Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk by Chris Douglas
Shortlink to this posting: http://wp.me/p5foE-33z
or http://tinyurl.com/ReviewIiMEProposal
At the 5th Invest in ME International ME/CFS Conference held in May, this year, a proposal was announced for the establishing of a “Centre of Excellence for ME” in Norfolk. To the best of my knowledge, Invest in ME had undertaken no national consultation with ME patients before drawing up its proposals.
Today I am publishing a review of Invest in ME’s proposal prepared by Chris Douglas.
A text version of this review is published in the next post.
Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk
By Chris Douglas
27 August 2010
Introduction
In August 2010, Invest in ME (IiME) published a document titled: ‘A New Era in ME/CFS Research: An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis’¹.
It is assumed that this document is a precursor to a more formal and detailed proposal that will be used to secure consultative input and financial commitment to the project.
The following review highlights specific areas in which the proposal could be strengthened if, in particular, it is to maximise commitment from potential financial donors.
Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk
Open Word document here: Norfolk Proposal Review 27.08.10
A text version of this Word document is published in the next post
Related information
“Invest in ME is an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.”
Invest in ME is constituted as a Trust, registered with the Charity Commission and run by a committee of three Trustees/Directors. Invest in ME is not a membership organisation. The organisation was founded in 2006 by carers and patients, Sue Waddle, Richard Simpson and Kathleen McCall (current chair). Ms Waddle has since stood down as a Trustee.
http://www.investinme.org/Research%20-%20ME%20Institute.htm
Invest in ME
A UK Centre for Biomedical Research into ME
Read the announcement here
The Research Proposal published by Invest in ME in July can be read here in PDF format:
“A New Era in ME/CFS Research
“An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis”
“A VISION FOR THE FUTURE
“Recent biomedical research and advances in knowledge and treatment regarding Myalgic Encephalomyelitis have brought more urgently needed awareness of this disease. In the East Anglian region of UK an opportunity now exists to bring real benefit to patients and establish a unique capability which will attract attention and recognition from across UK and Europe.”
Media coverage
Great Yarmouth Mercury
Hopes for ME centre in Norfolk raised
31 August 2010
“…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 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 under way, 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 Norfolk and Norwich University Hospital and is lining up discussions with the US Whittemore Peterson Institute, an institute for neuro-immune disease in Nevada that helps thousands of people with ME through research, scientific developments and treatment…”
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Plans for world class Norfolk centre
Sarah Hall | 27 August 2010
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Environmental Illness Resource Blog
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News – Chronic Fatigue Syndrome News
Matthew Hogg | 13 August 2010
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EDP24
Norwich centre for ME sufferers planned
Sarah Hall | 3 August 2010
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