Wednesday, 16 December 2015

ResearchSpeak: more benign than benign MS

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?"


CoI: multiple

7 comments:

  1. In defining benign are you including exacerbations? We have lost function, asked our colleagues to drive us to work. Had private physiotherapy so that we could carry on working. We didn't see a neurologist until it was our yearly check up. Losing the use of our hands, but not our legs falls into your comment that EDSS is flawed as a measure of benign.

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  2. How do you define cognitive impairment? I have had MS for >21 years now with no physical impairment whatsoever, I regard myself extremely fortunate. I have minimal sensory derangement with minor Lhermitte's and occasional allodynia, I am employed full time in a career which requires a high degree of cognitive functioning and I have not taken any time off for relapses. Therefore how would one define cognitive impairment? In individuals where it is clear and function is significantly impaired then it is straight forward to identify cognitive dysfunction however in an individual where a significant degree of cognition is the norm how would one identify that cognitive impairment has occurred? There would be a requirement to do longitudinal studies and a comparison with baseline but where the onset of MS may be blurred, for example an undeclared CIS, when would one take baseline?
    All very difficult however I would therefore question that it will be straight forward to define those with "benign" MS but with an extremely benign course. BTW I only started DMT in the last 10 months having stuck my head in the sand for at least 10 years with peculiar sensory symptoms. Perhaps there is a rare but definite subgroup who do not have progression to significant disability or cognitive impairment. Identifying this subgroup would be important particularly where there are DMTs with serious side effects; no need to subject them to these, perhaps a defined subgroup worthy of additional study to identify why they don't progress?? Possibly genetic/viral subtype/other environmental risk interaction.....

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  3. MS is not benign, regardless of the level of progression or disability or reduced functional capacity over any time frame used.
    First things first - let's get rid of using the word "benign". Find another term - some one who is EDSS 3.5 or less at 15 years after onset/diagnosis is still impacted by their MS, even if they can still run/hop, climb trees or whatever (none of which I can do - even tho my neuro says I'm EDSS 3.5).
    The words "highly active" tend to get used with those who are having a lot of relapses etc. Maybe look at using "low active" instead of "benign" as a descriptor. The middle level could also possibly use something like "moderately active". This would also allow for recognition that individuals may move up and/or down through the different levels at different times.

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  4. I am 15 years post diagnosis when I was 56 years old. I'm sure that it was kicking around for years before then. I have an EDSS of 2.5. I would not say that I have benign MS. I have some symptoms and attribute the fact that I have not progressed further to the fact that I have been on DMTs since diagnosis, progressing from Avonex to Tysabri. I think that the whole concept of benign MS should be scrapped.

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  5. I always thought the term MS Benign a fallacy ... I know MSers which has EDSS up to 3.5 and that apparently have no motor or sensory commitment, but clearly demonstrate cognitive and psychological problems, many with anxiety disorder, major depression, bipolar disorder ...

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  6. From the comments above it looks like the term "Benign MS" has the same problems as the EDSS i.e. is not a good reflection of the true situation for any individual.............

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  7. I was diagnosed in 1965 after an extreme episode of minor symptoms followed by and sudden total paralysis from waist down . Made complete recovery and never saw another medic for over 45 years. I assume this was then benign. However now have onset of slow deterioration and am told spms .

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