People with MS Vic, as usual held its annual one day conference “Living Better with MS” on the first Saturday of May, and once again we had three excellent speakers: Andrew Potter, (National Advocacy Coordinator, MS Australia); Helmut Butzkeuven, (Head, of Neuroscience, at, Monash University, and Foundation Director of Neurology, at Alfred Health); and Andrew Giles, (Executive Officer(The Neurological Alliance Australia)
Helmut was the keynote speaker and as usual was very interesting. He started by speaking about vitamin D and the Epstein Barr Virus (EBV). How higher vitamin D levels do appear to reduce the occurrence of MS but do not impact on its progression. And although most people who show EBV antibodies don’t develop MS, EBV appears to be an essential precursor to MS. However, its role in or impact on MS progression is unknown, and MS Australia is supporting two trials examining whether treating MS sufferers with EBV medication, might reduce MS fatigue levels or slow MS progression.
He then spoke about the discovery of a type of MS lesion, (SEL), which goes on growing years after it first appears, and which may be the reason why some patients’ MS continues to progress even though they show no new lesions. Also these SEL lesions could prove valuable biomarkers and a trial treating patients with SELs could be an efficient way of testing the impact of drugs on progressive MS. SELs may also prove useful biomarkers for other research for example looking for remylenation candidates.
Helmut also spoke about new approaches to research called OCTOPUS and PLATYPUS which would enable two or more drugs to be trialled simultaneously to eliminate those which offer no prospects. Thereby reducing the cost of trials. Finally Helmut spoke about the fact that people with MS are living longer which needs to be taken into account in trials, and he emphasised the importance of patients ensuring they get vaccinated against pneumonia, influenza, and shingles all of which become more prevalent with age.
Andrew Potter and Andrew Giles both spoke about the work they and MS Australia do lobbying for improved services and facilities for people with MS. Andrew Potter has MS and coordinates a group of “advocates”, volunteers who also have MS, who strive to build relationships with their members of parliament to ensure that politicians of all persuasions are well aware of the costs and impact of MS and the needs of people living with the disease.
Andrew Giles spoke about the work of the Neurological Alliance, the peak body representing many neurological disease specific organisations and about MS Australia (one of the driving forces behind the Alliance. The Alliance primarily targets the Federal Government and its agencies, trying to address areas of common interest; (1)Increasing funding for research, (2)Strengthening the NDIS and ensuring its staff understand the nature and patterns of neurological disorders; (3)Ensuring equitable access to assistive technology for those not on the NDIS; (4)Ending the discrimination against people over 65 caused by their exclusion from the NDIS; and (5)Improving integration between the Health-care, Disability-care, and Aged-care systems.
Audience members had the opportunity to ask questions and chat with the speakers during breaks. Videos of the presentations are available on the PwMS-Vic website.

Nigel Caswell.

Videos of the conference speakers are available for viewing from our YouTube Channel.