Welcome to our first Recovery for 2019. Can you believe it is 2019? I recall vividly waiting for Y2K to stop all our computers once the clocks ticked over to 2000. Or closer to home looking forward to the Sydney Olympics. Great times, full of hope for a new millennium and a swag of medals at our very own Olympics, the most successful ever.
The above neatly segues into a topic I canvassed at our recent meeting held last Saturday at Royal Rehab Ryde; the amount of research being conducted in Australia; how far we have come. We have people here as good as any other who can conduct world’s best practice research and in the case at RPA, research not being conducted anywhere else.
As some of you will be aware, I suffer from a condition not uncommon amongst disability advocates, multiple hat syndrome, membership of quite a number of disability employment advocacy groups and access and inclusion advisory groups. In the course of these activities I receive a fair bit of information, mostly newsletters, about what is happening in the wider disability space. Recently, I followed a number of links in a newsletter relating to immunological research and came upon the Garvan Institutes Hope Research work. Basically, they are looking at 36 autoimmune illnesses, including GBS/CIDP and also of personal interest to me, Ulcerative Colitis, and trying to ascertain why some cells become ‘rogue’. The good news is that they now have technology to identify these ‘rogue’ cells but now they have to also identify the mutation and cause.
Early days yet and I would suggest a cure is still some way off however, as with so much of this type of research it is about identifying/developing road maps with interim steps. Often this results in improved treatments, models of care and strategies to mitigate symptoms along the way as the research progresses. In this regard and of particular interest was a program I saw on the TV a few weeks ago that involved a non-invasive treatment to reduce tremors in certain patients using an MRI targeting certain locations in the brain. I also understand there are other research teams looking at other ways to reduce tremors. Many with GBS/CIDP develop tremors and it can be very debilitating and impedes efforts to remain independent. Thus, if we could reduce the tremors whilst not a cure it does significantly improve the quality of life of the subject patient.
As people impacted by GBS/CIDP we know there is no current cure and treatments may or may not work and thus, while we wait it is encouraging to know there are some brilliant people in Australia and across the globe seeking to develop treatments and strategies to help improve the quality of life of people in this space. Indeed, Professor Matthew Kiernan, who leads CIDP research at RPA Hospital was awarded an AM in the Australia Day honours. This is high recognition and helps underline the importance of research in this space.
I am sometimes asked,” What does the Association do to support research in this space?” You may recall quite a few years ago Professor Arun Krishnan was conducting research assessing whether Fampridine, an MS drug, could help improve mobility in CIDP patients. I know a number of members participated in the research that unfortunately failed to produce any significant results. Also, a number of members have participated in the RPA CIDP research. Further, research basically can be either lab based structured research or there is also clinical research where data obtained from patients is accumulated and analysed. This is one of the values of the QST machine donations as the use of these machines will generate further clinical research data. Why is this important? Well as we know GBS/CIDP is rare and every patient presents differently and whilst there are similarities between some patients, equally there are a lot of differences.
Identifying patterns/similarities with such a low base makes it very challenging to get meaningful data and extrapolate useful information to improve treatments etc. However, if data from patients tested with QST at Westmead and also John Hunter Hospitals could be eventually collated than this could potentially provide a greater pool of data which could then be possibly utilised by other researchers then the possibilities are multiplied. We do not know with any certainty where the use of QST will take clinical research but we do know both neurological departments expressed a critical need for QST and in the hands of brilliant and committed people the future is now much brighter for potential break throughs and improvements in treatments and models of care.
On another note, some of you may be aware we have formed a Communications Sub-Committee to oversee how we communicate and maintain relevancy in an everchanging technological landscape. You will note some changes to the website in the coming months, mostly small ones at first as we transition to a new hosting platform. If you have any ideas or suggestions for our website, our newsletter Recovery or indeed any aspects of the Association and how we provide support please do not hesitate to contact us. In this regard, we are always seeking content for either Recovery or the website, particularly your stories, the good, the not so good, the funny etc. We also encourage partners to provide insight into another perspective of the recovery process and for those who have provided stories in the past, we would encourage a ‘where are they now’ perspective articles. As we know, for many, recovery is lifelong and not always in a straight line but that does not necessarily mean the news is all bad and indeed finding mirth in adversity can be the medicine that keeps us doggedly going along the road to recovery.
Until next time.