Phil Sower is supporting us again. He did the 115 coast to coast bike ride in 2021. He is attempting an even great challenge this August.

He is riding from Land’s End to John O’Groats, just 951 miles this time!

You can support him here:

CVS sufferer Charlotte White is selling clothing online. She has a CVS range and she is donating a percentage of the income to CVSA UK.

Take a look.

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.

Professor Qasim Aziz

Royal London

“My experiences and views on CVS”

Disability Info

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

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 licensed for such use. They are “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. Drugs used 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 licensed specifically for this use but it’s progress. The trial is recruiting now, and is USA only. One to watch!

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.