U.K. Researcher Studies the History of IBS and Why We Should Be Interested

December 24, 2011

The following interesting post appeared recently on the blog of the Wellcome Trust, a London-based organization that describes itself as a global charity focused on the history of medicine.

Irritable Bowel Syndrome: The History of a Modern Epidemic  

(edited to fix broken link. Thanks to alert readers for mentioning this.)

The author is Dr. Val Harrington, PhD, of the Centre for the History of Science, Technology and Medicine at the University of Manchester. Dr. Harrington received a Wellcome Trust grant for post-doctoral research in this area. Although the disorder currently known as IBS occurs worldwide and symptom clusters consistent with it appeared in medical literature well prior to the earliest time period of Dr. Harrington’s research, Dr. Harrington plans to focus on the most recent 50 years in the United Kingdom. According to the post, this is an intentional decision to bring some balance to a field that Dr. Harrington states has been primarily centered on research from the United States.

Dr. Harrington will use archival sources, as well as oral history from gastroenterologists, researchers, primary physicians and patient support groups to trace and delve into several themes. Part of the research will involve a case study of the IBS Network, formerly the Gut Trust, the national organization for irritable bowel syndrome in the U.K.

The vast majority of research on IBS thus far appears to have been of the medical model, focused on causes of IBS and how to treat it effectively. This is, of course, of major concern to many of us with IBS  who are not helped adequately by existing interventions. However, discussions of the historical and sociological aspects of IBS are also important and less recognized by people with IBS, medical professionals, policy makers and the general public alike. The founder of IBS Impact, in starting an advocacy and awareness-focused resource, was influenced and motivated by personal and professional experience in other health and disability advocacy communities in the U.S. The lessons that can be gleaned from our peers in those communities  are the philosophical beliefs that long term changes to “the system” for all people with IBS and others who support us require understanding IBS in its historical and sociological context as a phenomenon that affects society and requires the cooperation of many subsets of society to work toward scientific and social solutions. IBS is not always simply a personal medical problem; when moderate or severe, it can affect every aspect of an individual’s life and many aspects of the lives of those around the person with IBS. Multiplied by millions of people with IBS around any one nation, let alone the globe, it becomes society’s challenge.

Readers of this blog in any country, do take a look at Dr. Harrington’s fascinating comments. Specifically those in the U.K., also be on the alert for any future announcements within the U.K. from the University of Manchester, the Wellcome Trust, or the IBS Network or any related media coverage. Perhaps there will be opportunities for you to participate in this important research.


Representative Hinchey of New York Co-Sponsors HR 2239 for Functional Gastrointestinal and Motility Disorders

December 18, 2011

UPDATE: HR 2239 did not pass in the 112th Congress. In February 2013, the Act was reintroduced in the 113th Congress as HR 842. Please see the March 2, 2013 post or click on the HR 842 category on the blog sidebar for updated information.

According to THOMAS, the Library of Congress legislative database, prior to Congress adjourning for the holiday recess this past week, Representative Maurice Hinchey (D- NY-22) has signed on as a cosponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2011.

The 22nd Congressional District of New York is a large one that encompasses all or part of eight counties in the mid-Hudson Valley, the Catskills, the Southern Tier and the Finger Lakes regions,  namely, all of Sullivan and Ulster Counties and parts of Orange, Dutchess, Broome, Delaware, Tioga and Tompkins Counties. Some notable cities in this district are Middletown, Newburgh, Poughkeepsie, Binghamton and Ithaca.

According to various public sources, Representative Hinchey is a Navy veteran and member of the Appropriations Committee and Subcommittee on Defense, with a record of sponsoring or supporting other legislation concerning veterans and health care for veterans and service members. As discussed previously on this blog, veterans and service members deployed in the Persian Gulf region have been shown to be disproportionately affected by functional gastrointestinal disorders, of which IBS is the most common. If you are a constituent of Representative Hinchey, please take a few minutes to write or call him with your thanks for his support of HR 2239.

In officially supporting HR 2239, Representative Hinchey  joins the lead sponsor, Representative F. James Sensenbrenner, Jr. (R-WI-5) and co-sponsors, Representative James Moran (D-VA-8), Representative Peter Welch (D-VT), Representative Elton Gallegly (R-CA-24), and Representative Jesse Jackson, Jr. (D-IL-2) and Representative Tammy Baldwin, (D-WI-2). U.S. citizens residing in the districts of Representative Hinchey’s colleagues listed here,  please thank them as well.

According to the information on THOMAS, it appears that the bill is currently under consideration in the Subcommittee on Health. If you would like to see a list of the members of that Subcommittee, click here and scroll down to the fourth subcommittee listing.

Congressional representatives will return to Washington, DC  to begin the second session of the current Congress on January 17, 2012. U. S. citizens,  if your Member of Congress is not yet a co-sponsor of HR 2239 and you have not contacted him or her recently to ask for his or her support,  please see this previous post from July 6 for links to the bill and  more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a reply, do not hesitate to try again or to switch contact methods until you attract attention.

Your personal experiences as a person with IBS and/or other functional GI/motility disorders, or as a concerned family member, friend or colleague, are most effective in communicating to legislators and their staff that there are real human beings behind the statistics.

HR 2239 is bipartisan legislation (supported by members of both parties) and according to IFFGD discussions with IBS Impact,  is “revenue-neutral,” meaning that there will be no additional taxes or spending added to the current federal deficit if it is enacted. Discretionary funds are available at the National Institutes of Health to be allocated if Congress directs NIH, through this Act, that functional gastrointestinal and motility disorders are a priority. Congress will only do so if we, as a community, are able to show them the importance of the research, education and FDA coordination provided for in HR 2239.

It is IBS Impact’s understanding that HR 2239 will most likely not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 219 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 112th,  the necessary number of sponsor/cosponsors must be reached by December 2012. Beginning in January 2013, the Congressional membership will be different as a result of the upcoming 2012 elections. Thus, a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering cosponsors anew. While it is quite common for legislation of various sorts to take several Congresses to pass, our continuing advocacy now can increase awareness, build momentum and perhaps accelerate passage. It is in our hands.

Check back on this blog or join IBS Impact’s Yahoo discussion group for further updates on HR 2239 as they occur.


Online Clinical Trial: Impact of IBS on Social Life or Interpersonal Relationships

December 11, 2011

The Northwestern University Feinberg School of Medicine is seeking adults age 18 years and older with a diagnosis of Irritable Bowel Syndrome (IBS) to participate in a study evaluating patients’ social and interpersonal experiences.

Are you 18 years of age or older with a diagnosis of an IBS? The Center for Psychosocial Research in GI at Northwestern University Feinberg School of Medicine is conducting a research study to better understand the impact IBS may have on your social life or interpersonal relationships, including the role that the attitudes of others may have. This study involves completing several questionnaires about your illness and well-being and should take you about 45 minutes to complete. If you would like to participate, you may do so online by clicking this link:

https://www.surveymonkey.com/s/NUISIBS

Your information will be kept completely anonymous and participation is voluntary. If you have questions about this study, you may contact Dr. Tiffany Taft at ttaft@northwestern.edu.

IBS Impact’s blog posts for July 26,   August 17 , October 3 and October 28 also have information on current clinical trials and related resources.

A page specifically to list studies was recently added to the IBS Impact main site, and we welcome researchers in any country to contact us with information they would like to have publicized. Please use the contact links on the home page of the main site. Our research and links pages also contain general resources that may be of interest to those with IBS who would like to participate in research studies.

For readers who are interested in the topic of relationships with family and friends who do not have IBS, we have a dedicated section of the main website specifically to share with family and friends. The articles contained there were written especially for IBS Impact by each author. We are happy to consider new submissions for this section in order to reflect a broad range of experiences from IBSers and those close to them.


Additional Resources for December 6 Online Chat on IBS and Non-GI Symptoms

December 1, 2011

IBS Impact has been contacted directly by Olafur Palsson, PsyD of the University of North Carolina Center for Functional Gastrointestinal and Motility Disorders. Dr. Palsson is the primary organizer of the “Evening With the Experts” online chat series, and the presenter for the upcoming December online chat, as non-gastrointestinal symptoms associated with IBS are one of his areas of research at the Center.

He reports that for this month’s chat, rather than having the video presentation component first available during the  scheduled chat hours, as has been the past practice,  he will make it available on the chat page in advance, on the morning on December 6. He also plans to post a questionnaire on non-GI symptoms that is used in IBS research (the Recent Physical Symptoms Inventory), as an optional “self-test” that chat participants or others with IBS can complete if they wish in order to compare their own symptoms instantly to norms for others with IBS in general and people without IBS.

To reiterate, this free online chat will take place on Tuesday, December 6, 2011 from 8:00-10:00 p.m. Eastern time. Dr. Palsson’s video presentation will be shown first, followed by live chat with him for the remainder of the scheduled time. These events are not designed for diagnosis or treatment, but are opportunities to interact directly with leading clinicians and researchers in the field of functional gastrointestinal or motility disorders, such as Dr. Palsson, and to educate yourself on accurate, state of the science information regarding IBS or other FGIMDs. The chat page can be accessed by going to the UNC home page for the Center, and clicking on the chat icon at the far right of the lower row of icons.

Prior to December 6, the icon will link to the announcement for this chat and others scheduled for the near future. The symptom questionnaire and Dr. Palsson’s video are scheduled to be uploaded to the page on the morning of December 6. UNC online chat videos are generally 30-40 minutes long, so hopefully this will allow more interested people to view it at a time convenient to them.  That evening, about 10 minutes prior to the start of the scheduled chat, the icon will change to indicate when the online connection is active and participants may click to enter the chat.

For the previous announcement of the “IBS Beyond the Bowel” chat, see the November 28 post on this blog. For general information on the UNC chats, see the July 29 post. For more on IBS and non-GI symptoms or overlapping conditions, including a link to an article by Dr. Palsson and William E. Whitehead, PhD the co-director of the Center at UNC, please see the September 6 post.