25% ME Group -Press Release -Stop Wasting Money

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25 percent ME group

FOR IMMEDIATE RELEASE

PRESS RELEASE

ME CHARITY CALLS FOR MRC TO STOP

WASTING MONEY ON INAPPROPRIATE RESEARCH

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A national ME charity representing severely affected ME

patients today called for the Medical Research Council (MRC) to

stop any further funding for psychological and psychiatric

research into ME (Myalgic Encephalomyelitis). The call is being

made by the 25% ME Group supported by The Countess of Mar

and other ME organisations (see below).

Simon Lawrence from the 25% ME Group said today " If the

funding available for cancer research was all directed at how

cancer patients think and feel about their disease instead of the

physiology of the illness there would be an outcry.

For years the severely ill ME patients we represent have seen

the MRC refuse funding for biomedical research whilst giving

grants for psychological research. In the last year alone six

studies designed to investigate the pathophysiology and

epidemiology of ME have all been denied funding by the MRC.

Yet the well funded PACE trial which many of the ME charities

wanted to boycott has been granted an extension of funding. It is

totally unacceptable that a hugely important study which is

investigating gene expression in ME and which could lead to a

diagnostic test, is being funded by patient-based charities whilst

trials of psychological therapy are receiving millions of pounds in

funding from the MRC. "

Simon Lawrence pulls no punches when he says " Public money

is being wasted on research that will be of little benefit and may

actually be harmful to ME patients. It is about time serious

money was spent on the pathology of this devastating illness. "

The Countess of Mar, endorsed by Dr Ian Gibson MP, made the

following comment, " As a member of the Inquiry led by Dr Ian

Gibson MP, as well as Patron of the 25% ME Group and of a

number of other ME charities, I have long been concerned about

the allocation of taxpayers' money to fund psychosocial

behavioural research whilst proposals for biomedical research

are rejected, ostensibly because they do not reach the high

standards thought necessary by the peer reviewers. Over the

last decade many millions of pounds have been squandered on

research which has totally failed to find cause, relief or cure for

this painful, demoralising and socially unaccepted physical

illness. It is high time that the funding organisations recognise

that they should now support some of the fine research,

conducted with minimal private funding, that is pointing to the

direction in which, I am convinced, solutions will be found. "

The undersigned ME organisations call for public money to be

directed towards funding biomedical research which is already

producing significant findings and is the only research capable

of leading to a treatment and cure for ME.

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LIST OF SUPPORTERS

Countess of Mar

Dr Ian Gibson MP

The ME Association (MEA) www.meassociation.org.uk

BRAME – Blue Ribbon for the Awareness of ME

CHROME – Case History Research on ME

The Young ME Sufferers Trust www.tymestrust.org

Invest in ME www.investinme.org

Dr E Dowsett MB.ChB.Dip.Bact

Dr Nigel Speight – Medical/Paediatric Advisor to ME charities

Professor Malcolm Hooper PhD.B.Pharm.C.Chem.MRIC

Northampton ME Support Group

ME Support Norfolk

ME Free for All.org

WMMEG (Consortium of West Midlands ME Groups) -

Herefordshire ME/CFS/FMS Group, Shropshire & Wrekin ME

Support Group (MESG), Solihull & South Birmingham MESG,

Warwickshire Network for ME, and Worcestershire MESG

Hampshire Friends with M.E.

Eastleigh & Winchester MESG

Reading Area MESG

SWAME (South West Alliance for ME) alliance of local MESGs

across Devon, Cornwall and part of Somerset.

MEEK (ME East Kilbride)

MEET (borough M.E. & CFS Self-Help Group)

Guildford MESG

Suffolk Youth & Parent ME Support Group

East Anglia ME Patients Partnership

Maidstone MESG

Doris MSc– Independent Researcher

Margaret – ME Advocate

25% ME Group

www.25megroup.org

21 Church Street, Troon

Ayrshire, KA10 6HT

Tel 01292 318611

CONTACTS FOR MEDIA

Simon Lawrence 25% ME Group 01292 318611

Hayley Klinger 25% ME Group Media Relations

hayley@...

Countess of Mar Tel: 020 72198627; email:

marm@...

TYMES Trust – Children's Charity. Jane Colby 01277

840527 and 07941 293357.

Notes for journalists

ME is classified by the World Health Organisation (WHO) as a

neurological illness alongside motor neurone disease and MS,

and the UK government officially acknowledges this.

It is estimated that 25,000 children and between 100,000 and

300,000 adults suffer from ME in Britain. The condition had cost

the taxpayer about 4 billion up to 2004 (2004 Hansard Tony

MP)

http://www.publications.parliament.uk/pa/cm200304/cmhansrd/vo040511/debtext/4051\

1-58.htm

The 25%ME Group is a unique charity representing the interests

of those 25% of ME sufferers who are severely affected rather

than the wider ME community already represented by The ME

Association and other UK based ME charities. This means

many of our members are so ill that they are totally bedridden,

some are wholly dependent on carers for the basic functions of

daily living and others are lucky enough to be able to leave home

in a wheelchair occasionally.

Around the world a vast amount of research demonstrates

immune system dysregulation, neurological problems, vascular

and cardiac abnormalities as well as endocrine and digestive

problems in this multi-organ, multi-system, devastating illness.

For an overview see

http://www.ahummingbirdsguide.com/researchgeneral.htm

Dr a leading ME specialist in the US says: " it is

one of the most disabling diseases that I care for, far exceeding

HIV disease except for the terminal stages " .

For info on the gene expression study based at the University of

London see here

http://www.meresearch.org.uk/research/projects/genesig.html

The preliminary findings suggest dysregulation of genes involved

in immune pathways, supporting the many reports in the

literature of immune dysregulation in the pathogenesis of

ME/CFS.