Developing Formal Guidelines for the Diagnosis and Treatment of CVS in Adults

ANNOUNCEMENT OF PUBLICATION OF ADULT GUIDELINES – JUNE 2019

It is with a great deal of gratitude and satisfaction that the Cyclic Vomiting Syndrome Association (CVSA) is announcing the publication of a special four-article supplement to the journal Neurogastroenterology and Motility. 

1. Guidelines on Management of Cyclic Vomiting Syndrome in Adults by the American Neurogastroenterology and Motility Society and the Cyclic Vomiting Syndrome Association
2. Management of Cyclic Vomiting Syndrome in Adults: Evidence Review
3. Role of Chronic Cannabis Use: Cyclic Vomiting Syndrome vs. Cannabinoid Hyperemesis Syndrome
4. Cyclic Vomiting Syndrome: Pathophysiology, Co-Morbidities, and Future Research Directions

The supplement is open access meaning it is available to anyone globally with the link: https://onlinelibrary.wiley.com/toc/13652982/2019/31/S2

This is the 3^rdsupplement devoted to CVS in a major medical journal developed by partnership of CVSA with medical professionals. One of the 3 described the diagnosis and treatment of CVS in children. 

The supplement is dedicated to now retired pediatric gastroenterologist David R Fleisher, M.D., one of 2 founding medical advisors to CVSA in 1993. The dedication appears in the supplement spelling out the exhaustive work of Dr. Fleisher without whom we would not be where we are today. 

This nearly 4 year project was led by Chairperson Thangam Venkatesan, M.D. Dr. Venkatesan’s vision, dedication, leadership and much needed perseverance defies description. The committee consisting of 12 M.D.s and Ph.Ds, met with vigor and determination bringing their cross-specialty expertise to the table. Countless hours of research, discussion and writing took place. There were 4 in-person meetings as well as emails and conference calls – far too many to count. 

The scientific partner of this endeavor is the American Neurogastroenterology and Motility Society. The sole financial partner is CVSA. The project is founded on high science and the strong expansive non-profit commitment to calling up a donor base – an extremely effective collaboration. 

When I reflect back to 1979 through 1991, I am transported to my daughter Mollie’s first CVS episode at age 1 ½ up until she was 13. Those years brought about 10 hospitalizations each year, spent in extreme misery and without diagnosis. Mollie was finally diagnosed and treated by Dr. Fleisher. She has been cared for by advisors Dr. B U.K. Li and Dr. Venkatesan. She has benefitted greatly by the unfolding of hard-earned medical knowledge of many.

A special thanks goes to the leadership of hardworking CVSA President Blynda Killian, Program Director Debbie Conklyn and Assistant Jennifer Dhuse. 

With untold gratitude for 26 years of medical professionals, CVSA board members, staff, volunteers and supporters, I can now reflect on how far we have come. As I have said many times, CVS has risen out of the cracks in the floorboards of medicine. This world-wide, fully accessible exhaustive work is another major landmark in the life of CVSA. Solid leadership continues, reaching out to those who are still suffering in isolation. In Dr. Fleisher’s words, we are “PRESSING ON.”

Kathleen Adams, RN, BSN
Project Coordinator
President Emerita CVSA

• Guidelines on management of cyclic vomiting syndrome in adults by the American Neurogastroenterology and Motility Society and the Cyclic Vomiting Syndrome Association (PDF)
• Management of cyclic vomiting syndrome in adults: Evidence review (PDF)
• Role of chronic cannabis use: Cyclic vomiting syndrome vs cannabinoid hyperemesis syndrome (PDF)
• Cyclic vomiting syndrome: Pathophysiology, comorbidities, and future research directions (PDF)

Update October 2018:

Clinical practice guidelines on the management of cyclic vomiting syndrome in adults. A note about progress with the CVS guidelines for adults – The four articles listed below have been completed and submitted to the governing Council of the American Neurogastroenterology and Motility Society (ANMS) – the sponsoring body. These are to be published in a special supplement to the Journal of Neurogastroenterology and Motility. Hopefully this set of articles will be published with open access in early 2019. The submitted draft will be circulated within the ANMS Council for comment. Requests for edits may be submitted back to the developing committee. On completion of the final draft, the documents will be submitted to the publisher of the journal. 

1. Guidelines on Management of Cyclic Vomiting Syndrome in Adults by the American Neurogastroenterology and Motility Society and the Cyclic Vomiting Syndrome Association 2. Technical Review on Pharmacologic Agents Used as Therapy in the Management of CVS 3. Role of Cannabis Use: Cyclic Vomiting Syndrome vs. Cannabinoid Hyperemesis Syndrome 4. Pathophysiology of CVS: Current Knowledge, Gaps in Understanding, and Future Directions 

Update September 2018: 

Over the last three years, you may have been following the progress of this landmark project for adult patients with CVS worldwide. The American Neurogastroenterology and Motility Society (ANMS) with scientific sponsorship, and CVSA with financial and logistical sponsorship, have teamed up. The result will soon be available as a special supplement to the Journal of Neuro-gastroenterology and Motility. The contents of the supplement: 

1. Guidelines on Management of Cyclic Vomiting Syndrome in Adults 

2. Technical Review on Pharmacologic Agents Used as Therapy in the Management of CVS 

3. Role of Cannabis Use: Cyclic Vomiting Syndrome vs. Cannabinoid Hyperemesis Syndrome 

4. Pathophysiology of CVS: Current Knowledge, Gaps in Understanding, and Future Directions 

This extremely important and useful set of documents is dedicated to honor David R. Fleisher, M.D. who has spent his entire career of over 50 years — and still counting — working passionately and tirelessly on behalf of patients with CVS. He will be honored in print within the document. 

Update October 2017:

Once or twice a month, conference calls have been held along with in-person meetings. Tireless work has been completed on the available literature search and evaluation of relevant articles. This process must be completed before the work of writing the document can commence. Yet to be published, relevant articles are being considered as they become available. 

The process used in evidence-based practice to frame and answer a clinical or healthcare-related question and background questions have been completed. This framework is also used to develop literature search strategies. The first draft of the main manuscript incorporating background questions is being completed by the committee. 

Because of an emerging decision by the publication board of the journal of choice for the final document, Neurogastroenterology and Motility, there may be good news coming of an agreement between the committee and the publisher that would expand the usefulness of this document beyond what we originally expected. Stay tuned for that news. 

Again, like the consensus statement for the diagnosis and treatment for CVS in children, this resulting document will provide an excellent resource for clinicians diagnosing and treating CVS in adults around the world. We thank the financial donors for this project for their generosity in making this all possible for the benefit of many. We also thank the tireless efforts of all the committee members.