From the Eastern Daily Press, Norwich, 30 August 2010 (story by Sarah Hall)
Plans to establish a world class research and treatment centre for people with ME have moved a step closer as health organisations in Norfolk are involved in further talks.
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.
As we reported last month, 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.
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 made.
Now the charity has offered to send some of the UEA researchers to a major biomedical research symposium in Australia at the end of the year.
Mr Simpson said: “This would involve them discussing work with the top ME researchers and clinicians in this field from around the world.
“Discussions are underway and we are really hopeful this will move things forward. The centre could change the lives of patients with ME.
“Early diagnosis is so important and this centre would help establish that.”
The charity is also planning to organise a conference in Norwich with the UEA and the N&N and is lining up discussions with the US Whittemore-Peterson Institute, an institute for neuro-immune disease in Nevada which helps thousands of people with ME through research, scientific developments and subsequent treatment.
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. There are 250,000 people nationally with ME.
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 referrals made through GPs.
Linda Crowhurst, right, has been living with ME for the past 17 years. Linda and husband Greg, both in their fifties, live in Walsingham and say they have been left with “little hope” for Linda’s treatment.