Updates to the IBS Impact.com Main Website, September 2017

September 16, 2017

IBS Impact has recently completed the latest round of updates to many pages of our main website,  IBS Impact.com,

The home page, advocacy page, research page, IBS studies page, and IBS and children page all have additions or updates of content or links, or deletions of outdated links in the last three months. The United States, United Kingdom, and Australia are all represented in these most recent changes, with several more countries represented in existing material.

Readers interested in the most recent news, events, clinical trial and advocacy opportunities, and articles between main site updates, may follow this blog or our Facebook or Twitter feeds (links found on the lower right sidebar of this blog and in the light blue footer sections below each page of the main site).  Each has slightly different information on an ongoing basis. Regardless of one’s interest in IBS, whether personal or professional, most users should find useful and interesting material and links. The current site reflects resources in six countries which are among the top sources of hits to the site and this blog, with occasional references to several others.

Because of the redesign and transfer of the site to new hosting twice in 2015 and 2016, some links embedded in older posts on this blog or search engine results relating to IBS Impact.com may result in error messages, but you should still reach the site itself. If so, please use the navigation links at the top of the site to reach the desired subpage.  No information that is still currently useful has been removed from the site, although in some cases, the location has changed. Only outdated details and occasional defunct links for which there is no replacement available at this time have been deleted. The date of last update is indicated at the bottom of subpages that change periodically.

Please feel free to check out the site here. Our goals with the website, blog and social media are to provide a varied range of current, scientifically accurate, reputable information and resources to people with IBS and their families and friends, and to encourage informed choices, proactive self-advocacy and worldwide public awareness of IBS, and the unmet medical or social needs many of us face as a result of IBS.

IBS Impact as an entity, is not directly affiliated with any other organization, site, or research sponsor and receives no funding for the information we post on the main website, this blog or our Twitter and Facebook pages. We do welcome constructive collaboration and value the many individuals, websites, organizations,  and clinical and research entities who continue to support, encourage and amplify our efforts in various ways to benefit the cause of IBS awareness and advocacy worldwide.

Comments, suggestions, corrections of outdated links, article submissions, and clinical trials or surveys by researchers affiliated with academic, medical, or pharmaceutical entities or reputable evidence-based organizations representing IBS or commonly overlapping conditions in any country are all welcome and will be thoughtfully considered. A contact form  can be found on the main site, or comments can be left on this blog.  Thank you to all of our readers and social media followers for your interest and participation.


IFFGD Advocacy TweetChat, September 5, 2017, Prepares for Virtual Advocacy Day 2017

August 30, 2017

The International Foundation for Functional Gastrointestinal Disorders (IFFGD) has announced that it will be holding a Tweet Chat beginning at 1:00 PM Eastern Time on Tuesday, September 5, 2017. This is an opportunity for people with functional gastrointestinal and motility disorders and those who support us to discuss advocacy goals for our community. This is in preparation for Virtual Advocacy Day 2017 the following week, Tuesday, September 12, 2017. Virtual Advocacy Day is IFFGD’s annual day on which it encourages U.S. citizens to contact their members of the federal House of Representatives in support of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act. (HR 1187). For information on HR 1187, see the March 21, 2017 and July 14, 2017 posts. For information on Virtual Advocacy Day, see IFFGD’s page linked here.

IFFGD’s Twitter handle is @IFFGD and the chat will be using the following hashtags #IFFGDCHAT, #HR1187 and FGIMD.

As irritable bowel syndrome (IBS), is the most common functional gastrointestinal and motility disorder, IBS Impact strongly encourages readers who are available at the scheduled time and date to join with self-advocates with other FGIMDs in the Tweet Chat, Virtual Advocacy Day or both. Amplifying our voices as FGIMD-affected people, along with others in similar situations, can increase awareness of HR 1187 and our needs to the public and to Congressional members with the power to help our community.


Online Study: Cognitive Mediators of Bowel Discomfort, Swinburne University, Australia, August 2017

August 12, 2017

The following study currently seeking men and women at least 18 years old with gastrointestinal conditions was received directly from the research team and is posted at their invitation. We are advised that the 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 in the description.

Swinburne University
Do psychological concerns drive your bowel discomfort – help us develop a scale to better measure these processes.
Psychological distress and gastrointestinal symptoms commonly occur together and are frequently reported in community samples. Your responses will help us better understand how thinking patterns impact upon gastrointestinal discomfort. Further your participation will also help us to develop a new scale that can help better identify and target psychological processes associated with gastrointestinal discomfort.  The study involves completing an online questionnaire which should take approximately 60 minutes to complete.

Go into the draw to win 1 of 4 $100AUS Amazon.com vouchers
At the end of the study you are welcome to add your email address (stored independently from the questionnaire data) in order to go into a draw to win 1 of 4 $100AUS Amazon.com vouchers. Winners will be drawn on the 31st of October 2017.

Who can participate?
Anyone over the age of 18 is eligible to participate in the study.
How to participate?
To participate, please click on the link below:
https://swinburnefhad.au1.qualtrics.com/jfe/form/SV_1LK9FqocoRelzCZ

For more information, please contact the research team:
Principal Investigator: Dr Simon Knowles, (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), Ms Sarina Cook (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.


NICE in the United Kingdom Gives Positive Recommendation for Eluxadoline (Truberzi) for IBS-D

July 31, 2017

Today, via the social media of the IBS Network, the U.K. charity for irritable bowel syndrome, IBS Impact received the following linked press release from Allergan, the pharmaceutical company for eluxadoline, which is known in the U.K. and throughout the European Union by the brand name Truberzi. This is the same medication which is known in the U.S. and Canada by the brand name Viberzi. It is a twice-daily oral medication for irritable bowel syndrome with diarrhea (IBS-D)

According to the press release, dated July 27, 2017, the National Institute of Health and Care Excellence, still known by its former acronym, NICE, issued a Final Appraisal Determination that the National Health Service (NHS) make eluxadoline available to adults with IBS-D who have not responded to, or for medical reasons, cannot use other IBS treatment interventions usually offered. If there is no appeal to this determination, this guidance will be published in August, and availability under the NHS is expected sometime this fall.

Eluxadoline was originally approved for use in the EU by the European Commission in September 2016, by the Food and Drug Administration (FDA) in the United States in May 2015 and by Health Canada in March 2017. It has been used successfully by many people with IBS-D throughout North America and the European Union in that time frame, but as reported by this blog on March 15, 2017, the FDA issued a warning to U.S. physicians that eluxadoline should not be prescribed to patients who do not have a gallbladder because of reports of many cases of serious pancreatitis and two deaths in that subgroup. We advise anyone considering any specific IBS medication or treatment to read available evidence-based information, to familiarize themselves with the benefits and risks, and to consult their own doctors as to if the given intervention is worth trying in their specific situations. IBS Impact focuses on awareness and advocacy and does not endorse particular interventions, but does encourage accurate and up to date information from reputable sources so that individuals with IBS and their families can make the most informed choices for their own needs and desires.


Representative Hastings of Florida Co-Sponsors HR 1187 for Functional Gastrointestinal and Motility Disorders

July 14, 2017

According to IFFGD and the official Congressional legislative database Congress.gov, Representative Alcee Hastings (D-FL-20) signed on yesterday as a co-sponsor of of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017.

Representative Hastings is serving his thirteenth term in the House of Representatives. His current district, the 20th Congressional District of Florida, encompasses parts of Broward and Palm Beach Counties, including parts of Miramar, Fort Lauderdale, and West Palm Beach.  Representative Hastings has a long record of supporting a wide range of health issues and is currently a member of the Congressional caucuses for numerous other specific chronic medical conditions and disabilities as seen on his official house website.

In officially supporting HR 1187, Representative Hastings 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),and Dave Loebsack (D-IA-2)  If you are a constituent of any of these legislators, please take a few minutes to call, write, or contact him on social media to thank him 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.


Representatives Engel of New York and Loebsack of Iowa Co-Sponsor HR 1187 for Functional Gastrointestinal and Motility Disorders

June 28, 2017

According to IFFGD and the official Congressional legislative database Congress.gov, Representative Eliot Engel (D-NY-16) and Representative Dave Loebsack (D-IA-2)  signed on earlier this month as co-sponsors of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017.

Representative Engel is serving his sixteenth term in the House of Representatives. His current district, the 16th Congressional District of New York, encompasses the northern portion of the Bronx, which is one of the boroughs of New York City, as well as parts of suburban southern Westchester County. Representative Engel is also a current member of the Subcommittee on Health, where HR 1187 is  under consideration.  See the linked website for a list of all current members. Representative Engel has a long record of supporting  a wide range of veterans’ issues and health issues, as seen on his official house website. 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 Loebsack is serving his sixth term in the House of Representatives. His district, the 2nd Congressional District of Iowa encompasses most of the southeastern region of the state including  the cities of Davenport, Iowa City, Clinton  and Ottumwa, among others. According to his official House website, Representative Loebsack is currently a member of the House Energy and Commerce Committee, which includes the Subcommittee on Health. He has immediate family members currently serving in the military, previously served on the House Committee on Armed Services, and also has a strong record of supporting veterans’ issues.

In officially supporting HR 1187, Representatives Engel and Loebsack join Representative F. James Sensenbrenner, Jr. (R-WI-5) , who is the initial sponsor and Mark Pocan (D-WI-2) ,the initial co-sponsor. All of these Representatives also supported the previous version of this Act, HR 2311, in 2015-2016, and Representative Sensenbrenner has been the initial sponsor for all four versions of the Act since 2010. If you are a constituent of any of these legislators, please take a few minutes to call, write or contact him on social media to thank him for his continuing 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.


New Updates to IBS Impact.com Main Website for June 2017

June 24, 2017

IBS Impact has recently completed the latest round of updates to many pages of our main website, IBS Impact.com.

A few links have been replaced with updated versions Several links, articles and new research studies seeking volunteers. have been added on the news footer, IBS page,  advocacy page, research page, IBS studies page, resources page, IBS and children page, family and friends page, and links page. The United States, United Kingdom, Canada, and Australia are all represented in these most recent content changes, with several more countries represented in existing material.

Technical issues that were hindering or preventing mobile navigation by smartphones and tablets have been resolved, and other minor adjustments were made to improve site stability. We hope that this will make it easier for more people to use the site.

Readers interested in the most recent news, events, clinical trial and advocacy opportunities, and articles between main site updates, may follow this blog or our Facebook or Twitter feeds (links found on the lower right sidebar of this blog and in the light blue footer sections below each page of the main site).  Each has slightly different information on an ongoing basis. Regardless of one’s interest in IBS, whether personal or professional, most users should find useful and interesting material and links. The current site reflects resources in six countries which are among the top sources of hits to the site and this blog, with occasional references to several others.

Because of the redesign and transfer of the site to new hosting twice in 2015 and 2016, some links embedded in older posts on this blog or search engine results relating to IBS Impact.com may result in error messages, but you should still reach the site itself. If so, please use the navigation links at the top of the site to reach the desired subpage.  No information that is still currently useful has been removed from the site, although in some cases, the location has changed. Only outdated details and occasional defunct links for which there is no replacement available at this time have been deleted. The date of last update is indicated at the bottom of subpages that change periodically.

Please feel free to check out the site here. Our goals with the website, blog and social media are to provide a varied range of current, scientifically accurate, reputable information and resources to people with IBS and their families and friends, and to encourage informed choices, proactive self-advocacy and worldwide public awareness of IBS, and the unmet medical or social needs many of us face as a result of IBS.

IBS Impact as an entity, is not directly affiliated with any other organization, site, or research sponsor and receives no funding for the information we post on the main website, this blog or our Twitter and Facebook pages. We do welcome constructive collaboration and value the many individuals, websites, organizations,  and clinical and research entities who continue to support, encourage and amplify our efforts in various ways to benefit the cause of IBS awareness and advocacy worldwide.

Comments, suggestions, corrections of outdated links, article submissions, and clinical trials or surveys by researchers affiliated with academic, medical, or pharmaceutical entities or reputable evidence-based organizations representing IBS or commonly overlapping conditions in any country are all welcome and will be thoughtfully considered. A contact form  can be found on the main site, or comments can be left on this blog.  Thank you to all of our readers and social media followers for your interest and participation.