News

EMA Gilenya review

Information released by MS Research Australia (MSRA)

A review of Gilenya by the EMA has been initiated following the report of a patient in the USA who died 24 hours after taking Gilenya. The review also includes a total of 11 deaths worldwide, however the causes of these deaths were mixed and the EMA acknowledges that a relationship of these deaths to Gilenya is not established. The exact cause of death in this recent case remains uncertain.

NDIS update January

As promised we will be providing monthly NDIS updates to all clients and staff so we are all as well informed as possible about the once in a generation change that is upon us.

Like you we are all at the development stage of the NDIS and last year we shared invaluable information which is essential to know about the NDIS:

The NDIS is insurance not funding providing people with disabilities, their families and careres with the regular care, support , therapy and equipment they need. As a Medicare-type scheme, it will provide a secure and consistent pool of funds for these services and support.

MSIF CCSVI Research Bulletin January

The MS International Federation (MSIF) have produced their latest round-up of research papers on CCSVI and MS published in the medical literature. Click here to download a copy.

Chronic cerebrospinal venous insufficiency (CCSVI) is a term used to describe drainage abnormalities in the major veins leaving the brain. The condition was originally described by Dr Zamboni and his colleagues at the University of Ferrara, Italy. They proposed that the location of venous obstructions may play a role in determining the clinical course of MS. The hypothesis is currently the subject of intensive research. The findings of these studies, including the treatment of CCSVI by endovascular surgery, are variable and have resulted in considerable controversy amongst both clinicians and people with MS.

Be part of MS and fatigue research

If you are someone who experiences fatigue as part of your MS, Dr Merrill Turpin from The University of Queensland would like to talk to you about the ways that you manage your fatigue.

Dr Merrill Turpin is doing some research that is designed to understand the strategies that people find helpful or not when managing their fatigue. Because some strategies will work for some people and not for others, they want to talk to people about the strategies they use and those they don’t and gain an understanding of the factors that influence whether something works for someone.