American Gut and uBiome Invite Public Participation in Human Microbiome Research

December 31, 2012

Update 01/31/2013: uBiome has announced that it has extended its Indiegogo deadline to February 18, 2013 and will release further details on later opportunities to participate after that time.

Update 01/29/2013: American Gut has reported that it has received approval to open participation to volunteers outside the U.S. The fundraising phase for American Gut ends on February 2, 2013 at 11:59 p.m. Pacific Time. As of this writing, it has not yet reached its projected fundraising and participation goals.  uBiome, which is also open to volunteers worldwide, has exceeded its goals but will be accepting more participants and funding until January 31, 2013 at 11:59 p.m. Pacific Time.

As many readers of this blog are probably aware, the potential roles of “good” and “bad” gut bacteria in gastrointestinal disorders like IBS is somewhat of a “hot topic” in recent years, capturing much attention in both scientific and mainstream media. This field of research appears to be promising, but despite the hype, actual scientific understanding is still at a very early stage.  In hopes of giving microbiome research a major push forward, two separate teams of researchers are now using the innovative means of the Internet crowdfunding site Indiegogo to raise funds and recruit a broad range of volunteers from the general public. For monetary donations of varying amounts depending on the number of test kits and surveys one wishes to receive, one can submit stool, and/or mouth or skin samples for analysis. Both projects’ Indiegogo campaigns will end in early February 2012, so interested readers should act soon.

Both American Gut and uBiome welcome participation from those who are currently healthy and those with medical conditions. The uBiome posting, linked later in this post, offers one kit option specific to those with known bowel disorders like irritable bowel syndrome (IBS)  or inflammatory bowel disease (IBD). American Gut hopes to recruit a total of 10,000 U.S. residents, adults and children older than 3 months, with a total funding goal of $400,000, and uBiome is open to 2000 people from anywhere in the world with a total funding goal of $100,000, though in both cases, those who sign up will still be able to participate if the ultimate numbers fall short. Both American Gut and uBiome have privacy policies whereby samples will be coded and personally identifying information will be protected according to standard research protocols and U.S. health privacy laws.

Although this unconventional recruiting approach differs from standard, controlled clinical trials, these are legitimate research endeavors involving collaborations among scientists and social scientists associated with well-regarded academic, medical and scientific research institutions. Donated samples for American Gut will be received and coordinated by the University of Colorado at Boulder, but will also be used by researchers at more than two dozen sites in the United States, Belgium and Australia. uBiome is located in the San Francisco Bay Area of the United States, but involves people with ties to several countries. According to the uBiome website, its founders and scientific advisors have varied high-level expertise and honors in biochemistry, biophysics, molecular cell biology, biotechnology medicine, computer science, economics, entrepreneurship and social innovation.

The Indiegogo listings for each endeavor are linked below.

American Gut on Indiegogo

uBiome on Indiegogo

It should be emphasized that although each team of researchers will provide participating donors with individual analyses of their own or their participating family members’ samples, and other reports about their research findings in general, these do not constitute formal recommendations or means of prevention, diagnosis or treatment of IBS or any other medical condition. Scientific understanding of the human microbiome has not reached that point yet. Readers of this blog post who choose to volunteer should do so in the spirit of, in the words of uBiome, “citizen science,” the public good and future understanding of how the microbiome works and influences human health. With that in mind, these appear to be very interesting opportunities, and IBS Impact wishes all the involved researchers useful insights and progress toward those ends.

Join Restroom Access Act (Ally’s Law) Advocacy in Virginia, New York and Maine

December 23, 2012

UPDATE: 05/10/2013: Please see the May 10, 2013 post for updated information on Ally’s Law in the states of Maine and Maryland

UPDATE: 1/26/2013: Several sources, including Amplify Your Voice, are now reporting that on January 21, HB 1375, Virginia’s Restroom Access Act legislation was defeated in subcommittee without any votes of support. This is disappointing, but Amplify Your Voice states they will try again in the next legislative session next year. IBS Impact hopes they will and will post any news as it develops.

This week, the national newsmagazine U.S. News and World Report featured a lengthy article entitled, “The Grassroots Movement to Change the Nation’s Public Restroom Laws.” This has given renewed attention and momentum to the ongoing effort to pass a Restroom Access Act, popularly known as “Ally’s Law, ” in additional states.

This advocacy movement is named for Ally Bain, who has Crohn’s disease, a type of inflammatory bowel disease (IBD). Several years ago, as a young teenager, Ally had an accident in a store after her request to use the employee restroom was refused, despite her explaining repeatedly that she had an urgent medical need. After that humiliating experience, Ally successfully worked with legislators in her then-home state of Illinois to enact a law to address similar situations in 2005. Since then, with continued public advocacy by Ally and others, similar laws have been enacted in twelve other states: Colorado, Connecticut, Kentucky, Massachusetts, Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Washington State and Wisconsin. As these are individual state laws, they each vary in certain details, but most say that a “retail establishment” must give a person with an “eligible medical condition” access to an employee restroom if there is no public restroom immediately available, there are at least three employees (in one case, two) working at the time, and the facility itself or its location will not pose a safety hazard to the person or security risk to the business. Please see IBS Impact’s previous posts on February 21, 2012 and August 20, 2012 for links to text of the law in each state where one currently exists. In twelve of these states, irritable bowel syndrome (IBS) is specifically mentioned in each law. In the thirteenth and most recently enacted, Massachusetts, IBS is covered broadly under “any other medical condition requires immediate access to a restroom facility.”

In past years, similar bills been introduced in several additional states, but have not yet passed, requiring continuing advocacy and reintroduction in subsequent legislative sessions.  IBS Impact has reached out to Ally and other self-advocates in the inflammatory bowel disease community in an effort to increase public awareness of the similar concerns of many people with IBS, as well as to offer support toward this common goal.While their diagnosis of IBD is different from IBS in several ways, the experience of gastrointestinal pain, unpredictable, urgent or frequent trips to the bathroom and feeling embarrassed and alone is shared by many people with IBS. Please see IBS Impact’s previous post on November 2, 2012 for commentary on why it is in the interests of the IBS community to join our IBD-affected peers in pressing for these laws.

Ally now resides in Virginia, where the Restroom Access Act, HB 1375,  is reported to be currently in the General Assembly. Her social media has also alerted us to current efforts in New York City, as well as a more general inflammatory bowel disease awareness effort in Maine, which appears to include some information about Ally’s Law efforts in that state.  State or city- specific updates can be reached through the following Facebook pages.

Amplify Your Voice: Help Get Ally’s Law Passed in Virginia

IBD in NYC- Pass Ally’s Law

Team Challenge Maine

IBS Impact thanks Ally and other IBD advocates for their leadership on this issue, and the receptivity of some of them to the participation of people with IBS. We will continue to follow the progress of efforts in various states as they arise, and to report on them to the IBS community. We urge readers to consider getting involved, and we encourage comments on this blog or IBS Impact’s social media in regard to your personal experiences with needing, using or advocating for these laws

Proposed DSM-5 Criteria May Unfairly Label Physical Conditions as Psychological Disorders

December 17, 2012

UPDATE 01/19/2013: On January 16-17, Dr. Allen Frances communicated directly with IBS Impact to report that the DSM-5 work group has rejected the advocacy efforts spearheaded by Suzy Chapman and him to tighten the criteria for Somatic Symptom Disorder to reduce the chances of mislabeling those with medical illnesses.  Dr. Frances has a new post on the Psychology Today website with details:

Bad News DSM-5 Refuses to Correct Somatic Symptom Disorder

Other updated commentary on this issue can be found on Suzy Chapman’s Dx Revision Watch website and  in the article by author and blogger on chronic illness, Toni Bernhard, JD, who also writes for Psychology Today, “Your Physical Illness May Now Be Labeled a Mental Disorder”

Not all mental health professionals use the DSM criteria. Some report using the diagnosis codes in  the International Classification of Diseases and Related Health Problems (ICD, currently ICD-9 CM in the United States), which covers all medical or psychological or behavioral diagnoses. It is reported by the American Psychological Association Practice Central site, that as of October 1, 2014, the Health Insurance Portability and Accountability Act (HIPAA) will mandate that all providers use ICD-10 CM for insurance billing and related purposes. Some professionals have expressed the hope that this requirement will blunt the impact of the DSM-5 changes in the U.S., but this remains to be seen. The IBS Impact administrators, as well as several members and followers, continue to be concerned about this situation and will report on any new developments or advocacy opportunities if they arise.

Recently in the IBS and chronic illness community, several professionals and self-advocates have begun expressing concern about proposed changes in the Diagnostic and Statistical Manual for Mental Disorders, commonly known as the DSM. This is a lengthy reference book published by the American Psychiatric Association as a guide for mental health professionals in diagnosing their clients or patients according to standard criteria. The DSM is revised periodically and the 5th edition is expected to be released in 2013. While there are many controversial proposed changes, one that has received relatively little attention in the mainstream media is particularly alarming in its potential implications for people with chronic illnesses, especially ones that are still scientifically poorly understood, like irritable bowel syndrome or commonly overlapping conditions like fibromyalgia, chronic fatigue syndrome and interstitial cystitis among others.

According to Suzy Chapman, a health advocate in the United Kingdom in her article, “Somatic Symptom Disorder Could Capture Millions More Under Mental Health Diagnosis,” it is proposed that four separate and stricter diagnostic categories currently in the DSM-4 be revised to a single  umbrella diagnosis in the DSM-5 to be named “Somatic Symptom Disorder.” As paraphrased in “Mislabeling Medical Illness as Mental Disorder” by Allen Frances, MD in the U.S. magazine Psychology Today, Chapman writes in part:

A person will meet the criteria for SSD by reporting just one bodily symptom that is distressing and/or disruptive to daily life and having just one of the following three reactions to it that persist for at least six months: 1) ‘disproportionate’ thoughts about the seriousness of their symptom(s); or 2) a high level of anxiety about their health; or, 3) devoting excessive time and energy to symptoms or health concerns.”

As noted by both Chapman and Dr. Frances, as well as Tiffany Taft, PsyD of Northwestern University and Oak Park Behavioral Medicine, whose psychotherapy practice specializes in IBS, inflammatory bowel disease and other chronic medical conditions, these criteria are extremely broad, very subjective according to the personal definitions and potential biases of an individual mental health professional, and could potentially be interpreted to encompass almost anyone with a disruptive chronic illness, even a relatively well-defined one such as cancer, diabetes, rheumatoid arthritis or life-threatening food allergy, at a given point in time. In many situations, the person may be expressing typical and understandable stress or grief related to chronic pain or other ongoing symptoms or risks.  In her own blog post on this subject, “Moving In the Wrong Direction,” Dr. Taft also raises concern that normal emotional reactions of a parent or caregiver of a child with a chronic illness may be pathologized as well.

Specific to IBS and commonly overlapping or other complex functional syndromes, Dr. Frances quotes Chapman:

“The Work Group is not proposing to classify Chronic Fatigue Syndrome, Irritable Bowel Syndrome, and Fibromyalgia within the DSM-5 ‘Somatic Symptom Disorders’ section, but these patients and others with conditions like chronic Lyme disease, interstitial cystitis, Gulf War illness and chemical injury will now become particularly vulnerable to misdiagnosis with a DSM-5 mental health disorder. In the field trials, more than one in four of the irritable bowel and chronic widespread pain patients who comprised the ‘functional somatic’ study group were coded for ‘Somatic Symptom Disorder.”

Dr Frances, who is listed in his article as the chair of the task force for the DSM-4, former chair of the Department of Psychiatry and current Professor Emeritus at Duke University School of Medicine, agrees that this new proposed diagnosis of Somatic Symptom Disorder may encourage a premature rush to label a person’s medical condition as “all in the head.”

This disconcerting possibility is not unfounded. Historically, because IBS shows no overt biological markers that can be discerned by existing tests available to clinicians outside of highly specialized functional gastrointestinal research labs, it was long believed that there was nothing physically wrong with people with IBS. Ongoing research worldwide over the past 20-30 years has increasingly disproved that assertion, but widespread stereotypes and misconceptions remain.  Many people who have had IBS for some time can anecdotally recall at least one relative, acquaintance or health care professional who told them that IBS was “all in the head” or similar dismissive comments, and even many people with IBS themselves continue to believe that IBS  is “caused” by emotional stress rather than, more accurately, potentially worsened by stress depending on the situation and the individual. As IBS Impact wrote on this blog on October 9, 2011, a study conducted by UCLA in 2010 showed that compared to an international group of functional GI disorder experts, considerably more gastroenterologists, primary care physicians and nurse practitioners in local communities still support the outdated notion that IBS is a diagnosis to be given only when all other possible disorders are ruled out. In addition, Dr. Taft’s research interests focus on stigma in gastrointestinal disorders. She and her colleagues at Northwestern, in cooperation with Olafur Palsson, PsyD at the University of North Carolina Center for Functional GI and Motility Disorders, have found that study participants with IBS or inflammatory bowel disease both perceive stigma, but those with IBS perceive more. Dr. Taft’s blog post linked here includes links to the abstracts of her team’s published results for both groups.

It is hoped that there will be further revisions to this portion of the DSM-5 before the final version is released, but at this time, there is no clear information as to if this is planned. Regardless of the outcome, this situation underscores once again why it is important for those of us with chronic, poorly understood conditions like IBS, our loved ones, and the professionals who support us to make conscious efforts to begin or continue public awareness and advocacy about the realities of life with IBS , even if it requires stepping out of our initial comfort zones. If we do not speak out against this slippery slope, we risk even further invisibility and stigmatization in the future.

PBS “Second Opinion” Series Broadcast Episode on Irritable Bowel Syndrome (IBS)

December 10, 2012

Recently, IBS Impact was alerted that an entire television episode of the U.S. Public Broadcasting Service health series “Second Opinion” was devoted to IBS. The series is hosted by Dr. Peter Salgo, a well known health and science correspondent and practicing clinician and professor associated with Columbia-Presbyterian Hospital and the Columbia University College of Physicians and Surgeons in New York City.

His panelists for the episode on IBS were Erin Slater, RD, a person with IBS whose experience led her to become a registered dietitian, Douglas Drossman, MD, FACG of Drossman Gastroenterology in Chapel Hill, North Carolina, co-founder and recently retired co-director of the University of North Carolina Center for Functional GI and Motility Disorders, and current president of the Rome Foundation, and Lisa Harris, MD and Ashok N. Shah, MD, MACG, AGAF, both of the University of Rochester Medical Center. Within the context of Ms. Slater sharing her personal experiences with IBS, the panelists asked questions and provided answers that addressed common facts, misconceptions and treatment options related to IBS in general.

The entire episode is available for viewing on the “Second Opinion” website at the link below It runs a bit over 26 minutes. A link to a written transcript is also provided near the top of the linked page for those who are not able to access the audio. IBS Impact recommends this video to readers and thanks PBS, the University of Rochester, which sponsors this series,  the host and panelists for devoting time to IBS on the widely respected and high profile PBS network of stations, particularly Ms. Slater for her willingness to discuss her own IBS candidly and at length for broadcast television. It is hoped that this program will contribute to much greater awareness of IBS.

PBS “Second Opinion” Episode #910: Irritable Bowel Syndrome