‘Save a lot, give a little’ – as charities launch £1m appeal for ME research

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Two charities are launching a recession-busting campaign to raise £1,000,000 for biomedical research into the much-misunderstood illness ME/ Chronic Fatigue Syndrome.

ME Research UK and the ME Association have joined forces in the ‘Just Four Quid’ campaign which will use the internet to encourage donors to take advantage of weekly money-saving tips, and then give some of the money they save to the appeal.

The campaign will begin on 12 May 2009 – International ME Awareness Day – and last for a full year. It will be run through a credit-crunching daily blog at www.justfourquid.com

“If all 250,000 people in the UK with ME/CFS gave just £4 to the appeal we’d reach the £1,000,000 target in next to no time. But nothing is ever that simple”, said Tony Britton, publicity manager at the ME Association.

“So we’ve designed this blog to help people save money on everything from their utility bills to their haircuts in the hope that, once they’ve saved some moneyt, they’ll give some of it back.”

“Of course, we’ll always welcome straightforward donations. People visiting the blog can choose to support either charity, or both”.

Inspired partly by the journalism of personal finance guru Martin Lewis, the “save a lot, give a bit back” approach could well become a model for charity appeals in these troubled times.

The Charity Commission has reported a fall in many charities’ donations as the recession bites. But the ‘Just Four Quid’ Appeal aims to buck the trend by leaving participants better off by the end of the year – even though they’ve given little and often to the campaign.

www.justfourquid.com will be a source of new money-saving ideas, and keep people up to date with progress.

“It’s always been a bone of contention among people with the illness that the big medical research bodies have put far too much money into studying psychological interventions for ME/CFS”, added Dr Neil Abbot, operations director at ME Research UK.

" ‘Just Four Quid’ aims to give ordinary people the chance to swing the pendulum back to much-needed physical research into the nature and causes of ME – and help bring forward the day when there are reliable diagnostic tests and even a cure for this illness".


ENDS

Notes for Editors:

1. CONTACTS

For more information about the ‘Just Four Quid’ campaign or about our respective charities, please contact:


Tony Britton, Publicity Manager, The ME Association, tel: 01406 370 293, mob: 07880 502927, email:tbritton02@yahoo.com

www.meassociation.org.uk



Dr Neil Abbot, Operations Director, ME Research UK, tel: 01738 451 234, email:meruk@pkavs.org.uk

www.meresearch.org.uk

2.  THE ‘JUSTFOURQUID’ WEBSITE

www.justfourquid.com will begin its daily blog on 12 May 2009. Every week, there will be a new money-saving tip – some with potential to save hundreds of pounds. Participants will be invited to contribute some of their savings to the campaign.

Visitors will also be encouraged to use the tips to help friends and family save money and in turn, make a donation. The campaign is focusing on money-saving as a means to raise money partly because of the recession but also because most people with ME/CFS are on restricted incomes due to their ill health and too unwell to take part in traditional fundraising activities, such as sponsored sports events.

The success of the campaign will rely on involving as many as possible of the estimated 250,000 people in the UK with ME/CFS – most of whom have no contact with any of the UK’s ME charities. One of the first actions of the campaign will be to ask participants to locate other people with ME/CFS and invite them to join in.

3. THE ME ASSOCIATION’S RAMSAY RESEARCH FUND

The Ramsay Research Fund is the dedicated research arm of the ME Association (charity number 801279), the UK’s longest-established, national ME/CFS charity. It is named after Dr Melvin Ramsay, an infectious diseases consultant who chronicled a major outbreak of the illness at London’s Royal Free Hospital in 1955.

Current research projects include a scheme to set up a central ME tissue bank in a UK hospital and a study at the University of Newcastle into abnormalities in muscle physiology. The RRF has also funded important new research at Glasgow Caledonian University into the genetic profiles of people with ME/CFS, which will hopefully lead to a diagnostic test and effective forms of treatment.



4. ME RESEARCH UK

ME Research UK (charity number SC036942) has the principal aim of commissioning and funding scientific (biomedical) investigation into the causes, consequences and treatment of ME/CFS. The charity also aims to ‘energise ME research’ globally by identifying potentially important areas for future biomedical research, producing high-quality professional reviews and reports, presenting research at meetings and conferences, and hosting international conferences.

5. INFORMATION ABOUT THE ILLNESS

Myalgic Encephalomyeltis / Chronic Fatigue Syndrome is a real, often relapsing, debilitating illness, affecting many thousands of people in the UK – with similar rates of incidence in Europe, USA, New Zealand and Australia. Up to a quarter of million people in the UK are believed to be affected.

The illness affects an estimated 20,000 children and young people, and is thought to be the commonest cause of long-term sickness absence from school in previously fit children.

Characteristic symptoms include a) muscle pain with physical and mental exhaustion following normal activities – quite different from what is normally experienced by healthy people; b) delayed recovery after physical or intellectual effort; c) Cognitive difficulties (eg, inability to concentrate, think or speak correctly).

ME is recognised as a neurological illness by the World Health Organisation, and as a serious, chronic condition by the Chief Medical Officers of the UK.

Studies have shown that most sufferers are unable to work to full capacity, and that 25% are severely disabled with many housebound or unable to get out of bed.

Significant abnormalities in brain, muscle and immune system functioning have been identified but the precise cause of ME remains uncertain. Many sufferers report that an infection triggered their illness.

No cure or effective treatment has yet been found.

Despite the impression often given by the press and psychological professionals, ME is not a psychological illness. Psychological investigations (which have had a major share of research funding in the past) cannot uncover its cause, and psychological therapies cannot provide a cure.

We look to biomedical research into the nature and causes of the illness to give us diagnostic tests, and a cure.

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