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Talks under way for ME centre in Norwich
SARAH HALL
Last updated: 03/08/2010 15:47:00
Hope has been 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, which affects 10,000 people in the eastern region alone.
Now talks between former Norwich North MP 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.
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 inquiries in the condition - one of which was held by Dr Gibson - has raised further awareness and understanding.
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 Europe. “
There are preliminary discussions to establish at the research centre at the UEA, with services commissioned by NHS Norfolk.
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.
He said the research being proposed would be the “most advanced possible”.
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.
A spokeswoman from the UEA said: “Preliminary discussions have taken place, but no decisions have been made at this stage.”
This would be great, we haven't had much help available as the person who used to run clinics about chronic fatigue etc in Gt Yarmouth, left a while back and I don't think there has been any help available for a while.
It would be good if they linked this in with fm diagnosis and help too.
As I know Ian Gibson, I will email and suggest it should the centre go ahead.
Lizx
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Liz
they are already linking ME and FM so if CFS is the new name for ME then they are linked.
Does that make sense lol
Wisj=h there were more places that understood it
d x
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Dear All
Hello
I totally agree there needs to more specialist centres to deal with this illness.
It had taken so long for it to be given the recognition it deserves.
Take gentle care
Very best wishes
xx
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i have been diag with fibromyalgia in 2009 and i am only young. i hav ebeen told by pain clinic i have also got cfs although this is not actually been diag by rhuemu who diag my fm. however i am confused now. i have all the symptoms of cfs .. now i find out they are saying that cfs is ME. which ialso fit. there is no fibro group or me group near me . so no answers. xx
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Dear All
Hello
Maybe this website can offer some help:
http://www.chronicfatiguesyndrome.me.uk/support-groups.html
Take gentle care
Very best wishes
xx
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Hi Emma, I have fm and also cfs, there's such a problem with getting a proper diagnosis so if centres like this are set up, maybe it will make things clearer for sufferers.
You say there is no support group nearby, how about trying to start one, maybe there are other young people who have similar problems and by getting together even if only on line, you could helpe one another. These illnesses do seem to be linked but not all medical bodies recognise that, I am sure it would be more helpful if the three things were investigated together.
We have a fm thread somewhere, I will try to nudge it up for you.
Good luck and pop in and let us know how you are getting on
Lizx
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Emma
where abouts are you?
are you on facebook there are a lot of groups on there which are good to find info and how people deal with different symptons
d x
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