January 2015 Update on American Gut, British Gut and Australian Gut Human Microbiome Projects

January 30, 2015

As many readers of this blog are probably aware, the potential roles of “good” and “bad” gut bacteria in gastrointestinal disorders like IBS is somewhat of a “hot topic” in recent years, capturing much attention in both scientific and mainstream media. This field of research appears to be promising, but despite the hype, actual scientific understanding is still at a very early stage.  On December 31, 2012, this blog reported that two separate teams of researchers, one of them known as the American Gut Project, were using the Internet and the crowdfunding sites to recruit members of the general public. For monetary donations of varying amounts, depending on the number of test kit one wished to receive, one was able to submit stool, and/or mouth or skin samples for analysis. Participants were asked to complete detailed online surveys on diet, health and daily lifestyle factors that may affect the microbiome.

The initial Indiegogo campaigns ended in February 2013. American Gut attracted about 4000 people throughout the U.S. in Phases I and II, began shipping kits in the spring of 2013 and as of this blog’s last update on October 6, 2013, had begun releasing preliminary results and individual reports to the early volunteers. Since then, in Phase III, cumulatively, over 7000 people have signed up, American Gut has revamped the participant questionnaires, and the coordinating primary investigator Rob Knight, PhD has moved recently from the University of Colorado at Boulder to a new lab at the University of California at San Diego. American Gut has forged a partnership to form the British Gut Project, headed by Tim Spector at King’s College London, MB, MSc, MD and FRCP, and Australian Gut is in the early stages of launch. See the January 18, 2015 National Public Radio interview with Dr. Knight at “One Scientist’s Race to Help Microbes Help You.” A December 20, 2014 interview with Prof. Spector can be found on the Gut Microbiota For Health blog

Both American Gut and British Gut welcome those who are currently healthy and those with medical conditions, both adults and children three months and older.  One does not need to be a U.S. or U.K. resident, but participants outside those countries may face high extra costs to ship their samples quickly and safely to one of the labs. Samples will be coded and personally identifying information will be protected according to standard research protocols and health privacy laws in the given countries.

Although this unconventional recruiting approach differs from standard, controlled clinical trials, these are legitimate research endeavors involving collaborations among scientists and social scientists associated with well-regarded academic, medical and scientific research institutions. Donated samples for American Gut will be received and coordinated by Dr. Knight’s lab at the University of California at San Diego, or British Gut samples by Prof. Spector’s lab at Kings College, London, but will also be used by researchers at more than two dozen sites in several countries.

It should be emphasized that although each team of researchers will provide participating donors with individual analyses of their own or their participating family members’ samples, and other reports about their research findings in general, the results are not intended to be, nor are they specific enough to guide prevention, diagnosis or treatment of IBS or any other medical condition. Scientific understanding of the human microbiome has not reached that point yet. While functional GI researchers and the updated 2014 American College of Gastroenterology guidelines on the treatment of IBS  (see the August  10, 2014 post) acknowledge that some people with IBS benefit from the use of probiotics, there are tens of thousands of individual strains and combinations of strains, only a handful of which have undergone clinical trials specifically with people with IBS. There is no way at this time for researchers and clinicians to target which ones may be helpful to a given individual with IBS. The microbiome studies in this post are not IBS-specific. They are broad, open source microbiome research of all people with and without known medical conditions who have volunteered themselves and  have not been selected by the researchers to control any particular demographic parameters. Readers of this blog post who choose to participate in American Gut, British Gut, or Australian Gut  should do so in the spirit of the public good and future understanding of how the microbiome works and influences human health. With that in mind, these are very interesting opportunities, and IBS Impact wishes all the involved researchers continued useful insights and progress toward those ends.

In-Person Support for Irritable Bowel Syndrome (IBS) in the United Kingdom

January 21, 2015

After the most recent post on this blog about the relative dearth of support and education options for people with IBS in their own communities (See the January 12, 2015 post), we were contacted by the IBS Network, the national charity for IBS in the United Kingdom. It was communicated that the organization does have existing self-help groups in a few locations, and is interested in starting more in other cities in the U.K., preferably with a volunteer who has IBS in each location to help coordinate the group. The IBS Network will provide information and advice as to how to start a new group.

For those residents of the U.K. who feel they might prefer or benefit from local support rather than the many Internet groups, please see the IBS Network’s self help group page for more information and contact details.

IBS Impact advocates a range of options to educate and support people with IBS and their families, wishes the IBS Network success in these endeavors, and hopes that gastrointestinal organizations, medical facilities and community groups in other nations will follow suit with similar efforts. Once again, readers of this blog are encouraged to comment with available resources or to discuss possible systemic barriers that people with IBS may face in getting access to community services and support.

Why Are Community-Based Education and Support for IBS So Hard to Find?

January 12, 2015

In many communities, at least in the United States, it is very common for a person recently diagnosed with, for example, diabetes or kidney disease, to be promptly referred to some sort of seminar or ongoing class designed to educate the person on his or her medical condition and appropriate management. Very often, these educational opportunities include some form of a support group. In other locations, some hospitals or clinics have nurses or other health educators available for affected people to call for quick questions between follow-up visits to one’s physician. That sort of thing seems unheard of for irritable bowel syndrome, even in major metropolitan areas that are rich with health and social service organizations of many sorts, even though diabetes and kidney disease, as prevalent as they are, are each individually less so than IBS.

One might say that diabetes and kidney disease are life-threatening conditions, each with many potentially serious complications if left improperly managed, while IBS is not. However, Down syndrome is not such a condition, and in that community, following the lead of one local DS parent group several decades ago, many DS parent groups nationwide have a service whereby experienced parent volunteers are available on request to meet with a new family for peer support and quality information mere hours after the birth or prenatal diagnosis. For many common disabilities and health conditions, support and information in one’s own town or city or nearby local areas can be found easily on the Internet or by referral from one’s health care facility or a local human service agency. Publicity of such resources in the media or community newsletters and electronic listservs often indirectly increases public awareness of a given disability or medical condition as well. These are good opportunities and often lead to better outcomes for affected people and families.

This availability of local, community-based programs is not generally the case for irritable bowel syndrome. There are many support forums on the Internet, some long established for years, some newer, many using anonymous user names, some with real names.  These play an important role for individuals with IBS and the IBS community as a whole, giving people with IBS access to peers all over the world. Several people involved with IBS Impact, in the present or past, have been founders or moderators of various such forums. As for evidence-based IBS education, as often publicized on this blog, the University of North Carolina Center for Functional GI and Motility Disorders, in particular, has been a pioneer in creating opportunities for state of the science patient education through its past online patient symposia, “Expert Updates” and past chat series and downloadable handouts that reach people in U.S. states and countries far beyond its Chapel Hill, North Carolina campus. This is all urgently needed and appreciated. But even two decades after increasingly widespread use of the Internet, not everyone is comfortable with technology or with such public forums with strangers, or may have other reasons for desiring or responding better to in-person education and support.

Why are Internet resources the only option in most cases? Why do the same basic questions and misconceptions about IBS come up repeatedly, sometimes daily or several times a day, not necessarily from people who have recently been diagnosed, but also from those who have already lived with diagnosed IBS for several years? Have they all been provided with excellent information from their health care providers, but simply do not have the willingness or capacity to listen and learn? Perhaps this is true for a subset, but that cannot be the case for all people with IBS who frequent one or more of these online support forums. Why are people with IBS so frequently left to their own devices in front of a computer, desperately typing into search engines, trying to sort through what is reputable and what is quackery, and asking questions of mostly layperson strangers, sometimes anonymous ones, on the other side of cyberspace when some of these answers clearly are so specific to the person’s individual situation or technical enough that they should come from the person’s own physician? Evidence-based research of all sorts shows that overall, IBS is astonishingly hard on the quality of life of people with significant IBS, on families and on society as affected people commonly go from health care provider to health care provider searching for answers, or deal with decreased productivity at work or school. Evidence also shows that those people with IBS who have good doctor-patient relationships tend to have better outcomes. Logically, it would be in everyone’s interests if people with IBS and the family members and friends who support them in their daily life were encouraged and given access to convenient, quality resources as soon as possible.

More than one person with IBS, when requesting a referral from a health care provider, human service professional or support group clearinghouse has been met with the bemused response, “There isn’t one.” or “Nobody else has ever asked.” Really? Anyone who has been in the IBS community for some time is aware that many people with severe IBS are afraid to go out unless absolutely necessary because of unpredictable and embarrassing symptom flare-ups. That also may be part of the answer, but people with inflammatory bowel disease and/or ostomy devices share some of the same concerns and it’s generally much easier to find local, in-person support groups for either of those conditions, which are also statistically much less common than IBS. Professionals and people with IBS  also often speak of the stigma of IBS that leads many people with IBS to delay or avoid asking for help altogether. Still, some of that increased stigma appears to be perception rather than reality, as people with similarly poorly understood, invisible chronic pain conditions or mental illness often have very similar complaints about how they perceive themselves to be regarded by others, and there are generally support groups for many of those conditions. Clearly, people with IBS need education and support as they flood the Internet forums by the thousands, with several new requests for membership every few hours in one busy multinational group.

So why, really, do we not have plentiful support and evidence-based education near our own homes, schools, workplaces, health care facilities, or community gathering places offered routinely from the moment of diagnosis or upon request?  Readers are invited to comment.  People with IBS, is there a support group or IBS education program near you? If not, have you asked for one? If you had a choice, would you prefer a community-based option or the Internet and why? IBS professionals and peer facilitators with IBS, do you have or have you tried local education and support? What has made any efforts succeed or fail, and what can we do as a community to begin to change the status quo in this respect? IBS Impact supports a range of options so that different individuals can choose the means that best fit their personal needs and desires at any given time.

IBS Impact’s Top 25 (or 33!) Countries and Top 10 Posts of 2014

January 2, 2015

For this first week of the New Year, IBS Impact is once again participating in the common December-January blogger tradition of highlighting popular posts and interesting blog statistics from the year just past.

This blog reached readers in 94 countries and territories during 2014, and 124 in the three years that WordPress has made country statistics available to individual blog owners. While, predictably, most of the nations in the top 10 are ones where English is an official or major secondary language, our total blog hits span every continent, underscoring that IBS is a global problem, not the common stereotype of it as a nuisance disorder caused by overindulgent North American diets and lifestyles. A list of the top 25 better reflects the diversity of countries of origin represented. This year, because of several two-way or three-way ties in the statistics, the top 25 places are actually occupied by 33 countries. It is hoped that the vast majority are legitimate visits, even from those who might not have been searching specifically for information about IBS, and not simply potential spammers. In order, the countries are:

1. United States

2. United Kingdom

3. Canada

4. Australia

5. India

6. Italy

7. Ireland

8. Kuwait

9. Poland

10. Sweden

11. Germany

12. Netherlands

13. Sri Lanka

14. (tie) Philippines and Bangladesh and Spain

15. Japan

16. Malaysia

17. New Zealand

18. Turkey

19. (tie) Singapore and Brazil

20. (tie) South Africa and Austria

21. Mexico

22. Israel

23. (tie)  Malta and Republic of Korea and Norway

24. (tie) Pakistan and Portugal

25. (tie) Romania and Russia

Below are the top 10 individual posts that received the most hits during 2014. The majority of them were first published in 2011, 2012 or 2013. However, they continue to attract attention because they address topics that are of ongoing concern to people with IBS. Perhaps longtime readers can refresh their memories and newer readers will discover something interesting and useful. In order, the posts are:

1. Functional Gastrointestinal Disorders/IBS Considered Presumptive Service-Connected Disabilities for U.S. Gulf War Veterans,  August 12, 2011

2. Irritable Bowel Syndrome (IBS) and a Debate on “Can’t Wait” Cards,  November 25, 2012 Please note that the blog originally linked in the above post as a basis for discussion no longer exists on WordPress.com. However, the ideas raised and the invitation by IBS Impact for readers and the IBS community to continue to discuss related concerns are still valid.

3. Restroom Access Act (Ally’s Law) Updates in Maryland and Maine, May 10, 2013

4. The Americans with Disabilities Act (ADA) and Irritable Bowel Syndrome (IBS), July 30, 2012

5. Public Restroom Access and Irritable Bowel Syndrome (IBS), February 21, 2012

6. 15 Common Misconceptions That Shouldn’t Exist about Irritable Bowel Syndrome (IBS), November 8, 2013

7.  The American College of Gastroenterology Issues 2014 Evidence-Based Review on the Management of Irritable Bowel Syndrome (IBS), August 10, 2014

8. Guest Post: I Know Why People Can’t Tell I Have IBS (Becoming More Present At Work), May 5, 2014

9. Food Poisoning and Post-Infectious IBS, August 5, 2011

10. Update on American Gut and uBiome Microbiome Research Projects, October 6, 2013

This blog was begun in July 2011, a few months after the launch of the main IBS Impact website, and a bit over a year after the inception of IBS Impact itself. It is intended as a supplement to the many resources on our main site, one that can be updated relatively quickly with time-sensitive news, advocacy and clinical trial opportunities, as well as providing well-researched, scientifically reputable information on IBS and commentary on broader issues affecting the IBS community that may not be widely discussed on other sites. It is meant to be useful to a broad readership: people with IBS and related conditions, both those who may have lived with IBS for some time and those with recent onset or who are new to IBS sites online,  family members and friends, health care and human service professionals who may interact with us, and the general public. We are pleased that it continues to fulfill this role.

IBS Impact wishes everyone a happy, healthy, prosperous and productive New Year and looks forward in 2015 to advances in awareness, advocacy, research, treatment and community support systems that benefit the worldwide IBS community.