Welcome to CVSA UK

We are a registered charity providing information and supporting sufferers and their families or those affected by Cyclical Vomiting Syndrome.

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Family Day 2009

Despite some hiccups with agenda changes we had another good meeting with two excellent presentations and the start of another research project.

Prof. Andrews used the Darwin anniversary year to highlight Darwin's own vomiting problems, and the coincidence of his death the same year the paper by Samuel Gee on CVS was published. He continued with an update on survey results with the addition of further data. The long time between onset of symptoms and diagnosis (approx. 50 months on average) was highlighted. He also discussed another drug, still in development stages, that is part of the ondansetron family of drugs which shows some promise and may eventually find a role in the treatment of CVS. He also discussed early experience with Emend (Aprepitant) and its use in combination with other agents as part of a therapeutic regimen.

Prof. Boles discussed how some small changes identified in mitochondrial DNA showed a correlation with a range of conditions including CVS, migraine, chronic fatigue syndrome, depression and IBS. Mitochondrial DNA is inherited via the mother and he showed family histories showing how families with one or more of these specific DNA changes increased the likelihood of a range of functional disorders. Not every CVS sufferer has these specific DNA changes, but many do. He suggested a treatment regime which we will publish here in more detail soon. In essence it involved advice on diet, regular meals with regular snacks, regular sleep/activity patterns which he stressed could have a considerable influence on CVS. Supplementation with Carnitine, Co-enzyme Q10 and riboflavin (a B vitamin) were highlighted as being effective in reducing symptoms and attacks.

Paula Allen and Steve Ballantine, from the University of Winchester attended and started a study into quality of life issues for children and young adults with CVS. They carried out an initial interactive activity as a prelude to more in depth interviews. It is hoped the information gained can be used to raise awareness of CVS in professionals working with children and young adults, including GPs, teachers, nurses, early years professionals, social workers and youth workers. Paula will be conducting interviews after Christmas with young people (13-18) and young adults (19-25) and their families regarding quality of life and CVS. If you are interested in knowing more please contact: Paula Allen.

We also welcomed a representative from Migraine Action.

Thanks to all who attended on the day and we hope you found it both educational and helpful through making personal connections with other sufferers and their families.