Thoughts for Invisible Disabilities Week, October 15-21 2017

October 15, 2017

The Invisible Disabilities Association, a not-for-profit organization in Colorado founded two decades ago by the spouse of an invisibly disabled person,  has designated this week as its annual Invisible Disabilities Week. An invisible disability is any disability or ongoing medical condition that may have disabling effects that may not be readily apparent to casual observers. While any disability, visible or invisible, may present physical, psychological or societal barriers at least some of the time,  there often are specific challenges to others’ awareness and understanding when invisible disabilities cannot be seen.

Many of us with irritable bowel syndrome (IBS) know this well. Almost all of us can relate to one or more of the following questions or considerations at some point in our journey with IBS. Do we tell family members, friends, acquaintances, employers, teachers and classmates about IBS? How much and how often do we discuss it if we do? Do they believe us? Do they– and medical professionals– believe IBS pain, exhaustion, GI symptoms, stress, commonly co-occurring conditions like anxiety or depression and other non-GI symptoms are real and worthy of help? Why do they say things like, “You look good,” when we’re in bad shape? Do they really get it? If they do get it, will they continue to support us months or years later when IBS, as a chronic, incurable condition, doesn’t go away? If they don’t get it, is it worth trying to educate or not? Why are there not better medical options for our poorly understood condition?  Why don’t we have more resources related to X? Why doesn’t some celebrity come along and donate millions for a cure?

It is well-known in the IBS community, both anecdotally and through research, that many  people with IBS are isolated. Some do not have a diagnosis or support for years. Some withdraw from discussing IBS with others, inside or outside of the IBS community, because of negative interactions or  disappointing symptom management results. Still others seek information and help from various IBS forums, but unless they have other disabilities or medical conditions, some of which commonly overlap with IBS and others which are separate, they often are not aware of the common, similar experiences we share with groups affected by other invisible disabilities and health conditions. While gaining that knowledg may not help the medical situation per se, some people with IBS gain perspective and comfort in knowing that we are not alone and in finding a certain solidarity with other health communities.

According to the IDA, because there are so many types and levels of invisible disabilities and individual people are also affected quite differently, the organization chooses not to list or focus much on specific diagnostic labels. Most of their resources and awareness materials are applicable to a wide range of people with an equally wide range of invisible disabilities.

IBS Impact encourages readers to check out the site and see if anything is helpful to them. Also, for those so inclined, take on the challenge with which the IDA presents us this week, and talk to people or share something on social media about IBS.

 


Registries for Irritable Bowel Syndrome (IBS) Research Volunteers Created in the United Kingdom and Australia

September 30, 2017

In recent weeks, IBS Impact has learned that two separate entities, the County Durham and Darlington NHS Foundation Trust in the United Kingdom, and Macquarie University Faculties of Human Sciences and Medicine and Health Sciences in Sydney, Australia have established new, secure registries for those who are interested in volunteering for research studies.

The Macquarie registry is for all adults with any functional gastrointestinal disorder  IBS is the most common FGID. Information can be found here.  Macquarie University Functional Gastrointestinal Disorder Research Volunteer Registry.

The County Durham and Darlington NHS Foundation Trust registry is specific to IBS and is also limited to adults at this time. According to a September 29, 2017 announcement on the NHS National Institute of Health Research site.  it is part of a five year study to encourage those with IBS to be aware of and seek care and to increase participation in clinical trials. If the registry succeeds, the hope is to expand it nationwide in the future. The official website for the service, to be known as Contact ME-IBS, is linked here.

In each case, placing one’s name and contact details on the registry does not guarantee that one will be contacted or be eligible for any specific research study, as requirements for volunteers vary with each individual study. Similarly, there is no obligation to participate in a specific study if contacted. It is simply an expression of possible future interest, allowing researchers to be aware of and efficiently reach out to potential participants willing to be recruited within the IBS/functional GI disorders community.

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 registries, 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.


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.


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.


Representative Pocan of Wisconsin Co-Sponsors HR 1187 for Functional Gastrointestinal and Motility Disorders

May 8, 2017

According to IFFGD and the official Congressional legislative database Congress.gov, Representative Mark Pocan (D-WI-2) recently signed on as the first co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017.

Representative Pocan is serving his third term in the House of Representatives. His district, the 2nd Congressional District of Wisconsin, encompasses Dane County, Iowa County, Lafayette County, Sauk County and Green County and parts of Richland and Rock Counties, including the state capital of Madison and environs. According to his official House website, Representative Pocan is a member of the House Appropriations Committee where he sits on the Subcommittee on Labor, Health and Human Services and Education, and he supports various health and veterans’ issues. Functional gastrointestinal disorders like IBS disproportionately affect military veterans and service members. He was also a co-sponsor of the most recent previous version of the Act, HR 2311 in 2015-2016, which did not pass.

If you are a constituent of Representative Pocan, please take a few minutes to write or call him with your thanks for his continued  support of the functional gastrointestinal and motility disorders community.

In officially supporting HR 1187, Representative Pocan joins Representative F. James Sensenbrenner, Jr. (R-WI-5) , who is the initial sponsor. If you are a constituent of Representative Sensenbrenner, please thank him as well.

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.