BMJ Feedback to Elliman and Helen Bedford Hear the Silence/MMR

[Guest guest]

http://bmj.bmjjournals.com/cgi/eletters/327/7428/1411-a

GO AND ADD your response

BMJ Rapid Responses to:

Elliman and Helen Bedford

Hear the Silence

BMJ 2003; 327: 1411-a

Another view 12 December 2003

richard horton,

editor, the lancet

the lancet

Send response to journal:

Re: Another view

Email richard horton

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

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 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 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, 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,

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

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.

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

CA ,

Parent

LA9

Send response to journal:

Re: Where the problem really lies

Email CA

" All this film can do is raise anxieties, " say 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)

Horton's view 12 December 2003

Neville W Goodman,

Consultant Anaesthetist

Southmead Hospital, Bristol, BS10 5NB

Send response to journal:

Re: Horton's view

Email Neville W Goodman

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 ... 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 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

S. Goldman,

Computer Scientist

S. Goldman, Computer Consultant

Send response to journal:

Re: Hear the Silence Reviews

Email S. Goldman

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] C, E, Rowe K. Surveillance of symptoms following MMR

vaccine in children, Practioner Jan. 1989, 233(1461):69-73.

[3] B, 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, kin 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, 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] B, E, Lingam R, s N, 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, 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, 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, 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, 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, S. Goldman, Ph.D.

Competing interests: None declared

Re: Hear the Silence Reviews 13 December 2003

Mark Wilks,

Clin Scientist

St Barts Hospital EC1A 7BE

Send response to journal:

Re: Re: Hear the Silence Reviews

Email Mark Wilks

I read 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 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, 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

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.

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 and 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, A, s N, E, Stowe J, B. Prevalence

of autism and parentally reported triggers in a north east London

population. Arch Dis Child. 2003 Aug;88(8):666-70.

2: E, s N, Waight P, B. Bacterial infections, immune

overload, and MMR vaccine. Measles, mumps, and rubella. Arch Dis Child.

2003 Mar;88(3):222-3.

3: s N, E, B, Lingam R, A, Stowe J, Waight P.

Recall bias, MMR, and autism. Arch Dis Child. 2002 Dec;87(6):493-4.

4: B, Lingam R, A, Stowe J, E, s 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

S. Goldman,

Computer Scientist

S. Goldman, Computer Scientist

Send response to journal:

Re: " Hear the Silence " Reviews

Email S. Goldman

The four manuscripts cited by Dr. Mark Wilks have a common

author/coauthor, s 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,

S. Goldman, Ph.D.

Competing interests: None declared

societal responsibility 14 December 2003

Jan M Perkins,

Assistant Professor

CMU 49340

Send response to journal:

Re: societal responsibility

Email Jan M Perkins

I appreciate the thoughtful response of 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

Kathleen F. Yazbak,

Director of a Nonprofit Organisation

Boston, MA 02114,

Elliman, Helen Bedford

Send response to journal:

Re: Dr Elliman is WRONG

Email Kathleen F. Yazbak, et al.

“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 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 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.

Prager wrote “Hear the Silence” after meeting many families like

mine. t son’s character, 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

Pimm,

Student

tr112af

Send response to journal:

Re: Hear the Silence

Email Pimm

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 Paxman and 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 Wakefield in 'Hear the Silence' , with Connery (or better

still Crowe?) playing the part of Brent , 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 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

L S ,

General Practitioner

Surgery, Newport, Pembrokeshire UK SA42 0TJ

Send response to journal:

Re: Beliefs are just Beliefs ?

Email L S

<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).

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 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

Elliman,

Consultant in community Child Health

Great Ormond street Hospital, London, WC1,

Helen Bedford

Send response to journal:

Re: Re: Another view

Email Elliman, et al.

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 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.

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

Ed ,

Locum Cons. Community Pediatrician

Gt Ormond St, London WC1

Send response to journal:

Re: Two separate questions

Email Ed

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. 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

C ,

none

02030

Send response to journal:

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

Email C

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

GH Hall,

Retired physician

EX1 2HW

Send response to journal:

Re: A conspiracy of silence

Email GH Hall

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

L S ,

GP

Surgery, Newport, Dyfed, SA42 0TJ

Send response to journal:

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

Email L S

Ed 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

M C Feliciello,

N/A

Leeds

Send response to journal:

Re: Re: Re: Another view

Email M C Feliciello

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

Ed ,

Locum Cons. Pediatrician

Gt. Ormond St, London, WC1

Send response to journal:

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

Email Ed

I can retract willingly enough, because I agree with Dr. 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. 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

----------------------------------------------------------------------------

----

--------------------------------------------------------

Sheri Nakken, R.N., MA, Classical Homeopath

Vaccination Information & Choice Network, Nevada City CA & Wales UK

$$ Donations to help in the work - accepted by Paypal account

vaccineinfo@... voicemail US 530-740-0561

(go to http://www.paypal.com) or by mail

Vaccines - http://www.nccn.net/~wwithin/vaccine.htm

Homeopathy On-Line course - http://www.nccn.net/~wwithin/homeo.htm

ANY INFO OBTAINED HERE NOT TO BE CONSTRUED AS MEDICAL

OR LEGAL ADVICE. THE

DECISION TO VACCINATE IS YOURS AND YOURS ALONE.

******

" Just look at us. Everything is backwards; everything is upside down.

Doctors destroy health, lawyers destroy justice, universities destroy

knowledge, governments destroy freedom, the major media destroy information

and religions destroy spirituality " .... Ellner