REVIEW: Film about Multiple Sclerosis by Matt Embrey

Duration: 1hr 37 mins

Multiple Sclerosis is one of the most debilitating illnesses out there with over 2.5million people diagnosed worldwide, attacking people typically between the ages of twenty and forty years old.  For the person effected it can manifest itself with over fifty different symptoms and generally accepted that once diagnosed, your health is likely going to go downhill over time with a statistic thrown about that some 25% of all patients end up in a wheelchair.  For the entire family it is also a catastrophic event, as they try to come to terms with their loved ones diagnosis, worrying how will they cope, how quickly will they decline and what the future might hold. 

I know all of this off course as of the 21st August 2007 I was diagnosed myself with MS on my 29th birthday, and over the last eleven years I have been fighting it every single day.

A couple of months ago I seen a film getting some publicity on Facebook, and I immediately reached out to the producer, Matt Embrey, to see if I could find out more about the film and to enquire as to how I might be able to view it.  Matt himself, is living with MS over twenty years, and I was able to gather very quickly that this guy was very professional, appeared to be genuine and authentic and following spending some time on his website  I realized he was trying his best to help MS patients across the world – I was sold.

This week I was very fortunate to have a conversation with Matt, who agreed to send me the film, and last night I took the opportunity to watch it with my mum and dad. 

The film itself is very informative setting out what MS is all about, how it can affect people and very quickly focuses in on a number of patients to get their views on the MS conversation right now, along with how they have been coping with their illness over the last number of years.  It then introduces a number of very highly regarded medical doctors including Dr George Ebers.  Dr Ebers is no ordinary medical doctor; he is a neurologist and MS researcher and was the head of clinical neurology at Oxford University for some fifteen years with over 45,000 academic citations to his name.  In layman’s terms Dr Ebers is a rock star neurologist who certainly knows his onions when it comes to discussing all things MS.  This is where the film started to get very dark for me (and my parents), as Dr Ebers began to air his concerns around the entire MS discussion and where it was going.  These concerns centered around the unwillingness of the pharmaceutical industry for many years to undertake trials to determine if the current batch of disease modifying drugs can actually benefit MS patients long term.  He also aired his concerns around the conflicts of interest that are way too obvious in the industry as over 90% of doctors in the USA tend to be on the payroll one way or another of the big pharmaceutical companies.  Even more damning and disappointing from a MS patient’s point of view, was his concerns along with other contributors in the film, around the question regarding the significant conflicts of interest between the MS Society and the pharmaceutical companies.  It’s fairly explosive stuff at this point, and I have to say that when we arrived at these junctures in the film, my own parents where absolutely shocked at what they were hearing from Dr Ebers and the other contributors.  Personally for me I was not so shocked as I have been looking into this at some length over the last few years however still very disappointed, when you hear people of the quality and credibility of Dr Ebers talk like this.

The film then goes into what can only be described as a now ongoing feud Matt has been sucked into with the MS society of Canada, who according to the film has written to all of its members in the USA and Canada asking them not to support it.  The film shows a piece where a senior member of the MS SOCIETY in Canada goes on national radio to discredit Matt and his work with regards to his accusation that only 16% of all revenue the Society collects is spent on research and development.  The result of this being the MS Society member funny enough doesn’t have the information at hand to qualify or stand over his claims about Matt and his accusations, despite the person being fully briefed around the particular type of questioning he would face on air.  All very bizarre but from a viewers perspective, captivating. 

There are a number of other areas this film covers that are all extremely interesting and important for the MS community to hear about including the CCSVI treatment, role exercise has to play, and the importance of high dose Vitamin D to MS patients.

For me personally watching the film as a MS patient, I found myself going through a range of emotions from minute one to the end of the film.  I was transfixed from early on but was able to hold my emotions together which ranged from sadness to anger.

My overall conclusion of “Living Proof” is that every single MS patient on the planet and their family needs to see this movie.  The film has been extremely well crafted, professionally put together and contains many specialist medical contributors who talk only for the most part about the science that is all readily available and has been for years.  Living Proof has to start a conversation across the globe now regarding what is going on in the world of MS, what is the best way to treat MS, and pay particular attention to the roles and the objectives of each of the stakeholders in the MS conversation. I also believe the MS Society needs to come out with a statement with regards to some of the narrative in the film, as the stakes are too high, and as an organization they are way to important to ignore it.  If the MS Society are telling its people not to view this film, then from a patients point of view, I really want to understand why this is the case. 

For me the biggest disappointment about the MS conversation throughout my eleven years of living with the disease, is that it is for the most part, entirely focused on the drugs. There is way too much emphasis on drugs and I would agree with Dr George Jelinek who advises in his excellent Overcoming MS program, to make the lifestyle changes first before you consider any kind of medication.  There continues to be a complete lack of information, research and interest in discussing the power and role of nutrition, exercise and Vitamin D for example, and how this combination might improve the lives of MS patients.

Living Proof is a must see, and I would like to thank Matt and his team on behalf of the MS community for making the film.  It is very clear through Matt’s website, his video’s, and this film, that this guy is authentic and is trying to change the lives of people living with MS.  For that I salute you Matt and look forward to seeing this film grow throughout the world over the next few months and years and the positive impact it will make to MS patients.  You and your family deserve every success with Living Proof.

Congratulations Sir.

Conor DevineComment