Multiple Sclerosis

In the last seven days news broke that Dr. Denise Fitzgerald and her team at Queens University Belfast have secured new funding to the tune of £2M to continue with research that hopefully one day will lead to them finding a combination of drugs that is able to reverse the damage caused by Multiple Sclerosis.

Firstly it must be said that although I haven’t had a chance to visit Dr. Fitzgerald’s lab as yet at the university, we have been in contact and I can only admire the excellent work her and her team have done over the years in this regard, and also put on record that it is great news that they have secured further funding to help them continue with their mission.

MS is a very cruel condition, and generally presents itself to people between the ages of twenty and forty years old.  I should know all about it, as this year is my tenth year living with MS.  Physically, emotionally and mentally, this is one of the conditions in life you would like to avoid.  In the UK there is an estimated one hundred thousand people affected, however I personally feel this figure is much greater, and as of today there is NO medication available that can help people recover from the damage done by MS.

I have noted in the last week when this story broke that all of the main media outlets have ran with it, and it has been welcomed by everyone within the MS family and so it should be, as we the patients certainly need a lot more progress in the conventional area of therapy than is available presently.

However and this is an observation as a patient I feel I need to put on record with regards to this and other similar stories that break about MS therapies in the last few years.  As things stand today, there are no drugs available that help patients reverse their MS.  This is a fact.  There are a number of disease modifying treatments available that might prevent relapses up to thirty percent, however as things stand, medically that’s the best there is going at present.

My own story of recovery hit the national headlines in 2013 when I was invited onto one of the most popular talk shows in the country aka “The Late Late Show”.  This was an incredible opportunity for me to share a positive story about living with MS as all of us have heard too many negative accounts.  Following the show my story travelled far and wide and the fact that I was doing well started to get a lot of attention.

In the last few years I have been invited to speak at a number of medical conferences across Europe, which has been a great experience for me as I was able to meet up close and personal the leading lights in MS research and have direct conversations with the pharmaceutical companies and neurologists who are trying to solve the MS puzzle.

I have to be very honest with everyone right now and air my concerns more publically which I discussed at the last European Convention on MS, which I spoke at in Brussels last summer.

It now appears huge percentages of people affected by MS, including the majority of the stakeholders namely patients, neurologists, pharmaceutical companies, charities along with others, are only interested in talking about the medication and the drugs as a way to fight the condition – everything else comes secondary and just about gets a mention.  No matter where I have went over the last few years, or whom I have spoken with, the conversations are always the same and usually start with what treatment are you on?  We are all now obsessed with finding the magic bullet that will cure MS in years to come, and I now feel this is at a huge cost and becoming completely counter productive in many cases.  Don’t get me wrong, there will be nobody happier if and when this day arrives that we do find a cure or reversing agent, however its going to be quite a while given all of the latest medical reports available.

MS and ME

Let me give you a brief overview of my MS situation.  Diagnosed in 2006, I was terribly ill for four years and had given up.  Walking became a real problem, along with over twenty or so other issues directly linked to the MS.  Around 2011, I started to fight back against the condition through my medication, nutrition and exercise.  In the last few years I have been able to reverse my own condition and repair my own body, to the point where walking was difficult in 2010, when now I am competing in Ironman triathlons, running marathons and training six days a week in the gym.  Earlier this year I stopped taking my medication as I was satisfied with my level of recovery and convinced with the plan I was working to, it was the right time to quit the medication.  Afterall we all know the medication does not repair myelin – that’s not what it’s designed to do. 

I now know that it has been my nutrition and exercise plan that has got me to where I am today, which is in a reasonably good state of health.  I appreciate I am doing exceptionally well, and more importantly that each of us have very different experiences whilst living with MS, however I have become concerned that we are not listening to successful recovery journeys closely enough.

The thing is there are now many people who are advocating the same plan as me and doing equally well whilst living with MS.  Why not check out Dr. Terry Wahls, a neurologist herself, and clinical professor at Iowa University, who was disabled badly with MS a number of years ago.  After trying every drug going she knew she had to change her approach.  What she then did was get on a food plan that contained nutrients that stimulated the brain to help her recover.  Not long into her new program she was able to stop the decline in her health and better than that start to recover.  Yes her body started to repair itself, and done this through food. Only a couple of years into her recovery she went from being confined to a recliner chair to cycling to work at the University she works in. 

She has documented her recovery in her highly acclaimed new book the “Wahls Protocol” which I highly recommend MS patients to read.  My own recovery has been very similar to Dr. Wahls and our plans are also quite similar in nature in that I am also advocating food and exercise as being the key ingredients that got be back to health and helped repair the internal damage.

Dr. George Jelinek is doing some incredible work in the whole area of MS recovery and again is advocating diet and exercise as a nuclear combination in fighting and reversing MS.  In his book “Overcoming MS” he sets out clearly a pathway for patients to follow that will give them every chance of fighting the condition.  This was one of the first books that I studied when trying to work out my own plan.

I would also encourage you to look at the great work of Dr. Colin Campbell, author of the highly acclaimed “China Study” along with being one of the key contributors to the outstanding documentary Forks over Knives.  Dr. Campbell setts out in his work over the last forty years that a major way to fight MS along with other conditions is through food – namely a plant based diet.  This work of Dr. Campbell and many others set the foundations for my own recovery.  The one thing that all of the above including my own situation have in common is that we have been able to do this and achieve magnificent results and health despite living with MS, not by taking drugs, but by using food and exercise as our medicine.  This for me certainly should provoke if nothing else a real conversation across the mainstream MS family.

There are many more I could talk about, however it would appear today that this message is not mainstream and I feel this is a real shame.  When I spoke in Brussels last year I asked the people listening, and some of them were hugely influential in the pharmaceutical and world of medicine, the following question;

Why is there a complete disconnect between the benefits of using conventional medicine along with the benefits of implementing the more non conventional approach to dealing with MS?  The room fell silent funny enough.

The world we live in today is extremely difficult and troubled many would agree.  It’s a new age where the media and social media determine the outcome of many very important and serious situations.  In relation to MS patients I now feel and have for some time that it’s us, the patients who have to be at the forefront of MS research.  Its us the patients who have to try and work with what we know, until we get that magic bullet we all hope arrives sooner rather than later.  However until then, if we are to live better and more painless lives, we must embrace the information and recovery journeys that are there for all to see.  Our neurologist and doctors will not do this for us.  They have not been trained in nutrition and it’s not an area many of them are comfortable with.  However if you are anything like me, stop waiting and go educate yourself around the condition, your body and your recovery plan.

I now know that it is absolutely possible for us to start our own recovery path tonight in our own bodies, if we would all embrace the plans and information that is already available to us with regards to nutrition and exercise.  I am hopeful that as we move through time all of the stakeholders in this terrible condition will also embrace and approach the condition given what we know already benefits patients, as the starting point.  However the buck stops with us the patients and the real question is are you prepared to educate yourself around your own recovery plan and if so, no better time than to start right now.  

I wish you the very best.

Conor Devine

Ironman and MS Champion

#AttitudeIsEverything

 

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