New blog initiative: grand challenges in MS

After my talk last week, to the MSers at the East London branch of the MS Society, I have been contemplating "life the universe and everything"; that is "life the universe and everything to do with MS". 


It is clear that despite researchers engaging with MSers at several levels there is still a disconnect between MSers and MS Researchers in what their aims, objectives and expectations are. 


It also apparent from an MSer perspective that your aims, objectives and expectations change over time. For example, early in the course of the disease you may want more emphasis placed on relapse prevention and wellness and later in the course of the disease on slowing progression and improving symptoms. Is this correct?


Reconciling these under one umbrella can be difficult. 


I am haunted by the experience of meeting a recently diagnosed young woman at the meeting who did not want to know about the prognosis and course of MS; she was still in denial and clearly was not prepared for bad news. I hope she is okay and getting the support she needs. Information should be drip fed and done at pace  and in an environment determined by you. 


In response to my experience last week I propose posting a series of "Grand Challenges" to MS Researchers; these will be what we consider the most important questions to be answered in the field. I suggest using a MSer-centric perspective and using the phases of the MS as a template: 


Phases of MS

Prevention
Diagnostic phase
Minimal impairment phase
Moderate impairment phase
Severe impairment phase
Terminal phase


I would appreciate proposals around these phases before setting-out our stall. Thanks.