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Crowdsourcing raises vital funds for ME research

Patients living with myalgic encephalomyelitis (ME) have raised £100,000 to allow new research into the misunderstood condition to take place at the Institute of Food Research and the University of East Anglia.

Under the guidance of Invest in ME, a national charity pushing for better education and high-quality biomedical research into ME, sufferers and their supporters spent two years raising the money to fund a dedicated PhD studentship at the university, thought to be the first time a community of patients has directly funded research.

Affecting an estimated 250,000 people in Britain, ME – or chronic fatigue syndrome – causes persistent exhaustion which affects everyday life and doesn’t go away with sleep or rest.

However the cause of ME is still unknown and there is a lack of dedicated services for those with the condition. The partnership between UEA, IFR and Invest in ME has been established with the aim of making strides in understanding and treating ME.

Daniel Vipond & Prof. Simon Carding

Daniel Vipond & Prof. Simon Carding

Daniel Vipond, a former undergraduate student at UEA, won the three-year scholarship which started at the end of 2013. Based at the Institute of Food Research on the Norwich Research Park and working under the supervision of Prof Simon Carding at IFR and Prof Tom Wileman at UEA, Daniel will dedicate his time investigating the possible causes of ME, laying the foundations for further research into how to then treat the condition.

He will be researching the proposed condition ‘leaky gut syndrome’ – where the immune system reacts to germs and toxins which enter the bloodstream because of a porous or ‘leaky’ bowel – thought to be a possible cause of a number of conditions.

Daniel said: “Gut health is currently a popular area of research, but as yet no research has been done in to how it might cause ME. There is existing evidence suggesting that leaky gut syndrome is a very likely influence and if my research can show a significant proportion of ME patients do have this condition, it will pave the way for further research and even potential treatments.”

Leading scientists, including Dr Ian Lipkin from the Center for Infection and Immunity at Columbia University, have stated recently that they believe there is a strong link between leaky gut syndrome and ME. But while there are plans for other organisations to investigate this link in the future, UEA, IFR and TGAC are leading the international effort to further understand the causes.

As a collaboration between UEA, IFR and the Norwich Research Park, the project will benefit from the wealth of expertise and facilities available at the world-leading cluster of organisations which also includes The Genome Analysis Centre, John Innes Centre and the Norfolk and Norwich University Hospital.

Dr Ian Gibson, former Dean of Biological Sciences at UEA and the charity’s advisor on the project said: “The formation of a research programme on ME at UEA is a recognition of the campaign by the charity Invest in ME and the growing interest in the medical world to understand this complex illness which is quite frequent in Norfolk and across the world. The approach to tackling the problem in the portals of the Norwich Research Park is most welcome and we look forward to their work being presented at the coming Invest in ME International conference in London”.

Richard Simpson from Invest in ME said this flagship project is a first for the charity: “This research is absolutely essential as ME causes significant suffering for so many people. It is a world-leading project and the team across the Norwich Research Park has the facilities available to help resolve this disease, or at least begin to contribute to the understanding.

“The funds were raised by ME patients from across the UK and globally, which shows the huge demand for better understanding and proper research for this disease, and we look forward to working with Daniel and the team over the coming three years.”

The study is currently going through ethical approval stages and will soon be recruiting ME patients under the care of immunology consultant Dr Bansal at St Helier University Hospital in Surrey.

For more information about the study, visit www.investinme.org.

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