Thursday, 20 June 2013

Rebranding MS as a dementia (4): survey results

Survey results on MS as a dementing illness. #MSBlog #MSResearch

"Next to my posts on CCSVI the 'Rebranding MS a Dementia' post caused quite a stir in the blogosphere. It is clear from the comments in relation to this post that MSers don't want to labeled as having a dementia. This is contrary to the results of the survey that was linked to the post, which acknowledges that MS is a dementing illness and, not surprisingly MSers want early effective DMTs to prevent cognitive impairment or dementia."

"Almost all neurology textbooks list MS as a cause of dementia so the concept of MS as a dementing illness is not new."

"My motivation for stirring up this hornet's nest was succinctly summed up by one of the anonymous comments."

AnonymousThursday, June 13, 2013 8:54:00 pm

I think you are both missing the point of the argument. Prof G is simply stating that people are ignoring the fact that MS is a dementing illness that is treatable. If we acknowledge this fact he, and others, can then use it to justify early treatment. Delaying treatment increases your chance of becoming demented. As awful and scary as it sounds if this is the case we cannot ignore it.

"This issue clearly needs more explanation. Therefore, I will be hosting our first MS Research Webinar next month on this topic. In the webinar I will explain my thinking and motivation behind the proposed rebranding exercise."


4 comments:

  1. The importance of communicating this carefully and effectively to the wider world (not just other medics or MSers) cannot be overstated.

    The media works on soundbites and this has the potential to be misheard / misinterpreted and causing anguish to MSers and their families as well as further employment stigmatism / backdoor discrimination.

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  2. Piece on C4 News right now about 3D mapping of brain which is described as being useful for understanding of Alzheimer's and Parkinson's. No mention of MS! Happy for you to speak the truth, I do not think worrying about upsetting people is any longer relevant..the fear of MS has been made much worse because of that approach, just as things used to be in the past with cancer. Go for it guys and thankyou.

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  3. There are currently methods to measure coginitive function in people with MS and it even is indicates decline for benign MS. I'm not sure why these methods are not used in clinical trials to measure the effectivness of a therapy as opposed to the current metric of success:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3049302/

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