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Welcome to CVSA UK

We are a registered charity providing information and support to sufferers of

Cyclical Vomiting Syndrome and their families.

This website is certified by Health On the Net Foundation. Click to verify.

 

Please remember to update us if your email address changes.


Gill McRonald

It is with deep sadness we have to report the death of Gill.

Gill was a long-term supporter of the cause of CVS, before the charity was even created. She was instrumental in forming a support group and then the charity.

She was active on the international scene, liasing with other CVS support groups and building strong bonds between them. She was also vice-chair for many years. She didn't want to be "up front and centre", preferring to work tirelessly, and remain in the background. But she was the always the most active advocate and supporter of the cause of CVS. She had extensive knowledge and deep compassion. She was truly special. Every CVS sufferer owes her thanks for her work in making CVS better known, reducing diagnosis times and promoting better treatments. She made a difference.


 

CVS Members Discussion 

Wednesday 26th January 2022, 8-9pm


We are holding an online meeting for members to get together and discuss CVS.  This will be our first online open discussion session and we hope people find it useful.  Numbers will be limited to help make the event more manageable, so we will be allocating places on a first come, first served basis.

We plan to hold more of these events in the future so everyone gets a chance and will be reviewing how we can improve them as we gain experience and feedback from members.

If you’d like to attend, please send an email to info@cvsa.org.uk.  We will process requests and send invites to those chosen.  Please include the name of the member in the email.

 

 

Fund Raising

 

Amy

 

 

My name is Amy Bennison.  I am 10 years old and live near York.  I was diagnosed with CVS when I was 3 and I have regular sickness episodes about 5 times a year.  My Grandma is really good at knitting and sewing.  She made loads of handcrafted items throughout the year and had a Christmas stall.  She raised a fabulous £250 for CVSA but not only that, she spread the word about CVS.  Lots of people at the stall were very interested and surprised to hear about CVS.  Well done to my fantastic Grandma.


CVS Hoodies

Charlotte White has launched a clothing brand.

She is donating part of the profit on her CVS branded items to the charity. Check them out here.

 

 


 

Dr. Osvaldo Borrelli

Gt. Ormond St Hospital for Sick Children

"An introduction to CVS"

Thanks so much to Osvaldo for an excellent presentation. Thanks to all attendees, many excellent questions, we hope everyone got a lot out of it.

Watch the recording here

 

Save the Date(s)

January 2022

We are planning a Q&A online session for charity members in January. Check back for detail. We plan on making this members only and requiring pre-registration. We will limit numbers to make the call manageable.

 

Weds 2nd March 7.30pm

Our next webinar is being planned, we will have a medical expert focussing on Adult CVS present followed by a Q&A session .Check back here for updates.This will be available to all.

 

Family Day 2022

Sat. Nov 12th 10-4pm

Put the data in the calendar!

 

Respiratory syncytial virus (RSV)

 

Contact is a charity supporting rare conditions and other charities. They have an update on a condition that may have higher then ever infection rates this winter. In most cases it can be mild but in those with other health issues it can be much more severe. They have a very helpful info. page here.

 


Disability Info

A useful document from the government on their disability strategy with lots of helpful info. click to download.

 

 

Older news:

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!

https://clinicaltrials.gov/ct2/show/NCT04645953


 

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.

www.Jansen-devries.org

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.

Smile

 

 


Donate

 

This method has very low admin fees compared to some donation sites.

Scan or click the QR code below to support us via Evershare

everyshare



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.

 


 

 

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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

Osvaldo Borrelli MD PhD
Consultant In Paediatric Gastroenterology
Head of Department of Paediatric Gastroenterology
Division of Neurogastroenterology & Motility
Hon. Senior Lecturer in Paediatric Gastroenterology
University College of London (UCL) 
Great Ormond Street Hospital for Sick Children
 

About CVSA

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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