AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER    
Tuesday, November 27, 2001 

INDEX:
*  Family calling for a cure for autism
*  Conference Society for Neuroscience
*  Brit. Medical Breakthrough Editorial: MMR and the Age Of Unreason
*  MMR Expertopathy: Commentary
*  Having Faith: An Ecologist's Journey to Motherhood By Sandra Steingraber
*  Lawsuit : Suit aims for more Group Home Funds
*  Behavioral Chat Tomorrow with Guest Host...and about our E-News

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Family calling for a cure for autism

Unconventional fundraiser to help curb cost of boy's experimental treatments

Sunday, November 25, 2001By Carrie Wolfe
Staff writerA good day for 7-year-old Rimas Vaznelis is when he agrees to wear shoes, put on pants that cover his knees and eat something other than french fries."We thank God that Ore-Ida makes microwaveable french fries," said his dad, Sig.Until recently, it was not uncommon for Rimas, who is autistic, to stare blankly at people, scream uncontrollably, bang his head against the wall and bite himself. But experimental treatments he recently started seem to be helping him emerge from his trance-like state.Since June, Rimas has learned to recognize numbers one to 10 and most letters of the alphabet. On weekends, he now loves to hang out with his dad."He's not talking, but just the fact that he wants to be with me is a wonderful thing," Sig Vaznelis said. "And with that you get a connection."The treatment, called chelation, siphons toxins like mercury out of his body. But the treatment is costly — $1,100 per month — which is prompting Rimas' family to start a home-based business called Call4aCure. It will help pay for treatments and help other families in similar situations. In addition to the cost of the treatment, Rimas' daily routine includes 54 pills his parents hide in his ketchup and dissolve in his orange juice since he won't swallow them otherwise.His family shells out $400 every month for medicines and therapy. And, Rimas is on a special diet that excludes milk, wheat, oats and barley. His mom, Ruta, shops at health food stores where a lunch-sized bag of non-wheat pretzels costs $1.79.Since autism has no proven cause or cure, Sig Vaznelis said, it's common for them to wrangle with insurance companies over what costs should be covered. "It's just a constant fight," Vaznelis said.Call4aCure is a way to make money with local and long distance phone service people already use, Vaznelis said.The way it works is simple: when someone signs up under the program, 15 percent of the customer's phone bill goes to Call4aCure.The couple is funding the business through family connections to a Detroit-based phone company that has agreed to donate the 15 percent of customers' bills.Of the 15 percent that will go to Call4aCure, 10 percent will go to Rimas' treatments, 2.5 percent to running Call4aCure and 2.5 to a national autism organization. "I figure my reasoning on this is: now I have a lot of connections through business and politics, and I have a friend who owns a phone company," Vaznelis saidVaznelis owns Morris Engineering in Lisle and is Lemont Township's highway commissioner. He also sells cigars on the side to raise money for Rimas' medicines and therapy.The Call4aCure program also allows other families with autistic children and national organizations that fund research for children's diseases to join the program. They can branch off on their own and receive 12.5 percent of their customers' bills for their own children or organization. The other 2.5 percent would go back to Call4aCure."It's an untapped source," Vaznelis said. "You know that somebody's keeping that 15 percent and putting it in their pocket. I'd rather give it to parents."Before Rimas was vaccinated at 11 months, he seemed to be developing normally. By age 1½, he was just learning to talk. Sig and Ruta believe the vaccines Rimas received, which contained mercury, poisoned the boy and gradually sent him behind what Sig Vaznelis describes as a locked door to which there is no key.Although chelation treatments are what doctors would give someone with mercury poisoning — and Rimas' mercury level is extremely high —Vaznelis said it's not a Food and Drug Administration-approved method for treating autism.The disorder is more prevalent in boys (four out of five autism cases) and can occur as often as one in 250, he said. Some people believe there has been an explosion of autism in recent years, although some attribute the increase to better diagnostics, said Terry Leyerle, vice president of the Southwest Suburban Cook County Chapter of Autism Society of Illinois in Oak Lawn.Still, parents want research and answers, she said. Many of the 30 Oak Lawn families that have joined the autism group since it was founded in January are planning to join Call4aCure to keep from doing fundraisers next year, she said."It seems like it would be a great way to help other families," she said.Vaznelis said Call4aCure can save customers 25 percent on their monthly phone bills, with no monthly fees and national long distance at 6.9 cents per minute for residential lines and 5½ cents a minute for businesses.Family friend Saul Anuzis, who owns Quick Connect USA, the phone company contributing to Call4aCure, said his business saves people money through federal competition laws. The laws allow the company to buy phone lines in bulk from Ameritech and other major phone companies, he said."We tried to create a win-win situation to help a friend out who's got a specific need," Anuzis said. "And he's designed it to help other families who are in a similar situation." Sig Vaznelis' goal is 1,000 lines, which — based on $50 of use per month per line — would translate to $60,000 per year for additional medicines and therapy for Rimas, $15,000 for Call4aCure, and $15,000 to a national autism organization.So far, they have 70 lines. But they're willing to do whatever it takes, Vaznelis said, because Rimas' new treatments are making the imaginary door he's behind more transparent. "We don't know if he'll ever talk," Ruta Vaznelis said. But recently, Rimas did eat something besides french fries — seven slices of salami. "I get so excited about that because it's something else for me to put in his lunch," she said.Small hurdles like that are monumental for them, Sig Vaznelis said."We can see each other now," he said. "... My son's coming back. And that's what I'm fighting for."For more information on the program, call (866) 4ACURE4, or go online at Call4aCure.com.Carrie Wolfe may be reached at cwolfe@dailysouthtown.com or (708) 633-5967.
http://www.dailysouthtown.com/southtown/yrtwn/swest/251swyt2.htm
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Conference Society for Neuroscience

San Diego, California, 11-15 November 2001 BioMedNet's Conference Reporter has just finished reporting from the SFN. You can now read the full summary of this conference as well as access the full archive of reports. New windows into the brain
The Society for Neuroscience annual meeting "is a zoo," one neuroscientist put it, some weeks before this year's conference: "Everyone hates it, yet everyone goes." This year was no different: Undaunted by slashed budgets or security concerns, a record 28,500 attendees from all over the world swarmed in on sunny San Diego. Armed with massive programs, neuroscientists could be seen and heard everywhere: in hotels, restaurants, on TV, in taxicabs, jogging on the boardwalk. For the week of the conference, the town normally known for such intellectual exclamations as "dude" and "sweet!" resounded with animated debates on neuronal plasticity, synapses and signaling. For some young scientists, the main attraction was the opportunity to see neuroscience greats and Nobelists like Eric Kandel, Stanley Prusiner and Paul Greengard. In a Presidential Special Lecture Paul Greengard told a packed conference hall that the latest studies of the dopamine receptor, implicated in disorders from Parkinson's disease to schizophrenia, all converge on DARPP-32, a molecule he predicts will make pharmaceutical companies very happy.
More...

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FEAT DAILY NEWSLETTER

British Medical Breakthrough Editorial: MMR and the Age Of Unreason
From the editor of the British Journal of General Practice

http://www.rcgp.org.uk/rcgp/journal/issues/nov01/editor1.asp

  In the catalogue of modern medicine, it is hard to come up with
anything in which the benefits are so enormous and the risks so small, as
immunisation programmes. Whether immunisation, improving social standards or
changes in virulence can claim most of the credit for the reduction in
mortality from tuberculosis and measles is uncertain, but few would dispute
the role of immunisation in the worldwide eradication of smallpox, the
ending of paralytic poliomyelitis, the effective disappearance of diphtheria
and tetanus and, more recently, the fall in morbidity and mortality owing to
haemophilus meningitis. However, the extensive and effective programmes
carry risks. First, the folk memory of diseases and their severity fades
quickly. All of us share in this: there are now generations of doctors and
nurses, as well as parents, who have never seen children with measles.
Second, it is easy to become complacent about the balance of risks and
benefits.
      The continuing saga of the measles, mumps and rubella (MMR) vaccine
will be familiar to most BJGP readers. Papers published in the Lancet
suggested a causal link between MMR immunisation and both inflammatory bowel
disease and autism.1,2 A number of studies have since examined this claim
and failed to find any evidence to support the original findings.3-6 A
review of the evidence set out chronologically, which was recently published
in the Archives of Disease in Childhood, concluded that ‘There is no good
scientific evidence to support a link between MMR vaccine and autism or
inflammatory bowel disease.’7 The United Kingdom’s Department of Health
(DoH) examined the evidence, reached the same conclusion on risks, and
stated that offering three separate vaccines would increase the risk of
children catching the diseases.8
      Meanwhile, vaccination rates nationally have fallen. The latest data
for England shows 87% coverage for 2000/2001.9 This is below the target rate
of 95% felt necessary to provide the level of herd immunity to eliminate
infection, but it also conceals regional variations, with London having the
lowest rate of 79%.9 Concerned parents continue to ask about the risks that
the medical profession and the government might be hiding from them, and one
doctor who has been supplying the vaccines separately in a non-National
Health Service (NHS) clinic has been reported to the General Medical
Council. In its public utterances, the DoH’s spokespersons betray a degree
of exasperation with the public’s refusal to accept both the evidence and
the vaccination being offered.
      An article published in this month’s BJGP provides some insight into
one side of this story.10 A focus group study of parents — some of whom had
accepted and some of whom had decided against immunisation for their
children — reveals a mixture of careful decision making in the face of
conflicting information, some influence of modern folk knowledge, and
scepticism of the Government’s position. Some of these parents recognised
that payments to general practitioners based on achieving immunisation
targets represent a major conflict of interest that could compromise their
ability to provide impartial information and advice to their patients.
      Behind the results reported by the authors, the data reveal the
culture so familiar to anyone working in primary care in the UK: a healthy
scepticism for any expert opinion, stronger after the BSE debacle and
fuelled by alarmist reporting on medical risks, such as the third-generation
combined contraceptives. However, when this is combined with a desire to be
treated as an equal when making decisions, and a view that, when there is
uncertainty, many members of the public would sooner not interfere by taking
unnecessary medicines, it can become a flight from reason.
      The story raises numerous issues of fundamental importance to any
country’s medical system. Starting at the most basic level, it is an example
on a grand scale of the ethical conflicts all doctors face every day. In its
laudable desire to do good, the Government maintains its original line that
the MMR programme represents the best method of preventing diseases that
carry appreciable morbidity and mortality. It implicitly concludes that the
only harm will come from not taking its advice. Unfortunately, what is
required in order not to harm is not always the same as that for doing good.
The report confirms anecdotal evidence that there is a substantial minority
of people who would like to make the decision separately for the three
diseases and who, if faced with the choice between none and three vaccines,
will opt for none. If the immunisation rates were to fall dangerously low
then the Department would have to bear some of the blame for the resulting
harm.
      Beyond this is patients’ autonomy. Some parents have clearly signalled
their willingness to have their children immunised with one, two, or even
all three vaccines, provided they can be given separately. The DoH’s
position of simply repeating the evidence and its previous advice fails to
respect patients’ autonomy, or acknowledge that we all, as both patients and
professionals, make important decisions that are only partly based on the
best evidence. The DoH, as one arm of government, should try to be
consistent about this. It cannot encourage choice in some areas of public
policy and discourage it in others. At the same time, we should sympathise
that the Department is in a difficult position: any retreat from its current
stance would prompt knowing remarks along the lines of: ‘There — we always
knew they weren’t telling us the truth.’
      For doctors giving advice the position is slightly different. As
things stand, and again based on the best evidence, our patients can only
accept or refuse the triple MMR. Since the evidence is unequivocal about the
considerable benefits and negligible risks, then we have to advise them to
accept the MMR vaccine. The DoH’s uncompromising stance may risk alienating
the public, but in the circumstances any other advice risks doing harm.
Azeem Majeed has argued persuasively that if a parent refuses the MMR
vaccine then any advice we give to take the vaccines separately is
minimising the harm.11 However, there is a fine line between giving
reluctant advice to minimise harm, and colluding with decisions taken in
good faith but unsupported by the evidence. We too have to be consistent in
communicating evidence. We cannot appeal to patients’ reason when, for
instance, we try to persuade them to give up smoking, and ignore it when it
comes to MMR. We may respect, or even admire, them for rejecting the advice
but we can do so without compromising our own position.
      The mass media also have a responsibility in the way that they filter
and report medical research to the public. Bandolier commented that ‘There
are lessons to be learned, certainly by news reporters, certainly by editors
of learned journals and their peer reviewers, and probably by providers of
healthcare.’12 There has been a suspicion among doctors that mass
circulation newspapers are much more eager to report alarming scare stories
than dull, reassuring ones. Support for this view comes from a study
examining the frequency with which papers from the Lancet and the BMJ were
reported in The Sun and The Times newspapers, showing that randomised trials
and systematic reviews were less likely to be reported than observational
studies, and that both newspapers over-reported on women’s health and sexual
and reproductive health.13
      While Evans and colleagues are only reporting a small qualitative
study, the findings on parents’ response to target payments is worrying. It
is generally agreed that target payments for the primary immunisation
programme have been effective in helping to improve the coverage in the
overall population. Such a system can work when there is a clear consensus
both about the objective and how it is to be achieved. However, once the
consensus breaks down target payments may also turn out to have negative
effects, and these could extend beyond the limited area of MMR immunisation.
The DoH may wish to consider whether preserving patients’ trust in their
doctors has a value that far outweighs the benefit of high MMR immunisation
rates.14
      Finally, does the DoH need to revise both its conclusions and the
process by which it reaches them? The website where its advice can be found
is admirably clear, well set out, and easy to navigate.8 However, it is
striking how many times it uses the word ‘expert’, as if the use of this
mantra will quash any disagreement. The DoH appears not to have noticed that
experts are no longer instantly deferred to by the medical profession, let
alone the public. The medical profession is struggling to involve patients
much more in the decisions concerning their own health and exploring the
best ways of achieving this. Lay representation is now familiar on many
medical bodies, following the pioneering example of the RCGP many years ago.
The DoH may need to recognise that people make decisions for legitimate
reasons other than pure science, and that it should include the lay voice,
particularly the dissenting voice, when it produces advice in controversial
areas.
      DAVID JEWELL  Editor

      References
      1. Thompson NP, Montgomery SM, Pounder RE, Wakefield AJ. Is measles
vaccination a risk factor for inflammatory bowel disease? Lancet 1995; 345:
1071-1074.
      2. Wakefield AJ, Murch SH, Anthony A, et al. Ileal-lymphoid-nodular
hyperplasia, non-specific colitis, and pervasive developmental disorder in
children. Lancet 1998; 351: 637-641.
      3. Peltola H, Patja A, Leinikki P, et al. No evidence for measles,
mumps, and rubella vaccine-associated inflammatory bowel disease or autism
in a 14-year prospective study. Lancet 1998; 351: 1327-1328.
      4. Taylor B, Miller E, Farrington CP, et al. Autism and measles,
mumps, and rubella vaccine: no epidemiological evidence for a causal
association. Lancet 1999; 353: 2026-2029.
      5. DeWilde S, Carey I, Richards N, et al. Do children who become
autistic consult more often after MMR vaccination? Br J Gen Pract 2001; 51:
226-227.
      6. Arlett P, Bryan P, Evans S. A response to ‘Measles, mumps, rubella
vaccine: Through a glass, darkly’ by AJ Wakefield and SM Montgomery and
published reviewers’ comments. Adverse Drug React Toxicol Rev 2001; 20:
37-45.
      7. Elliman DAC, Bedford HE. MMR vaccine — worries are not justified.
Arch Dis Child 2001; 85: 271-274.
      8. Department of Health. Measles, mumps and rubella vaccine (MMR).
http://www.doh.gov.uk/mmr.htm
      9. Department of Health. NHS Immunisation Statistics, England:
2000-2001. http://www.doh.gov.uk/public/sb0121.htm
      10. Evans M, Stoddart H, Condon L, et al. Parents’perspectives on the
MMR immunisation. A focus group study. Br J Gen Pract 2001; 51: 904-910
[this issue].
      11. Majeed A. Referral of Dr Peter Mansfield to the GMC. BMJ 2001;
323: 163.
      12. Bandolier. Even more on MMR.
http://www.jr2.ox.ac.uk/bandolier/band88/b88-2.html
      13. Bartlett C, Sterne J, Egger M. What is newsworthy? A comparison of
reporting of medical research in British tabloid and broadsheet newspapers.
Fourth International Congress on Peer Review in Biomedical Publication.
Barcelona, Spain, 14 to 16 September 2001.
      14. Fugelli P. Trust – in general practice. Br J Gen Pract 2001; 51:
575-579.
      15. Sackett DL. The sins of expertness and a proposal for redemption.
BMJ 2000; 320: 1283.

    Address for correspondence
      Dr David Jewell British Journal of General Practice, Royal College of
General Practitioners, 14 Princes Gate, Hyde Park, London SW7 1PU
E-mail: journal@rcgp.org.uk

* Perhaps an obtuse reference to Jean-Paul Sartre's book "The Age of Reason"
which such reference would no doubt instill him with Nausea, were he still
alive. He is however, quite dead, and thankfully so is his stupid
existentialism "philosophy."  But I digress. . . -LS
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MMR Expertopathy: Commentary

MMR Expertopathy
Commentary

      Those who doubt the MMR vaccine, either in combination or even
separately, just may not have concluded, as the good Doctor Jewell does in
the British Journal of General Practice editorial, that the evidence
gathered to date demonstrates clear cut safety of the potion. Here, as
elsewhere, dissenters are characterized as "unreasonable" followers of ideas
not borne of "pure science", but of something less.  While the Doctor
correctly cites the counterproductive patronizing spin found on the DoH
website with their "expert" assurances, curiously he nonetheless remains
blind to his own.
      The editorial calls for the medical legalization of time separated
measles, mumps and rubella vaccines.  This is a significant breaking from
the British medical establishment ranks and worth noting.
      The issue of combination vaccines is a proxy controversy for the
larger issue of vaccine safety in whatever form. Worry over single
vaccinations is silly. After all, separated doses have been available in the
United States for some time and vaccine compliance rates here remain at all
time highs, outbreaks at all time lows.  It is the camel's nose of doubt
under the tent of British medical expertise imagery that worries all the
king's men. Their overstated pronouncements of categorical scientific
vaccine safety belie a public health system short on self-confidence.
Expert blustering will not do well to win over the growing troublesome
hysterical rabble who in the experts' eyes, seem to prefer the health advice
of faeries and leprechauns, on or off the internet.
      The begged question underlying all the vaccine controversy still
remains largely unasked, let alone answered by the medical guardians on
either side of the big pond: if it isn't the vaccines rendering our children
autistic in purported epidemic numbers, then what is?
      -Lenny Schafer
FEAT DAILY NEWSLETTER
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Having Faith: An Ecologist's Journey to Motherhood By Sandra Steingraber

Book review -
Having Faith: An Ecologist's Journey to Motherhood  By Sandra Steingraber

http://chicagotribune.com/features/books/chi-0111240013nov25.story?coll=chi%2Dleisurebooks%2Dhed

Ms. Steingraber previously wrote "Living Downstream," about cancer-causing chemicals in the environment.  It is an
excellent book, in my opinion.  She's from the Peoria area and mentions local pollutants.  Now she has a new book about
childbirth and toxicity.

An excerpt from the Chicago Tribune book review:

quote

That she can so closely relate the intimate to the empirical is admirable, but Steingraber's real gift is the ability to
explain scientific concepts in everyday language. She describes the placenta as the size, shape and weight of a
single-layer cake. She explains that the placenta is capillary-filled fetal branches soaked by spumes of mother's blood.
The placental barrier is located in the skin of the branches. All this leads up to a description of how the placenta can
actually increase toxicity. "In the case of methylmercury, the placenta functions more like a magnifying glass than a
barrier." She describes a dioxin molecule as a bicycle--"two sturdy carbon wheels held together by a frame of oxygens
and a varying number of chlorine flags flying out from the fenders." She explains history and evolution as clearly and
concretely.

Part 2 of the book is three chapters on nursing and mothering. Here we learn about lactation and the dangers and
advantages of nursing. Steingraber concludes:

"Any discussion of breast milk contamination [by chemicals], either in the popular press or in the scientific
literature, is almost invariable followed by a reassuring statement to the effect that breastfeeding is, nevertheless,
the best method of infant nourishment. . . .

" `Just keep nursing because the benefits outweigh the risks' means that we nursing mothers should take no action until
our milk becomes so contaminated as to pose as many risks [to pediatric health] as formula. In other words, until breast
milk, like formula, kills 4,000 U.S. infants a year."

The question comes down to whether contaminated breast milk is better than uncontaminated, but otherwise inferior,
formula. Steingraber thinks the question should be how do we get contamination out of breast milk. Should that be done
by a change of lifestyle for women (as she shows, that isn't too effective), or should the makers and users of chemicals
that accumulate in breast milk be held responsible? That would require political change.'

end quote
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Lawsuit : Suit aims for more Group Home Funds

BY ANDREA L. BROWN, STAFF WRITER
A lawsuit charging the state with shirking its obligations
to thousands of developmentally disabled Illinois residents
could attain class action status. Hearings began Nov. 15 in
front of Federal Judge John Grady and will continue Tuesday
on behalf of four families seeking residential services for
their mentally handicapped children who have been deemed
eligible to receive the services. The hearing is an offshoot
of another suit filed September 2000 against the Illinois
governor and other state public aid and human services
departments on behalf of nine families seeking residential
services and five seeking day services. “The lawsuit
was filed because developmentally disabled people are
entitled as a matter of law to services,” said
attorney Robert Farley of Naperville. Many private agencies
that serve the developmentally disabled would be willing to
expand, but the state won’t increase funding, he said.
Arlington Heights-based Clearbrook Center, which has had a
waiting list of more than 700 for 10 years is one such
example, Farley said. An expert ranks Illinois near the
bottom — 47th — among the 50 states as far as
serving its developmentally disabled population, Farley
said. “The bottom line is Illinois does a poor job of
providing services to the developmentally disabled,”
Farley said. “It’s a human tragedy that Illinois
ranks at the bottom.” Farley’s bid for a class
action suit was prompted by similar lawsuits filed in other
states, which have been successful. “The federal
courts have ruled that it’s a violation of federal
Medicaid law to deny a developmentally disabled person
services with reasonable promptness,” Farley said. The
state has long waiting lists of developmentally disabled
people who qualify for residential services, Farley said. An
exact number isn’t available, but state officials have
stated in documents the number who need such services is in
the thousands. People who qualify for residential programs
often aren’t placed until the situation becomes dire,
such as when a family caregiver becomes sick or dies, Farley
said. “In Illinois the only people who receive
residential or group home services are those whom the
epartment deems a priority or an emergency,” Farley
said. “The problem is the state of Illinois will not
provide the funding,” Farley said. “The
entitlement program is being shrunk.” At the same time
it has limited growth of its smaller state institutions,
Illinois has not increased its group home offerings,
especially in the counties around Chicago, he added.
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Behavioral Chat Tomorrow with Guest Host...and about our E-News

We are having a behavioral chat tomorrow hosted by Deanna Pietramala
of Leaps and Bounds (serves Ontario) at 1:30pm EST. Deanna has tons
of great advice, we'd love you all to join us. We are using the
about.com chat room at http://autism.about.com/mpchat.htm or let me
know if you're having problems at liz@deaknet.com.

Hope to see you there!
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ALL INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR LEGAL ADVICE.  THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH YOUR HEALTH CARE PROVIDER.