UNC Online Chat: “Dietary Approaches and Probiotics” on February 7, 2012

January 30, 2012

The University of North Carolina Center for Functional Gastrointestinal and Motility Disorders has announced the next online chat in its “Evening with the Experts” series. It will take place Tuesday, February 7, 2012 from 8:00-10:00 p.m. Eastern time. Spencer Dorn, MD, MPH of the Center will be presenting on “Dietary Approaches and Probiotics” in regard to functional gastrointestinal disorders like IBS.

People with IBS, and/or their concerned family members and friends are encouraged to make time to attend and participate in this and other UNC chats, which are an excellent, unique opportunity to interact directly with leading researchers, ask questions and give them feedback about our needs and concerns.

Within the IBS community, there is often a great deal of interest from affected people in dietary issues, as well as much information of varying quality and scientific validity. This particular chat is a chance to get evidence-based and up to date information on the topic from experts in IBS and other functional GI disorders.

To participate in this or any UNC chat, go to the Center home page about 10 minutes before the starting time, click on the chat icon and follow the instructions given there. The current chat announcement on the Center site also includes a list of upcoming topics scheduled for the next few months.

Those who are unfamiliar with UNC’s online chat series may also find this previous post by IBS Impact on July 29 to be of interest.

EDITED TO ADD: The topic and presenter for this date have been changed by UNC. See the February 3 post.

 


Fiscal Year 2012 Budget for U.S. Government Increases Medical Research Funding

January 23, 2012

Last week, the International Foundation for Functional Gastrointestinal Disorders (IFFGD) posted a news item regarding the fiscal year 2012 budget allocations for medical research through the U.S. federal government. The entities that IFFGD reports as relevant to functional gastrointestinal and motility disorders include research for Gulf War-related illnesses through the Department of Defense, and general research funding through the National Institute of Diabetes, Digestive and Kidney Diseases (NIDDK), the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Institute on Aging (NIA), the National Institute of Environmental Health Sciences (NIEHS) and the National Center for Advancing Translational Sciences (NCATS). The above-named institutes are all subdivisions of the U.S. government agency known as the National Institutes of Health (NIH). According to IFFGD, NIH is “the largest source of funding for medical research in the world.” Its grants are available to scientists throughout the United States, as well as other countries. Different entities within NIH also support and host multinational resources such as the clinical trial database Clinical Trials.gov and medical journal databases Medline and PubMed that make a wealth of medical research information available to professionals and the public worldwide.

In most areas mentioned by IFFGD, including the total budget for the NIH as a whole, fiscal 2012 amounts are either new funding or increases over fiscal year 2011. Please note that figures IFFGD quotes are amounts allocated for each institute or program mentioned, not specific amounts for irritable bowel syndrome or functional gastrointestinal and motility disorders.

While these increases appear promising, further advocacy is always needed each year to make the specific needs of those of us with IBS or other FGIMDs known. In particular, if it is enacted, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act (HR 2239), introduced in the U.S. House of Representatives in June 2011, will direct NIH to budget for and support initiatives specific to our community. For background information on HR 2239, see IBS Impact’s July 6, 2011 post. For the most current status to date on the progress of HR 2239, see this December 18, 2011 post. U.S. citizens, to support IFFGD’s efforts on behalf of Gulf War veterans, who are statistically at very high risk of functional GI and motility disorders, see this post from August 25, 2011.

For IBS Impact members and visitors who are citizens of other nations, while these budget increases and advocacy efforts do not necessarily affect you immediately, because of the global nature of IBS, and the collaboration or exchange of information among scientists on every continent, ultimately there will be a ripple effect, just as U.S citizens with IBS benefit from the work of dedicated scientists elsewhere. May the small steps of gradual progress in the U.S. encourage other nations and self-advocates with IBS around the world to work toward better local and national systems that meet the needs and challenges of their own citizens and residents with IBS. IBS Impact hopes to give voice to as many of those efforts as possible.


People With Disabilities (IBS or Other): Give Feedback to the U.S. Social Security Administration

January 17, 2012

The following opportunity appeared today on the Facebook page of the Disability Rights Education and Defense Fund (DREDF), an established and well-regarded disability organization located in Berkeley, California. The request for interviews with people with disabilities currently receiving benefits from Social Security comes from the University of California-San Francisco Disability Statistics Center, which, according to the description below, is doing this needs assessment on behalf of the Social Security Administration.

This call for participants applies to people with disabilities receiving Social Security Disability Income (SSDI), Supplemental Security Income (SSI) or Social Security retirement benefits. There appear to be no restrictions on an interviewee’s geographical location within the United  States, and the telephone number provided to inquire about participating is toll free.

Many people with IBS receive disability benefits, either on the basis of IBS or at least one other disability or long-term medical condition. Some conditions that are statistically likely to overlap with IBS are fibromyalgia, chronic fatigue syndrome, endometriosis, interstitial cystitis, vulvodynia, and temporomandibular joint disorder. Many people with IBS also have mental health diagnoses, such as anxiety or depression, either as preexisting conditions or as a result of the demands of living with severe IBS. However, some people, including some IBS Impact members, have other impairments that are not related to IBS in any way. This post is directed at any Social Security beneficiary in any of those groups. This is a chance to give direct feedback on disability-related service issues to a U.S. government agency that eventually touches the lives of almost every U.S. citizen and many legal residents.  The full text of the announcement, as posted by DREDF, is below.

Important message from researchers at the UCSF Disability Statistics Center:

“Are you a person with a disability (including cognitive, hearing,
vision, or physical) who receives benefits from the Social Security
Administration? Benefits can mean SSI, SSDI, or retirement.

If so, we’d like to talk with you!!

Researchers at the UCSF Disability Statistics Center want to know
more about your experience applying for Social Security benefits
and your interactions with the Social Security Administration.
We are conducting a needs assessment for the Social Security
Administration so that they can communicate better with their
beneficiaries who have disabilities. Phone interviews will be
approximately a 30-45 minutes long.

For more information, or to participate, please call this toll-free
number: 1-855-209-9538

Please speak clearly and slowly to leave your name and number.
A UCSF researcher (Mel) will get back in touch with you to tell you
more about this study.

Or you can email:

alice.wong2@ucsf.edu
Alice Wong, Staff Research Associate II
UCSF Disability Statistics Center”

IBS Impact is also interested in the experiences of people with IBS in obtaining disability benefits in any country. It appears, from anecdotal information from various sources, that although some people are able to qualify for benefits on the basis of IBS alone, this is generally difficult, and many people who do obtain them have additional disabilities that qualify more easily. This is a possible future area for advocacy if there is sufficient information on the needs of IBS community in this area.

In the U.S., IBS is recognized by the Department of Veterans Affairs as a presumptive service connected disability for Persian Gulf veterans.  IBS is not specifically recognized by the Social Security Administration at this time, (scroll down the linked page to the question about disability)  although some people with IBS do receive benefits. The IBS Impact main site has an article on its advocacy page, that partially addresses Social Security issues. Scroll down on the linked page to find it. Additional links for disability benefits in several other countries will be added to the site in the near future. Any reader who would like to offer input on any disability benefit issues, please leave a comment on the blog or use the contact links on the home page of the main site.

EDITED TO ADD: As of February 10, 2012, the links page of the IBS Impact main site has been updated to include a new category on disability benefits. Current countries represented are the United States, Canada, the United Kingdom, Ireland, Australia and New Zealand.


An Evolving Redefinition of Severity in Irritable Bowel Syndrome (IBS)

January 10, 2012

Moderate or severe IBS can be costly in many ways. There are obviously physical costs as people struggle with symptoms and/or the side effects of various treatments. There are social costs, as chronic symptoms strain relationships with many family members and friends and lead many people with IBS to avoid outings or events, isolate themselves or wonder how or if to discuss IBS with those who do not have it. There are educational or employment costs as a result of sometimes unpredictable absences or decreased productivity even though one may be at work or in school.  Some people with IBS are not able to maintain employment at all as a result of IBS or a combination of IBS and other medical conditions or disabilities and may seek disability benefits in their countries, such as Social Security or veteran’s benefits in the U.S.  Of course, there are also financial costs, both to individuals and society, for medical care and/or items or personal assistance that people may need as they attempt to accommodate IBS in their daily living on a long term basis.

The Unmet Needs Survey, an in-depth ongoing study begun in 2007 by IFFGD and the University of North Carolina Center for Functional GI and Motility Disorders,  has begun to quantify these issues in detail. This online study is open to all adults from any country with IBS symptoms, whether officially diagnosed or not.  The first report, “IBS Patients: Their Illness Experience and Unmet Needs” was published in the medical literature and by IFFGD in 2009. These results, as well as other data from literature reviews and Rome Foundation focus groups, appear to be beginning to change historical perceptions of IBS, even within the functional GI field itself. In July 2011, the Rome Foundation Working Team Committee, consisting of eight leading professionals in the field from the United States, Australia, the United Kingdom and Spain, published a report, “Severity in Irritable Bowel Syndrome: A Working Team Report” in the American Journal of Gastroenterology. In part, the report found  that,“severity in IBS is defined as a biopsychosocial composite of patient-reported gastrointestinal and extraintestinal symptoms, degree of disability, and illness-related perceptions and behaviors” as well as  “…both visceral and central nervous system physiological factors  affect severity; as severity increases, the central nervous system provides a greater contribution…” and  “…severity is related to and influences health-related quality of life and health behaviors…”

 Another interesting change mentioned is the categorization of IBS severity into approximately 40% mild, 35% moderate and 25% severe under this evolving standard. The authors acknowledge in the article that their own previously published and widely quoted figures of 70% mild, 25% moderate and 5% severe have appeared to underestimate the overall prevalence of severe IBS for various reasons. The report offers several recommendations to their colleagues for future research and development of guidelines to confirm and assess this emerging information and how it can be applied to the diagnosis, treatment and research of IBS in the years to come.

While the idea that many more people with IBS struggle with moderate or severe symptoms and diminished quality of life than previously believed is unfortunate, in some ways, the information appears to be promising for the IBS community. This is because it officially validates the complexity and seriousness of the experiences of those of us who happen to be part of the moderate to severe subset. For decades, IBS has not been widely regarded as a priority because the percentage of people who are significantly hindered by it was believed to be a very small minority. If, in fact, these newer statistics hold up to further scientific scrutiny, then those who are considered to have moderate or severe IBS actually will comprise a slight majority of all people with IBS. In that case, it likely will be easier for people with IBS, our loved ones, and the professionals who work on our behalf to advocate for our needs in the manner that the high prevalence of IBS deserves.

Readers of this blog are encouraged to participate in the Unmet Needs Study, to read the first set of results and to read the Rome Foundation article as linked above. Here we see an example of a large number of study volunteers having a direct impact on the work of functional GI thought leaders. It will take many years for all of their recommendations to be put into practice and to bear fruit, but this report does appear to be positive forward motion toward that end.


UNC Online Chat: “The Role of the Psychologist” on January 10, 2012

January 2, 2012

The University of North Carolina Center for Functional Gastrointestinal and Motility Disorders has announced the next online chat in its “Evening with the Experts” series. It will take place Tuesday, January 10, 2012 from 8:00-10:00 p.m. Eastern time.  Stephan Weinland, PhD of the Center will be presenting on””The Role of the Psychologist” in regard to functional gastrointestinal disorders like IBS.

People with IBS, and/or their concerned family members and friends are encouraged to make time to attend and participate in this and other UNC chats, which are an excellent, unique opportunity to interact directly with leading researchers, ask questions and give them feedback about our needs and concerns.

To participate in this or any UNC chat, go to the Center home page about 10 minutes before the starting time, click on the chat icon and follow the instructions given there. The current chat announcement on the Center site also includes a list of upcoming topics scheduled for the next several months.

Those who are unfamiliar with UNC’s online chat series may also find this previous post by IBS Impact on July 29 to be of interest.