On Friday the 27th June I was invited to speak at the Raising Expectations, Managing MS conference in Vienna, Austria. There were 20 speakers in total over two days from across Europe, for the most part 19 doctors/neurologists and my good self (MS Patient), which to start with I found very interesting. 

When I was asked to take part in this conference, I considered the opportunity in great detail asking myself what I really wanted to achieve from taking part. Initially I was asked to get involved as over the last two years my own story with MS and more so my recovery has started to travel around the world. My book, blogs, website and media work is being picked up and this in itself presents me with a great opportunity to share my ideas with others. What it also does though more importantly is that over the last few years literally hundreds of MS patients have contacted me and shared their own thoughts and frustrations. These types of events give me the ideal opportunity as a result to share the views of many in the MS community. This is a very empowering feeling but also brings with it an air of responsibility. 

Bearing this in mind, I thought this conference was the ideal platform to ask questions of the medical professionals and also give them an understanding of what us (MS PATIENTS) think about and are frustrated with. The crowd present was made up of over 500 neurologists, scientists and medical doctors, some of the best in Europe, so quite an opportunity to make a number of strong points.

For those of you who don't know my journey, very briefly for three years between 2006/09 I really struggled mentally and physically with my health as the MS started to run havoc in my body. Around 2010 I decided to start a fight back, and I implemented a plan, stuck to it rigidly and very thankfully, four years later I am now very strong as my body continues to heal allowing me to lead a very normal active life. Today I live relatively symptom free, although at times I have smaller flare ups, but these instances are becoming less regular.

As I have widened my research across the world in the last two years, my own view is that my story is not miraculous, but one where I took control of my mind and body and worked very hard every day to defeat the MS, stopping its progression and allowing my body to heal. My medication has helped me manage the relapses no doubt, but my nutritional, exercise and mental health plan, has been an explosive combination, stacking the odds against the MS.

One of the huge frustrations I have currently is that there appears to be only one topic of discussion at these types of events which largely evolve around the disease modifying drugs available and all the latest news on new more potent treatments. This for me is really worrying and I felt it important that I shared these frustrations with the audience. What is more worrying however is that there is currently a range of new drugs being brought through the trials which are becoming more and more potent. I learned on Friday how the pharmaceutical companies are now mixing different drugs with patients on these trials also to see if the combination has a more efficient way of dealing with the MS. My concern which was confirmed by other speakers at the conference, is that really and truly the doctors cannot guarantee what if any side effects will be of this new more potent approach. For me what is really happening therefor is that the medical industry are rolling the dice with the MS patients in order to achieve the winning combination. In short I am uncomfortable with this. However part of my brain recognises that if we are to make progress in the field of medicine, this is what has went on for years and what needs to continue if we are to get to the bottom of illness in general. My opinion therefor is that I believe any trials need to be well regulated and managed to protect the patients taking part. I believe this is currently the case but I do urge extra vigilance and controls be put into play.

It has become more and more accepted in the last ten years that there are other ways in which patients can implement and protect themselves, going on their own road to recovery. In short it appears that nobody wants to recognise the importance of changing your environment and the impact this could have on your MS. I now find this insulting to be frank.

It is clinically proven now that by eating better, exercising more, use of particular supplements like vitamin D, B12 and Omega fish oils, and a positive approach to your MS you can actually take back control and help your body heal and recover. I think its important at these kind of events that it should be made priority to highlight ALL Of the actions patients can take when fighting the MS monster.

On Friday night I was at dinner and was astonished to find out that many of the neurologists I spoke to had never heard of Dr Terry Wahls from USA. I was shocked to hear that many has also never heard of Dr George Jelinek of Australia. These two doctors have incredible stories and factual evidence to back up how explosive changing your environment can be to MS patients and helping them overcome the condition.  By the way both of these doctors also have MS and are walking the walk like myself in terms of their own plans and stories of recovery and healing.   So why is this message not getting through? The answer for me is. . . . . . I simply don't know!!!

What I do know is that in the past 20 years we heve made outstanding progress in the field of MS. I know that there are a huge amount of medics worldwide working night and day to get to the bottom of the illness. I know and recognise that there is a huge amount of  work going on in this area by many people. All tremendously positive, however I have to qualify this and say that there is a huge amount of work still to do.

It appears that in terms of getting the message out there around the different approaches to managing the condition outside of medicine is going to come down to people like me and other MS patients, activists and organisations across the world.  I really believe this. If this is the case then I am up for the cup and over the next few years will increase my role on a global perspective to try and achieve this with the help of many others. The great thing is there are now so many positive MS stories being shared across the world, largely through social media that is inspiring a whole new batch of people in the MS Community.  I do feel that social media has a huge role to play in this capacity and I feel that every MS patient and also medical professional should embrace the medium.

I am looking forward to the challenges ahead. 


#Attitude Is Everything

Conor DevineComment