By LOUISE THOMASON
Scientists working on a major study into the causes of multiple sclerosis (MS) are appealing for volunteers from Shetland to take part in the second phase of their work.
Funded by the MS Society and led by Dr Jim Wilson of the University of Edinburgh and Dr Elizabeth Visser of the University of Aberdeen, the research aims to find a correlation between MS and genes and, specifically, whether an “MS gene” exists. The first phase of the study was launched last year and is progressing well, according to Dr Wilson.
Clinical research fellow on the project Dr Visser, a neurologist, has been in Shetland a number of times dealing with volunteers who came forward for the first phase and will be here every month for a week at a time until the autumn to conduct the next stage of the work.
Currently around one in every 250 people in Shetland and Orkney suffers from the condition. This figure is around double that of the Scottish mainland average, putting Shetland and Orkney in the unfortunate position of having the highest rates in the world.
Dr Wilson, originally from Orkney, said: “It’s not unlikely that there may be undiscovered genes in Orkney and Shetland as [the prevalence of MS] is so high.”
The link between genes and medical conditions can be extremely important. Dr Wilson explained: “Finding the genes which increase the risk of developing the disease is the first step to finding new treatments.”
The second phase of the research requires comparison with non MS patients. To do this, the study is recruiting volunteers to act as “controls”, so that their DNA can be related to the genes carried by people with MS.
Dr Wilson said: “By this I mean a group of people who share certain characteristics with the MS patients – for example being the same age and sex, and coming from Shetland, so we can compare the DNA of the patients with that of the matched comparison group.”
To do this they are looking for people who are from Shetland, born between 1930 and 1990 and have no family members with MS. If you would like to help with the study, call 0131 651 1643 or email Shetland@ed.ac.uk.
An appointment to meet Dr Visser will be made, where she will go through a short questionnaire and take a blood test.
Dr Visser explained what a volunteer can expect: “We’ll have a bit of a chat about their medical history and do the questionnaire which we’ve created, basically to make sure they don’t have MS,” she said. “The first 10 or so controls will be examined and then we’ll take a small blood test. This can be done at their GP or at home.”
MS is a chronic auto-immune disease caused by damage to myelin, the protective sheath which surrounds the spinal cord and central nervous system. This leads to disruption to the nerve signals that control muscle co-ordination, strength, sensation and vision.
It is the most common debilitating neurological disease in the UK, affecting around 85,000 people.
Despite the frequency of cases, the range and complexity of symptoms which can occur means there is no single diagnostic test for the disease.
Other conditions with similar symptoms often have to be ruled out, however some of the tests which can lead to diagnosis include MRI scans, neurological examinations and lumbar puncture, in which spinal fluid is examined for abnormalities.
The variety in symptoms and their severity often means different experiences for each person, however it usually means life is unpredictable.
The study has been welcomed by the members of the community.
Ann MacLellan, 66, from Lerwick, was diagnosed with MS 24 years ago. She said: “A lot of folk have wondered why something’s not been done before as there are so many people affected by it.”
Despite the length of time she has suffered, Mrs MacLellan’s symptoms have been manageable. “Really I’ve kept very well, I’ve been lucky, other than if I overdo it my legs get weak. That and the tiredness. But a lot of folk wouldn’t know I had it.”
However for Ian Richardson, 52, from Unst, MS has had a huge impact on day to day life.
“It’s affected everything. It defines how you live, whether you want it or not,” he said.
Diagnosed five years ago, his symptoms vary from time to time, with the worst periods preventing him from getting up the stairs.
However while mobility is a huge issue, there are other sides to the disease.
Mr Richardson explained: “The major problem that develops is your ability to deal with it. The mental attack is often worse than the physical, the drain of knowing you can’t do simple tasks.”
He continued: “I don’t like having to ask for things, but I have to. The little things become more important; it’s the frustration of that.”
However Mr Richardson said he is “very impressed” with the standard of service provided in Shetland.
He said: “Not just for MS, with anything of this type, it’s one of the best places to be. The entire house was fitted out with grab-bars and the MS Society locally has assisted me a great deal.”
Speaking about the study itself, Mr Richardson said: “Anything that develops a better knowledge of it and lead to the golden aim of destroying it is a great thing. It all helps.”
Dr Wilson and his team are, at the moment, primarily looking for people who do not have any cases of MS in their family, but he advised that anyone who does and would like to help should encourage their friends or neighbours to get involved.
Dr Visser continued: “The study is very important as the disease is very common in Orkney and Shetland, so it will be interesting to see if there is anything special [which would] make people more prone to it in the area.
“I’d just like to say a big thank you to everyone who’s been involved so far. We’re very grateful, we’ve had a remarkable response. If anyone would like to be involved or help, now is the time to say. We’re very excited about this study and we’re really hoping it will reveal a bit more about MS.”
More information about MS and support for patients and carers can be found at www.mssocietyscotland.org.uk and www.mstrust.org.uk. For local information, go to branches.mssociety.org.uk/shetland.