I attended an online meeting yesterday and gave my usual talk on why the MS community needs to change its worldview from MS being a “clinico-radiological” entity to being a “biological disease”. There are many reasons for doing this but an alternative MS worldview will allow us to (1) diagnose MS earlier, (2) start treatment earlier, (3) define prevention strategies targeting very early MS or the at-risk, (4) stop MS being considered two or three diseases, (5) develop combination therapies for smouldering or the real MS and (6) to manage MS more holistically.
If we think about MS from a biological perspective rather than a clinical (relapses) or MRI (new lesion) perspective then we will not be lulled into a sense of false security that we are on top of this disease or be surprised when patients who are apparently disease-activity free become secondary progressive.
One of the participants and respected colleague asked me what will it take to get the MS community to accept the biological definition of MS and to move away from the clinico-radiological view of the disease. I tried to answer the question but failed horribly.
On reflecting on my inability to answer this question I realised that I have probably been trying to do this, i.e. redefine MS, for decades and have failed. My research, traditional communication channels (journals, congresses, etc.) and new media platforms (blogging, social media, etc) are clearly not working.
Maybe the solution is to create a parallel MS universe, i.e. set-up an alternative committee to redefine the disease. This ‘New MS Definition Committee’ would use sound philosophical principles to define MS, avoid the diagnostic tautology that underpins the McDonald criteria, and include definitions that are underpinned by biology. We can then retrospectively validate these criteria on existing data sets, refine the criteria (feedback loop) and then set-up prospective studies to validate the criteria. Yes, validate them, i.e. establish the sensitivity and specificity of the criteria and to then establish how they perform in high, intermediate and low prevalence regions of the world. What clinicians and researchers need to know is the positive and negative predictive value of the criteria in their clinics. You will be surprised by how much incorrect diagnoses or misclassifications affect research outcomes (more on this later).
This parallel MS Universe will have to include a different research and education agenda to challenge the current dogma. And will have to generate a few creative memes (infectious ideas) and policy to speed up adoption.
I wonder how many of my colleagues would want to join this parallel Universe? Is the status quo tenable? The motivation for doing this is to improve outcomes for people living with MS and to prevent the next generation of people getting MS.