Monday, March 31, 2014

Crowdsourcing Research Funds

In what other severe disease would research be funded by patients cadging a few bucks from their Disability checks?  We have patients eating Ramen -- or even skipping meals -- to pay for research.  This is unacceptable!

-------------------------------------------------------

http://www.uea.ac.uk/mac/comm/media/press/2014/March/mefunding

Crowdsourcing raises vital funds for ME research into 'leaky gut syndrome'
Mon, 31 Mar 2014

Patients living with myalgic encephalomyelitis (ME) have raised finds
to allow new research in to the misunderstood condition to take place
at the University of East Anglia and The Institute of Food Research.

The money will fund three years of ground breaking research into
'leaky gut syndrome' - where the immune system is thought to react to
germs and toxins which enter the bloodstream because of a porous or
'leaky' bowel - believed to be a possible cause of a number of
conditions.

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, 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 Tom Wileman at UEA and Prof Simon
Carding at IFR, Daniel will dedicate his time investigating the
possible causes of ME, laying the foundations for further research
into how to then treat the condition.

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.

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 £100,000 to
fund a dedicated PhD studentship.

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.

------------------------------------------------------------------------------

http://news.ifr.ac.uk/2014/03/crowdsourcing-me-research/

Crowdsourcing raises vital funds for ME research
31 March, 2014

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, 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.

No comments: