Welcome to CVSA UK
We are a registered charity providing information and support to sufferers of
Cyclical Vomiting Syndrome and their families.
Please remember to update us if your email address changes.
Family Day 2021
Sat. Nov 13th 10-4pm
Birmingham Children's Hospital
Free to all. Creche for children 3 and older
Discussion and Q&A sessions, meet others with CVS experience.
Our Speakers
"An Introduction to CVS"
Dr Osvaldo Borrelli
Head of Clinical Services for Gastroenterology, Great Ormond Street Hospital for Sick Children
&
Honorary Senior Lecturer at University College London, Institute of Child Health.
"A&E and me: an adult sufferers perspective"
Rebecca Griffiths
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Rebecca is a management consultant who works at one of the world’s largest consulting firms and who specialises in ‘Learning and Professional Development’ as well as helping blue chip companies operate across different time zones, language barriers and age ranges.
She is an adult CVS sufferer and has struggled with the condition since diagnosis in 2013. In her presentation, Rebecca will outline the challenges that adult CVS sufferers face and how she aims to get the UK CVS community of adult patients involved to find a ‘best practice’ set of guidelines to treat patients in A&E departments/urgent care settings, encouraging the NHS to provide timely, appropriate and supportive care during episodes.
We need to do whatever we can to ensure everyone’s safety. If you have any symptoms of infection, of any kind, please do not attend. There may be people with other conditions that make them vulnerable in the audience or at home and we don't want, for example ‘flu to be passed between attendees or carried home to vulnerable people.
We ask that anyone planning to attend carries out a lateral flow test on Friday, prior to travelling. Do not attend if you test positive. Tests are free and simple to use. Consider the safety of others at all times.
The Hospital and education centre will have their own rules. You must adhere to these at all times. We ask you to wear a mask when in confined spaces and near to others, this includes the lecture room.
Please check back for updates and any chnages based on government advice etc.
Disability Info
A useful document from the government on their disability strategy with lots of helpful info. click to download.
The first clinical trial for a CVS drug
The vast majority of drugs for treatment of many conditions and diseases used in children are not specifically licenced for such use. They are give "off label". It is a medico-legal issue and the prescriber does it at his/her own risk. Simplistically, this is because trials in children may pose financial and ethical barriers for companies so they will rarely sponsor them unless the potential return is very high.
The market for drugs to treat CVS is quite small and trials can be very expensive. So no drug used to actually treat CVS has ever been licenced for the specific use to treat CVS. Use to treat vomiting in other conditions and situations, e.g. in cancer chemotherapy-induced vomiting may be licenced in adults.
That is why this is big news. The drug is not new, the method of delivery is. To have a clinical trial of a drug specifically in CVS is a big step. This is a long way from it being licenced specifically for this use but it's progress. The trial is recruiting now, and is USA only. One to watch!
Another differential diagnosis
Some childhood onset symptoms that may be diagnosed as CVS, might be a completely different condition. We know CVS symptoms are common to many conditions, and only when they have been ruled out should someone be diagnosed as having CVS.
Jansen de Vries Syndrome was relatvely recently recognised, 2017, and there are diagnostic tests available. Presentation of symptoms is variable but develpmental delay is the most prevalent and repeated vomiting episodes are common.
Currently there is no "cure" and treatment is largely supportive. There is a support group in the USA who can provide more information. It would be sensible to ask your medical support, if this syndrome has been ruled out in those sufferers who display the symptoms listed on the de Vries website.
Start Shopping on Amazon Smile and Support CVSA
It is really simple and costs you nothing click on the link below, search for Cyclical Vomiting and choose it, from then on everytime you go to the Amazon site you will be prompted to choose smile and support us, you pay the same price, we don't track purchases or anything else, but we do get a small payment from Amazons profit on the sale.
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Scan or click the QR code below to support us via Evershare
Can You Help ?
We need help with the committee, most roles don't take up much time.
PLease let us know if you can spare some time to help us keep CVSA working for all CVS sufferers.
A description of the roles can be found here
Please consider sending your story and sharing it in our next Newsletter. We really appreciate your input and our members find hearing others experiences very helpful.
Seen a health claim that's too good to be true? Then Ask for Evidence
All medical information on this site has been reviewed by our Medical advisors, shown below, people's individual stories on our Experiences pages are their own views and do not constitute medical advice. Our site contains advertising links that help support the charity. Neither the trustees nor any of our medical advsiers benefit in anyway from these links and have no commercial links to our advertisers.
Dr Sonny Chong Consultant Paediatrician Queen Mary’s Hospital, Carshalton, Surrey
Keith J Lindley BSc (Hons) PhD MB MRCP(UK) MRCPCH UCL Institute of Child Health, Great Ormond Street Hospital
Dr Ishaq Abu-Arafeh, Consultant in Paediatrics and Paediatric Neurology Forth Valley Royal Hospital and the Royal Hospital for Sick Children, Glasgow
Dr Alberto Ravelli Pediatric gastroenterologist and hepatologist Brescia University, Italy Dr Simon Moodie Consultant Gastroeneterologist Epsom & St Helier NHS Trust Surrey Dr Maureen Lawson Consultant Paediatric Gastroenterologist Great Northern Children's Hospital Newcastle
The information on this site is provided to help you understand CVS and support sufferers but is not intended to replace any advice from your own health care professional.
Confidentiality
We do not sell or pass on any personal information you may provide us if you contact us to any 3rd party. We maintain a database of membership, members can request paper records are kept and opt out of the database entry.
About CVSA
We are an all volunteer organisation, a registered charity with all funding being provided via the sponsored links on our purchase pages, membership fees and by voluntary donations.
Advertising
Our editorial content is not influenced by the funding sources. Our website hosts sponsored ads and links from which the charity earns a small income, 100% of this income is spent on supporting the charities aims. We don't accept advertising from any adult-orientated material or from advertisers promoting any "treatments" for CVS.
Our website hosts advertising banners only. Advertisement is distinguished by the word ‘Advertisement’
Privacy Policy
We hold data on members for the purposes of sending them newsletters and other charity-related emails. We ask members who in the family has CVS and if the member provides that information we will record that data. We ask members if they would be willing to speak to journalists, and if they agree we will pass their details to a specific journalist for the purposes of a potential article/radio or TV interview. Occasionally we may ask members if they wish to take part in medical research relating to CVS. We will never pass details without asking.
You can ask to be removed from our list at any time and we will completely erase your data. If you wish to see what data we do hold on you please email info@cvsa.org.uk. We never pass or sell your information to any third party without your explicit consent.
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| Email info@cvsa.org.uk Page updated: 23-oct-21 |  |
Helpline 0151 342 1660 |
Charity Number 1045723