MEA support statement on wasteful research

ME CHARITY CALLS FOR MEDICAL RESEARCH COUNCIL TO STOP WASTING MONEY ON INAPPROPRIATE RESEARCH

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.

LIST OF SUPPORTERS

Countess of Mar

Dr Ian Gibson MP

The ME Association (MEA)

BRAME – Blue Ribbon for the Awareness of ME

CHROME – Case History Research on ME

The Young ME Sufferers Trust

Invest in ME

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 (Peterborough M.E. & CFS Self-Help Group)

Guildford MESG

Suffolk Youth & Parent ME Support Group

East Anglia ME Patients Partnership

Maidstone MESG

ScotME

Dumfries and Galloway ME Support Group

Doris Jones MSc– Independent Researcher

Margaret Williams – ME Advocate