Dr Vance Spence (Chairman of MERGE)

Vance was instrumental in the founding and launching of MERGE. A graduate of the Universities of London and Dundee, he was a Principal Clinical Scientist responsible for vascular services and research and, in 1997, he rejoined the University of Dundee Medical School as Honorary Senior Research Fellow in the Department of Medicine, with the objective of stimulating research into the causes of ME.

Background

Chronic fatigue syndrome (CFS)/Myalgic Encephalomyelitis (ME) is a debilitating condition of unknown cause affecting all age groups but representing a substantial and widespread problem in the young. Recently, using sophisticated techniques, we have demonstrated the novel finding that abnormalities exist in the peripheral microcirculation (small blood vessels) of adult CFS/ME patients. Using recently developed assays we have also found significant differences between adult CFS/ME patients and controls in terms of some of our blood tests linked to blood vessel and inflammatory abnormalities.

CFS/ME research in the UK is under-developed, and for children it is almost non-existent. Estimates vary but there are probably around 20,000 children reported to have CFS/ME in the UK. In a recent report, the UK Chief Medical Officer highlighted the fact that research in children with CFS/ME was an urgent priority. There is some controversy as to whether CFS/ME of childhood is the same as that of adults, in terms of disease mechanism and manifestations.

It is important to know whether these abnormalities, seen in adults, are also present in children as it might be possible to address this with appropriate treatments in the future. We believe that work in this area is crucial, as CFS/ME is becoming one of the commonest causes of long-term school absence in previously fit childhood populations.

The Proposal

We are undertaking a study into children with CFS/ME at Dundee University in Ninewells Hospital. The study would involve a one off visit (of approx 3 hours) to the Vascular Diseases Research Unit, where we would carry out a set of investigations in children with CFS/ME and healthy controls. These investigations have been successfully carried out in adults and will be repeated this time in children.

The investigations include a medical history, a thorough clinical examination, completing a couple of questionnaires including quality of life questionnaires, a blood sample (for various blood vessel & inflammation research measurements, which is approximately 3 tablespoons worth) and the activity of the small blood vessels which will be tested on the skin of the forearm. Apart from the blood test all tests are non-invasive

Volunteers

We need to recruit 25 children with CFS/ME (aged between 9 and 18 years) and 25 healthy children who do not have Chronic Fatigue Syndrome to help us in our research in this condition (aged between 9 and 18 years).

What you can do

If you are aged between 9 and 18 years, or if you have a child with CFS/ ME in that age group, and you may be interested in participating in this unique opportunity. Because our tests are novel we require healthy children to also be recruited to enable us to compare the test results. If you or your child can think of any healthy child between 9 and 18 who would be willing to have the same tests we would be grateful for their contact details. This may be a friend, class mate, cousin, brother or sister etc.

Any costs (e.g. petrol, bus or train fares etc) incurred travelling to the hospital for a study visit will be reimbursed to any participants and their parent/guardian. If you are traveling a distance we can organise overnight accommodation which you will again be reimbursed for.

This will be the first medical research done in the UK on young people. If you would like to be involved in this very exciting project, please give Sheila a call on 0191 3892222 or drop an email to ypg@me-ne.fslife.co.uk

ME North East makes donation to Research funds

We are delighted to announce that ME North East has donated £1000 towards this valuable research which is to take place in 2006. The money raised through the Christmas Crafts Fayre has enabled this donation to be possible – fully supported by all the young people who were involved. If you do want to be involved, please let us know as soon as possible.