How you like to have more benign MS than benign MS? #BrainHealth #ResearchSpeak #MSBlog #MSResearch
"In my deep phenotyping post from yesterday someone referred to another 'chunk' of MSers who are not necessarily being followed-up in clinic."
'It is not only pwMS on induction therapy that have got on with their lives. There are people that have had the disease for much longer than 15 years that have not been involved in the MS community, they don't even have a neurologist. Their disease at onset could have been highly active. This is another problem with the study, it's missing a chunk of people.'
"This made me think a bit more about this study. Isn't it our aim, in addition to trying to cure MS with induction therapy, to make everyone have benign MS? The problem with benign MS is that it is very difficult to call. At present we use an EDSS of 3.5 or lower 15 years after the clinical onset of the disease as our definition of benign disease. We know a significant proportion of benign MSers, according to this definition, have cognitive impairment and associated fatigue, depression and anxiety and the majority of benign MSers will go onto become disabled with time. Therefore it is incorrect to call someone as having benign disease based on the current, and somewhat arbitrary, definition that is based on the EDSS. As we know the EDSS is not a very good at capturing the impact of MS early on. So I am going to suggest including a third, or benign, group of pwMS in the deep phenotyping study. If we deep phenotype a benign group, i.e. a group who have no physical disability (EDSS <= 3.5), we are surely to find problems with cognition in at least a proportion of them. A study like this may help us redefine benign MS by using multiple parameters. In addition, we would want the early induction therapy group to turn out to have more benign MS than benign MS. Do you agree?"
Labels: Benign MS, BrainHealth, deep phenotyping, ResearchSpeak