Gut Week in the United Kingdom and Ireland June 25-July 1, 2012

June 29, 2012

UPDATE: 08/03/2014 The most recent version of this post can be found at August 3, 2014.

This week is National Gut Week in the U.K. and neighboring Ireland, and a good time to alert readers in those countries to some of the available resources for irritable bowel syndrome and other gastrointestinal conditions in that region of the world.

The official site for Gut Week, sponsored by various charities, organizations and companies, provides some general information on the website and links to other gastrointestinal resources It also offers information packets, including some articles from leading professionals in the U.K. and Ireland, available in hard copy by request or by download to people who provide contact information from within the U.K. or Ireland. There are also contests on the site in which to participate during this week.

The IBS Network, formerly The Gut Trust, in Sheffield is the national charity for irritable bowel syndrome in the U.K. For a modest annual fee, members get access to a telephone helpline, support groups, a magazine and other written information, news about advocacy and research, an online self-care tool, and a “Can’t Wait” card meant to assist people with IBS in quickly communicating to others the need for access to a public toilet. The IBS Network has also just launched a new online community that it is encouraging people to try out.

As noted previously on this blog, some people with IBS in the U.K. have found RADAR keys, meant to unlock disability-accessible public toilets, useful. They are so  named for the Royal Association for Disability Rights, which has now merged with other organizations to form Disability U.K., located in London.  In addition to selling RADAR keys and guides and smartphone apps of locations where they can be used, Disability U.K. provides a wide range of information and resources for people with all types of disabilities and medical conditions, including general advice on legal protections, benefits and other disability advocacy within the U.K. Many of these apply to IBS.

It is IBS Impact’s understanding that experiences with people with IBS receiving disability benefits within the U.K. or Ireland vary greatly. Some people are able to successfully obtain them, but others not. The following government websites have useful information on benefits and other disability-related topics: Directgov disability information in the U.K. and Citizens Information Board disability information in Ireland.

For evidence-based guidelines on treatment of IBS, see the British Society of Gastroenterology (2007), the National Institute for Health and Clinical Excellence (2008)  and the British Dietetic Association (2012). The South Manchester Functional Bowel Service, headed by Peter Whorwell, MD also has a website of information on IBS, gut-directed hypnotherapy, on which Dr. Whorwell is an international authority and pioneer, and the research studies and clinical care offered at his service.

Michael Mahoney, clinical hypnotherapist in Cheshire, has different, home-based CD/MP3  hypnotherapy protocols from Dr. Whorwell’s, which many adults and children with IBS or functional abdominal pain (also known as recurrent abdominal pain)  in various countries have found helpful, as well as an audio CD designed to explain IBS to family and friends. An article by Mike can be found on the family and friends page of the IBS Impact main site. A link to details on his IBS Audio 100 program for adults can be found on the links page, and a link to details on the IBS Audio 60 program for children on the children’s page.

Also on IBS Impact’s family and friends page is an an article by Sophie Lee, an adult with IBS in the U.K. who has had IBS since childhood. Sophie offered this excerpt from her published memoir to IBS Impact in the hope of increasing awareness of IBS. Some readers may be aware that she also owns IBS Tales, a website for people with IBS to share their successes and disappointments. It draws readers internationally, but as a site originating in the U.K., has more of a U.K. focus. Please be aware that because the site is composed of personal experiences with conventional, complementary and self-help treatment approaches contributed by many people, certain information may or may not be scientifically accurate, and in any case, individual experiences will vary. IBS Impact strongly encourages positive peer support and sharing of reputable information and personal experiences by people with IBS, but does not focus on treatment advice. We urge readers to also consult the evidence-based resources given in this post and the individual advice of their own health care providers so that they can make the fully informed choices best for their own situations.

Julie Thompson, a registered dietician who works in the National Health Service and an IBS Network trustee, has a blog, Clinical Alimentary, that addresses digestive health and nutrition and the scientific evidence behind various topics of interest. Finally, readers may be interested in this December 24, 2011 post by IBS Impact on fascinating research supported by the Wellcome Trust on the history of IBS in the U.K.

This post is not intended to be an exhaustive list of every resource available in the United Kingdom or Ireland for IBS, but a thoughtful starting point. Readers are encouraged to comment on this post or through the contact links on the IBS Impact main website if there are suggestions of topics or resources or advocacy concerns that might be addressed in the future.

Clinical Trial: Furiex Pharmaceuticals Investigational Medication for IBS-D

June 20, 2012

The details of this study were obtained from the websites of IFFGD,  Furiex Pharmaceuticals and Clinical (52 week trial, 26 week trial)

Furiex Pharmaceuticals is currently recruiting volunteers to evaluate the effectiveness, safety, and tolerability of JNJ-27018966 (the Investigational drug) compared with an inactive placebo in patients with irritable bowel syndrome (IBS) with the subtype of diarrhea.” The study is open to “Eligible male and female patients aged 18 to 80 years with a diagnosis of irritable bowel syndrome (IBS) with a subtype of diarrhea.”  For further information, call  1-877-345-2145.

This appears to be two simultaneous Phase III trials of the medication also known as MuDelta. The study listings on Clinical, linked above, currently show over 170 study sites throughout the United States, and the contact number above is a U.S. toll-free number. However, the Furiex press release, also linked here, indicates that study sites in Canada and the United Kingdom will also be available at an unspecified time. Please see the Clinical listings for specific U.S. sites and additional eligibility criteria, or contact Furiex directly.

Previous posts on open clinical trials for IBS can be found by clicking the clinical trials category in the blog archives on the upper right sidebar of this blog. We also have a page for IBS studies on the main IBS Impact site.The research and links pages and the July 26, 2011 post provide additional general resources.

We welcome researchers affiliated with academic, medical or pharmaceutical entities, or reputable organizations representing IBS or related or commonly overlapping conditions, to contact us directly with additional studies they wish to be considered for posting. Contact links for the founder/listowner and the webmaster can be found on the home page of the main IBS Impact website.

IBS Impact makes these study announcements available for general information,  and encourages its members and site visitors to make their own individual, informed choices about their potential participation in any study.  IBS Impact, as an entity, is not directly affiliated with any research sponsor and receives no funding from any source for studies or links we feature on this blog, the main site or social media.

Los Angeles Times Article Linking IBS to Intestinal Fungi is Inaccurate

June 15, 2012

UPDATE  06/20/12: The Los Angeles Times corrected its headline as of June 15.

On June 8, 2012, the Los Angeles Times published an article entitled “Irritable Bowel, Ulcerative Colitis Linked to Intestinal Fungi” that is now making its way around various IBS forums. Ulcerative colitis is one form of inflammatory bowel disease (IBD), which is not the same as irritable bowel syndrome (IBS). The author incorrectly refers to “irritable bowel disease,” and the symptoms and prevalence described in his article are consistent with inflammatory bowel disease, not IBS. IBS Impact is not able to comment at this time as to whether the reported claims about intestinal fungi are scientifically credible in regard to inflammatory bowel disease. However, this theory has no known connection to irritable bowel syndrome. This blog previously discussed the differences between IBS and IBD in the August 31, 2011 post.

While this blatant, basic confusion between IBS and IBD is very common in the media and public perception, it is especially disappointing and unacceptable in a major U.S. national newspaper such as the Los Angeles Times. Several medical centers in the Los Angeles area are actively engaged in IBS research, about which the Times has accurately reported in the past.  The UCLA Center for Neurobiology of Stress, in particular, is renowned for its expertise in various complex chronic pain conditions known to have a neurological basis, as IBS does.  Many of the Center’s interdisciplinary programs and subunits provide clinical care to adults and children with IBS and/or conduct cutting edge research directly relevant to IBS.

IBS is the most common functional gastrointestinal disorder and one of the most common chronic health conditions of any type worldwide, affecting anywhere from 30-60 million Americans alone, depending on the source. It is not an obscure medical condition and the IBS community and the general public deserve accurate reporting. IBS Impact asks that the Los Angeles Times correct its error, and hopes that the newspaper and its colleagues at other media outlets will do more due diligence in regard to IBS in the future.

We also encourage people with IBS and our supporters to regard sources of information carefully and critically, educate themselves about the evidence-based science of IBS as it is currently understood, and to correct others when errors or misrepresentations occur. For more on self-advocacy with the media, see the November 6, 2011  post. For more reputable information and resources on IBS see the IBS Impact main website.

IFFGD/DHA Congressional Call-In Day for IBS/Functional GI Research is June 12, 2012

June 5, 2012

The International Foundation for Functional Gastrointestinal Disorders and its grassroots arm, the Digestive Health Alliance, have scheduled next Tuesday, June 12, 2012 as Congressional Call-In Day for this year. U.S. citizens with IBS and/or other functional GI disorders and their families and friends are all urged to contact their members of the federal House of Representatives by phone or email on the same day to urge support of HR 2239, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act, which has been under consideration in Congress since June 2011. The coordination of many voices on the same time will create a more unified and noticeable impact on ongoing advocacy efforts.

HR 2239 is currently supported by 11 members of the House of Representatives from both political parties and 8 states. They are 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), Representative Tammy Baldwin, (D-WI-2), Representative Maurice Hinchey (D-NY-22), Representative Nan Hayworth (R-NY-19), Representative Gwen Moore (D-WI-4), Representative Ed Perlmutter (D-CO-7) and Representative David Price (D-NC-4).

HR 2239 needs the support of 218 members, a simple majority of the House, by December 2012 to pass during this Congressional session. If it does not,  because the upcoming 2012 elections will change the composition of legislators, the new Congress being seated in 2013 will have to reintroduce the Act under a new bill number and the functional GI community will need to begin the process of gathering co-sponsors anew. While it is not unusual for any type of legislation to require several years and multiple Congresses to pass, the IBS/functional GI disorders community’s consistent public advocacy can raise awareness and perhaps accelerate the process. It is IBS Impact’s understanding that HR 2239 is  “revenue neutral” legislation, meaning that no new spending or taxes will be added. By passing this Act, Congress can direct the U.S. National Institutes of Health to allocate to functional GI and motility disorders discretionary funds that already exist  within the NIH budget.

U.S. citizen readers, if you have not yet contacted your Representative or you contacted him or her some time ago without securing his or her official co-sponsorship, IBS Impact encourages you to do so on Congressional Call-In Day. If you are represented by a Member of Congress who already supports HR 2239, as listed in the second paragraph of this post, please take the opportunity to say thank you on that day, Tuesday, June 12.

Click on the following link to visit DHA’s website page for Congressional Call-In Day. For the latest HR 2239 update on this blog please see the April 20, 2012 post Background information and links on HR 2239 can be found in the July 6, 2011 post. For those who would like to share a Congressional Call-In Day graphic with family and friends on social media, or print it out to distribute or hang, at the request of and with the permission of IFFGD/DHA, IBS Impact has uploaded the official DHA graphic to the photos section of the IBS Impact Facebook page where it can be downloaded or shared easily.