The recent exchange of comments relating to a disconnect between MS’ers and neurologists needs some thought; for example:
“Sometimes I think MS clinicians don’t live in the real world. No wonder MS’ers feel so frustrated.”
I think the disconnect relates to differing world-views neurologists and MS’ers have.
For the majority of MS’ers your world of MS is a personal experience; it is your disease. You relate to it via your own journey through the various phases of the disease; that is the initial symptomatic, diagnostic, minimal impairment, mild disability, moderate disability, severe disability and terminal phases of the disease. Your needs are personal and could for example include bladder, bowel, sexual, walking, balance, visual, hearing, cognitive and mood problems. You may have benign, malignant, CIS, early relapsing, secondary progressive, primary progressive or progressive relapsing disease. Some of you will be on DMTs, others not, some on symptomatic therapies, others not. You may have side effects to these treatments, whilst some of you will tolerate them very well.
On the other hand neurologists view MS as all of you, and in my case the large number of normal people who have yet to develop the disease. This is why news of a symptomatic treatment, even if it is in early stage development, is good news. It has the potential to benefit many other MS’ers in the future. This is why I am upbeat about it. Why would I not be? This treatment is also addressing an unmet need for MS’ers and is an indicator that Pharma is waking-up at last to address this need. Academic groups, like ours, are not very good at drug discovery and drug development; Pharma is.
Wikipedia definition: A comprehensive world view (or worldview) is the fundamental cognitive orientation of an individual or society encompassing the entirety of the individual or society’s knowledge and point-of-view, including natural philosophy; fundamental, existential, and normative postulates; or themes, values, emotions, and ethics.