CVS logo

Navigation

Home

What is CVS?

Symptoms

Diagnosis

Treatment

Research

Adult CVS

Membership/CVSA

Contacts

Experiences

Resources

Purchase

Thanks

Family Day

Survey

Advertisment

 

 

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.


Family Day 2019

Saturday 16th November

Birmingham Children's Hospital

Put it in the diary now - all welcome - free to attend - free creche

10-4pm

 

CVS is related to migraine. Some anti-migraine drugs help some CVS sufferers. New anti-migraine drugs have been developed and are starting to be used to treat migraine sufferers who aren't responding well to other treatments. We will hear more about the relationship between CVS and migraine, the current treatment options and what future treatments may be available for CVS.

 

Our Speakers

 

Ishaq Abu-Arafeh, MBBS, DM, MRCP, FRCPCH, DCH ·


Consultant in paediatrics and paediatric neurology at Royal Hospital for Children, Glasgow, UK

“CVS in the context of the migraine syndrome- what do we know”

 

Julie Edwards


Clinical nurse specialist for headaches

 

“The treatment options for managing migraine”

Donation

 

A huge thanks to the good folks at ExxonMobil & Actavo in Cowdenbeath, west Fife, Scotland for a large donation.

Our Medical advisor Dr. Abu-Arafeh (left) was presented with a cheque today.

Exxon/Activo

 

Fundraising

 

You can now use Virgin Money Giving to support us. If you are planning an event or sponsorship,

contact us and we can setup a page to publicise it.

We have a research Fund Page you can contribute to now

Donate

 

 

Ruth McGuire is on the run!

Ruth is running the Bournemouth marathon in October

you can sponsor her here

 

NEWS


Mitochondrial DNA can be inherited via the father as well as the mother.

 

For a very long time it was thought only the mother passed on surviving mitochondria to a child. Recent research is casting doubt on that. This complicates our understanding still further. It is early days but as the finding was controvertial it was repeated, using different methods in different independant labs. It is a major finding for human biology, what it may mean, if anything, for CVS is less clear yet.



Link to the article here

Metabolic Cocktail

 

Dr Boles has been using a mixture of supplements to help CVS and other conditions. His latest supplement mix is now available in the UK... more details later

 

Available here

NeuroNeeds.com is pleased to announce our new European SpectrumNeeds® Authorized Reseller, The Spectrum Supplements Nutrition Store.  

What does this mean for you (Cyclic Vomiting Syndrome Association Members)?

Your members may now visit online Spectrum Supplements Nutrition Store and purchase SpectrumNeeds®.  By doing so, you will receive better pricing and faster delivery times - saving on customs, duty fees, and shipping.  

https://www.spectrumsupplements.eu/supplement/spectrumneeds-4-4-grams/

See below for additional information on SpectrumNeeds®.

NeuroNeeds, LLC
www.neuroneeds.com 

 

https://www.youtube.com/watch?v=5acxZYnxW7w

 

 

Contact Charity

Contact can assist parents and careers of children with disabilities.Adults, please see below.

Jackie has offered to try an help anyone interested in finding out more on benefits you can email her here:

Jackie O'Kelly Contact

Contact, the charity she works for can be contacted here:

Freephone National Helpline 

 0808 808 3555

 Monday to Friday 9.30am – 5.00pm  

 Contact Helpline

www.contact.org.uk

 

Scope may be able to offer some advice to adults

scope

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

 

The methods below are just some of the ways you can contribute. These methods have very low admin fees compared to some donation sites.

 

Text Donations to CVSA UK

You can donate 1, 3, 5, 10, 15 or 20 pounds by text message.

send a text to 70085 starting CVSA and a donation amount as above

This will be charged at your standard network rate

eg Text CVSA 15 to 70085 to give £15. This text will cost you £15, plus a standard network rate message

 



Click the logo below to support us via GoFund Me

 

Clcik the logo Below to support us via Virgin Money Giving

Donate

 



Cook Book to Support CVSA

Bindu Kejriwal has written a cook book and is donating profits to CVSA.

"After my son had been diagnosed and successfully treated, I decided that I wanted to do something to help the organisation that had helped us in our hour of need."

Please email me if you would like to buy a copy. As my costs should now be more than covered by pre-orders, the entire proceeds from all future sales will go to CVSA.

www.whatelsecanieat.co.uk
bindu@whatelsecanieat.co.uk

 

So far Bindu has raised an amazing £1500 - thanks so much!

 

Cook Book

AWARENESS DAY March 5th

Awareness Day page

Thank you to everyone who contributed to last year's Awareness day.

We hope all the CVS societies and supporters around the world had a great day and that we have started something that can only grow and grow and help more and more people.

Have you got your T shirt yet?

Fruit of the Loom brand, heavy cotton. Order from the Awareness page

tshirt close up

Organising an event? We now have a MyDonate page where you can collect funds online, link below - its simple to set up and all money raised comes to the charity- no fees applied.

 


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

 


 

Listen to Dr Sonny Chong on Radio 4

Inside Health

or on catch up

sonny and mark porter

 

 

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.

 


Buy Trolley Coins/Keyrings Ribbons and Wristbands to support CVSA

T-shirts can be ordered now! In Stock

see our Awareness Day page

trolley cvs ribbon

 


New: CVSA eBook available on the Apple iBook store for Mac, iPad and iPhone- free

ebook image


 

Resources

We hear of many sufferers who don't think they are being treated seriously, and struggle to get diagnosis or treatment. Some people have their jobs at risk due to what appears to their employer to be unexplained absences. Parents face the same issue with schoools, when a child has not got a diagnossis they recognise.

Thanks to a member for providing links to some useful resources:

Carers UK

As the UK's only national membership charity for carers, Carers UK is both a supportive community and a movement for change.

For the past 50 years we've been driven by carers raising their voices together to call for change and seek recognition and support.

POhWER

 A charity that provides information, advocacy and advice services across England, offering direct and local support via Professionals and Volunteers.

NHS Complaints Advocacy

Our advocacy service is a free and confidential service available to anyone who wants support to make a complaint to the NHS.

 

Seen a health claim that's too good to be true? Then Ask for Evidence

Ask for evidence logo


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 Krishnappa Venkatesh 
Consultant Paediatric Gastroenterologist
Alder Hey Children's Hospital Liverpool

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.

 

  

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.

Search only trustworthy HONcode health websites: