ClinicSpeak: controlling information

Do you think we should control the information that is provided to MSers? #ClinicSpeak #MSBlog #MSResearch

"The following table summarises the 5 most viewed SlideShare presentations from this blog; what is interesting is that the top 4 slideshows pull no punches and provide graphic information about how bad MS can be. Do you think this is the correct approach or do you think we should hold back negative information about MS?"

Name of most popular SlideShare Shows
No. views
1. Early aggressive Treatment in MS
2. Barts MSer PML Risk Guide May 2014
3. Grey matter, matters infographic version 1
4. Giovannoni's holistic approach to ms ver 3.1
5. Vitamin D as a DMT for MS

" Interestingly, the three versions of our holistic approach to MS that have been posted on the blog have been viewed over 1.25 million times; one of our most popular series of posts. This infographic is based on the London underground map and it is meant to depict the disease course of MS as a journey starting at being at risk of the disease and moving through different stages until you finally get to the terminal phase. A large number of people and organisations have asked to use this map and are now using it for educational purposes; all we ask is  that the source of map is acknowledged. Please feel free to download it and use. The idea behind the map is that each stop on this journey is an information stop that you as a person with MS may need or want to know about. What we are gradually doing is writing ClinicSpeak posts around each topic and eventually we will convert this map into a giant self-help guide so that you can stop at any stop and simply click-through to get detailed information on the topic of interest. Please note that his map is not only about DMTs, but provides information on many different and varied topics all related to MS and its management. Do you think the ClinicSpeak self-help guide would be useful to you?"

"Please note this map is a work in progress (see all the previous and current versions below); so if there is a topic missing please let us know we will add it to next version."

"Interestingly one the major MS Societies asked if they could use our map, but wanted to adapt it and remove the terminal stop. They didn't want their members, particularly their new members, to be reminded of death and the fact that MS affects survival. They were particularly concerned about the assisted suicide stop. We said no to their request as we took the position that MSers need to know about their disease in its entirety; we feel this is particularly important with regard to decision making that involves assessing the risks and benefits of the treatment. Surely the risks and benefits of any treatment needs to be weighed against the risks of the disease? If you don't know the risks associated with MS, how can you make an informed decision?"

Giovannoni's holistic approach to ms ver 2.1 from Gavin Giovannoni

Giovannoni's holistic approach to ms ver 3.1 from Gavin Giovannoni

Holistic approach ms version 4.0 gg1 from Gavin Giovannoni

CoI: multiple

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