Talks are reported to be underway that could lead to the establishment of a world class research and treatment centre for myalgic encephalomyelitis/chronic fatigue syndrome in the UK.
Should the plans come to fruition the centre would be a lifeline for the hundreds of thousands of people in the UK who suffer from the debilitating condition that leaves many severely disabled and unable to work while the National Health Service (NHS) has so far failed to offer treatment of any significant benefit.
The current talks involve NHS Norfolk and the University of East Anglia and any centre for research and treatment into myalgic encephalomyelitis (ME), also commonly referred to as chronic fatigue syndrome (CFS), would be located in Norwich.
Former Norwich North MP Dr. Ian Gibson, who has chaired a hard hitting inquiry into the condition and campaigned for greater recognition in the past, has been instrumental in getting the project to this stage. The national charity Invest in ME which is committed to furthering education into ME and funding biomedical research is also involved in the talks.
In a press release in March of this year the Invest in ME stated its intention to support the work of The Whittemore Peterson Institute for Neuro Immune Disease (WPI), the US centre in Nevada that discovered the XMRV retrovirus in ME/CFS patients in 2009. It is now thought the proposed research and treatment centre in the UK would be modelled on the WPI and seek to make big steps forward in both the understanding and treatment of ME/CFS which has thus far been lacking.
Dr. Gibson is quoted in Norfolk regional newspaper EDP 24 as stating: "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."
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.
The service would offer early diagnosis, examination and treatment of the illness and preliminary discussions are underway for the centre to initially be based at the University of East Anglia which already has the research facilities required.
A spokesperson for the University 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 Invest in ME, along with ME/CFS sufferers across Europe will be hoping the centre gets the go ahead and becomes the centre of medical excellence envisaged. Dr. Gibson headed a parliamentary group in 2006 that spent a year looking into ME/CFS, taking evidence from sufferers, carers, doctors and researchers, and argued for massive investment from the UK government which is yet to be forthcoming. Invest in ME was founded by Richard and Pia Simpson whose two adult daughters both developed the illness during their early teens.
The Simpson's hope any new centre will be the European equivalent of the WPI and provide cutting edge research into the causes of ME/CFS and potential treatments that would follow such discoveries.
Mr Simpson said: 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.