The American College of Gastroenterology recently held its 2011 annual meeting, distributing various media releases on the newest findings in the field. One IBS-specific topic, a Mayo Clinic study on the relationship of cumulative trauma or stress on the development of IBS, has generated particular interest from the mainstream national media in the past week or so, prompting coverage by Forbes, Fox News, Time and USA Today, among others.
Any major research insights from a respected medical center like the Mayo Clinic are welcome, as is quality coverage from news sources outside of IBS websites or small health care publications. For those who are interested in public awareness and advocacy for IBS, these occasions are an opportunity waiting to be taken.
Extensive, national coverage in mainstream media doesn’t come along often. It is usually prompted by a well publicized research finding like this one or, earlier this year, Cedars Sinai’s work on the antibiotic Rifaximin, which is still considered a controversial potential treatment for small intestine bacterial overgrowth (SIBO) or IBS-D. Smaller regional and local sources, such as this report from the Pueblo Chieftain, a southern Colorado newspaper, appear more likely to run stories with basic information about IBS. Although this example mentions possible interventions at length, and refers to IFFGD, such stories frequently are not as detailed as this one, may have errors or may not offer any resources for further information. Outside the IBS community, veterans’ organizations and websites following the legislative process, public awareness of the new VA regulations making IBS and other functional GI disorders presumptively service-connected disabilities for Gulf War veterans or HR 2239, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act, is scant.
Most media stories on any subject tend to die down quickly, but as self-advocates, readers of this blog can continue the conversation with the media and others who follow it. This task is made easier by the Internet age. Sometimes family and friends may forward a relevant article to people with IBS in an attempt to be helpful. If the sender is receptive, proactive self-advocates can use this as a starting point for discussing our own experiences with IBS and educating others. What is good about the content, and what is not so good? Does the treatment or research being discussed seem to correlate with our individual experiences or not? Even if no one sends such an article, people with IBS can send articles to others themselves. We can write emails or letters to editors or use the comment sections on media websites to explain our reactions.
Working with the media to highlight our issues and needs doesn’t necessarily mean granting a personal interview. Sometimes it is very simple outreach. A few years ago, the IBS Impact founder encountered an online article riddled with factual errors, including confusion of irritable bowel syndrome and inflammatory bowel disease. A brief, polite email including a few links to correct information, was all it took to have the article promptly removed. The IBS Impact website and blog usually get some hits from intelligently left comments and links left periodically on media articles. For more extensive awareness efforts, IFFGD has several Reporter’s Guides that can be downloaded by anyone and passed along to a journalist.
By making other readers and journalists aware, through our presence, that the community of people affected by IBS is huge and diverse—that there are different perspectives and experiences, successes and failures with different interventions— makes it clear to others that IBS, of all conditions, cannot be reduced to the sound bite of the day. The more we, as a community, are willing to do this, the better those without IBS will understand the complexities many of us with IBS face physically, educationally, professionally and socially, and be more likely to support our efforts toward meaningful, productive change.