By Marilynn Marchione and Kristen Gelineau
Virginia - Wesley Sykes is in a rage. Dinner was late. His cup held water, not soda. Strangers had stolen his mother's attention all afternoon. It is too much for the nine-year-old autistic child to bear. He begins to flap his arms and shriek, working himself into murderous screams that shatter his suburban home and all hope of a normal life.
His mother, the Reverend Lisa Sykes, has her own rage, against the demon she blames for Wesley's condition. It is thimerosal, a mercury-based preservative she received in a shot during pregnancy and which he received in childhood vaccines.
To the Richmond, Virginia, pastor, this is a crusade. To most scientists, it's a leap of faith. The levels of mercury in vaccines - now and in the past - do not cause autism, they repeatedly have declared.
But not everyone is convinced. Seven years after it began, the debate about vaccines and autism just won't die.
In fact, it appears to be finding new life. Several churches have started a grassroots movement to rid vaccines of mercury. A new book on the issue is getting attention. A Kennedy has entered the fray.
"I think this issue has persisted, despite a boatload of scientific evidence ... because there are no answers for parents of children with autism," said Dr Sharon Humiston, a University of Rochester paediatrician with a foot in both worlds.
She once worked for the government's National Immunisation Programme, and she has a son whose autism she refuses to blame on vaccines.
Medical controversies flourish when science is lacking. In this case, both sides have limited science and each criticises the other's.
Vested interests make it tough to know who to believe. Many parents have filed lawsuits. Many scientists have ties to vaccine makers or are selling their expertise in court cases. Government officials don't want people to turn away from vaccines, which have clearly benefited public health.
Both sides also have credibility problems. Opponents initially accused the measles vaccine, which never contained the preservative, of causing autism. The government defended a troubled pertussis vaccine for more than a decade before switching to a safer version.
"There's conflict on all sides," said David Kirby, author of "Evidence of Harm," a book urging more research.
There are two main questions:
- Did older vaccines, which contained more thimerosal than the trace amounts in modern ones, raise the risk of autism?
- Are there risks today?
Flu vaccine sold in multidose vials still contains the preservative, and the government urges flu shots for pregnant women and young children even though not enough thimerosal-free ones are available, critics say.
Finding answers is tough because autism, a little-understood developmental disorder, often is diagnosed at the very ages when children get vaccines.
The stories are remarkably similar: A seemingly normal child gets a shot and days, weeks or months later, withdraws from the world, stops speaking, becomes upset at random stimulation such as a doorbell, and adopts compulsive behaviours like head-banging.
Parents blame vaccines, but "that doesn't make it true, no matter how strongly they believe it," said Dr Steve Goodman, a Johns Hopkins University biostatistician who served on an Institute of Medicine panel convened last year to take an independent look at the evidence, which it found unconvincing.
Beliefs and evidence are things that Sykes, pastor of Richmond's Christ United Methodist Church, understands. A soft-spoken, slender woman, she has a degree from Princeton Theological Seminary. The daughter of two CIA employees, she was brought up to trust the government.
"I'm the last one who should be screaming conspiracy," she said. A test showing Wesley had mercury levels off the chart "was my baptism into this issue".
During pregnancy, she had been given a shot to prevent problems from occurring because she and her baby had a mismatched blood factor.
Now, she learned that the drug contained thimerosal, which is half mercury.
The additive was also in most childhood vaccines then, and had been used since the 1930s to prevent bacterial contamination, especially in multidose vials.
By November 1997, Congress was getting complaints. It ordered the Food and Drug Administration to review mercury in vaccines, drugs and food.
The government and a doctors' group said there was no evidence of harm but that vaccine makers should move toward eliminating thimerosal to be safe. It wasn't until 1999 that vaccines with only trace amounts of thimerosal started to be introduced.
By then, parents had organised. Barbara Loe Fisher, a Virginia mom who is president of the National Vaccine Information Centre, which had successfully campaigned for the safer pertussis vaccine, was disturbed federal officials didn't order thimerosal out.
"I believe this is a failure to regulate industry, no question," she said.
She believes that a subset of kids can't handle mercury because of a genetic or other kind of predisposition.
Others think it might be something else in vaccines, such as aluminium, or a hyper-reaction to the vaccine itself.
There's a three to eight percent recurrence rate of autism in families and the disorder is four times more common in boys - more suggestion of a genetic link.
A suburban Kansas City family's experiences suggest such a link. All three of Kelly Kerns' children are autistic.
In June 2000, government officials, scientists and vaccine makers met to review safety data the Centres for Disease Control and Prevention had from several large health insurance companies.
The CDC's Dr Tom Verstraeten presented results of a crude analysis suggesting mercury might be linked to some problems like language delays. As for autism, "we don't see much of a trend except for a slight, but not significant, increase for the highest exposure", he said, according to a transcript that vaccine opponents have posted on the Internet.
But he admits that when he reviewed other studies, he was "stunned" to see how plausible the argument of harm was, according to the transcript.
The Institute of Medicine in 2001 also found the theory "biologically plausible" but said evidence was inadequate to accept or reject it.
Fights over limits to damages that families could seek in lawsuits followed. They drew the attention of Robert F Kennedy Junior, a lawyer and environmentalist who has pushed the issue on news shows and in an article in Rolling Stone magazine. He criticised the government.
"It was clear to me that the reports they're relying on are 'cigarette science'," he said, referring to tobacco companies' past arguments that there was no proof cigarettes caused cancer.
Churches, too, are getting involved. Two weeks ago, Sykes convinced the Virginia Conference of the United Methodist church to pass a resolution calling for the removal of mercury from vaccines and medicines. The same resolution recently passed Kerns' East Kansas Conference of the Methodist Church 650-0.
The Virginia Synod of the Evangelical Lutheran Church of America has referred the measure to a committee. The Virlina District Church of the Brethren, which serves parts of Virginia, West Virginia and North Carolina, is drafting its own version.
Meanwhile at Sykes' home, the day that melted down with her son's screams was turning into night. Sykes' husband, Seth, returned home from work. Wesley cuddled with him in the recliner and watched TV before going to bed.
There will be more tantrums, more battles, more tears.
But for a rare moment, everything seemed normal. - Sapa-AP