Medicine and me
Open Door - November 2009 page 5
Medicine and Me, a one day information event hosted by the MS Trust and the Royal Society of Medicine in October, brought together people affected by MS and health professionals so that they could listen and learn from each other.
The day was divided into three sections, each of which included a presentation by a person with MS and a doctor followed by questions from the audience.
Medication - risks and benefits
Prof David Bates
In the first session, Linda Oatley shared her experiences with the disease modifying drugs and not knowing if her lack of subsequent relapses was due to the drug or to the course her MS would have taken anyway.
Professor David Bates reviewed the range of disease modifying drugs that can currently be prescribed. He drew attention to research that suggests that early treatment is more effective in delaying the onset of progression. Technology now allows MS to be identified after a single episode of neurological symptoms and treatments could start at this point. However, this remains a contentious point.
Although causing some side effects, the beta interferon drugs and glatiramer acetate have been shown to be safe in more than ten years of use. Newer drugs offer a greater reduction in relapse rates but have the potential for more dangerous side effects and as yet unknown long-term effects. Getting the best results from treatment will need to involve more frequent monitoring and involve greater discussion between doctor and person with MS to fully understand risks and benefits.
Audience questions touched on the lack of treatment for progressive MS. The understanding of progressive MS is improving and this may lead to identifying possibilities for treatments. There is currently a trial of fingolimod (FTY720) in people with primary progressive MS.
Future uncertainty and future research
Prof Neil Scolding speaking
Mike Laver described his view of his MS as a three legged stool - the legs consisting of research into safe and effective treatments, research into the causes and possible cure, and help into the day to day living with MS that is principally provided by the charities.
Professor Neil Scolding explored opportunities for future research by focussing on the different mechanisms of MS - inflammation and demyelination that occur during relapses and the loss of nerve cells associated with progressive MS. He suggested that the future of treating relapsing MS might lie in monoclonal antibodies - drugs that can be targeted at specific parts of the inflammatory process, blocking or altering cells in the immune system.
For progressive MS, research is focussed on both protecting nerves from further damage (neuroprotection) and in repair using stem cells. Prof Scolding described how the development of targets for stem cell treatment is shifting with better understanding of the processes of MS. His own work, currently being prepared for publication, has used cells extracted from an individual's bone marrow. Although a very small trial, primarily of the safety of the procedure, the early indications of effectiveness are encouraging.
Family relationships and sexuality
Vicki Matthews, Sandra Buchanan and Dr Alexander Burnfield
In the final session, Shaun McCarthy and Sandra Buchanan talked about the effects of MS on their families, the stresses it can put on relationships and the continuing impact on their children.
Dr Alexander Burnfield, a psychiatrist, picked up on these themes. Although a positive attitude helps, he stressed the importance of recognising the 'dark side' of MS. When MS affects a family, there are losses - whether physical losses, or the loss of an imagined future. Dr Burnfield stressed the importance of recognising it is appropriate to feel sad, angry and afraid at times. If this isn't done, these emotions can come to the surface as resentment and hostility, undermining relationships and building isolation.
Commenting on the day, one attendee said: "Good speakers, good content, good questions. Many of those who spoke to me said they had learned new information about MS from the day, which is what it was all about."
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