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.
COVID -19
We have no specific knowledge of how Covid-19 affects CVS sufferers.
Please be cautious and follow all government advice, particularly with regard to social distancing.
We have heard from a couple of families where a CVS sufferer has tested positive, during an episode. In both cases this did NOT complicate treatment. It is early days but it is an encouraging first piece of news.
If you have CVS and have/had the virus, please get in touch so we can share the information and any advice.
We are not aware of any evidence that CVS increases risk of becoming infected, or having a worse prognosis.
Some CVS sufferers find that even minor infections can trigger a CVS attack. Dealing with an infection and CVS at the same time would be a burden best avoided. The advice on social distancing and self-isolation can only help in this regard.
Every severe CVS attack that is prevented means one bed kept free for the NHS which will be under increasing pressure.
That being said, if you are having a severe attack do not hesitate to seek help.
The US Society has updated its site with some information
National Voices
This charity has an important statement on disability rights during the pandemic. They are asking people to read their statement to government and support it.
They say:
This morning along with 78 organisations across the VCSE we released a joint statement, about the need for human rights and equality in care during the Covid-19 crisis. I have also written a comment piece today in the BMJ, 'We must not let our shared values fall victim to Covid-19'.
Thank you to all our members who have signed up. Please support us on social media by retweeting or liking our joint statement tweet, or by tweeting one of the drafts tweets below.
- 78 #VCSE organisations have joined us in signing this @NVTweeting statement about the need for human rights and equality in care during the #COVID19 crisis https://buff.ly/2JPoRnx
- Proud to be alongside 78 organisations signing this important @NVTweeting joint statement on #COVID19 https://buff.ly/2JPoRnx
CVSxplained
The US society in collaboration with MedicineX has produced a new resource to help explain CVS. Take a look here.
Kristina Woodget has big plans:
Imagine the worst sickness bug you have ever had, getting better for a short while, only to repeat it again and again for the rest of your life.
People are suffering daily due to CVS.
Whilst CVS warriors are doing their best to keep up the good fight, awareness of the condition is limited, which often leads to misdiagnosis and judgement imparted on the sufferer.
When I learned about CVS and heard from the individuals that face this horror my heart was broken and I felt compelled to do something. This is why I plan to do a tandem skydive on Good Friday (10/4/20) to raise both funds for research and general awareness of the condition.
To view my video featuring the struggles from fellow CVS sufferers click this link
Donate Here
Diary date: Family Day 2020 will be on Saturday 14th November
Our first speaker is Prof B Li. He is the main author of the CVS child treatment guidelines and a world famous expert. It will be one not to miss.
NEWS
Adult Guidelines Published
The North American Society and their medcial advisors have complete a mammoth task and produced a concensus view on the current best evidence based guide to treatment of adult sufferers. Thanks to all involved for this important piece of work in support of CVS sufferers.
You can download the guidelines for your doctors to read here.
Updated Childhood CVS info.
It has been a few years since a medical society published guidelines for children with CVS, available here
Prof. B Li who was the main author has pubished an update available here
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.
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
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:
Contact, the charity she works for can be contacted here:
Freephone National Helpline
0808 808 3555
Monday to Friday 9.30am – 5.00pm
Scope may be able to offer some advice to adults
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.
Click the logo below to support us via GoFund Me
Clcik the logo Below to support us via Virgin Money Giving
AWARENESS DAY March 5th
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
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
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
New: CVSA eBook available on the Apple iBook store for Mac, iPad and iPhone- free
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:
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.
A charity that provides information, advocacy and advice services across England, offering direct and local support via Professionals and Volunteers.
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
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.
This site complies with the HONcode standard for trustworthy health information:
verify here.
| Email info@cvsa.org.uk Page updated: 12-apr-20 |  |
Helpline 0151 342 1660 |
Charity Number 1045723