Last updated: 03/08/2010 15:00:00
Hope was last night offered to thousands of people with ME after it
emerged crucial talks were under way to establish a world class
research and treatment centre in Norwich.
Campaigners have spent years trying to improve the lives of people
with the debilitating condition, for which there is currently no cure
and affects 10,000 people in the eastern region alone.
Now talks between Dr Ian Gibson, the national Invest in ME charity,
the UEA and NHS Norfolk have taken place with the view of setting up a
centre to properly research, diagnose and treat the illness. If it
goes ahead, it will be the first centre of excellence in the country
and firmly put Norwich on the map of advancing medicine and
ME (myalgic encephalomyelitis), also known as chronic fatigue
syndrome, is a contentious illness because for years clinicians and
other medical professionals refused to recognise it and it was often
dismissed as "yuppie flu", despite causing years of complex problems
such as overwhelming tiredness, swollen glands, painful muscles and
joints, and severe sleep difficulties.
However, years of campaigning and hard hitting inquiries in the
condition - one of which was held by former Norwich North MP Dr Ian
Gibson - has raised further awareness and understanding of the
Dr Gibson said: "This centre could totally change the lives of people
with ME. At the moment there is no proper diagnosis for ME and
treatment is patchy. We would do research here and, as this develops,
we can treat patients from all over the country and the rest of
"This is a great opportunity to treat chronically ill patients who
have maybe not had proper treatment in the past.
"There are 250,000 people [nationally] with ME and this could finally
make a difference to all of them."
There are preliminary discussions to establish at the research centre
at the UEA - because the equipment and research facilities are already
there - with services commissioned by NHS Norfolk.
The service would offer early diagnosis, examination and treatment of
the illness, with diagnosis commissioned by NHS Norfolk and referals
made through GPs.
In Norfolk and Suffolk there are an estimated 4,000 people with ME
from the age of six and above.
Richard Simpson is the founder of Invest in ME which campaigns for
research and funding to establish causes and an understanding of the
illness. The independent charity will carry out the official
campaigning for funding for the centre once a formal agreement is
He said the research being proposed would be the "most advanced possible".
"ME is not often diagnosed properly because doctors often eliminate
other illnesses and then conclude it could be ME without proper tests.
The patients do not get treated properly," he said. "Early diagnosis
is so important and this centre would help establish that happens.
"It will start smaller and just get bigger. At the moment nobody is
getting better. It is a hideous illness and people suffer a lot and
some die from it.
"There is no other illness which affects so many people yet is so unrecognised and so underfunded. It is not right that people have to
travel abroad to get the right treatment. It would be so fantastic to
carry out all these functions in Norwich and the next few months are
crucial in terms of pressing ahead with this. We won't give up the
fight until we are treating ME properly."
Mr Simpson, from Norwich, and his wife Pia set up the charity after
both their daughters developed ME. Annika Simpson, 24, has had it for
11 years and Jennifer, 20, for seven years.
They are basing the new centre on an American clinic called Whittemore
Peterson, an institute for neuro-immune disease in Nevada which helps
thousands of people with ME through research, scientific developments
and subsequent treatment.
The charity already has support from other charitable organisations
Discussions will be going on over the next few months and once a
decision has been made, funding will begin to the tune of £150,000 a
A spokeswoman from the UEA said: "Preliminary discussions have taken
place, but no decisions have been made at this stage.
"Whenever any new centre is proposed at the University, there has to
be very detailed exploration of logistics and implications for the
department concerned before any commitment is made."
Dr Gibson and Mr Simpson were hoping the Norfolk and Norwich
University Hospital would be become involved by setting up clinics,
but bosses have said they have no plans to see patients there so they
are looking at suitable services across the county.
In 2006, a parliamentary group headed by Dr Gibson spent a year
looking into ME, taking evidence from sufferers, carers and experts,
and he argued for massive investment, which has yet to materialise.