Online Study: “Understanding IBS Patient Self-Management Strategies and their Relation to Outcomes”, Icahn-Mount Sinai, September 2018

The following study is currently seeking adults 18-65 years old who are fluent in English and have a diagnosis of IBS. The primary investigator is Laurie Keefer, PhD of Icahn Mount Sinai Medical School in New York, in cooperation with the Center for Psychosocial Research in GI at Northwestern University in Chicago. IBS Impact received this link from another CPRGI affiliated researcher of gastrointestinal health psychology with a request to share.

The study is expected to take 30-45 minutes online. The questions include general demographics such as age, gender, race/ethnicity, level of education and household income, some medical questions, as well as questions about IBS related symptoms, emotions and opinions of using a GI health psychologist. No actual identifying information is requested.

The study has received institutional ethical approval. All information available to IBS Impact is in this post and on the study page. We encourage potential volunteers to read the informed consent page at the link below, and if you agree, to proceed with the pages of the study that follow.

https://survey.co1.qualtrics.com/jfe/form/SV_250qRkJwHKVMWQB?Q_CH

Please address any further questions or concerns directly to Dr. Keefer at the phone number or email address given in the linked description.

IBS Impact welcomes 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 or surveys they wish to be considered for posting. A contact form is available on the main IBS Impact website.

IBS Impact makes these announcements available for general information, and encourages its members and site visitors to make their own individual, informed choices about their potential participation. Additional studies can be found by clicking on the Research– Clinical Trials sub-category in the right sidebar of this blog on our main website IBS studies page. Please be sure to check the date at the top or bottom of a given post, as many posts from this blog remain visible in search engines for several years, and studies stop accepting volunteers or conclude the trials after a period of time. IBS Impact, as an entity, is not directly affiliated with any research sponsor or organization and receives no funding from any source for studies, surveys or links we feature on this blog, the main site or social media.

American Neurogastroenterology and Motility Society Twitter Chat, “Hypnosis and GI Disorders”, August 20, 2018, 3:00-4:00 PM ET

The American Neurogastroenterology and Motility Society (ANMS) has announced that it will be holding a Twitter chat from 3:00-4:00 PM Eastern time, Monday, August 20, 2018 on the subject of “Hypnosis and GI Disorders.” The chat moderator will be Tiffany Taft, PhD,  Assistant Professor in the gastroenterology division of Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA and founding partner in the health psychology practice Oak Park Behavioral Medicine in suburban Oak Park and Evanston, Illinois. Dr, Taft’s research studies have occasionally appeared on this blog, and she wrote a guest post for us on IBS and stigma, a major focus of her research, for IBS Awareness Month 2013.

ANMS’s Twitter handle is @ANMSociety and the chat can be found using the hashtag #ANMSChat

IBS Impact encourages people with irritable bowel syndrome and/or their family members to make time to attend and participate in this open, public chat, which allows one to interact directly with a GI health psychologist who is associated with a leading medical school known for gastrointestinal health psychology research and clinical care. Participants will have the opportunity to ask questions and/or give feedback about general needs and concerns regarding IBS and gut-directed hypnotherapy.

A reminder to all interested parties: All information shared on Twitter in connection with this chat will remain online, potentially accessible to the public indefinitely and is designed to address issues of general interest within the scheduled hour. It is not an appropriate venue to seek diagnosis or treatment of an individual medical situation from Dr. Taft or other professionals who may be participating in the discussion. However, it is a quality, evidence-based and unique opportunity to further one’s self-education on the IBS and gut-directed hypnotherapy. IBS Impact thanks Dr, Taft and ANMS for making this chat available, with best wishes for a successful chat.

Representative Perlmutter of Colorado Co-Sponsors HR 1187 for Functional Gastrointestinal and Motility Disorders

According to IFFGD and the official Congressional legislative database Congress.gov, Representative Ed Perlmutter (D-CO-7) signed on in early July 2018 as a co-sponsor of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017.

Representative Perlmutter is serving his sixth term as a member of the House of Representatives. He represents Colorado’s 7th district which encompasses the northern and western suburbs of Denver in Adams and Jefferson Counties. He was also a co-sponsor of two previous versions of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act,  HR 2239, in the 112th Congress during 2011-2012 and HR 842 in 2013-2014. Representative Perlmutter’s official House website is linked here.

IBS Impact commends Representative Perlmutter for renewing his support. If you are a constituent of Representative Perlmutter, please take a few minutes to write or call him or contact him on social media with your thanks.

In officially supporting HR 1187, Representative Perlmutter joins Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, and co-sponsors, Representative Mark Pocan (D-WI-2), Representative Eliot Engel (D-NY-16), Representative Dave Loebsack (D-IA-2),  Representative Alcee Hastings (D-FL-20), Representative Tom Suozzi (D-NY-3), Representative Ron Kind (D-WI-3),  Representative Gwen Moore (D-WI-4),  Representative Andre Carson (D-IN-7), Representative Donald Payne, Jr. (D-NJ-10), Representative Zoe Lofgren (D-CA-19), Representative John Faso (R-NY-19), and Representative David Price (D-NC-4), and Representative Gerald (Gerry) Connolly (D-VA-11). If you are a constituent of any of these legislators, please take a few minutes to call, write, or contact him or her on social media to thank him or her for his support of the functional gastrointestinal and motility disorders community.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 1187, please see the previous post from March 21, 2017 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 2016 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 1187 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 1187.

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 1187 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 115th, the necessary number of sponsor/cosponsors must be reached by December 2018. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 1187 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, HR 842 in 2014 and HR 2311 in 2016. 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 1187 as they occur. Links to the social media sites can be found on the right sidebar of the blog.

Representative Connolly of Virginia Co-Sponsors HR 1187 for Functional Gastrointestinal and Motility Disorders

According to IFFGD and the official Congressional legislative database Congress.gov,  Representative Gerald (Gerry) Connolly (D-VA-11) signed on in early June 2018 as a co-sponsor of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017.

Representative Connolly is serving his fifth term as a member of the House of Representatives. He represents Virginia’s 11th district, which encompasses the city of Fairfax and the majority of Fairfax and Prince William Counties. According to Representative Connolly’s official House website,  he has a record of supporting much legislation health, medical research, and veterans’ issues.  As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are at disproportionately high risk for functional gastrointestinal disorders like IBS, which are already very common in the general population.

Representative Connolly was also a co-sponsor of HR 842, a previous version of this Act in 2013, which was not passed by the House of Representatives at that time. IBS Impact commends Representative Connolly for renewing his support.

In officially supporting HR 1187, Representative Connolly joins Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, and co-sponsors, Representatives Mark Pocan (D-WI-2), Eliot Engel (D-NY-16), Dave Loebsack (D-IA-2), Alcee Hastings (D-FL-20) Tom Suozzi (D-NY-3), Ron Kind (D-WI-3), Gwen Moore (D-WI-4),  Representative Andre Carson (D-IN-7), Representative Donald Payne, Jr. (D-NJ-10), Representative Zoe Lofgren (D-CA-19), Representative John Faso (R-NY-19), and Representative David Price (D-NC-4) If you are a constituent of any of these legislators, please take a few minutes to call, write, or contact him or her on social media to thank him or her for his  support of the functional gastrointestinal and motility disorders community.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 1187, please see the previous post from March 21, 2017 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 2016 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 1187 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 1187.

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 1187 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 115th,  the necessary number of sponsor/cosponsors must be reached by December 2018. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 1187 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, HR 842 in 2014 and HR 2311 in 2016. 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 1187 as they occur. Links to the social media sites can be found on the right sidebar of the blog.

International Foundation for Functional Gastrointestinal Disorders (IFFGD) Seeks Volunteers for New Patient Panel, June 2018

The International Foundation for Functional Gastrointestinal Disorders (IFFGD) is an established, reputable U.S. based 501c3 not-for-profit organization/charity focused on irritable bowel syndrome (IBS) and related functional gastrointestinal disorders, also known as disorders of gut-brain interaction. IFFGD was founded in 1991 by an FGID-affected family and continues to have people with FGIDs or family members/supporters among its staff. IFFGD is a science-based organization with leading FGID clinicians and researchers from 11 countries on its advisory board.

Now IFFGD is reaching out to people affected by FGIDs, including IBS, as well as concerned family members and friends, to join a new Patient Panel. This involves occasional opportunities to give IFFGD feedback on the needs and experiences of our community, IFFGD’s programs and services, and to participate in IFFGD’s awareness and advocacy efforts. IFFGD is not asking for a specific time commitment or obligating panel members to respond to every opportunity, simply identifying those who are interested in being contacted and willing to participate in some of the potential requests. If you wish to volunteer, you may indicate this to IFFGD staff at the following link.

http://www.surveygizmo.com/s3/4361777/IFFGD-Patient-Panel

IBS Impact encourages affected people and family members who wish to make a real difference in services to the IBS/functional gastrointestinal and motility disorders community to consider this important opportunity.

Online Study: Cognitive Mediators of Bowel Discomfort Validation Study, Swinburne University, Australia, June 2018

The following study currently seeking men and women at least 18 years old in any country with chronic gastrointestinal conditions is a followup to an online study posted here on August 12, 2017.  The 2017 study is now closed to new volunteers.

The current study has received institutional ethical approval. All information available to IBS Impact is below and at the study link. Please address any further questions or concerns directly to the research team at the phone number or email address given below. This description is adapted from excerpts of the one on the study page.

In 2017 we conducted a study which developed a new scale (Cognitive Mediators of Bowel Discomfort Scale) to assess cognitive processes associated with bowel discomfort. We are now conducting a new study and looking for both male and female participants who are at least 18 years of age. The current project is exploring how responses to the Cognitive Mediators of Bowel Discomfort Scale relate to other similar scales. …

…Your responses will help us better understand how thinking patterns impact upon gastrointestinal discomfort. Further, your participation will also help us to evaluate our new scale against other similar scales. We hope that the validation of our new scale will lead to better ways to measure and assess common cognitive factors associated with bowel discomfort.

Estimated time commitment is 30 minutes. All information provided is anonymous. At the completion of the study, participants may opt in to providing an email address for a random drawing to receive one of four AUS $100 Amazon gift cards and/or being contacted about future studies, but this is not required.

https://swinuw.au1.qualtrics.com/jfe/form/SV_3kHEHoJXWwlcORn

For more information, please contact the research team: Principal Investigator: Dr Simon Knowles, (Senior Lecturer and Clinical Psychologist ) 61 (03) 9214 8206, email: sknowles@swin.edu.au 

Other investigators involved: Dr Pragalathan Apputhurai (Lecturer in Statistics), Dr Rebecca Burgell (Consultant Gastroenterologist, The Alfred Hospital), Mr. Stephan Moller (Research Assistant) & Professor Laurie Keefer (Health Psychologist, Susan and Leonard Feinstein IBD Clinical Center, New York).

IBS Impact welcomes 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 or surveys they wish to be considered for posting. A contact form is available on the main IBS Impact website.

IBS Impact makes these announcements available for general information, and encourages its members and site visitors to make their own individual, informed choices about their potential participation. Additional studies can be found by clicking on the Research– Clinical Trials sub-category in the right sidebar of this blog on our main website IBS studies page. Please be sure to check the date at the top or bottom of a given post, as many posts from this blog remain visible in search engines for several years, and studies stop accepting volunteers or conclude the trials after a period of time. IBS Impact, as an entity, is not directly affiliated with any research sponsor or organization and receives no funding from any source for studies, surveys or links we feature on this blog, the main site or social media.

Representative Price of North Carolina Co-Sponsors HR 1187 for Functional Gastrointestinal and Motility Disorders

According to IFFGD and the official Congressional legislative database Congress.gov,  Representative David Price (D-NC-4) signed on in late May 2018 as a co-sponsor of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017.

Representative Price is currently serving his sixteenth non-consecutive term in Congress representing the 4th District of North Carolina, which currently encompasses much of the Triangle region in the central part of the state, including parts of Durham, Orange and Wake Counties and parts of 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 a member of the Subcommittee on Homeland Security, which has jurisdiction over many pieces of legislation concerning the military. 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 and 113th Congresses in 2011-2012, and 2013-2014 Representative Price was also a co-sponsor of HR 2239 and HR 842, previous versions of this Act, which were not passed by the House of Representatives at those times. IBS Impact commends Representative Price for renewing his support.

In officially supporting HR 1187, Representative Price joins Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, and co-sponsors, Representatives Mark Pocan (D-WI-2), Eliot Engel (D-NY-16), Dave Loebsack (D-IA-2), Alcee Hastings (D-FL-20) Tom Suozzi (D-NY-3), Ron Kind (D-WI-3), Gwen Moore (D-WI-4),  Representative Andre Carson (D-IN-7), Representative Donald Payne, Jr. (D-NJ-10), Representative Zoe Lofgren (D-CA-19) and Representative John Faso (R-NY-19). If you are a constituent of any of these legislators, please take a few minutes to call, write, or contact him or her on social media to thank him or her for his  support of the functional gastrointestinal and motility disorders community.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 1187, please see the previous post from March 21, 2017 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 2016 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 1187 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 1187.

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 1187 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 115th,  the necessary number of sponsor/cosponsors must be reached by December 2018. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 1187 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, HR 842 in 2014 and HR 2311 in 2016. 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 1187 as they occur. Links to the social media sites can be found on the right sidebar of the blog.

DNA Variants on Chromosome 9 Appear To Be Associated With Irritable Bowel Syndrome (IBS) in Some Women

In April 2018, the journal Gastroenterology published an article that an international collaboration of researchers headed by the Karolinska Institutet in Sweden, has identified several DNA variants on Chromosome 9 that may be associated with higher risk of IBS in women, particularly IBS with constipation. This possible correlation was not found in men. The identified chromosomal regions are similar to those believed to influence the timing of sex hormones, puberty and first menstruation, and may partially explain why known cases of IBS are more common in women than men in most countries of the world.

According to an English-language news summary on the Karolinska Institutet website, these findings were based on extensive data from 300,000 individuals whose genomes were available in the United Kingdom’s Biobank and 2045 people with IBS associated with research and treatment centers in Sweden, Belgium, the Netherlands and the United States. Author information on the journal article in question reveals the involvement of scientists in Sweden, the United States, Australia, Germany, Italy, Spain and the Netherlands. In most of the listed countries, research centers from multiple universities were represented.

While these are exciting discoveries, more research is needed. It should be emphasized that IBS is a complex disorder arising from many factors that likely vary with the individual. The researchers have not identified the specific genes on Chromosome 9, nor is this recent discovery the full answer. Over the past three decades, various studies have established that people with IBS are more likely to have close relatives with IBS than the general population, but the percentages of those self-reporting known family history have varied, and represent only a subset of all people with IBS.  It is still not definitively established how much influence genetics have versus a range of environmental factors, even within families, and many people with IBS have no known prior family history of IBS.

Furthermore, there may be other genes on other chromosomes involved in some cases of IBS as well. As reported by Yuri Saito Loftus, MD, MPH of the Mayo Clinic in the U.S. in 2011,To date, over a hundred genetic variants in over 60 genes from various pathways have been studied in a number of candidate gene studies with several positive associations reported.” On September 26, 2014, this blog alerted readers to another international collaboration, this one led by the Mayo Clinic, that identified a specific gene mutation thought to account for an estimated 2.2% of cases of IBS, although this cannot be tested clinically in specific patients at this time.

Genetics are among the many areas of IBS research that continue to be actively pursued, including by the GENIEUR.EU network established several years ago by IBS experts to collaborate for this purpose. Its membership has grown over time, now including 25 European countries, Australia, Chile, Israel and the United States, again, often with several participating research centers per country. The continuing work of all of these researchers and many others is a reason for hope that in the future, there will be clearer answers on the origins of irritable bowel syndrome and related disorders.

 

Representatives Carson, Payne, Lofgren and Faso Co-Sponsor HR 1187 for Functional Gastrointestinal and Motility Disorders

According to IFFGD and the official Congressional legislative database Congress.gov, four members of the U.S. House of Representatives signed on in April and thus far in the first half of May 2018 as co-sponsors of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017. They are Representative Andre Carson (D-IN-7), Representative Donald Payne, Jr. (D-NJ-10), Representative Zoe Lofgren (D-CA-19) and Representative John Faso (R-NY-19).

Representative Carson, who was first elected the House of Representatives in an special election in 2008, is now serving his fifth full term in Congress. He represents Indiana’s 7th District in the central part of the state, which encompasses most of Marion County and the city of Indianapolis.  According to Representative Carson’s official House website, he  has a record of supporting health care and veterans’ issues. As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are at disproportionately high risk for functional gastrointestinal disorders like IBS, which are already very common in the general population. He was also a co-sponsor of HR 842, and HR 2311, previous versions of the same bill that did not pass. IBS Impact thanks him for his long support of the functional gastrointestinal disorders community.

Representative Payne, who was first elected to the House of Representatives in 2012 to complete his father’s term after Donald Payne, Sr.’s death, is currently serving his third full term in office. He represents the 10th District of New Jersey, which includes parts of Essex, Union and Hudson Counties. According to Representative Payne’s official House website, he currently belongs to the House’s Men’s Health Caucus and has a record of supporting several health-related bills. IBS Impact appreciates his support of HR 1187.

Representative Lofgren is now serving her twelfth term in Congress. She represents the 19th District of California, which encompasses parts of Santa Clara County, including most of the city of San Jose and the cities of Morgan Hill and Gilroy. According to Representative Lofgren’s official House website, she currently is a member of numerous caucuses for specific medical conditions and  has a record of supporting health care issues, This notably includes co-leading a 2014 letter from several Representatives to the National Institutes of Health advocating for increased research funding for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), which often overlaps with irritable bowel syndrome (IBS). She was also a co-sponsor of HR 2311, a previous version of HR 1187 that did not pass. IBS Impact thanks her for her continued support of the functional gastrointestinal disorders community.

Representative Faso is serving his first term in the House of Representatives. He represents New York State’s large and wide-ranging 19th District, which is comprised of all of Columbia, Delaware, Greene, Otsego, Schoharie, Sullivan, and Ulster Counties, and portions of Broome, Dutchess, Montgomery, and Rensselaer Counties in the Mid-Hudson Valley, Capital Region, Catskills and Central New York. According Representative Faso’s official House website,  he has already supported several legislative efforts related to health and veterans. IBS Impact appreciates his co-sponsorship of HR 1187.

In officially supporting HR 1187, Representatives Carson, Payne, Lofgren, and Faso join Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, and co-sponsors, Representatives Mark Pocan (D-WI-2), Eliot Engel (D-NY-16), Dave Loebsack (D-IA-2), Alcee Hastings (D-FL-20) Tom Suozzi (D-NY-3), Ron Kind (D-WI-3), and Gwen Moore (D-WI-4).  If you are a constituent of any of these legislators, please take a few minutes to call, write, or contact him or her on social media to thank him or her for his  support of the functional gastrointestinal and motility disorders community.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 1187, please see the previous post from March 21, 2017 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 2016 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 1187 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 1187.

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 1187 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 115th,  the necessary number of sponsor/cosponsors must be reached by December 2018. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 1187 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, HR 842 in 2014 and HR 2311 in 2016. 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 1187 as they occur. Links to the social media sites can be found on the right sidebar of the blog.

10 Years and 11 IBS Awareness Months: Progress for the IBS Community Continues in 2018

by Nina Pan, IBS Impact founder and primary blogger for IBS Impact.

Five years ago, on April 24, 2013, I wrote a post for IBS Awareness Month that began with some reflections on my personal experiences with IBS, as well as my motivations for IBS Impact. At that time, I had been living with IBS for over five years, and 2013 marked my sixth April with IBS. I observed how for many of us, dealing with the numerous actual or potential effects on a day to day basis often makes it difficult to recognize when progress is being made, either for us as individuals, or for the IBS community as a whole. I stated that it is only with the passage of time that I had begun to realize how some things are indeed changing, albeit slowly, for the better. In the rest of the post, I pointed out numerous areas in IBS research, IBS treatment, understanding of the impact of IBS on quality of life, increased societal support and advocacy that had seen concrete, positive change in just the five years and six IBS Awareness Months I had personally experienced.

On April 10, 2014 ,  April  14, 2015, and April 29, 2016,  and April  30, 2017, I reported in a similar vein, on progress for the IBS community in each respective years, Now, continuing the tradition during my own tenth year with IBS, just a week after my eleventh IBS Awareness Month, once again, I can observe many  small steps forward in just a single year.

Progress in the science of IBS:

In the past year, the science of IBS has continued to expand in many areas. These include, but are not limited to,  genetics, the pathophysiology of pain in post-infectious IBS, diet, cognitive behavioral therapy, the subtyping of IBS, and  the prevalence and impact of people having more than one functional GI diagnoses.  Particularly intriguing and important among published IBS research in the past year are a study mentioned on this blog on June 14, 2017 that links for the first time, IBS-related alterations in the gut microbiome to changes in the brain, and another, released just a month ago in April 2018, in which DNA variants on chromosome 9 in similar areas to those controlling the timing of puberty appear to be associated with some instances of IBS in women, though not in men.

These varied endeavors are taking place in or with the involvement of many scientists from many countries, and very often, volunteers with IBS from multiple countries per study as well.  See other posts in the Research category of the blog sidebar, the IBS studies page of our main website  or our Facebook or Twitter feeds to see the range of research news and clinical trial opportunities publicized over the most recent several months. The annual Digestive Disease Week international gastroenterology conference taking place shortly in early June traditionally provides even more state of the science research news each year.

In the fall of 2017, as posted on this blog on September 30, 2017, Macquarie University in Sydney, Australia and the County Durham and Darlington NHS Trust Contact Me-IBS  pilot project in the United Kingdom each established registries for adults interested in the future possibility of becoming volunteers for functional GI/IBS research. If the NHS endeavor proves successful, the hope is to expand it to other locations in the United Kingdom. In each case, the goal is to facilitate communication and connection between researchers seeking willing people with IBS and those affected individuals who wish to do their part in contributing to the science of IBS.

Progress in the diagnosis and treatment of IBS:

 Over the past three and a half years, this blog has often reported on the development of Rome IV criteria, the latest update to the international symptom-based diagnostic criteria for functional gastrointestinal disorders like IBS, which was officially published and presented to the international gastroenterology community in May 2016.  This latest update reportedly involved over 100 experts from numerous countries. The Rome criteria, which are said by leading IBS researchers to be 98% accurate for most people with IBS symptoms, have been in existence in some form for 27 years, although research shows that many people with IBS and medical professionals who do not specialize in IBS remain unaware of this. Since the launch of Rome IV and continuing in the past year, the Rome Foundation members have made Rome IV print and online materials and webinars available to educate fellow health care professionals, including new outreach to primary care physicians and those from regions of the world historically underrepresented in the field. The Foundation also initiated mentoring to promising young functional GI researchers, and in March 2018, the print version of “Neuromodulators for Functional Gastrointestinal Disorders (Disorders of Gut−Brain Interaction): A Rome Foundation Working Team Report was published in the journal Gastroenterology to provide guidance on medication issues.

Several investigational medications and other non-pharmaceutical treatment options are always in various stages of the research pipeline in various parts of the world. In the summer of 2017, the National Institute for Health and Care Excellence (NICE) in the United Kingdom issued a Final Appraisal Determination, clearing the way for eluxadoline (brand name Truberzi in Europe, Viberzi in North America) to be available through the National Health Service for adults with IBS with diarrhea (IBS-D).

In January 2018, plecanatide, also known by the brand name Trulance, and previously available in the United States for use in chronic idiopathic constipation, was approved by the U.S. Food and Drug Administration (FDA) for treatment of irritable bowel syndrome with constipation (IBS-C). The FDA, in its regulatory role in early 2018, also solicited feedback from U.S. women using Lotronex (alosteron hydrochloride) and facilitated a workshop for scientists, organizations, patients and other stakeholders to discuss IBS-C in children.

According to various social media IBS professional sources, a centralized directory of GI psychologists and hypnotherapists is currently in development and due to be available very shortly.

Progress in understanding the impact of IBS and the barriers that remain:

In April 2018, in time for IBS Awareness Month, the Gastrointestinal Society in Canada released a 38 page 2018 IBS Global Impact Report, which is available for download on its website.  This report was funded and facilitated by the international pharmaceutical company Allergan, and overseen by a steering committee composed of Maura Corsetti, MD of the University of Nottingham in the United Kingdom, Jan Tack, MD of the University of Leuven in Belgium, Gail Attara, President and CEO of the Gastrointestinal Society, and Michelle Sewell, IBS support group representative for the Gastrointestinal Society. The report incorporated  peer-reviewed literature and surveys of people with IBS and families in numerous countries, including Canada, the United States, Australia and Spain over the last several years, and made recommendations accordingly. Some of this data was drawn from the Gastrointestinal Society’s own 2016 national survey across Canada of adults with IBS and parents of children with IBS. This Canadian survey was previously discussed on this blog on January 29, 2017 and January 26, 2016.

In early 2018, the International Foundation for Functional Gastrointestinal Disorders (IFFGD), in the U.S., which has transitioned to new leadership over the past year, has begun reaching out to some of its active FGID-affected members and families for “patient advisory” roles to gain feedback on IFFGD materials and programs. IBS Impact appreciates the effort to encourage more formal patient-organization collaboration.

Progress in societal supports for people with IBS:

The IBS Network in the United Kingdom continued its efforts  this past year in its ongoing efforts to expand the availability of local, in-person self-help/support groups and group facilitator training for people with IBS in the UK. as originally reported by this blog on October 23, 2016 and January 13, 2017.

Monash University in Australia, developers of the low-FODMAP diet that is effective for reducing symptoms for many people with IBS, continues to test specific foods and product brands in several countries, in some cases, leading to revision of its previous recommendations.  It also adds new countries as research and resources permit. Monash also has a low-FODMAP certification program, whereby food product manufacturers whose products have been tested by Monash as appropriate for the diet, may display an official certification symbol to alert consumers.In the last year, Monash launched a new, more comprehensive website that can be found at the link..

Progress in awareness and advocacy:

Over the past several months, the American Neurogastroenterology and Motility Society has initiated a series of several chats on IBS and functional GI disorders on Twitter or Facebook that are increasing awareness and education among patients, families and other professionals. One such Twitter chat was mentioned on this blog on December 19, 2017. and there have been several others. Click on the ANMS Facebook page link above to see two chats scheduled for this month. It is hoped that this effort will be ongoing.

The International Foundation for Functional Gastrointestinal Disorders has  continued to shepherd the Functional GI and Motility Disorders Research Enhancement Act through its fourth attempt at passage by the U.S. House of Representatives, with the support of IBS Impact and other groups and individuals. After three previous attempts in the three previous Congresses,  it  was reintroduced in the the current 115th Congress under a different Act number, HR 1187, in March 2017 and has received bipartisan support from Representatives. In April 2018, HR 1187 gained two more co-sponsors from two more states, for a current total of one sponsor and nine co-sponsors from six states.   See the Legislation category, HR 1187,  HR 2311 HR 842 and HR 2239 subcategories in the right sidebar of this blog for more on this history of this important Act.

IFFGD has also been an ongoing advocate for veterans, who are disproportionately at risk for functional gastrointestinal disorders like IBS.  IFFGD reported in the fall of 2017 that the the U.S. Department of Veteran’s Affairs had extended the time by which symptoms must be evident in order for veterans to be potentially eligible under this provision. Additionally, in April 2018, IFFGD reported that the federal government budget allocation through September 2018 includes the largest increase for digestive disease funding for several years. While of course, not all of this is earmarked specifically for functional GI disorders/IBS, since federal funding makes up a large proportion of overall research budgets, this is a positive development. Both of these news alerts can be found at this link.

Within a period of about two weeks in July 2017, leading GI psychologists/researchers Laurie Keefer, PhD, of Icahn Mount Sinai,  Olafur Palsson, PsyD of the University of North Carolina,  and Sarah Kinsinger, PsyD of Loyola University, all received mainstream media attention for their work in gut-directed hypnotherapy in the U.S. national NBC News, the local Chicago FOX News affiliate,  and the national magazine, Women’s Health. As gut-directed hypnotherapy has decades of strong, international research evidence for helping at least 70% of people with IBS to reduce symptoms long term, but it is not well-known outside the functional GI  professional community, let alone in the general public, it was a very positive step to see so much constructive coverage from major media outlets.

IBS Impact continues to make incremental updates to this blog and social media several times a month and to its main website several times a year,amassing archives that thus far cover almost seven years of quality, evidence-based material, resources and personal experiences of those who blog for us.  The number of followers of this blog and our social media accounts continues to increase. Cumulatively, IBS Impact now reaches readers in over 140 different countries and territories on every continent of the globe.

These are just a handful of examples of progress for the IBS community in the past year. Cumulatively, there are many more. Obviously, we still have very far to go before all people with IBS have all the medical and social supports that we need for fully productive lives, with or without IBS,  but we have come far as well. There are reasons for hope, especially if more of us do our part for self-advocacy and awareness in the years and IBS Awareness Months to come.