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Re: Re: Science, or brass neck?
 

Dear Sir

In reply to John Stone:

<<<<<<<<With all due deference to Hilary Butler is the problem lack of institutional memory or is it selective choice of evidence? In the chain of evidence those parents who report iatrogenic events simply - against all ethical or medically sound practice - have to be pushed out of the way, while official science takes place in a solipsistic vaccuum.

Camille Clark may have excellent hearing but she is also very careful who she listens to. >>>>>>>>

On the one hand, we have people at the cutting face, the parents and the teachers, and the communities, and the psychologists run off their feet, with, what is to them, a real, increasing, evolving problem. These people, faced with the realities of the changes in their roles as teachers, nurses, parents etc, are being asked to believe that really, they are kidding themselves? Perhaps their rampant relatives who went awol, or rampaged over mountain, or were "eccentrics" were really... autistic. Perhaps they were called something else, out of convenience.

Obviously, teachers are stupid. And parents, who say none of their forebears were autistic, are liars. After all, Einstein's gonads weren't much good, and much of his family were "queer".

I can understand this. After all, diphtheria, until the early 1900s, included all forms of croup. It was only in an effort to prove the efficacy of the diphtheria toxin-antitoxin, that a concerted effort was made to separate the croup from the diphtheria, because that then made the toxin-antitoxin look the best thing since sliced bread.

The argument that Aspergers are often diagnosed as Autistic in order to avail them of benefits has its parallels in Polio. Those well versed in the medical literature can provide all the articles showing that in the 50's, doctors often diagnosed non-paralytic polio (that which would be non -paralytic by today's diagnosis) as paralytic, for two reasons. It justified quarantining the family (to fit the social psychohysteria of the time) , and allowed the family to have access to health funding to feed, clothe etc the family until such time as the "family muzzle" was removed. In my extensive polio archives I have many articles discussing the fact that 99% of paralytic polio cases would resolve within a week, with no residual damage, at that point, let alone at 60 days.

So the medical profession has always suited themselves as to how they diagnose things. This happens, even now, in the country with regards people damaged or injured in the public health system. Whereas all hospital admissions and deaths are usually admitted to in the official yearly statistics, the figures for medical error, iatrogenic anything, and hospital infections are withheld. On the grounds, according to one newspaper article, that the Health Department doesn't want the public to "misunderstand" anything.

So yes, if you use medical data, and especially, "cooked" medical history, then you have to accept that one sign of epidemiological times is that, indeed, data can be massaged, manipulated, skewed and jury-rigged to mean exactly what the data-constructor wishes it to say.

The problem with that, is that most people assume that medical history is accurate, when it is not. So, when the medical profession says that X drug wiped out X disease, public believe that, when actually the situation is far more complex than that.

Usually WHEN you have to look at that data in the historical sense, it doesn't make sense. Because if you know the truth you could then say: "Well, the data on Diphtheria is nonsense, because it included all forms of croup, and sometimes other respiratory disorders, such as suppurative tonsillitis, and so, by dividing up the data later, that makes it look like Diphtheria took a plumetting, when, what actually happened, was that doctors became more accurate in diagnosis. So the EXTENT of the historical statistical decline is an artificial construct. It's not nearly as "dramatic" as the graphs show.

Same with Polio. You could say that the American historical mountain of paralytic polio treated at home (as opposed to the well publicised cases in hospitals and on iron lungs) is also a constructed artefact. Had the diagnosticians been forced to adhere to today's standards, and only that data provided we would see that the current showing a steep decline (which is "of course" due to a vaccine), is actually a dubious, crafted manipulation.

Which is perhaps why the United States Polio Surveillance Units data, from 1954 to 1963 are no longer in most medical libraries. They are... mysteriously.. absent. And which is why, in my opinion, most people have never had explained to them, why, after the Salk vaccine was dropped everyone had to have a full, new course, of the Sabin vaccine. At a point where polio had declined, 90 something percent, a couple of years before.

But because people don't know the truth, then haven't the means to think it out for themselves. The same applies with the argument on Autism. Various groups, for whatever reason, are massaging data, and reconstructing history and explanations, to suit their viewpoints.

I know what the US Polio Surveillance Units stats say, courtesy of a doctor who provided them. Were they available to all medical historians it would be interesting to sit back and watch the arguments as statisticians from the Health Department tried to justify the historical statements about polio vaccines.

The problems with using ANY historical arguments to say that Autism has always been around at the rates that it is now, and using Einstein, and other anecdotes to back it up, is that they are unproveable, because we can't go back in time to check out why people "constructed" the data to suit themselves, or whether Einstein's "schizophrenic" child was actually schizophrenic.

Camille tells us why they mash the data NOW, but who is there to tell us why or how, they did it then?

Of what relevance is that to teachers at the coal-face?

When we talk about "data", or "choice of evidence" in the medical sense, we are talking epidemiology and semantics.

As the famous saying goes "Epidemiology is like a bikini. What is revealed is interesting. What is concealed is crucial."

Semantics is the 'art' of medicine. Just look at how any article is written. Doctors are the masters of multi-facetted words, and hedging bets. "Seems to be", "could have been" "either" "or". Rarely do you see anything definitive, except when it comes to public propaganda.

That has ever been the case. Though it is changing. I've kept immunisation brochures from years back. My favourite is one that says "Be wise, Immunise" at the top, and at the bottom "Immunisation means you won't get it."

These days, while the first statement is still used, as its such a cute sound bite, they have realised its very stupid to use the second one. But they still come out with pearlers.

Like a notice put onto an Auckland medical school's notice board addressed to General Mangers/Business Managers by the Occupational Health Service, about the flu vaccine which said:

"The vaccines are accepted as being effective, provided the great majority of staff are vaccinated."

(Come now, it either "works" for the individual, or it doesn't!)

I couldn't resist relieving the notice board of such a magnificent example to add to my collection.

In terms of "who" one listens to, just as it is easy for epidemiologists to "construct" data or make statements, (like the above statement) it is also easy for certain "groups" of people to construct explanations which means that responsibility for their predicament, can be blamed on forebears gonad, "jeans" ~ anything, but ~ not ~ something ~ that might actually mean a person has to really look seriously at an issue. So long as everyone feels that it "just happens" then its and acceptable variant of "norm".

I go back to my original argument.

Talk to older teacher, who taught for their whole, long, careers. When you teach children, you are dealing intimately with a brain, and teaching a brain how to think, extrapolate, read "hidden" social messages, behave appropriately, compute accurately, act on stage, etc....

The brain of any autism spectrum child is so unique as to be unmistakeable. While Autistics have difficulty in understanding the difference between them, and non-autistic people, because they cannot experience what they have not got, the reverse isn't the case.

To non-autistic people, any person with any autistic spectrum sticks out more than a mile, not only because their body language reading abilities, word interpretation, and behavioural responses are limited, but also because of that, you can't teach autistic children in the same way, as you teach non-autistic people.

Teaching autistic spectrum children, either mild or major, is hugely difficult. Something I don't think autistic people appreciate.

Therefore......

One of the groups who will know whether an increase is real, or not, is NOT the epidemiologist, who manipulates data to suit their own needs and end, nor the group itself, as they cannot see themselves as others do, and may have a need to justify their "justifications".

One of the groups who will know whether an increase is real, or not, are the people charged with trying to teach and educate "that" group. They are the ones at the coal face, who couldn't give a toss whether than child is diagnosed as having weta-faced-protrusion, or crocodile-cantering -disorder. All teachers know is that they "have" to get a result, not go by any diagnosis.

They don't give a toss about "labels", because one autistic cannot be taught like another. They are all different, as are non-autistic people all different. As far as teachers are concerned, the epidemic is real. No amount of data massaging, or politically paliative pandering is going to change what they face, every day, when they step into the classroom.

"Choice of evidence" is irrevelant when trying to reveal to autistics those things that come easily to non-autistics. A job that is nigh on impossible. Right now, many have their backs to the wall, and some are ready to climb over it, and run like mad.

All of us as individual have the problem that our "hearing" is affected by the circles in which we moves, and the limitations of our ability to fully perceive other groups around us. Doctors and statisticians have similar problems. To admit a real increase might force them to question certain practices and procedures, be they historical or current.

Teachers don't have that luxury. They have to deal with what is, not what they would like to perceive it to be. And they deal in numbers, classroom sizes, not in individual patients. They have to "do" a job. The do not construct either data, or diagnoses.

Were Camille, or doctors or epidemiologists, to talk to Camille's teachers from the 1960's and 1970's, then talk to long term teachers today, they might hear another view point. The question is, whether they want to.

Sometimes people get stuck in ruts. And you know the definition of a rut. "A grave without an end". That's why so much of medical history, doesn't say what it should do. Because people chose to write, only from the mindset, or viewpoint of their own little grave.

Which makes it all the harder to sort out the real wood, from the real trees, in so many issues, not just autism. Were that not the case, there would be a lot less "argument" within medicine, and we'd not be here today, arguing "this", or any other toss.

Hilary Butler.

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Re: Nutrition, infection and immunity.
 

Dear Sir,

Peter Flegg says this:

>>>>Reliance on good nutrition to protect one’s children is a futile gesture – if your are not immune, you are susceptible and may still develop complications despite being “healthy” and having the best available care on hand. I agree that the severity of some measles complications may be mitigated by good nutrition and good health care. This however is not an argument for thinking measles is benign, or trying to prevent it in the first place. <<<<<

He also says:

>>>>It is also a bit worrying that we should adopt a culture of assuming that we don’t need to stop our children getting ill because if they do our health service will fix them. <<<<<<

He says: >>>Having read your testimonies and of your frustrating efforts to get even half sensible answers to your questions, I can better understand your situation and the barriers you face. <<<<

From my point of view, this is quite incorrect.

Mr Flegg does not understand my position at all. He understands what he thinks my position is, in so far as his baseline is his preconceived ideas of what my position should be. And the same will apply to his interpretation of the opinions of John Stone, or anyone else as well.

Let us look at some of the issues above. The first is his knowledge of the medical literature on nutrition in relation to measles or any infectious diseases. Mr Flegg says:

1)... Reliance on nutrition to protect ones child is a futile gesture.

I disagree. For these reasons:

In Infectious Diseases of Humans, Dynamics and Control (Oxford Press ,1991) the authors state that “the severity of measles is greatly affected by the child’s nutritional state”.

In Tropical Doctor (October, 1982, Part 2 pgs 219 ) "Why measles makes so many children blind ." J.J.M. Sauter says:

“The clinical picture in malnourished measles patients is very typical and entirely similar to that of diseased children suffering from severe vitamin A deficiency, i.e. xerophthalmia… the immediate favourable reaction to a single massive oral dose of vitamin A clearly indicate that these malnourished measles patients are suffering from vitamin A deficiency. Measles is nothing but the precipitating catalyst in this process, owing to its deleterious effect on all the epithelia, in particular on the conjunctival mucous-producing goblet cells.”

The author also says that children with conjunctival xerosis (xerophthalmia stage XIA) treated with 100,000 international units (IU) of Vitamin A for five consecutive days healed within two weeks with no corneal scars.

Left untreated, these children stay blind. So what is the problem? And infection, or their nutrition. No, reliance on nutrition to protect ones' child is not a futile gesture...

To continue:

“Subclinical Vitamin A Deficiency: A potentially Unrecognised Problem in the United States” by Deborah Stephens et al. (Pediatric Nursing, September-October 1996, Volume 22, No 5 pgs 377 – 389) is compulsory reading because it shows that America has these problems as well. The medical literature, in my opinion, makes it clear that New Zealand – and any other country that has complications and deaths, has a vitamin A deficiency, as well as multiple other nutritional deficiencies. Why is it that most of the problems with measles are in children who either have immunodeficiencies, or come from a lower socio-economic strata? As I mentioned above, new studies here, have confirmed widespread broad spectrum third world nutritional deficiencies in this country. And its not just lower socio-economic children any more. Frankly, watching some of the upper strata feeding their babies, doesn’t fill me with confidence either.

Pediatric Nursing 1996 details a study done in Wisconsin, which found that 72% of children with measles had deficient levels of Vitamin A, and the more severe the deficiency the more severe the illness and the complications. Another one analysed, a study in New York looking at children under two with measles, showed that 22% were deficient, and another 26% were borderline. The more deficient a child, the lower the level of measles-specific antibodies, and the higher morbidity and mortality. It also mentioned the American Association of Pediatricians (AAP) who recommend that Vitamin A be given to measles children but only to those with an immunodeficiency, ophthalmological evidence of Vitamin A deficiency, impaired intestinal absorption and moderate to severe malnutrition, eating disorders, or those who have recently immigrated from areas where high morality rates have been observed.

An interesting comment is made at the end of the Pediatric Nursing article, which says that any child found to be at risk for Vitamin A deficiency should also be considered high risk for other nutritional and health problems.

One other of many other factors which have to be looked at is the fact that a bad diet makes viruses worse. Not only does poor diet weaken your immune system, it also makes viruses in the body mutate into more dangerous forms. The researchers of this study said that it is likely to be something humans deficient in selenium and other nutrients could be at risk of – and that their findings could extend to other viruses as well. Furthermore this study indicated that once the mutations had occurred, those with normal nutrition are more susceptible to the newly potent strain (8 June 2001 www.abc.net.au/science/news/health/HealthRepublish_309902.htm )

I could put here, a lot more articles, and some even more recent, but I would bore everyone to tears, so lets get down to the specifics.

Both our children had measles. Not once, but twice. Peter Flegg talks about "misdiagnosis", but I know a doctor who blood tests all children for measles specific rises in antibodies, and she tells me that children in their practice have had measles repeatedly. Not once, but at least twice. The only possible "error" in this calculation is laboratory error, and if that is so, fine. Except for one thing. It would make a mickey mouse poster show of all the infectious disease laboratory diagnoses in this country for at least the last 10 years. Absolutely no "official" figures could be trusted.

No medical journal has published her findings. I don't wonder why.

The oldest son had no problems. But then, he doesn't have an immunodeficiency.

The younger child did have bronchial/ear complications, both times. But this child has test results which put him border-line dysgammaglobulinemia.

I didn't spurn vaccination ON THE BASIS that the system could fix up the complications.

I spurned vaccination on the basis that I do believe that the potential consequences of vaccination can be worse than the disease. And that I, as a knowledgeable mother, should be able through nutrition, and supplements, to mitigate any effects of measles should my children get them. I was well armed before that even came about.

Even worse perhaps in Mr Flegg's eyes, though I went to the medical profession for official, proper diagnosis, I REFUSED to allow the medical system to inflict on my child, what it thought was necessary to clear up those complications. Antibiotics.

And in doing so, I was able to quote articles like the following, but here I use this more recent one, since it illustrates the point much better:

British Medical Journal (BMJ) (Volume 514, 1 February 1997, page 316) “Managing Measles” which stated:

>>>>“What is surprising and rather disturbing, however, is the

***lack of published scientific information on issues that are central to developing a sound basis for managing measles.****

A recent review of clinical problems associated with measles has highlighted the paucity of data on risk factors, aetiology [cause], natural course, and management (except vitamin A) of the common complications of measles.” <<<<

Professor Hussey then goes on to talk about the fact that prophylactic antibiotics are not beneficial in reducing mortality, and about the unnecessary complications such as antibiotic associated diarrhoea, severe drug reactions and the emergence of drug resistant organisms.

The British Medical Journal, as we have seen, considers itself, an independant repository of wisdom, and I agree in general.

Given that I am allergic to just about every antibiotic under the sun, because my parents always availed themselves of anything a doctor chose to write on a prescription pad, I'm not about to trust the future lives of my child to a doctor.

I want my children to be able to use antibiotics in the future should they get something that really warrants it. Though the way the other parents of the world carry on, I doubt whether that will be a reality actually.

As to other related points with regard to measles, an article following Professor Hussey’s one mentioned above(on pg 317) titled “Reducing vitamin A deficiency” by Andrew R Potter is good and states that

>>>>“the elimination of Vitamin A deficiency ultimately will depend on raising living standards… reduction in poverty, improvement in housing, sanitation, water supply, women’s education and primary health care…this doesn’t just apply to third world countries.”<<<<<

And how about this article:

Richard D. Semba, in “Vitamin A, Immunity and Infection” (Clinical Infectious Diseases, 1994; 19:489-499) really has his head screwed on. His article starts out

>>>>“although vitamin A has been known as “the anti- infective vitamin since the 1920’s…”<<<<<

He goes on:

>>>>>“From human studies there are six general lines of evidence:

1) infectious diseases are associated with Vitamin A deficiency

2) Vitamin A deficiency is associated with increased morbidity and mortality from infectious diseases

3) Specific immune alterations take place during vitamin A deficiency in humans

4) Vitamin A and its metabolites are essential to T and B-cell growth and function

5) Vitamin A supplementation enhances immunity in humans

6) Vitamin A supplementation or fortification reduces severe morbidity and mortality from infectious diseases in children. <<<<<

Semba also says

>>>>>“A deficiency of Vitamin A may be associated with a variety of infectious diseases including diarrhoeal and respiratory diseases, schistosomiasis, malaria, tuberculosis, leprosy, rheumatic fever, and otitis media.” <<<<<<

So he is talking about ALL infectious diseases. And that Vitamin A and its metabolites are essential to T and B-cell FUNCTION which is what Chandra was talks about years earlier here:

Nutrition and Immunity (Ranjit K Chandra, 1988) - a book worth reading. Page 257:

>>>> “Current evidence suggests that the complications following measles, are probably closely linked to immunodeficiency, occur during and soon after the exanthem [spots], in the medium term thereafter, and many years later.”

“ We have conducted a number of studies to relate the immunodeficiency of measles to the subsequent course of the disease [whole long list] ....these studies, which were carried out during the acute stage of measles, have shown a critical breakdown of defence mechanisms that could be linked to severity of outcome. It was demonstrated that profound immunosuppression in early measles, which chiefly affects the T and B-cell subpopulations and the specific antibody response to measles, in most cases distinguished between children who subsequently died or developed persistent pneumonia (> 6weeks) from those who recovered. Seventy-seven percent of children with a lymphopenia[1] of < 2,000 cells/mm (to the power of 3) during the rash failed to recover, 30% died and 47% developed chronic chest disease. All the patients who died and many of those who progressed to chronicity failed to produce adequate complement-fixing antibodies. When depression of immunity was less severe (> 2,000 lymphocytes/mm3) recovery was more frequent and mortality insignificant. Sequential studies revealed that the severe quantitative defect in lymphocytes was transient in the majority. When this effect persisted for at least 15 days after appearance of the rash, it was nearly always associated with a poor outcome. In the group of children who finally recovered, there was a more rapid reversal of immunoparesis[2] than in those who died or developed chronicity. Severe lymphopenia (<2,000 cells/mm3) as an index of clinically severe measles was uncommon in mild cases (5%) and was present in 9% of non-measles hospital infections. In the latter it was unrelated to mortality. Among African children, there was a histocompatability-linked genetic susceptibility to the development of severe lymphopenia in measles associated with HLA AW32.” <<<<

The authors go on to say (on pg 259)

>>>>> “It is likely that viral infections (such as influenza and other respiratory viruses) that predispose to secondary bacterial superinfection (especially by staphylococci) do so on the basis of immunodeficiency; it appears that superinfection with opportunistic bacteria, fungi, and protozoa is related to the immunoparesis induced by cytomegalovirus (CMV). The establishment of a number of viruses, Measles, EBV, HSV, and Hepatitis B viruses may also require a period of immunoparesis at onset of infection” <<<<

Question: Is it "immunodeficiency", or is it nutritional insufficiency??? As we have seen, from new studies in this country, nutritional insufficiency is rampant in developed country.

There is also this:

“Vitamin A prophylaxis” (Arch Dis Child, September 1997; 77 (3) 191 – 194 online http://adc.bmjjournals.com/cgi/content/full/archdischild;77/3/191), by Alfred Sommer, Johns Hopkins School of Hygiene and Public Health. He says:

>>>>“Vitamin A appears to play an important part in growth and haemoglobin synthesis… affects iron metabolism reducing the severity of anaemia…restores the normally differentiated epithelia, providing a more effective barrier to infection; and up-regulating immune competence.”

“For example, children admitted to hospital with severe measles who were randomized to Vitamin A supplementation developed a far greater immune response than control subjects” <<<<<

He goes on to state that even:

.... “mild Vitamin A deficiency increases morbidity among children, and subclinical Vitamin A deficiency is associated with elevated morbidity and mortality” and “It is noticeable that high-dose Vitamin A supplementation has reduced morbidity and mortality even among children with no clinical signs of Vitamin A deficiency” and “Clinical trials suggest that Vitamin A supplementation may reduce the incidence of acute respiratory infections among low-birth weight infants and among children who are especially susceptible to respiratory infections”<<<<<

He says:

>>>“Animals with normal Vitamin A status who are given additional Vitamin A have less severe infection when challenged with a wide variety of pathogens” <<<<<

Well, if that applies to humans too, what are the implications of this?

He also says that:

<<<<“the depression in circulating lymphocytes following surgery can be reversed by the administration of high-dose Vitamin A to adults”.>>>>

Were I to continue in this vein, in posting more OF THE articles like this, I would probably constipate the BMJ website, overload its bandwidth, and be the ultimate cure for insomnia. I have deliberately chosen older ones, to show that this knowledge is nothing new.

However, Peter Flegg goes on to say that:

>>>>>Improvements in nutrition/environment will certainly reduce mortality from measles, and we can see how through the 20th century we in the West have been the beneficiaries of this. <<<<<

This is not so, as the new studies in this country shows. Many children, who now land up in hospital, have not been the beneficiaries of better nutritional knowledge, otherwise the tests performed on them, wouldn't show clinical nutritional deficiencies as show below

See here http://www.nzherald.co.nz/index.cfm?c_id=1&ObjectID=9006061

And:

>>>>This trend petered out in the middle of the last century,and case fatality rates have remained steady since then.<<<<<

In real terms the mortality from measles is now higher in the United states as can be seen from the raw data above.

This trend was first noted in an article in the BMJ, on 11 May 1991, page 1106, in an article on measles in New York City. Which commented that of the 2000 cases of measles in the first five months of 1991, 8 had died.

The article then qualified this by saying that the eight were "mainly immunocompromised" suggesting perhaps that such a high death rate was an aberration.

Perhaps they were also "nutritional", as per Chandra et al.

Hilary Butler.