Vaccines and Autism: A crisis of legitimacy?

photo-injectionWhat do you do when you are part of a movement, you pour your heart and soul into it, and then things start to fall apart? Like members of a religious cult the day after the world doesn’t end, eventually you have to move on. But it must be really tough. In the same way, it seems to many of us as though the vaccines-cause-autism groups are going to have to grapple with the hard truth soon. But are we silly to think that?

Years ago, organizations like the National Vaccine Information Center and SafeMinds put forth a hypothesis: that vaccines cause autism. They called for the research community to test it. Now, study after study after study after study after study after study has come out debunking any link between vaccines and autism. One of the biggest leaders in the anti-vaccine movement, Andrew Wakefield, has been disbarred and disgraced, having kicked the whole debacle off with a fraudulent scientific article in a high profile journal. Other medical experts who have lent support to anti-vaccine groups, like Dr. Mark Geier and his son David Geier,  have met similar fates. Not surprisingly, given the mountain of evidence against a link between vaccines and autism, the access of anti-vaccine groups to policy makers appears to be waning. And in the wake of falling vaccination rates, large measles epidemics have broken out in places like Swansea, demonstrating just why vaccines are so important. So what happens now? Will the members of anti-vaccine groups start to drift away? Or will the leadership abandon the vaccine-autism hypothesis and find something else to concentrate on, remain relevant somehow?

Last year, a really interesting article on exactly this question came out. It’s called The Legitimacy of Vaccine Critics: What is Left After the Autism Hypothesis? and it appeared in Journal of Health Politics, Policy and Law. The author, Anna Kirkland, wanted to know how NVIC and its supporters were responding to all of these blows to the organization’s legitimacy. Her focus was on the leadership. Why would they continue to hang on to the vaccine-autism hypothesis when it meant losing the respect of the research and policy-making worlds? Kirkland attended the 2009 NVIC meeting and gathered data about who was there and what they believed.

Activist parents turned out in a big way, of course. Parents started groups like NVIC and have  kept them going. A specialized group of health professionals and researchers were also in attendance. Some of the health providers practiced alternative medicine; others practiced traditional western medicine, but opposed state-mandated vaccinations on libertarian grounds. You might be wondering what kind of researchers were there. Apparently, they typically publish in non-peer reviewed journals, occupying a sort of shadow research-world. Nevertheless, NVIC members feel these health professionals and researchers lend credibility to the group. Donors, of course, were important attendees. NVIC donors come from the left and the right side of the political world, and many are big movers and shakers in the world of political fundraising. Finally, there was the media. Mothering magazine and the Huffington Post are apparently two sympathetic news sources for parents who choose not to vaccinate their kids. Kirkland argues that all of these constituents have joined together to create a world of internal legitimacy. The NVIC leadership needn’t change course (and in fact, it would have a very difficult time doing so), because its constituents still believe they’re on the right track. What many of us view as major setbacks to the vaccine-autism hypothesis haven’t phased the members. Want an example? Check out the part of the SafeMinds website that deals with Vaccines and Autism. It’s as if the authors are not privy to any of the recent research–or with what scientific studies can and cannot show.

I’m convinced that it’s probably hopeless to try and change the minds of hard-core vaccine critics with data. But it seems as though many new parents are probably on the fence about vaccinating. They want to do what is best for their children, and they’re not sure what that is. They try to do due diligence and research their options. Have all the studies debunking the vaccine-autism connection affected THEIR views? Apparently, as recently as a few years ago one in four Americans believed that vaccines cause autism. And between 2003 and 2008, the percentage of parents who refused or delayed vaccines for their small children rose from 22% to 39%. So I’m not getting the feeling that the results of these studies are having the effect that we’d like. What we think of as blows to the vaccine-autism hypothesis are not finding purchase in the general public.

Have all these setbacks had any effect on the popularity of vaccine critic groups? Since NVIC and SafeMinds are nonprofits, I tried to find their annual reports. In the world of Public Health, it’s usually very easy to find an organization’s annual reports, stretching back for years. Not so for these groups. I was able to find a 2011 annual report for NVIC, but that’s all. I looked up both groups on GuideStar, which collects information about non-profits’ financials, and found a little more information there. It turns out that the loss of external legitimacy (i.e. the evaporation of respect from the research community and from the health policy world) doesn’t seem to be hurting these groups financially. In 2011, NVIC raised over $800,000–more than twice what it raised in 2009.  SafeMinds has also raised more and more money in recent years. Fundraising might not be the best measure of support for these groups, since a few big donors could contribute large amounts and mask trends in rank and file membership. But NVIC reported that in 2011, 1 million people viewed their homepage. It doesn’t seem like they are hurting for supporters.

gradusatodayAs a scientist, reading about the inner workings of the vaccine criticism movement was pretty sobering. A lot of researchers have diligently carried out research on vaccines and autism, laboring under the delusion that their data will change people’s minds. Kirkland’s research (and the ongoing epidemics of preventable infectious diseases that are taking place in the U.S. and other high income countries) makes it clear that this isn’t likely to happen anytime soon. Many vaccine critics call for research into various vaccine-autism hypotheses, but they do not trust any mainstream biomedical researchers to perform the studies. If your study is funded by the NIH (as most of our studies are), your results are not going to be taken seriously by members of these groups. I think initially it made sense to investigate the vaccine-autism hypothesis. But at this point, wasting time and money demonstrating the same thing over and over again, in hopes of converting people who will never be convinced, doesn’t seem like a good use of resources.

It seems that just as the vaccine critic movement has lost legitimacy in the eyes of the research world, we researchers have lost legitimacy in the eyes of many parents, at least when it comes to the science and epidemiology of vaccines. Groups like Generation Rescue seem to be doing a better job at communicating with nervous parents (check out their PSA above). I hope that in the future, we can find a way to bridge these two camps in order to prevent additional unnecessary outbreaks of infections like measles and mumps.

The Rise and Fall of Morgellons

MORGELLONS USAIn 2004, frustrated mother Mary Leitao coined the term “Morgellons Disease.” The name came from a 17th century source that described feverish, French children whose backs would break out in stiff hairs. When the hairs sprouted, their coughs and convulsions would disappear.

Leitao’s story started in 2003, when her 2-year-old son, Drew, developed a sore near his lip. He pointed to it and said “bugs.” When Leitao examined it, she found a fiber inside. Soon there were more sores and more fibers–strange threads of all colors. Seeking answers, she began taking the toddler to doctor after doctor. The last doctor she saw, a specialist in Infectious Disease at Johns Hopkins, concluded that what Drew suffered from was a mother with Munchausen’s by proxy. Needless to say, she was not happy.

In 2004, she created a website detailing her son’s symptoms. By 2008,  over 11,000 people had registered on the site to tell their own stories. They, too, suffered from sores and odd fibers. But they added a litany of additional complaints as well: cognitive issues, fatigue, and muscle and joint pain were some common ones. Leitao also started a research foundation devoted to Morgellons. In 2006, it collected almost $30,000 to fund small research projects and promote awareness. Celebrities like Joni Mitchell revealed that they, too, suffered from Morgellons.

People with Morgellons were angry, and the website helped them organize. The typical doctor visit for someone with Morgellons went like this: They would book an appointment, usually with a dermatologist. When the day of the visit arrived, they would bring in a Ziploc bag filled with fibers they had collected from their sores. Often, they would also bring along information they had collected about Morgellons from the web. Presented with these patients, most doctors diagnosed some variant of delusional parasitosis (a disorder in which people believe that bugs are underneath their skin). Treatment for delusional parasitosis typically involves antipsychotics or other psychiatric meds. Not surprisingly, most patients were not happy with the response they were getting from doctors. Sufferers began to demand answers. They started calling the CDC, agitating for an investigation into Morgellons, and enlisted support from politicians like Hillary Clinton, Barack Obama, John McCain, Barbara Boxer, and Tom Harkin. Eventually the CDC bowed to pressure and agreed to research the disorder.

Now all of this may sound crazy. But some responses from bona fide scientists gave credibility to the idea that this disease wasn’t simply about delusions. Randy Wymore, at Oklahoma State university, got interested in Morgellons after reading about it online. People started sending him samples of fiber. He maintained that even though these shipments came from all over the U.S., the blue and red fibers they contained resembled one another. He passed 20 samples on to the forensics team in the Tulsa police department. The forensic lab reported that they were unable to match the chemical structure of the fibers to any of the hundreds in their database, and when they heated the fibers to the  highest temperature possible in their lab (700 degrees Fahrenheit), nothing happened. Wymore and his forensic colleagues were baffled. What could these unearthly fibers be? Wymore also referred some Morgellon contacts to a doctor at Oklahoma State named Rhonda Casey. She professed that she found the fibers embedded under the patients’ unbroken skin. Moreover, she felt the people she saw seemed genuinely ill, presenting with a host of neurological symptoms.

None of that stuff got published. But Leitao teamed up with some colleagues who specialized in treating Lyme Disease and wrote a paper on Morgellons that appeared in the American Journal of Clinical Dermatology. They reported that 79 of 80 Moregellons patients were infected with the bacterium responsible for Lyme disease, and hypothesized that Morgellons could be related. (It should be noted that long term sequelae of Lyme Disease are controversial in their own right.)

So what did the CDC investigation find? In a 4 year collaboration with Kaiser Permanente that cost $600,000, they identified 115 cases. Their analysis was published in PLoS ONE in 2012. The patients were primarily white, middle-aged females. Half of the hair samples tested came back positive for drugs like amphetamines and cocaine. The women presented with a number of neurological complaints (chronic fatigue, cognitive deficits, etc.). But not parasites or mycobacteria were detected in biopsies of their lesions. And those fibers? They appeared to come from cotton.

If this is true, how can we explain the former findings, the ones from the Tulsa PD, for example? What about those strange fibers that were heated to 700 degrees Fahrenheit and remained unscathed? The ones that didn’t match any known fiber? It seems as though they may have resulted from a strange day in the lab. They sort of defy belief, and it makes you wonder about the forensics team there.

After the CDC study was released, the furor surrounding Morgellons seems to have died down. The website Mary Leitao founded has shut down, and the Morgellons Research Foundation has been shuttered. Apparently Wymore and Leitao fell out, and Wymore started his own foundation at Oklahoma State. His research continues, and people who suffer from Morgellons can still register on his website. The Lyme Disease group also continues to publish papers on Morgellons, linking it to infection with spirochetes.

journal.pone.0029908.g004It’s interesting to look at Morgellons as a powerful example of an internent meme, a disease that exploded after a website was created and then began to wane a few years later when the tide of evidence turned against it. After reading about its history, I just ended up feeling terrible for the people involved, though. You can check out pictures of the lesions. Even if they are self-inflicted or the result of bug bites, they don’t look pleasant. One woman reported day after day of agony as her body released red fibers, culminating in a pink worm coming out of her eye and coughing up a fly. Another reported waking up in the psych ward multiple times and becoming addicted to cocaine, driven to desperation by her disease. Moregellons patients try crazy and expensive cures–liquid silver, diatomaceous earth, deworming medication meant for farm animals, high dose antibiotics. These are sad stories. Since we began with Mary Leitao’s tale, you may be wondering how her family is doing. After a while, she reported that her older children began to exhibit signs of Morgellons. Her teenage daughter quit going to school as a result. Since the CDC study, it appears that she has more or less bowed out of the Morgellons community. I hope this family is doing better.