Clinical Trial: DEFINE Study to Develop a Test for IBS at the University of North Carolina, August 2015

August 25, 2015

The University of North Carolina Center for Functional GI and Motility Disorders in Chapel Hill, one of the world’s major centers for diagnosis, treatment and research of irritable bowel syndrome is seeking adult volunteers for a study formally titled, “The development and validation of a blood test to identify IBS: DEFINE (Diagnostic Evaluation of IBS and Functional GI Networks.” The primary investigator is Yehuda Ringel, MD of UNC, and the IRB #is 13-2900.

Potential participants may be eligible for this study if they are at least 18 years old, have experienced any of the following gastrointestinal symptoms for at least 3-6 months without a definitive diagnosis or definitive testing: abdominal pain or discomfort, bloating, constipation and/or diarrhea.

Volunteers completing the study will receive up to $214 for their time and travel. Interested individuals should contact Charles Mclendon at 919-843-1003 or aycockmc@email.unc.edu

The above information has been summarized from the Summer 2015 issue of Digest, the UNC Center quarterly newsletter Any questions or concerns should be directed to the UNC contact person above.

Previous posts on open clinical trials for IBS can be found by clicking the clinical trials category in the blog archives on the upper right sidebar of this blog. We also have a page for IBS studies on the main IBS Impact site. The research and links pages and the July 26, 2011 post provide additional general resources.

We welcome researchers affiliated with academic, medical or pharmaceutical entities, or reputable organizations representing IBS or related or commonly overlapping conditions, to contact us directly with additional studies they wish to be considered for posting. Contact links for the founder/listowner and the webmaster can be found on the home page of the main IBS Impact website.

IBS Impact makes these study announcements available for general information, and encourages its members and site visitors to make their own individual, informed choices about their potential participation in any study.  IBS Impact, as an entity, is not directly affiliated with any research sponsor and receives no funding from any source for studies or links we feature on this blog, the main site or social media.


IBS Network Twitter Chat To Be Held Tuesday, August 18, 2015

August 16, 2015

The IBS Network, the national charity for irritable bowel syndrome in the United Kingdom, invites anyone with a Twitter account to take part in an hour-long chat on Tuesday, August 18, 2015 from 7:00-8:00 p.m. (19:00-20:00) GMT. The chat, which will be moderated by two members of the IBS advisory board, will focus on four questions for discussion. To paraphrase, they are: Is the name “irritable bowel syndrome” a help or a hindrance?  How do we enable people to be open about symptoms? How would you increase awareness, advocacy and empowerment? Is it “just” IBS?

The IBS Network encourages participants to consider their answers in advance, given the Twitter limit of 140 characters per tweet. Explanations of chat procedures and the full original wording of the IBS Network can be found on its website at the link below.

http://www.theibsnetwork.org/upcoming-event/twitter-ibs-chat/

IBS Impact encourages readers, especially those from the United Kingdom, but also interested parties elsewhere, to consider this brief public discussion, which can provide the IBS Network with feedback from the IBS community and create some public awareness for our issues on social media.  Thank you to the IBS Network for alerting IBS Impact to this opportunity and inviting participation.


A Quarter-Century of the Americans With Disabilities Act and What It Means for IBS.

July 26, 2015

Today is the 25th anniversary of the signing of the Americans with Disabilities Act of 1990 (ADA) into United States law by then-U.S. President George H.W. Bush. The ADA is a broad civil rights law guaranteeing certain forms of legal equality and access to people with all types of disabilities and potentially disabling chronic medical conditions. It is not the only disability-rights law in the United States, either prior to or after 1990, but it is one of the broadest and best known that has been a model for similar laws and public policies in several other countries of the world.

In 2008, in the administration of the younger President George W. Bush, following widespread continued advocacy, the ADA Amendments Act was signed. The ADA Amendments Act’s purpose was to the original intent of the legislators who had worked with the disability community to develop the provisions of the ADA, by clarifying some definitions that had been improperly eroded by court decisions in the intervening years.  Among the clarifications added were that covered disabilities can include those impairing major bodily functions, such as digestion, that they remain covered disabilities even if they are conditions whose effects may come and go episodically, and that they are still covered disabilities. even if medications or other measures are available to mitigate its effects.  These passages clearly describe many cases of irritable bowel syndrome. Many people with IBS also have commonly overlapping long term health conditions or unrelated disabilities which are also covered under the ADA.

Below are some previous posts from this blog that address the ADA in detail. Though they were written a few years ago, their content is still valid today. It is hoped that readers in the U.S. will peruse them to learn accurate information and resources regarding the law and its use to protect their rights as people with IBS.  For readers from all nations, please also read to learn more about the history and philosophical underpinnings of the ADA that provide lessons to all people with IBS on pride, openness, awareness and self-advocacy as a community, and which inform IBS Impact’s efforts as to what is possible with the steadfast commitment of many individuals, groups and organizations over many years.

The Americans with Disabilities Act and Irritable Bowel Syndrome (IBS) from 2012.

Irritable Bowel Syndrome (IBS) Advocacy Does Matter from 2014

 

To those who celebrate a quarter-century of the ADA today, thank you, and may we never forget how far we have come or how far we have left to go.

 


Virtual Advocacy Day for Functional Gastrointestinal and Motility Disorders Is Tuesday, July 21, 2015

July 20, 2015

IFFGD/the Digestive Health Alliance has scheduled its annual event, Virtual Advocacy Day (known in past years as Congressional Call-In Day), in support of HR 2311, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015 for tomorrow, Tuesday, July 21, 2015

Currently, HR 2311 is officially supported by 3 members of the U.S. House of Representatives, representing both political parties and  3 states.  They are the initial sponsor, Representative F. James Sensenbrenner, Jr. (R-WI-5) and co-sponsors, Representative André Carson (D-IN-7), and Representative Zoe Lofgren (D-CA-19).

Virtual Advocacy Day is an excellent opportunity for constituents of current supporters to express their appreciation to their legislators, as well as  for U.S. citizens whose Representatives are not yet co-sponsors to advocate for their support. On June 21 IFFGD/DHA and other IBS sites, including IBS Impact, strongly encourage all U.S. citizens with all functional gastrointestinal or motility disorders (for example, irritable bowel syndrome, GERD, gastroparesis, chronic idiopathic psuedo-obstruction, Hirschsprung’s disease,  functional (recurrent) abdominal pain, cyclic vomiting syndrome, functional dyspepsia and many others, which collectively affect at least 25% of the population), concerned family members, friends, co-workers or classmates, health and human service professionals who work with people with functional GI or motility disorders, to call, write  and/or tweet their Representatives about HR 2311. A strong, unified presence by many voices on the same day will make an impression that can pave the way for additional support.

If you know the member of the federal House of Representatives who represents you, the direct telephone number for his or her Washington, DC office and an email contact form can usually be found on his or her official website, which can be located by an Internet search of his or her name. Keep in mind that your Representative may be different from before because of the 2012 elections, district boundaries that may have been re-drawn, or if you have moved. If you are not sure who is your Representative, you can look up this information at  http://www.house.gov/representatives/find/ or call the U.S. Capitol switchboard at (202) 225-3121.

During business hours Eastern time tomorrow, July 21, if you choose to call your Representative’s office, identify yourself as a constituent and give your name and the town or city in which you reside. Ask to speak to the staff member who deals with health issues. You may be asked for your street address or phone number. This is to confirm that you do live in the Representative’s district and/or to allow the office to contact you to follow up. If you are nervous, in advance of calling, write down notes for yourself or a short presentation to read. You do not have to be an excellent speaker, just a person that the legislator and his or her staff will see as a real person with real needs. Be polite, keep the conversation on topic and limited to a few minutes, and thank the staff person for his or her time. At a minimum, clearly state that you wish for the Representative to support HR 2311, or express your thanks if he or she has already signed on.

Beyond this, you may choose to briefly explain your personal interest and/or experience with functional GI or motility disorders (for example, have had/family member has had irritable bowel syndrome for X years and has had difficulty finding appropriate treatment) and/or why functional GI and motility research and education provided for in HR 2311 are important in general such as what a functional GI or motility disorder or  your specific one of interest, like IBS,  is, how many people it affects, usually affects both genders, all ages, all ethnic groups  that IBS/functional GI disorders are usually chronic. often misdiagnosed or mistreated and effective treatments, providers and local community services are limited. IFFGD/DHA has suggested talking points on its website for Virtual Advocacy Day 2015. Thank the staff member again before ending your call. If the staff member who deals with health issues is not available, leave a brief message with the above details on voice mail or with the staff member who answers the phone.

If emailing, see some suggestions in the May 18, 2015 post. It is rare for such advocacy calls and emails to result in an immediate commitment to a particular bill, but one purpose of Virtual Advocacy Day is to create awareness of the needs that affect large numbers of people and momentum for increasing Congressional support.

For more information on HR 2311 and advocacy strategies, including links to the bill, click on the HR 2311 category in the right sidebar of this blog to see all posts on this topic.

IBS Impact urges all U.S. citizen readers of this blog to participate in the important and easy advocacy effort and to spread the word among your supportive relatives, friends and functional GI and motility disorder groups.  The progress of HR 2311 is in our hands.

Check back on this blog or join IBS Impact’s Facebook page or Twitter feed for further updates on HR 2311 as they occur. Links to the social media sites can be found on the right sidebar of the blog.


Representative Lofgren of California Co-Sponsors HR 2311 for Functional Gastrointestinal and Motility Disorders

July 13, 2015

According to IFFGD/the Digestive Health Alliance and the official Congressional legislative database Congress.gov, Representative Zoe Lofgren (D-CA-19) has recently signed on as a co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015.

Representative Lofgren is now serving her eleventh term in Congress. She represents California’s 19th District, 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 has a record of supporting health care issues, including 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).

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

In officially supporting HR 2311, Representative Lofgren joins Representative F. James Sensenbrenner, Jr. (R-WI-5) , who is the initial sponsor, and was also the initial sponsor of two previous versions beginning in 2011, and the first co-sponsor, Representative Andre Carson (D-IN-7), who was a previous co-sponsor in 2013-2014. If you are a constituent of Representative Sensenbrenner or Representative Carson, please thank them for their ongoing commitment to the FGIMD Research Enhancement Act as well.

According to the information on Congress.gov, it appears that the bill is currently under consideration in the Subcommittee on Health. Click on the link above if you would like to see a list of its members.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 2311, please see the previous post from May 18, 2015 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 2014 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 2311 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 2311.

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 2311 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 114th,  the necessary number of sponsor/cosponsors must be reached by December 2016. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 2311 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 and HR 842 in 2014. 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 2311 as they occur. Links to the social media sites can be found on the right sidebar of the blog.


Online Clinic for Bladder, Bowel and Digestive Health Available July 6-10, 2015

July 6, 2015

TalkHealth, a social media community in the United Kingdom that provides health information and online forums, and monthly “online clinics” where participants can ask questions of health experts and organizations for a given category of conditions, is currently conducting its annual Bladder, Bowel and Digestive Health Clinic.

TalkHealth is presenting this month’s clinic in cooperation with NHS Choices, the Bladder and Bowel Foundation, The IBS Network, which is the U.K. national charity specifically for irritable bowel syndrome, and PromoCon, a national service of Disabled Living for adults and children facing continence issues. The 2015 Bladder, Bowel and Digestive Health Clinic, which is an online forum, is currently open and accepting questions for the above dates only. Readers can access it by clicking the above link.

Some past clinic topics for various health conditions, including the 2013 and 2014  bladder, bowel and IBS clinics, and the August 2013 clinic for chronic fatigue syndrome (also known as myalgic encephalomyelitis) or fibromyalgia, both of which commonly overlap with IBS, are archived on the TalkHealth website, although they no longer accept questions

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


IFFGD/Digestive Health Alliance “Advocacy: Why Do It?” Tweet Chat Event, June 30, 2015

June 29, 2015

IFFGD/the Digestive Health Alliance will be conducting an open Tweet chat on the topic of “Advocacy: Why Do It?” tomorrow, Tuesday, June 30, at 4:30 PM Eastern Time. To see the questions to be discussed and instructions for participating, please click the following link.

http://www.dha.org/advocate-change/legislative-activities/legislative-updates/2260/advocacy-why-do-it-tweet-chat-tuesda

This Tweet chat is in preparation for Advocacy Day,  IFFGD/DHA’s annual day encouraging the IBS/functional gastrointestinal disorders community in the U.S. to contact legislators regarding the Functional Gastrointestinal Disorders Research Enhancement Act (currently HR 2311) and other pending bills of interest to our community.  This year’s Advocacy Day will be on July 21, 2015.  More detailed information will be shared on this blog as it becomes available.

As an IBS advocacy and awareness site, IBS Impact encourages all U.S. citizen readers who are available at the above time and have Twitter accounts to consider joining in the discussion.

 

 

 


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