Putting Our Money Where Our Mouths Are for Irritable Bowel Syndrome (IBS)– Revisited

August 25, 2014

The other day, in the wake of a highly publicized campaign that is successfully raising a great deal of money for a particular health cause, a person with IBS said to the IBS Impact founder, “It would be nice if someone would do that for IBS.”

Well, yes, in a way, but no. There are debates in that community and the disability community at large as to if fundraising of this sort actually leads to substantively greater awareness of the medical condition in question, how much of the amount raised actually results in services and research directly benefiting the affected community rather than overhead, and if “fun” stunts actually undercut the dignity of those with the condition and trivialize their needs. There are other concerns as well, but the irritable bowel syndrome community isn’t anywhere near having high profile celebrity benefactors and viral Internet sensations and being in the position to have such discussions and differences of opinion.

Irritable bowel syndrome is very common. It is not talked about in public as much as many other conditions because for many  people in our community, it is deeply embarrassing to discuss problems with related to how we excrete bodily waste and use the bathroom. Many people with IBS who do talk about it find that some people they interact to are uninterested or dismissive. While the occasional minor celebrity has come out in public as having IBS, none of them has sustained interest in publicly supporting the cause, and people who are not directly affected are not going to understand the challenges and take up the cause unless people who are affected– people with IBS and families– make their presence known and show that our cause is worthwhile. Standing around and waiting for some hypothetical wealthy person to come along spontaneously, and hand over a large sum of money for IBS is not realistic.

It is up to us, to the extent we are each financially able, to support our own needs and the organizations and research facilities in several countries that already exist to help us. This is true of any health community or other constituency, such as a university alumni association, at least in the way traditional fundraising works in the United States. Historically, support from people with IBS for our own cause has not happened much at all. It is understandable that severe IBS often brings with it greater expenses of various sources and perhaps unemployment or underemployment compared to pre-IBS productivity. But five years ago, when IBS Impact was still in the planning stages, one person with IBS stated that if every person estimated to have IBS  in the United States, the United Kingdom and Australia alone donated one of his or her local unit of currency (dollar or pound) per year, we would have over one billion of them.

Over three years ago on July 22, 2011, very soon after starting this blog, we published a post entitled “Putting Our Money Where Our Mouths Are for IBS,” in which this issue was first discussed in detail, with comparisons to another related health community and explanations of the funding process in the United States. As this was a brand new blog at the time, the post got relatively little publicity, but given the recent conversation that prompted this current post, it seems like a good time to resurrect and revisit it. The grassroots Facebook Causes and the IBS Self Help and Support Group’s dedicated donation fund are all no longer in existence. But established not-for-profit organizations and research centers do remain, and the general issues raised in the post three years ago are still the same.

IBS Impact itself is neither a business nor charity. The expenses of keeping the main website running and ads off this free blog are donated by the IBS Impact founder and webmaster, both of whom are people with IBS of relatively modest means. This is a conscious decision in order to discourage miracle cure spammers and establish our credibility within the IBS community. Philosophically, we do encourage IBSers to support financially the organizations or research centers of your choice. Many, in 4 countries, are linked on various pages of the IBS Impact main site, including the links and research pages. For those who really cannot give directly, there are several sites that direct corporate money from online merchants to charities of your choice at no extra cost, such as Good Search /GoodShop in the U.S., iGive for U.S. and Canadian residents, and Everyclick for those in the U.K. Even small amounts can add up if there are many individuals with a consistent commitment to change.


Online Study for People with IBS and Their Partners, Mind-Body Digestive Center, August 2014

August 18, 2014

The Mind-Body Digestive Center in New York City, an IBS-specific treatment center founded by Charles Gerson, MD and Mary-Joan Gerson, PhD, is conducting a new online research study of people with irritable bowel syndrome and their partners (spouses or significant others). The research will focus on if agreement or disagreement on causes of IBS beliefs about illness and harmony in the relationship affect IBS symptoms. People with IBS will complete 5 questionnaires and partners will complete 3 different questionnaires online through a secure website.

If you and your partner are both interested in participating, you are asked to separately email mindbodydigest@gmail.com. Please state both of your names and clearly indicate which one of you is the person with IBS and which one is the partner. After you receive the appropriate links and instructions, no identifying information will be stored.

This listing is summarized from a recent announcement on the IFFGD website. Any questions or concerns about the study should be communicated directly to the Mind-Body Digestive Center.

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While IBS Impact attempts to highlight a diversity of available opportunities, this is not intended as an exhaustive resource. 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. Because studies stop accepting new volunteers or are completed over time, please check the post date on this blog, or the last update date on studies page, to verify that the study you are interested in is relatively recent rather than from a few years ago. Depending on how you accessed this blog, the post date will appear either at the top or at the bottom of the post, and is occasionally included in the post title. On the studies page on the main site, the date of the last update is at both the top and the bottom of the page. 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 or if an existing listing needs to be updated. 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.


American College of Gastroenterology Issues 2014 Evidence-Based Review on Irritable Bowel Syndrome (IBS) Management

August 10, 2014

This past week, on August 5, the American College of Gastroenterology Task Force on Functional Bowel Disorders, publicly released the 2014 ACG evidence-based systematic review on the management of irritable bowel syndrome (IBS) and chronic idiopathic constipation (CIC), also known as functional constipation. The last such review was in 2009. The updated review was issued as a monograph supplement to the August 2014 issue of The American Journal of Gastroenterology. The full 25 page text in PDF format is accessible at the above link.

The task force included eight leading expert clinicians and researchers of functional gastrointestinal disorders from various academic research centers in the United States and Canada. The chair was Eamonn Quigley, MD, FRCP, FACG of Houston, Methodist Hospital and Weill Cornell Medical College. Other members were Brian Lacy, MD, PhD, FACG, of Dartmouth Hitchcock Medical Center, Anthony Lembo, MD of Harvard Medical School and Beth Israel Deaconess Medical Center, Paul Moayyedi, BSc, MB, ChB, PhD, MPH, FRCP (London), FRCPC, FACG of McMaster University Medical Centre, Yuri Saito, MD, MPH of the Mayo Clinic, Rochester, Lawrence Schiller, MD, FACG of Baylor University Medical Center, Edy Soffer, MD, FACG of the Keck School of Medicine, University of Southern California, and Brennan Spiegel, MD, MSHS of the UCLA School of Medicine. According to a press release sent directly to IBS Impact by the ACG media contact, “Dr. Moayeddi conducted the systematic reviews with support from Alexander C. Ford, MD, ChB, MD [sic], FRCP, and carried out the technical analyses of the data independent of the Task Force.” (page 2)

The task force sought to systematically examine and evaluate available research literature on a wide variety of conventional and complementary treatment interventions, both existing and relatively new, that are commonly used for IBS. These included but were not restricted to diet, probiotics, the non-absorbable antibiotic rifaximin (brand name Xifaxan), antidepressants, antispasmodics, peppermint oil, bulking agents and laxatives, including loperamide (Immodium), the 5-HT3 receptor antagonist alosetron (Lotronex for severe IBS-D, available under FDA-restricted distribution only because of past serious safety concerns), the 5-HT4 serotonin receptor agonist tegaserod (Zelnorm for IBS-C, no longer available in the United States because of past serious safety concerns), the chloride channel activator lubiprostone (Amitiza), psychological therapies such as hypnotherapy and biofeedback, herbal preparations, and acupuncture. The task force used preset criteria in selecting reliable studies to review and used meta-analyses when appropriate. The quality of evidence for the effectiveness of each type of treatment was graded, again using standard scales. The full report also notes instances of possible bias or other study limitations. The task force’s revised recommendations are based on the quality of evidence and other considerations like risks and costs and possible patient preferences.

Some of the notable conclusions of the task force follow:

Elimination diets may be helpful to some people with IBS, but the overall reliability of available evidence is “very low,”(page 56 of monograph, page 5 of PDF). The low-FODMAP approach specifically is considered to “show promise” but in need of more research to determine more precisely how or why it may work. (page 58 of monograph, page 7 of PDF.)  For those with IBS whom increasing fiber intake helps, the evidence is stronger for psyllium (soluble fiber) than for bran (insoluble fiber).  Probiotics can moderately improve global symptoms, bloating and flatulence in IBS for some people, but relatively few strains have been specifically studied for IBS, and it is not possible at this time to target specific individuals they may help or specific strains to recommend. Prebiotics and synbiotics do not have sufficient evidence of effectiveness.  Rifaximin has moderate evidence of effectiveness for diarrhea-predominant IBS, but the task force expresses concern about potential long-term antibiotic resistance, uncertainty about long-term effectiveness, and the relatively high expense of this treatment to patients. Linaclotide (Linzess in the United States; Constella in Europe) and lubriprostone (Amitiza) garner strong recommendations from the task force for use in constipation-predominant IBS. This is particularly of interest, since the vast majority of treatment types reviewed, even many long considered to be traditional, established approaches to IBS, have received “weak” recommendation (page 56 of monograph, page 5 of PDF). Also, the review concludes that there is increased evidence than in previous years to support antidepressants and psychological therapies as effective for IBS, however, the report notes that antidepressants tend to have various side effects that some people with IBS may not be willing or able to tolerate, and the dearth of mental health professionals knowledgeable about and experienced in psychological therapies for IBS is a barrier to widespread use of psychological treatments.

The task force emphasizes that although IBS research is quickly increasing and evolving, the vast majority of available treatments continue to be aimed at an individual’s predominant Rome criteria symptom, not on the global symptoms of IBS as a whole, and only a small subset of people with IBS tend to be helped by any given intervention. It is important to work with one’s personal physician and other health care providers to determine the appropriate management options for one’s own situation and preferences.

IBS Impact appreciates the work of the task force and ACG’s willingness to make this review readily available to the functional GI community, professionals and affected individuals alike. Although ACG’s recommendations for IBS management are not drastically changed from five years ago when the last review was published, it is clear that the field is moving incrementally forward. Periodic peer review is important to the scientific process and future advances, and the availability of this document provides a comprehensive summary and guidance to professionals providing health care to people with IBS and to interested people with IBS in the most current standards of care for IBS in the United States. When so many people with IBS, families and professionals continue to receive outdated or inaccurate information about basic aspects of IBS, an evidence-based document is an important tool in education and management of IBS.


Gut Week 2014 in the United Kingdom and Ireland is August 11-17, 2014

August 3, 2014

Next week is National Gut Week in the U.K. and neighboring Ireland, and a good time to update readers in those countries on 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 relevant to a range of digestive health conditions 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 recipes and contests on the site in which to participate during the stated week.

One sponsor of Gut Week is The IBS Network, formerly The Gut Trust, in Sheffield and 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, such as the work of Truckers’ Toilets, U.K., which advocates for clean and plentiful facilities for long distance professional drivers, but whose work will ultimately benefit everyone. The IBS Network frequently posts U.K based research studies seeking volunteers,  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 also has an online community available to members.

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: Gov.uk 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 and support forum 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.

A newer online forum is at the Talk HealthPartnership, sponsored by NHS Choices, as discussed on this blog on July 7, 2013.

Julie Thompson, a registered dietician who works in the National Health Service and is an advisor to the IBS Network, has a blog, Clinical Alimentary, that addresses digestive health and nutrition and the scientific evidence behind various topics of interest. For a thoughtful blog with many U.K. based links concerning children with chronic pain, see Abominable Abdominal, written by a parent of a pre-teen daughter with functional abdominal pain and coeliac disease. As of last writing some months ago, the author struck a hopeful note that with appropriate treatment, the daughter’s debilitating symptoms had finally greatly improved.  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 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. IBS Impact draws many site visitors from the U.K, and Ireland, is pleased to have developed positive contacts with several of the resources listed in this post. We hope that most U.K. and Irish readers will find some useful information and direction, and that constructive dialogue and cooperation with other organizations, forums and individuals will continue in the interests of all people with IBS in those countries.


Irritable Bowel Syndrome (IBS) Advocacy Does Matter

July 27, 2014

About four or five years ago, when the first concept of a grassroots effort that eventually became IBS Impact in 2010 was taking shape and various people were discussing if advocacy and awareness by people with IBS could succeed, even IBSers who were initially interested would often ask questions like, “What is IBS advocacy anyway?” That question would become the title to one of this blog’s early posts on July 15, 2011. Several of the early members, including the IBS Impact founder, had had long experience in other health and disability rights communities and those of other social minority groups. We tried earnestly to explain tried and true principles of self-education and self-empowerment that had worked successfully for other groups and how we hoped this would help more people with IBS to be open, self-confident and assertive with family, friends, coworkers on an individual level, as well as eventually feel inspired to organize to ask for changes that would benefit the IBS community as a whole: more research, more readily accessible treatment options and physical and mental health providers with up to date, cutting edge expertise on IBS in our own communities, more restroom access laws, more in-person support groups and opportunities for high quality IBS education from the moment of diagnosis– or whatever people felt were the most pressing or personally relevant needs in their own country or geographical region. These were lofty goals to be sure, but not necessarily unobtainable, as many other common chronic health conditions have many of these resources at hand. This bounty did not come out of nowhere, but usually from the dedicated and persistent work, advocacy, financial commitments and media attention of affected people and concerned family members. We aimed to give people with IBS who were struggling reasons for hope and a sense of control when Internet support forums often were full of daily messages of despair. “Nothing works, nobody understands, this is horrible, I am scared, why don’t doctors… politicians… famous people with a lot of money…. the media… do something?” These were valid points and good questions.

Unfortunately, if the few of us IBSers who seemed to be consistently interested in “doing something” came back with the answer, “Because we don’t ask them,” or suggested writing a letter about some IBS-friendly legislation or IBS-unfriendly media attention or financially supporting the IBS cause through existing GI  organizations in various countries, most people lost interest and discussions eventually fizzled out. People were generally not willing to act on their natural emotions concretely, especially in a public way. Although things seem to have improved a bit since then, it’s still the case for many IBSers who, to quote Tim Phelan, author of a 2007 memoir of IBS, Romance, Riches, and Restrooms are afraid to “come out of the water closet,” as he was for many years. To a point, this is understandable, as is the fact that those of us who are most severely ill don’t have the energy to function, and those who have very good, consistent symptom control or mild, sporadic symptoms have little incentive or desire to spend any more time on IBS. But that still leaves many of us in the vast middle ground who, for the most part, are not used to thinking of ourselves as a community that can change anything for the better on our own behalf. Many are still caught up themselves in the misconceptions and myths of IBS, and not in a position to educate the public. From the beginning, some IBS Impact members argued, in retrospect, rightly, that basic education of IBSers about their own IBS was just as important, if not more so, leading to a shift, over time, in some of the content of our sites and social media.

Some people with IBS are learning to become receptive to self-advocacy, and slowly, the culture of apathy and treating IBS as a deep, dark secret is changing a bit. However, in some cases, apathy has been replaced by cynicism,  “I don’t depend on the system to do anything for me. I try to help people take care of themselves.” (That’s good, but systems advocacy is also, in a way, taking care of ourselves.) and, “This won’t work. Politicians will never do anything for us.” (Some of them already have.) For the last two Aprils, one of the posts on this blog has been a retrospective of what progress has been made in the IBS world lately, including legislation.  See April 10, 2014 and April 24, 2013.

Yesterday, July 26, 2014, was the 24th anniversary of the signing of the Americans with Disabilities Act, a broad civil rights law for United States citizens and visitors alike with all types of disabilities. It was not the first disability rights law, nor has it been the last, but it remains one of the most comprehensive. It was preceded by almost three decades of increasing disability identity and advocacy in the country, and it was about two years from the introduction of the first drafts in Congress to the signing of the final version into law by then-U.S. President George H.W. Bush on July 26, 1990. This was the result of collaboration and negotiation among government leaders from both U.S. political parties, and broad coalitions of people with all types of disabilities, families, health and human service professionals, educators and other supporters across the nation. Forms of advocacy ranged from the very private to the very public:  calls, letters, legislative visits, rallies, civil disobedience and media coverage. The point is that millions of people came together with common purposes, and, as a community, they did not stop for as long as it took to reach a goal.

The ADA has been a model for similar laws and disability rights advances in other countries of the world, and in 2008, eighteen years later, after many more years of advocacy, the disability community was successful in amending the ADA to clarify the original intent of the ADA’s framers and restore some protections that  incorrectly had been eroded by court decisions in the ensuing years.  These ADA amendments are of benefit to people with IBS as well, as they made it clearer that the law also applies to impairments of bodily function, such as digestion, or conditions that may come and go periodically. The fight to enforce the ADA and other existing disability laws and public policies in the United States and globally continues, as there is always a long way to go, but the history of the broader disability rights movement, as lived by some current and former members of IBS Impact, is proof that advocacy matters and makes a difference. We do not take it for granted. May the IBS community one day be able to look back on our history in this way and see a similarly major and positive evolution over time.


Representatives Price of North Carolina and Shea-Porter of New Hampshire Co-Sponsor HR 842 for Functional Gastrointestinal and Motility Disorders

July 17, 2014

According to THOMAS, the Library of Congress legislative database, and IFFGD/the Digestive Health Alliance, Representatives David Price  (D-NC-4) and Carol Shea-Porter (D-NH-1) have recently signed on as co-sponsors to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013.

Representative Price is currently serving his thirteenth non-consecutive term in Congress representing the 4th District of North Carolina, which was recently re-districted and currently encompasses much of the Triangle region in the central part of the state, including most of Durham and Orange Counties and parts of Alamance, Wake, Harnett, Chatham and Cumberland Counties. According to his official House website, Representative Price is currently a member of the Committee on Appropriations, where he supported increases in funding to the National Institutes of Health. He also is the Ranking Democrat on the Subcommittee on Homeland Security and  a member of the Subcommittee on Military Construction and Veterans Affairs. As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are at disproportionately high risk of functional gastrointestinal disorders like IBS, which are already very common in the general population. In the 112th Congress in 2011-2012, Representative Price was also a co-sponsor of HR 2239, the previous version of this Act, which was not passed by the House of Representatives at that time. IBS Impact commends Representative Price’s continued support.

Representative Shea-Porter is currently serving her third non-consecutive term in Congress representing the 1st District of New Hampshire in the southeastern part of the state, encompassing most of greater Manchester, the Seacoast and the Lakes regions, including  all of Carroll and Stratford Counties, most of Belknap and Rockingham Counties and small portions of Grafton, Hillsborough and Merrimack Counties. Representative Shea-Porter, whose official House website, states she is a former military spouse, is a member of two subcommittees of the Committee on Armed Services. She also has a record of membership in several caucuses or supporting legislation related to various health and women’s issues. In most countries, women are also disproportionately affected by IBS.

If you are a constituent of Representative Price or Representative Shea-Porter. please take a few minutes to write or call with your thanks for their support of HR 842 and the functional gastrointestinal and motility disorders community.

In officially supporting HR 842, Representatives Price and Shea-Porter join the lead sponsor, Representative F. James Sensenbrenner, Jr. (R-WI-5) and co-sponsors, Representative James Moran (D-VA-8), Representative Julia Brownley (D-CA-26), Representative Bobby Rush (D-IL-1),  Representative Gwen Moore (D-WI-5), Representative Ron Kind (D-WI-3), Representative Susan Davis (D-CA-53),  Representative Peter Welch (D-VT), Representative James McGovern (D-MA-2), Representative Gerald Connolly (D-VA-11), Representative Louise Slaughter (D-NY-25), Representative Bill Posey (R-FL-8), and Representative Ed Perlmutter (D-CO-7), Representative Jim Himes (D-CT-4), Representative André Carson (D-IN-7), and Representative Mo Brooks (R-AL-5) and Representative Richard Neal (D-MA-1) U.S. citizens residing in the districts of Representative Price’s and Representative Shea-Porter’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. Click on the link above if you would like to see a list of its members.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 842 and you have not contacted him or her recently to ask for his or her support, please see the previous post from March 2, 2013  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. Keep in mind that your Representative may be different from before because of the 2012 elections, district boundaries that may have been re-drawn, or if you have moved.

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. However, even general expressions of support are helpful.

HR 842 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 842.

NIH grants funding to researchers throughout the world, not just in the U.S., so in the long run, enactment of this Act may also benefit readers with IBS in other countries. Medical research also sometimes involves multinational teams of scientists, and in any case, study results are usually published globally, adding to the cumulative knowledge worldwide.

It is IBS Impact’s understanding that HR 842 will not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 218 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 113th,  the necessary number of sponsor/cosponsors must be reached by December 2014. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 842 has not passed by that time,  a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering co-sponsors anew. This is what occurred with HR 2239 in 2012. 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 Facebook page or Twitter feed for further updates on HR 842 as they occur. Links to the social media sites can be found on the right sidebar of the blog.


Online Clinic for Bladder, Bowel and Digestive Health Available July 16-22, 2014

July 9, 2014

TalkHealth, a social media community in the United Kingdom that provides health information and online forums, and “online clinics” where participants can ask questions of health experts and organizations for a given category of conditions, has announced that the July 16- 22, 2014 topic will be the bowel, bladder and digestive health. TalkHealth is presenting this month’s clinic in cooperation with NHS Choices, the Bladder and Bowel Foundation, The IBS Network, which is the U.K. national charity specifically for irritable bowel syndrome, Core, which is an organization for all gut and liver diseases, and PromoCon, a national service of Disabled Living for adults and children facing continence issues. The 2014 Bladder, Bowel and Digestive Health Clinic, which takes the form of an online forum, is currently open and accepting questions in advance and through the dates of the clinic.  Readers can access it by clicking the above link.

Some past clinic topics for various health conditions, including the July 2013 bladder, bowel and IBS clinic, and the August 2013 clinic for chronic fatigue syndrome (also known as myalgic encephalomyelitis) or fibromyalgia, both of which commonly overlap with IBS, are archived on the TalkHealth website, although they no longer accept questions

IBS Impact hopes TalkHealth provides another source of reputable information and support to our U.K. readers. In addition to the clinic this month, please browse the rest of the TalkHealth website, including the new online forums for IBS, and feel free to leave comments on this post for the benefit of other IBS Impact readers as to if you find the resources useful.


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