It’s unlikely I need to tell you how frustratingly unpredictable living with MS can be.
While we’ve made huge strides in the laboratories and can feel incredibly proud of our researchers in this country, time and again we hear those living with MS feel a sense of control when they can explore lifestyle factors that assist in managing the disease. It may be choosing to follow a certain dietary plan, taking up a form of physical exercise that better suits their symptoms or even committing to meditation to calm the nervous system.
The type of modifiable lifestyle factors to adopt has been a hot topic of debate for decades. The internet has made it easy for the newly diagnosed to find more information than ever; some of this information can be comforting but conversely, some can be confusing and misleading. Certainly, the positive effects of many modifiable lifestyle factors in treating MS is a tremendously under-estimated topic.
To set the scene for the debate, let’s examine the pathway for getting a disease modifying therapy (DMT) to the patient. In Australia, clinical trials must conform to the Ethical Principles of the Declaration of Helsinki and to international Good Clinical Practice guidelines. Before a trial can go ahead it needs to be approved by independent ethics committees that operate according the guidelines issued by the National Health and Medical Research Council (NHMRC Guidelines).
The pathway for being able to recommend a certain diet or style of exercise should be a no-brainer. But it just isn’t for the MS community.
In simple terms, the panel of speakers at the recent MS Research Australia Modifiable Lifestyles workshop asked themselves one overarching question; ‘Can we alter the natural history of multiple sclerosis with non-drug factors?’ In essence, this is the role that modifiable lifestyle factors play in MS research.
Using the same clinical trial protocol as DMTs to provide evidence around the efficacy for modifiable lifestyle factors is logistically problematic. Take a trial for a particular diet; you would need to have a significant number of participants, each provided everything they would be allowed to consume – day in day out – in a controlled environment and then recorded for many years. It’s not impossible but it’s wildly impractical. The workshop discussed different trial methodologies to overcome this ‘wildly impractical’ barrier. It facilitated good discussion about some ways we can look at generating strong and defendable evidence with different types of trial designs.
And does that matter? While it would be difficult for anyone to argue against the need for efficacy, I think there’s a happy medium to be embraced, where people with MS consider the notion of using modifiable lifestyle factors to prioritise and obtain quality health rather than fighting disease.
So where to now?
In the interim to undertaking clinical trials for MS-approved modifiable lifestyle treatments, I think the research community would do well to develop a set of practical guidelines for healthy living for people with MS.
From a personal point of view, I believe language has a significant role to play in the adoption of lifestyle factors. In developing guidelines, careful and considered language and advice will set people living with MS on a path of well-informed options in striving for good health.