I recently finished reading the book Unbroken by Laura Hillenbrand and couldn't help thinking how relevant its message is to so many communities.
For those unfamilar with the book, it tells the story of Louis Zamperini, one of the world's great runners in the years before the Second World War, his experiences as a Japanese POW, and what happened upon his return to the United States. The author, Laura Hillenbrand suffers from chronic fatigue syndrome/ME. I know, sounds sad and disturbing, right? I agree. And yet it's one of the most profound and uplifting stories I've read in years.
I've been spending a good deal of time recently on chronic fatigue syndrome/ME websites. I don't know if you're aware of this, but lately they've been striking some pretty good blows for the autism community. There has been preliminary data linking both autism and chronic fatigue syndrome/ME to the XMRV retrovirus and it has some of the traditional opponents of the autism community concerned. I've mentioned it before, but both my daughter with autism and my wife have tested positive for the XMRV retrovirus.
The other day there was a web-chat with Chicago Tribune reporter Trine Tsouderous and Dr. Paul Offit regarding vaccine safety. Dr. Jamie Deckoff-Jones, a chronic fatigue patient asked the following question of Trine and Dr. Offit.
Dr. Deckoff-Jones: Are you concerned that the current epidemics of ME/CFS, ASD (autism spectrum disorders) and GWI (Gulf War illness) are related to vaccines? These neuroimmune disease cohorts are all of mysterious etiology and share many clinical similarities: sensory and cognitive processing deficits, susceptibility to and inability to clear certain infections, an unusual susceptibility to stress, increased oxidative stress, glutathione depletion, methylation blocks, mitochondrial defects, high levels of heavy metals, inflammatory bowel issues, hormone abnormalities and a suspicion that vaccines are implicated in pathogenesis. The pathology in humans is extremely similar to what is known of simple retroviral infections in animals. We have evidence that xenotropic and polytropic MuLVs are infecting humans (Lombardi et al Science Oct 2009, Lo et al PNAS Sept 2010). Given the history of the use of mouse and chick embryo cells for vaccine production coinciding with the history of Epidemic Neuromyasthenia (as documented by Henderson and Shelokov, NEJM 1959), the known presence of animal retroviruses in those cells, and the documented ability of these viruses to infect human cells, aren't you the least bit concerned?
Trine Tsouderos: Hi Jamie: I don't agree that problems like glutathione depletion, methylation blocks, etc are associated with ASDs. A study here, a study there, some of dubious quality. I wrote about this last year: (HERE). These ideas are promoted by folks who sell a lot of therapies to "fix" these things when it is not clear they are even there. So I don't think there is good evidence for that.
Paul Offit: The xenotropic murine retrovirus story as a cause of neurologic disease, including chronic fatigue syndrome has clearly fallen apart. And for those of us old enough to remember, many careers have fallen off a cliff claiming retroviruses as a cause of a variety of illnesses: most noteworthy, MS and Kawasaki's disease. Retroviruses are so ubiquitous and such a frequent lab contaminant that they're the Sirens of the lab.
Trine Tsouderos: The heavy metal connection is especially poor. It comes from a study that found less mercury in the hair of children with autism and concluded that that was proof they had trouble excreting it. A dubious conclusion.
It's interesting that both the chronic fatigue syndrome/ME and autism communities seem to have picked up Trine Tsouderous and Dr. Paul Offit as enemies. I find it especially revealing that Dr. Offit doesn't even see fit to mention the epidemic retrovirus story which played out for decades in our nation's history, that of HIV-AIDS, a monkey retrovirus which somehow jumped species into the human population.
All of which brings me back to Unbroken.
After his plane crashed in the Pacific, Louis Zamperini, and two companions were adrift for forty-seven days. On the fortieth day at sea Louis heard the singing of angels and counted twenty-one of them in the clouds. His companions did not see them. Later he recalled praying that if the angels would save him he would dedicate his life to God.
About a week later they were picked up by a Japanese boat. He was taken to a POW camp of eight hundred prisoners where the sadistic commander declared him "prisoner #1" and set about a regular routine of beatings and humiliation. The camp commander was later declared one of the top ten Japanese war criminals.
Back in the United States, Louis got married, and tried to settle back into a normal life. Like many former POWs he was plagued by nightmares and flashbacks. He dreamed of finding the former camp commander who had abused him and killing him. Louis was drifting into alcoholism, getting into fights in bars, and was close to divorce.
As things were near the breaking point his wife encouraged him to go and see this charismatic preacher who had come to town, a very young Billy Graham. Although he didn't like Graham after first hearing him speak, he returned several times until one thought from Graham's sermon struck a chord.
Graham said that when observing the evil of the world you might want to consider a simple idea. That when God hides His face from the world so thoroughly we can't see it, we're called upon to demonstrate our true faith. Louis remembered his time on the raft, the singing of the angels, and realized that God had never left him.
When I consider all that has happened in both the autism and chronic fatigue syndrome/ME communities I often feel that God has thoroughly hidden His face from us. And yet I must consider what my response will be.
For Louis, turning his life to God made the nightmares go away, he was able to repair his marriage, he founded a camp for delinquent boys, and became known to all as an incorrigible optimist. He carried the Olympic torch through Los Angeles for the 1984 games, learned how to skateboard at the age of eighty, and even now well into his nineties enjoys good health.
And so I find myself faced with the dilemma of how to feel about people like Trine Tsouderous and Dr. Paul Offit who are harming so many lives. They carry a heavy burden for their actions and the war we wage on behalf of our children is just. But when the battle is won I want to let go of it. I want to be free of it all, just as Louis Zamperini freed himself from the demons of his war.
It's for this reason I carry only sadness for those who fight against us. They will live to see how wrong they have been. I honestly pray for their hearts to turn towards our children. Life passes quickly and none of us knows how long we may have. Louis even forgave the camp commander who beat him, although the commander refused to meet with him. I'm a stumbling pilgrim of faith and must confess that such forgiveness eludes me at the present time.
But I continue to consider the possibility and in doing so find I am less burdened by my woes.
What are you doing in your life so that you remain Unbroken?
Kent Heckenlively is a Contributing Editor to Age of Autism