Photosensitive epilepsy in the 2016 election

convention balloonsIn recent weeks photosensitive epilepsy received some media attention because of two developments in the 2016 presidential campaign. Who would have thought? While the public probably didn’t learn much about photosensitive seizures in either case, perhaps both situations contributed something to public awareness of seizures triggered by certain lighting effects and images…

Clinton’s blue sunglasses

After Hillary Clinton’s widely publicized medical emergency on September 11, various bloggers and political writers rushed to speculate about possible causes of the episode. Photos of Clinton taken that day showed her wearing sunglasses that appeared dark blue, and some people wondered whether the glasses provided a clue to an undisclosed medical condition.

Hillary Clinton attending September 11 ceremony in New York

Visits to this blog surged for several days. More than 95 percent of the nearly 24,000 visitors from September 11 – 13 read two of my prior posts about blue lenses that protect against visually induced seizures. A few readers questioned whether the sunglasses seen on Clinton were the type worn to prevent photosensitive seizures.

My answer was maybe yes, but probably not. Since photos of Clinton that day showed her wearing them outside during the day, they weren’t likely worn for seizure protection. Flickering light doesn’t generally trigger seizures outdoors in daylight and good weather—for flicker to occur there has to be an extreme contrast of light and darkness in rapid succession. It’s certainly possible to have photosensitive seizures triggered outside in daylight, in specific situations: sunlight reflected on a body of water, or a line of trees seen from a moving vehicle, where sunlight is broken up by trees alongside the road. But Clinton was not in those settings when wearing the glasses.

Seizure-inducing images tweeted by angry reader

In a separate election-related incident, the matter of photosensitive seizures was taken in a troubling direction. In response to articles he wrote critical of Donald Drumpf, Newsweek journalist Kurt Eichenwald received a menacing tweet from an unhappy reader that referred to Eichenwald’s epilepsy and included an embedded video of flashing images. When the video started, Eichenwald dropped his iPad before a seizure could develop.

It certainly wasn’t the first time seizure-inducing images were placed online for the purpose of triggering people with photosensitive epilepsy, but it’s the first instance I’m aware of that’s tied to this rancorous political season. Criminal defense attorney Scott Greenfield claimed in his blog that the episode qualifies as an attempted assault. “Yes, even Twitter can be used to commit an assault, regardless of whether Eichenwald was a victim,” he wrote.

For more on the legal and technology issues raised by the tweet to Eichenwald, check out this Future Tense article, in which UC Davis law professor Elizabeth Joh concludes, “…the existing tools of criminal law probably do address a tweet likely intended to harm its recipient or to create a reasonable apprehension of fear in him.” But she adds, “That doesn’t speak to the likelihood of prosecuting the troll, which may be low.”


Yes, video games and the reviews are “broken”

review-iconIt’s no secret that the relationship between powerful game publishers and the press has a long history of conflict of interest. To stay in the good graces of game studios to ensure continued early, confidential access to forthcoming products, it’s in game  reviewers’ interest–and the interest of the outlets where they write–to write favorable reviews.

Game critic Jason Evangelho stepped forward last week in Forbes  to declare that both video games and the way they are reviewed by industry press are broken. He called on his colleagues in the reviewing business to stop running reviews that primarily serve their respective sites and the game publishers. “Remember who reviews are for,” he admonished. They’re for consumers who count on reviews to help them decide whether to spend their money on specific games.

Evangelho pointed out how reviewers are not doing their jobs properly: “…the gaming press is shielding your eyes from serious issues,” he wrote. “If we want fewer games to launch broken, we have to hold publishers accountable.” Jason admits he’s guilty of the reviewing practices he feels need to change. “I’m not perfect, but I’m trying my best to course-correct and do what’s right for the industry and especially for its consumers.” Jason, I so totally agree…even though you aren’t talking about the seizures that games can provoke.

What he’s really getting at

Jason’s particular beef is that publishers are increasingly releasing games before they’re fully functional, and that reviewers turn a blind eye to this practice. Reviewers don’t penalize incomplete products in their ratings but instead rate the game as though all the features are already in place. This is routinely done even performance suffers due to inadequate server capacity, or some features are still missing or aren’t working right at product release. Readers are then misled by reviews that give the publishers a “pass” on missing functionality.

He then calls on readers to speak out on the review process:

“If we want fewer games to launch broken, we have to hold publishers accountable. But that first step absolutely starts with me, and with my fellow critics in the game industry. And you need to tell us that’s what you want. Ultimately, the games and the coverage of games is done for you. So wield the power you have and make your voice heard.” 

So, in a nutshell: studios should stop lifting the embargo the day before product release and should stop releasing games before they’re ready, news outlets should wait to run reviews until their reviewers can evaluate the same product version that users receive, reviewers should call out missing features and rate games accordingly, and users need to speak up about the status quo.

Kudos to Jason, especially for calling out the lack of candor by reviewers due to their focus on priorities other than their readers. Of course, in so doing, Jason’s piece brings to mind other ways that reviewers could help and advocate for their readers, if they chose.

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Reviewers could alert consumers to games likely to provoke seizures, while signalling to publishers that this issue deserves their attention.

Tell reviewers you want them to assess games for seizure risk

If you agree that game reviewers should be more accountable to their readers, more responsible and more cognizant of their potential to influence publishers, then why not urge reviewers to address the seizure issue? It wasn’t what Jason was asking readers to do — but it’s all part of better serving readers. Certainly reviewers could influence the industry by writing about video game seizures and thereby holding publishers accountable.

I responded to the Forbes piece, commenting that consumer product reviews should address product safety issues. Here’s what I wrote (with a few minor edits):

Holding publishers responsible goes further than what you’ve described. Responsible reviewing for any consumer product should consider basic safety issues, and this has never been the case in video game reviews. We don’t expect consumers to test product safety, but in the case of video games, reviewers have left crash-safety testing to the consumer.

Many games expose consumers to a serious health hazard: seizures–many of them undetected— provoked by excessive flash, but game reviews fail to identify those games with a higher likelihood of inducing them.  It would be very beneficial to readers if games were evaluated on this risk. Applications exist that scan images to find those with the potential to provoke seizures.

For more than 30 years game manufacturers have been acknowledging the seizure risk by routinely slapping a warning on their games. This protects the studios from legal action and allows them to continue producing images that can be a serious health threat. Including seizure risk in reviewers’ rating criteria would certainly encourage game developers to adhere to seizure reduction guidelines established for visual media.

Not every game contains image sequences that could provoke a seizure. But since all games carry the seizure warning, those consumers who know about the risk have no way to know before using/buying whether a particular game contains images likely to cause them a problem.

Regrettably, most consumers still have little awareness of the seizure risk from flashing graphics or that regardless of whether there’s a seizure history. People with this genetic vulnerability (photosensitive epilepsy) typically don’t realize they need to be cautious around particular visual stimuli, that is until they experience a seizure that’s noticeable enough to be identified. Most people don’t know—I certainly didn’t—that seizures don’t always look like a big event.

Seizures can go on for years before being identified. Certain populations—kids with ADHD or autism in particular—are at higher risk of seizures, and the symptoms caused by unidentified seizures in these kids can exacerbate and hide behind existing behavioral difficulties. Nobody is holding publishers accountable.

Perhaps the reviewing community will show some interest in the visual safety issue in the future…Anyone else want to weigh in with Jason on this? He’s reachable on Twitter and Facebook.


Epilepsy Action Tweet protects Twitterverse

Epilepsy Action Twitter 2

Fantastic what Epilepsy Action accomplished the other day with one tweet! The UK-based epilepsy advocacy group addressed a Tweet to Twitter UK asking for removal of 2 video advertisements with quickly changing colors that had the appeared as flashing images. Within an hour Twitter UK responded graciously that it had deleted the offending ads.   

A major bonus–the exchange resulted in news stories in dozens of media outlets, including the Los Angeles Times, Yahoo TechFortune, and the BBC News, raising awareness of the problem and showing Twitter UK as a responsive corporation. 

Epilepsy Action followed up with gracious words, too:

Epilepsy Action Twitter 3

Using the same Twitter strategy, Epilepsy Action succeeded again yesterday in getting an unsafe ad removed by media giant Virgin Media. (See Twitter exchange further down.) For some time I have been admiring Epilepsy Action’s diligence regarding photosensitive epilepsy awareness and their outreach to organizations whose products/services place the public at unnecessary risk of seizures.

Why don’t we see this kind of advocacy in the US?

  • It’s not a priority of US epilepsy advocacy organizations to proactively protect the public from seizure-inducing images.
  • Unlike the UK, we have no regulations barring images that could trigger seizures. In the UK both online and broadcast advertising are bound by the following rule:

“Marketers must take particular care not to include in their marketing communications visual effects or techniques that are likely to adversely affect members of the public with photosensitive epilepsy.”

  • Broadcast TV in the UK is governed by a rule that, in addition to protecting against seizure-inducing content, frequently reminds the public of the risk of photosensitive seizures. No equivalent reminder exists here that raises awareness among the entire public of photosensitive epilepsy:

“Television broadcasters must take precautions to maintain a low level of risk to viewers who have photosensitive epilepsy. Where it is not reasonably practicable…and where broadcasters can demonstrate that the broadcasting of flashing lights and/or patterns is editorially justified, viewers should be given an adequate verbal and also, if appropriate, text warning at the start of the programme or programme item.”

  • Because the public is often reminded of the potential for images provoking seizures, and because the government has chosen to enact regulation of moving images, it’s not an out-of-the-ordinary event for people to notice and report problem images.

Could individuals use Twitter to ask video game companies to remove potentially harmful images?

It certainly seems like something we should try. On the other hand, there are some major differences between reporting seizure-triggering online ads and bringing seizure-triggering images in a video game to the developer’s attention. For starters:

  • Removing/altering problem sequences from a video game is much more technically complex than removing or fixing a seconds-long video ad from an online platform. Many popular video games are built over a period of years, using huge amounts of code, and allowing lots of variation in what images might appear onscreen, depending on how the game is played.
  • An individual asking for a modification from a corporation doesn’t carry nearly the same weight as an organization such as the Epilepsy Foundation.
  • Consumers’ communication about specific games typically occurs within members-only user forums that aren’t seen by the general public–thus no pressure from outside the user community.
  • These user forums can be quite hostile when the topic of seizures comes up. Here’s one quote from within the gaming community.

“…(also, if you have epilepsy (knowingly), and you try to play a videogame, you don’t deserve a seizure, you deserve to be hit by a truck, and if you discover epilepsy when playing a game, that just means you have a very very sucky medical condition, its not like the game GAVE you epilepsy, just the seizure associated with your condition, its not the games fault, blame the DNA, DAMN DNA!)”

So…I will try contacting some game companies on their official Twitter page to let them know their game has failed the Harding Flash and Pattern Analyzer in my tests. Has anyone reading this tried to contact a video game company to report that a game triggered a seizure? I will let you know how I do!!

[Update: February 8, 2016] So I forgot to post an update. I tried tweeting 8 times to various game companies about their game having seizure-provoking images. No response…and assume that’s enough evidence to prove my point that some advocacy organization with name recognition needs to take on the issue.


Researchers on a mission ignore seizure studies

Cherry-Picking-400x300A big reason seizures induced by video games aren’t more widely known is the absence of new research findings about the problem. There continues to be a lot of misinformation out there, and meanwhile we get farther away in time from the studies showing there’s good reason to take the seizure risk very seriously. Without announcements of new results or a concerted education effort by advocacy organizations, it’s tough to keep this issue alive for the public. When today’s researchers of video games miss the opportunity to remind readers of the seizure studies, they perpetuate the public’s disregard for the seizure risk. Here’s why this happens:

  1. The research showing video games can trigger seizures is old news! Many studies on video games and photosensitive epilepsy have already been published, beginning in the early 1980s. The findings and methods have been refined over time, but the results have been fairly consistent. Since there wasn’t much controversy about the studies, the research community has largely moved on from what was already considered a niche subject. More recent studies by these same specialists in photosensitive epilepsy aren’t the type to be appreciated outside the scientific community: research methdologies, specific genes, and the place of reflex seizures in the spectrum of seizure disorders. Not very newsworthy for the general public.
  2. Most studies today on the effects video game use are about long-term influence on skills, behavior, and attitudes, and on their use in education and health-related applications. These studies are typically done by social scientists, who in general are not including medical issues in their analyses. Studies like this are looking at a different body of previous work–studies done by other social scientists–and the authors may not be familiar with the photosensitive epilepsy research.
  3. There’s a real backlash these days against studies warning about negative influences of video games. Video games are clearly here to stay; researchers and game developers are eager to demonstrate games’ potential for good. Unfortunately, people who write about video games’ beneficial effects and purposeful applications tend to treat with suspicion (or worse) any earlier studies showing problems attributed to games. Or the seizure issue is omitted altogether from summaries of previous findings.

Seizure research swept under the rug

axe grindingPeople who grew up using computers and video games from an early age now comprise a sizeable segment of the research community. Many of them feel there has been a consistently negative bias in studies about video games and they are eager to show another perspective. Here’s an example. Prof. Mark Griffiths in the UK wrote a piece last year entitled, “Video Games Are Good for Your Brain – Here’s Why” that he begins this way:

“Whether playing video games has negative effects is something that has been debated for 30 years, in much the same way that rock and roll, television, and even the novel faced much the same criticisms in their time. Purported negative effects such as addiction, increased aggression, and various health consequences such as obesity and repetitive strain injuries tend to get far more media coverage than the positives.”

Prof. Griffiths had greater difficulty getting his own papers published when they showed positive positive influences of games than when they addressed difficulties such as video game addiction. The article points out positive outcomes using video games for social engagement, therapeutic applications, and education, and then concludes with this irresponsibly inaccurate statement:

What’s…clear from the scientific literature is that the negative consequences of playing almost always involve people that are excessive video game players. There is little evidence of serious acute adverse effects on health from moderate play.” [However, there is extensive evidence of seizures–a pretty serious acute adverse effect–that can occur even with very brief exposure. — JS]

Social scientists pick and choose

Earlier this year a piece titled “Video games can be good for you, new research says” (no link because it’s behind a pay wall) appeared in the Chicago Tribune. The reporter opens the piece by putting video game research into historical context.

“Researchers have done thousands of studies on gaming since the 1980s, often with unmistakably negative results. Some associated video games with an increased risk of epileptic seizures, while others cautioned that the games could provoke dangerously elevated heart rates. Many studies also linked violent games to aggression and anti-social behavior.”

to tell the truthThen the article turns to a psychology professor whose new study forms the basis of the article. Prof. Christopher Ferguson has done dozens of studies on effects of video game use. Prof. Ferguson, who’s found that violent video games do not contribute to societal aggression, reasons that early research into any new technology is often flawed. Studies that aim to find negative effects get funded and promoted, while those with more benign findings are unpublished and forgotten, he explains.

“When a new generation of scholars more familiar with the technology comes along, different results often appear — and that’s what is happening with gaming. We’re just not seeing the kind of data emerge that would support the techno-panic that was common in earlier years.”  

There is no further mention in the article of studies about the video game seizure problem–as if all the video game seizure research was part of the so-called “techno-panic.”

I contacted the Tribune reporter to point out that the seizure problem is for real and hasn’t gone away. He said he was aware of this fact and was interested in writing about it sometime. However, without a piece of news tied to it, such as results from a new study, other stories are obviously much more compelling for a newspaper to cover.

P.S. I’m on a mission, too 

I’ve chosen to focus on the seizure risk from exposure to video games, and on the after-effects these seizures–even small ones–can have. If you’ve read other posts of mine, you’re aware I believe there is still some research on video game seizures that needs to be done and it’s on issues that could produce newsworthy results:

  • the higher risk of visually induced seizures in specific populations, such as young people with autism. One small, unpublished study found 25 percent of young people over age 15 with autism spectrum disorders are photosensitive, but more study is needed.
  • the real prevalence of photosensitive seizures, which researchers admit are probably underdiagnosed because they aren’t noticed or reported.

So, what’s new on the seizure thing?

newspaper stackNot much, unfortunately.

There are many reasons for low awareness of the seizures induced by video games, but today I want to focus on a big one: the lack of current research.

Without new research or a concerted outreach effort by advocacy organizations, it’s tough to keep the issue alive in the media. New research means new findings to announce. The press isn’t likely to cover a subject that’s producing no news.

It’s not as if conclusive studies don’t exist on seizures triggered by video games. Many clinical studies on video games as a cause of photosensitive seizures have been published, beginning in the early 1980s. The findings and methods have been refined over time, but the results have been fairly consistent and haven’t stirred up controversy. In fact, photosensitive epilepsy has always been considered a niche disorder and an out-of-the-way area of research. What’s left to prove?

Today’s studies involving video games are all about how games influence behavior and attitudes. Social scientists are investigating questions such as how much video games affect cognitive performance, memory, physical response time, behavior, and attitudes about violence. The results of ongoing studies like this—unlike the old news about seizures triggered by video games–frequently appear in the news media, keep the issues alive, and are topics of public debate.

The last time significant research findings were published and the advocacy community acted upon this public health problem was in 2005, when consensus papers on photosensitive seizures were published and the Epilepsy Foundation acted by issuing new guidelines for families on preventing them. Very little has occurred or has been published since then to keep the issue before the American public. (One exception: in 2008 the Epilepsy Foundation publicly responded to an Internet attack that placed seizure-inducing images on its website.)

Here’s an example of how things work in the news business.

Last month a pretty balanced piece titled “Video games can be good for you, studies say” appeared in the Chicago Tribune. The reporter, John Keilman, begins the piece by putting video game research into historical context.

Researchers have done thousands of studies on gaming since the 1980s, often with unmistakably negative results. Some associated video games with an increased risk of epileptic seizures, while others cautioned that the games could provoke dangerously elevated heart rates. Many studies also linked violent games to aggression and anti-social behavior.

Then the article turns to Christopher Ferguson, a psychology professor at Florida’s Stetson University who’s found positive contributions of video games:

Ferguson has done dozens of studies on the subject and has consistently found that violent video games do not contribute to societal aggression. One recent project actually concluded that some children who play violent games are less likely than others to act like bullies. [That’s pretty newsworthy!–JS] Ferguson said early research into any new technology is often flawed. Studies that aim to find negative effects get funded and promoted, while those with more benign findings are unpublished and forgotten, he said. When a new generation of scholars more familiar with the technology comes along, different results often appear — and that’s what is happening with gaming, he said. “We’re just not seeing the kind of data emerge that would support the techno-panic that was common in earlier years,” he said.

Although Keilman balanced Ferguson’s remarks with quotes from another researcher, who’s quite skeptical about recent positive findings, there is no further mention in the article of studies about the seizure problem. Readers can easily assume that—as with early studies linking violent games to violent behavior—all the research showing video games can trigger seizures stems from the “negative attitude by technophobes” in the early days of gaming. If one follows Prof. Ferguson’s line of thinking, one could expect that newer studies—if there are any–on seizures and games can be expected to reverse the earlier studies.

I contacted Keilman to point out that the seizure problem hasn’t gone away. He responded that he was aware of this and was interested in writing about it sometime.  He also mentioned continuing research on the seizure issue. I think he’d be interested in writing about the subject if there was some new study that’s newsworthy, but there simply isn’t.

In the absence of new research, or a Pokémon-type episode, it’s hard for journalists to write about a topic that just isn’t news.

 


Toddlers with iPads

Darren Murtha Design’s Shape Builder was one of five iPad apps recommended to parents in a New York Times column.

A piece last week in the Wall Street Journal questioned whether there might be effects on brain development when really young kids play with iPads and similar devices. The answer is simply:  nobody knows. The article points out that

…In many ways, the average toddler using an iPad is a guinea pig. While the iPad went on sale two years ago, rigorous, scientific studies of how such a device affects the development of young children typically take three to five years.” 

and it quotes a couple of experts:

“‘There is ‘little research on the impact of technology like this on kids,’ says Dimitri Christakis, director of the Center for Child Health, Behavior and Development at Seattle Children’s Hospital….”

 “’Unfortunately a lot of the real-life experimentation is going to be done by parents who now have young kids,’ says Glenda Revelle, associate professor of human development and family sciences at the University of Arkansas.”

The article was written by Ben Worthen, a father who was concerned about the trance-like state he and his wife observed in their 4-year-old son playing with an iPad. Worthen notes that it soon became a battle every night when his son was asked to turn off the iPad.

“’It gives him a dopamine squirt,’” says Michael Rich, director of the Center on Media and Child Health at Children’s Hospital in Boston, referring to the brain chemical often associated with pleasure. Many apps for kids are designed to stimulate dopamine releases—hence encouraging a child to keep playing—by offering rewards or exciting visuals at unpredictable times.”

Some people say that after all the dopamine rewards from video games, it’s not as easy to pay attention to activities that don’t deliver regular bursts of dopamine. And while many parents are pleased with the way educational apps appear to help with early learning, they also speak of their kids’ immersion for hours at a time. When I think of toddlers, it’s hard to come up with any other activities that hold their attention for that length of time. Maybe the toddler brain isn’t designed to focus for so long on one thing at a time when they’re exploring the world around them?

A few small studies have shown gains in vocabulary in young kids who used educational apps. Some researchers think the iPad may not have the same neurological effects as video games and TV, which the American Academy of Pediatrics has cautioned can be harmful in very young children, whose brain development is at a critical stage in their first few years. But the technology is so new, there aren’t any such studies yet.

We don’t really know what effect major doses of screen time has on older kids, either, or on adults. Kids growing up today with so much fast-paced visual technology from such an early age may display differences in brain development in ways we haven’t uncovered yet. The issue is much broader and more complex than whether or not these young brains are experiencing seizures brought on by video action. There could well be subtle changes in brain function that wouldn’t register as seizures but that affect processing nonetheless. More on that in my next post.

In the meantime I encourage you to check out the article that started off the discussion, with accompanying video and audio reports.


Are games the trigger or the cause of seizures? Does it matter which?


Photo by Ron Marshall. Some rights reserved. http://www.flickr.com/photos/ronmarshall/

Online forums open to all comers have a way of passing along bad information. For example, in response to a question about whether video games can cause tremors and muscle spasms that could be seizures, the following was recently posted:

“Computer games don’t cause seizures; they simply contain triggers that people with the condition photosensitive epilepsy (seizures that occur more frequently in reaction to certain patterns of light flashes) who already have epilepsy which [sic] causes them to have seizures. You cannot “get” seizures from playing video games…”

The responder is so intent on deflecting liability for seizures away from video games that a meaningless exercise in semantics is being played about whether the games cause seizures. C’mon. The question was whether the gamer could be having seizures due to video games. The answer is a definite yes. This was not a question along the lines of “Do cigarettes cause cancer?” Distinguishing between seizure triggers and their intrinsic causes fails to answer the question properly.

This poster’s response may have been influenced by a 30-second video about video game seizures, made by an internal medicine specialist who’s made clips about a variety of medical issues. Answering the question of whether playing video games can cause seizures, the doctor, Lisa Bernstein, MD, uses this same approach of making an unnecessary distinction between trigger and cause, saying:

“Video games cannot cause seizures. What we do know, however, is that people who are particularly prone to seizures, who have something called photosensitive epilepsy, have their seizures brought on by flickering or flashing lights often found in video games. So only these particular patients are at risk for having seizures with video game. Everyone else should be fairly safe playing them.”

Let’s examine Dr. Bernstein’s statements. We already know there’s a problem with the first sentence. But there are other problems as well:

  • Suggesting that nobody except those with photosensitive epilepsy needs to worry about video game seizures encourages a false sense of security. It presumes that anyone who is photosensitive already is aware he/she has the condition. Photosensitive seizures commonly occur in people who have never had a seizure before. These people are unlikely to have been tested for photosensitivity and are therefore completely unaware they’ve inherited this condition. When hundreds of Japanese children had seizures in 1997 during a Pokemon cartoon broadcast, only one fourth had ever had a seizure previously.
  • The prevalence of photosensitivity peaks in adolescence. Thus someone who’s played games for years as a child, while the inherited photosensitivity trait is still hidden, has no expectation that the condition is present and merely dormant. The trait is apparently activated by hormonal changes in adolescence.  From that point on it will declare itself only in the presence of certain visual triggers, and sometimes, only under certain circumstances such as sleep deprivation or alcohol consumption. A history of no visually induced seizures is no guarantee of a future free of them.
  • Her answer suggests that photosensitive seizures happen only to people who are “particularly prone to seizures.” A person whose seizures are triggered exclusively by specific visual stimuli is not necessarily particularly prone to seizures. For comparison, consider nonphotosensitive individuals with epilepsy who may have many seizures every day with no known trigger.

In August I emailed my concerns about the clip to Dr. Bernstein and VideoMD.com, the site that hosts health-related videos uploaded directly by Dr. Bernstein and other physicians. Although I didn’t hear back directly, I can no longer find this clip at www.videomd.com. However, the video has been picked up by other sites and lives on.