rate of measles in those countries using MMR and the rate in those not using it.

 

(for example:

The Netherlands rate of Measles (using MMR) is 1,109 out of 179,000 births (or 0.57%) whilst the rate for Ethiopia (not using MMR) is 1,660 out of 2,788,000 (or 0.06%) (DOH figures) and I don’t believe that Ethiopia's healthcare system is better than the Dutch!

 

I would like to emphasise a point I made previously - it you're going to supply figures then make sure they are correct, accurate and consistent - otherwise people will tend to be suspicious of every piece of information from that source. The DOH website states that the number of reported cases of Measles (presumed to be 2000) for some countries is:

 

Table 1

Country

Reported Cases of Measles

Germany

N/A

Italy

N/A

Denmark

14

Ireland

N/A

United Kingdom

104

Netherlands

1019

(Source: http://www.mmrthefacts.nhs.uk/worldmap/mmr.php)

 

Yet then proceeds to detail "Recent Outbreaks" (Table 2):

Ref:

Country

Region

Cases

Dates

Notes

1

Germany

Bavaria

910

Nov 2001 to mid-March 2002

Most cases occurring in the age band with the highest vaccination rate

2

Leer, Northwest Lower Saxony

37

Nov 2001 to March 2002

 

3

Aachen, Northrhine-Westphalia

359

First three months of 2002

 

4

Italy

 

981

January to May 2002

 

5

Denmark

 

19

End 2001 to 5 Feb 2002

 

6

Ireland

 

844

1 January to 28 May 2000

So far, 101 children/patients have been admitted to hospital, six to intensive are units, and two have died.

7

UK

 

90

Late December 2001 to 28th March 2002

 

8

Netherlands

 

300 total

Sept 1999

Therefore Sept 1999 to current figure is 2,000

 

2,300 total

Currently

(Sources: [all at www.MMRTheFacts.NHS.UK/Library]: /germany.php, /italy.php, /denmark.php, /ireland.php, /uk.php, /netherlands.php)

 

As can be plainly seen the figures given in Table 1 figures detailed as N/A are far from Not available or Not applicable as they are both available and applicable.

 

All of the above countries are described by the DOH as “using MMR”. It is therefore interesting to note that in the pages detailing “Recent Outbrakes” information is sometimes included as to the level of immunisation that existed at the time of the outbrakes:

 

Table 3 Immunisation Rates:

Ref:

Country

Region

Vaccination Rate

Notes

1

Germany

Bavaria

4%

Actually detailed as 96% unvaccinated

2

Leer, Northwest Lower Saxony

 

 

3

Aachen, Northrhine-Westphalia

359

 

4

Italy

 

60% to 80%

 

5

Denmark

 

99% for dose 1,

92% for dose 2

Dramatically lower in previous years, at 84%.

6

Ireland

 

 

 

7

UK

 

90

 

8

Netherlands

 

 

Cases have occurred throughout the Netherlands but have been concentrated in the so-called Bible belt, where people chose not to have their children vaccinated for religious reasons.

(Sources: [all at www.MMRTheFacts.NHS.UK/Library]: /germany.php, /italy.php, /denmark.php, /ireland.php, /uk.php, /netherlands.php)

 

So I am now in the position where the DOH information is:

 

  • Self-contradictory (Ireland has 844 cases (Table 2) but the figures are N/A (Table 1)
  • Out-of-date (All of Table 1 is dated 2000 – yet later figures are available)
  • Misleading (All of these countries are listed as using MMR even though the relevant German figure was 4% and the Dutch figure was (presumable) 0%)

 

So in summary, whilst I appreciate there may well be more information that I might find useful, I am having trouble understanding and validating the information I am being given by the DOH (should that read Dept of Haziness? [sorry – only ‘H’ I can think of and ‘perplexing’ and ‘unfathomable’ didn’t fit!]) about MMR (More Medical Runaround?)

 

 

[1] DOH Immunisation Against Infectious Disease 1996 "The Green Book" (http://www.doh.gov.uk/greenbook/)

 

[2] http://www.mmrthefacts.nhs.uk/

 

[3] http://www.mmrthefacts.nhs.uk/worldmap/mmr.php

 

[4] http://www.mmrthefacts.nhs.uk/worldmap/nommr.php

 

[5] http://www.mmrthefacts.nhs.uk/worldmap/#

Competing interests: None declared

Re: Re: Epidemiology - Relevance and Usefullness [Correction] 12 January 2004
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David R Sherman,
Parent
CV5 7FB

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Re: Re: Re: Epidemiology - Relevance and Usefullness [Correction]

Due to carleless cutting & pasting on my part my previous article "Re: Re: Epidemiology - Relevance and Usefullness" included 2 erroneous figures in table 3. The figures 359 and 90 should be deleted.

I apologise for this error.

Competing interests: None declared

Re: Hear the Silence Reviews And the Danish Study 15 January 2004
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David R Sherman,
Parent
CV5 7FB

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Re: Re: Hear the Silence Reviews And the Danish Study

The Danish Study

Subsequent to my posting entitled “Epidemiology - Relevance and Usefullness”, I received in the post today an anonymous A4 envelope whose addressee was “David R Sherman, CV5 7FB” containing a copy of the “Denmark” report from the New England Journal of Medicine[1].

 

The address leads me to (strongly) suspect that it has been sent by someone who has read my posting(s). Unfortunately, as the sender included no other details I not only have no idea who they are but also have no idea whether this was intended to support the MMR jab or provide indications as to any dangers.

 

It was nonetheless interesting reading – once I had got over the disappointment that anyone could think, having read my posts, that I needed more obscure numbers to digest!.

 

As I have made plain previously, my interest is that of a parent – not as a member of the medical profession. I have not previously indicated my expertise (or otherwise) in respect to statistical analysis – a situation I will happily correct: I am numerate and, after 25 years working with computers, logical but not statistically experienced (at least with respect to Epidemiology). In this light I read, and tried to understand, the Danish Study.

 

I have read Gary S. Goldman’s posting[2] in which he seems to question the validity of the conclusion drawn in the Danish report because of erroneous statistical techniques. His criticisms may or may not be valid. However, from what I have read, the Danish study is oft quoted as one of the most authoritative studies on the subject and therefore has to taken seriously if it is correct.

 

I have 4 questions that bear on the reliability of the study.

 

1    In the Discussion Section the following statement is made:

 

“This study provides three strong arguments against a causal relation between MMR vaccination and autism.

·         First, the risk of autism was similar in vaccinated and unvaccinated children, in both age-adjusted and fully adjusted analyses.

·         Second, there was no temporal clustering of cases of autism at any time after immunization.

·         Third, neither autistic disorder nor other autistic-spectrum disorders were associated with MMR vaccination.

Furthermore, the results were derived from a nationwide cohort study with nearly complete follow-up data.”

 

Or to put it another way: no causal relation exists because no disorders were associated. Is that an acceptable logical conclusion in Medicine? It certainly would not be acceptable logic in the I.T. field and, given the existence of the term “circular logic”, generally I suspect.

 

2.   The conclusion drawn in the study (Conclusions section) states:

 

This study provides strong evidence against the hypothesis that MMR vaccination causes autism.

 

However my attention was drawn to some of the figures included in the tables (1 and 2). I reproduce sections of the tables here for reference purposes:

 

Table 1. Characteristics of the 537,303 children in the Danish cohort.

 

Characteristic

 

Vaccinated children (N=440,66)

 

 

unvaccinated children (N=96,648)

 

P Value

Number (percent)

Age at diagnosis of autistic disorder

0.87

  <= 2 yr

48

(0.01)

9

(0.01)

 

  3 – 5 yr

187

(0.04)

31

(0.03)

 

  >= 6 yr

34

(0.01)

7

(0.01)

 

 

 

 

 

 

I have no idea what the P Value signifies nor how to interpret it but am I correct in reading

 

Vaccinated

Unvaccinated

<= 2 yr

0.01

0.01

3 – 5 yr

0.04

0.03

>= 6 yr

0.01

0.01

Totals

0.06

0.05

as showing a higher risk of autistic disorder?

 

Perhaps more sinisterly, if the figures are calculated / shown with more accuracy then the following emerges:

 

Vaccinated

Unvaccinated

Comments

<= 2 yr

0.01089

0.00931

Vaccinated higher than published, unvaccinated lower than published

3 – 5 yr

0.04244

0.03208

Vaccinated higher than published, unvaccinated higher than published

>= 6 yr

0.00772

0.00724

Vaccinated lower than published, unvaccinated lower than published

Totals

0.06105

0.04863

Actually 0.06105 vs 0.04863 can be represented as a 25+% increase!

(all rounded to 5 d.p.)

 

Does this mean that this authoritative study is stating that a child is more likely (0.06%) to develop an Autistic Disorder if vaccinated than if not (0.05%)? Is this consistent with the conclusion stated?

 

[The figures for “another autistic-spectrum disorder” are inaccurate:

 

 

Vaccinated

Unvaccinated

<= 2 yr

0.01

0.003

3 – 5 yr

0.05

0.04

>= 6 yr

0.03

0.03

Totals

0.09

0.083

More accurately:

 

Vaccinated

Unvaccinated

Comments

<= 2 yr

0.00726

0.00310

 

3 – 5 yr

0.04584

0.03828

 

>= 6 yr

0.02678

0.03104

 

Totals

0.08988

0.07242

Again over 24% higher if vaccinated

(all rounded to 5 d.p.)

 

Table 2. Adjusted relative risk of autistic disorder and if other autistic spectrum

disorders in vaccinated and unvaccinated children.

 

Vaccination

 

 

Person-Years

 

Autistic Disorder

 

Other autistic-spectrum disorders

 

 

 

 

No of cases

Adjusted relative risk (95% CI)

 

 

No of cases

Adjusted relative risk (95% CI)

Total

2,129,864

316

 

422

 

Vaccination

 

 

 

 

 

  No

482,360

53

1.00

77

1.00

  Yes

1,747,504

263

0.92 (0.68 – 1.24)

345

0.83 (0.65 – 1.07)

Age at vaccination

 

 

 

 

  Not vaccinated

482,360

53

1.00

77

1.00

  <= 14 mo

200,003

38

1.18 (0.78 – 1.80)

43

0.88 (0.60 – 1.28)

 

 

Given the stated time for MMR is “around 13 months”  [http://www.mmrthefacts.nhs.uk/basics/schedule.php] does this not mean that this is more likely to be followed by an autistic disorder (1.18) than if MMR is not given (1.00)? Should we not be waiting until the 15 – 19 month period where the comparable figure was 0.86?

 

3.   How can a study so replete with figures which are then used to justify a conclusion include so many reference to likelihood without quantifying the figures? Is a likely event merely one where the probability is over 50% (i.e. somewhere between 50.000001% and 100%) – hardly precise!

 

·         all severe cases of autism are likely to be diagnosed and reported

·         However, it is unlikely that this misclassification would be associated with vaccination status

·         Again, it is highly unlikely that a delayed diagnosis was associated with MMR vaccination

 

4.   With apologies to those of you who are not UK residents, the DOH Green Book[3] states “One vaccine is currently available: MMR II (Merck); Enders’ Edmonston strain measles, RA 27/3 rubella, Jeryl Lynn mumps.”

 

What relevance, if any, does the Danish Study have within the U.K. given that the Danish Study states:

The MMR vaccine used in Denmark during the study period was identical to that used in the United States and contained the following vaccine strains: Moraten (measles), Jeryl Lynn (mumps), and Wistar RA 27/3 (rubella).”?

 

Is “Enders’ Edmonston” the same asMoraten”? IsRA 27/3” the same asWistar RA 27/3”?

 

[1]      http://content.nejm.org/cgi/content/full/347/19/1477

[2]      http://bmj.bmjjournals.com/cgi/eletters/327/7428/1411-a#43391

[3]      http://www.doh.gov.uk/greenbook/greenbookpdf/chapter-22-layout.pdf

 

Competing interests: None declared

Unequal standards 18 January 2004
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John Daniel Stone,
none
34 Outram Road, London N22 7AF

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Re: Unequal standards

My attention has been drawn to this very interesting and continuing correspondence. I have several points to make but the single over-riding point is the different standards of proof and safety which apply on the one hand in support of the current official position and on the other to those who offer any criticism of it.

For instance, in an interview for 'Epolitix' the on-line journal Dr Stephen Ladyman, UK Minister for Health and Social Care (1), makes the following criticism of Andrew Wakefield:

"All he's done is identified portions of measles virus in gut tissue of people with autism...Well, he doesn't have any reason to believe that that antigen came from MMR, it could just as easily got there from single vaccinations, from native, from wild measles, and if it did come from a vaccination programme, he's got no reason to link it to the autism itself, he simply makes an intuitive leap without evidence as part of his process of hypothesising."

It is interesting that the Minister actually concedes the presence of the virus. But if there is no record of the patient having a single jab (although this might have happened in early cases) and no patient history of wild measles (as is unlikely) then MMR remains the most obvious and likely source. A third possibility is that everyone has measles antigen in their gut, but it would be possible to check this hypothesis by having a control group, and the Department of Health (DOH)perhaps does not want to go that far into the matter. Nor is it the case that Dr Wakefield has made a wild, intuitive leap, he has simply followed normal clinical practice in discussing the onset of symptoms with the patients or their representatives. This may not be conclusive proof of vaccine damage, but acting with proper caution it is the basis for urgent further research rather than for burying the issue. Contrary to the official DOH line it is entirely "credible", just not complete.

This is an example of the DOH failing to act with due care while demanding extraordinary standards of proof. I have by contrast yet to receive any response to my published criticisms of a recent DOH sonsored paper 'Prevalence of autism and parentally reported triggers in a north east London population'(2). The paper documents the exponential rise in autism incidence from the birth cohort of 1979 to the birth cohort of 1992, but then offers the remarkable and unsupported conclusion that the rise was not real but due to institutional changes and better diagnosis. It is hard to understand how this leap survived peer review. They also failed to respond to my criticism that the data would be flawed by non- reporting of local reactions to vaccination and stereo-typical diagnoses of autism being handed out (in fact both happened in the case of our son though the reaction was to DPT and not MMR). Finally, if the authors were uncertain whether autism was rising exponentially (as they documented) or incidence was static (as they for no particular reason believe) it is difficult to see within such a wide margin of error how they could be sure the trend was not influenced by the introduction of MMR. The paper was exceptionally weak and should probably never have been published: instead it was second item on the BBC news on the morning of 22 July.

Typical too is the hard-nosed and incautious approach by the DOH to the unnecessary use in the DPT and other vaccines of the mercury based preservative Thiomersal/Thimerosal, now banned in the US. They can cite no trials to support its safety, no DOH statement refers to the US ban, nor do they ever try to replicate any of the research that has led to concern. They simply blank out all representations. So a two month-old infant receives a dose of mercury 43 times greater than the amount considered safe by the Food Standards Agency for the consumption of fish (albeit in a different form)(3).

My own conclusion is that there is a terrible institutional warp to what is considered to be "good science".

(1) Epolitix, 14 October 2003. (2) Lingam R, Simmons A, Andrews N, Miller E, Stowe J, Taylor B. Arch.Dis.Child. 2003. Aug 88 (8): 666-70. (3) BBC, File on Four, 24 June 2003.

Competing interests: Parent of an autistic child

Re: Unequal standards 18 January 2004
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David R Sherman,
Parent
CV5 7FB

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Re: Re: Unequal standards

I found the article by John Daniel Stone so familiar

I found the article by John Daniel Stone so familiar. I have (as a lay person) been trying to reconcile the two camps of opposing evidence. In doing this I have checked some of the "official" web-site addressing the subject and two in particular are interesting.

 

1.      MMR The Facts (http://www.mmrthefacts.nhs.uk) has a "News" section in which it publicises "evidence" - allegedly from a neutral position - which supports the use of MMR.

 

2.      Medicines and Healthcare products Regulatory Agency (http://www.mhra.gov.uk/) who's mission statement is:

 

"The Executive Agency of the Department of Health protecting and promoting public health and patient safety by ensuring that medicines, healthcare products and medical equipment meet appropriate standards of safety, quality, performance and effectiveness, and are used safely."

 

On the one hand we have the MHRA trashing a paper by Dr Andrew Wakefield and Dr Peter Fletcher because:

a)                  The paper by Dr Wakefield does not present any new data - it merely reviews a number of published articles.

b)                  It is highly selective as opposed to the scientific standard of being systematic, and studies that do not support the author’s views are not mentioned.

c)                  No search for all relevant publications has been done.

d)                  It is easy for scaremongering to sap public confidence by biased presentations …

 

Then, on the MMT The Facts site we have numerous documents that are a “review of published papers” – how can a review present and new data? It may draw different conclusions but is this data?

 

As for b, c and d: the MHRA statements apply equally to the NHS site.

 

As for rigourness of papers, I am currently awaiting a response from the NHS Site as to why they quote the Danish Study as substantiating the case for MMR when different strains are used compared to those used in this country. Were anybody who opposes MMR to attempt the same trick I am quite sure that the DOH / NHS would castigate them for doing so ….

 

Competing interests: None declared

Unequal standards 19 January 2004
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John Daniel Stone,
none
34 Outram Road, London N22 7AF

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Re: Unequal standards

It is worth returning to the claim that the rise is due to greater awareness, better diagnosis and changes in organisation. None of these claims seem to be supported by any documentation of substantive changes in diagnostic criteria, or procedure. An exponential rise from the birth cohorts of 1979-1992 suggests some continuous process, and it is not really clear what continuous institutional process was afoot in paediatrics in the years 1981-96 to produce this peculiar result. This is a hypothesis without documentation and it ought not to be good enough to dispel concern.

I note along the same lines is a report in yesterday's Sunday Times (Jonathon Carr-Brown, Janury 18), "Autism rise may be a myth":

"Two American academics say they have proved that the rise over the past decade is explained by the way doctors diagnose behavioural disorders. Their research flies in the face of the belief - by a small number of scientists - that the new cases are linked to the single MMR jab, introduced in 1988.

"It is the first study to provide a valid alternative explanation for the rise in utism and provides the government with concrete evidence that the MMR is safe.

"Epidemiologist Hershel Jick and James Kaye, of the Boston University school of medecine based their research on 280 GP surgeries with 3m patients.

"They say the data show that the rise in autism cases corresponds with a decline in the diagnoses of other development disorders. They do not rule out the possibility that MMR or another drug might trigger autism in an individual child, but they say it cannot be responsible for the large rise.

""This represents compelling evidence that the children haven't changed but the diagnosis has," said Jick.

"From 1993 to 2000 the number of children diagnosed with autism rose 25% a year while the number diagnosed with behavioural disorders fell by 25% a year".

It is evident that this report has a certain propaganda edge, first of all linking spuriously the issue of the general rise in autism uniquely to the introduction of the MMR in order to be able to knock it down (and pointing the finger at unnamed scientists). Secondly, it is not clear how the 25% annual rise of one figure over 8 years, and a 25% annual decline of the other figure over the same period could be numerically equivalent (although it sounds good in newspaper report). Thirdly, and most disturbingly, this is armchair science and not based on familiarity with the situation on the ground, where a generation of children with hugely intractable problems seemed to emerge from nowhere. We have to ask, reasonably, how the system could have lost so many desperately compromised people and why even in late adolescence and adulthood it is failing to diagnose them in balancing numbers - although, no doubt, tragic cases come to light.

My own feeling is that this is rather a flippant way of dealing with such a serious matter. We need extensive, properly funded, and independent research on the ground to resolve these matters, and we need unfettered clinical investigation of the disorder. To waive people's concerns aside in such an unaccountable manner is irresponsible and insulting.

Competing interests: Parent of an autistic child

Unequal standards: a challenge to David Elliman, Helen Bedford and Mike Fitzpatrick 23 January 2004
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John Daniel Stone,
none
34 Outram Road, London N22 7AF

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Re: Unequal standards: a challenge to David Elliman, Helen Bedford and Mike Fitzpatrick

Regarding the Sunday Times story I note further how confused is the data that Jonathon Carr-Brown presents. He writes that "a leading medical team has solved the mystery of Britain's four-fold rise in cases of childhood autism", but on the trends quoted incidence of autism increased on a numerically accelerating basis by nearly six times over only eight years while "behavioural disorders" declined eleven-fold on a numerically decelerating basis, so none of the figures match up. It is unfortunate to say the least that British readers are subject to a garbled version of an apparently unpublished piece of research for avowedly polemical ends. Nor is it right that anyone has made the claim that all of Britain's rise in autism is due to MMR - I do not believe that this has ever been said. So I ask David Elliman, Helen Bedford and Mike Fitzpatrick whether they think this is helpful?

I also ask them whether they accept with the Minister for Health and Social Care that Dr Wakefield's patients have measles antigen in their gut? And do they agree with me that it is important, if this is the case, to find out how it got there?

Competing interests: Parent of an autistic child

The basic question 24 January 2004
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David R Sherman,
Parent
CV5 7FB

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Re: The basic question

Having read John Daniel Stone's posts and the threads in totality, as well as other items on the web, I believe it all comes down to one question:

Having denigrated the methods, statements, evidence, intentions and character of Wakefield and having stated that the research does not support the hypothesis and the evidence is incomplete:

Why not redo the current research (with Wakefield) and any further research that it suggests or is required?

Competing interests: None declared

The silence continues 25 January 2004
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John Daniel Stone,
none
34 Outram Road, London N22 7AF

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Re: The silence continues

I was going to leave this matter with my last contribution but I fear we must draw wider conclusions than David R Sherman suggests. Perhaps he is, understandably, most focussed on the immediate practical issue of whether he can risk exposing his child to MMR vaccine.

At the time 'Hear the silence' was screened I was opposed in principle to these important moral and scientific issues being aired in a controversial fictionalised format and believed it would only succeed in muddying the waters. But in the past week I have felt more and more like the Juliet Stevenson character who simply cannot get the answers to honest and proper questions. It has - despite a certain inevitable kitschyness - come to represent a truth.

So, now, on the one hand no one can apparently deny that Dr Wakefield has a group of patients with measles antigen in their gut, and a UK health minister has conceded this, and on the other it is very hard to see the relevance of the epidemiological data which has been produced to support the case for safety. At the same time the epidemiological data has been shown to be flawed and everyone is silent on that too. No one will come out and defend it. We know that Prof. Brent Taylor felt personally injured by the drama(1), which is human and understandable, but he has not answered serious criticisms I have made of his research. No one has defended the serious criticism David R Sherman has made of the much quoted Danish survey. I wondered whether Hershel Jick and James Kaye would protest this weekend about the use made last week in the Sunday Times of their research, but again they are silent.

So, apparently no one thinks there is any need to explain themselves. But this is a bad weekend for the reputation of Government Science: a weekend in which a theory which was supposed to be scientific turned out to be pure whimsy, with the result that thousands of families worldwide were for two and half decades cruelly broken up and hundreds of unfortunate mothers wrongfully imprisoned for the murder of their infants. No scientist apologises, and ministers - past and present - shift around uneasily. As we know, also, many mothers of autistic children had them snatched by the state on this basis. We are told it is "just one of those things", but it is not.

Prof. Colin Blakemore of the Medical Research Council, dismayed by public mistrust of science, recently wrote an article calling for better education and better public understanding of science(2) but the reality is that without common sense, open discussion and fair debate it will keep on going wrong. I do not know for certain what the truth of MMR and autism is, but I know that we are not getting a balanced and fair debate, and this is very dangerous. What we need from scientists - for all science's great and beneficial achievements - is not to be brow-beaten, but for them to show a little more humility. Then people will trust them. But for the moment, the rest is silence...

(1) Ham & High, (January 2, 2004)

(2)'Where would we be without boffins', The Observer (December 28, 2003)

Competing interests: Parent of an autistic child

Re: Re: Unequal standards 5 February 2004
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David R Sherman,
Parent
CV5 7FB

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Re: Re: Re: Unequal standards

As promised, I post the reply received from the UK DOH in relation to the question regarding the validity of the Danish study to the UK given the UK MMR vaccine contains different strains of the viruses.

"Thank you for your email. The relevance of the Danish study has to the UK is that it has followed about 500,000 children and can conclusively say that there is no link between MMR and autism. The Enders Edmonston strain of measles is not the same as the Moraten strain. Wistar RA 27/3 strain of rubella is the same as RA 27/3 "

So there we have it - different vaccine but it proves that the (UK) vaccine is safe.

Anyone still wondering why parents cannot find it in themselves to trust the DOH?

Competing interests: None declared