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.
I consider myself a MS-rookie, my MS-journey has just begun . So that´s might be why I think my world view doesn´t differ that much from yours Dr G. It's always encouraging to hear that there´s research going on even though it might not benefit me. But it might benefit one of my fellow sufferers or it might even save someone from getting ill. So yes you don´t have MS and no one can quite understand what it means without having it. But h*ll somtetimes even I don´t get it. So if only people with MS where allowed to contribute to the discussion then it would grow awfully thin. Because the more discussions we have the better climat we have. All within due respect of course.So keep on poisting I always find it interesting to pop in here and see what you got in store :-)//Sara
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Not all MSers do feel frustrated or disconnected from clinicians – at least this one doesn't !Of the forty to fifty people I know personally with MS, each one of us has a different array of symptoms with differing impacts on our daily lives. Most are RRMS, 4 have PPMS, 7 have SPMS and one has what is termed Benign MS. A lot have DMTs and the ones with both types of PMS are happy that things like Tysabri trials are taking place. Some avidly try to keep up to date with research and others don't – in short, everyone's different.I am interested in the theories of causation, nerve damage, drug therapies etc not just what's in it for me.Thanks Prof G and Mouse Doctor for increasing and improving the communication between clinicians and PwMS. I am fortunate to see my neurologist on a regular basis and can ask questions about research or therapies, but it's not daily. The other advantage of the blog is that I can go through the more complicated stuff slowly and check terminology on wikipedia as I go (I think I'm not the only one who does this).Lisa
Hear hear, and btw Prof G you are inclusive, not exclusive 🙂
Prof G,Great post which goes a long way to explaining the gap between the MS researchers / doctors and some MS sufferers (like me).This disease affects my life / my family. I want to work as long as I can and provide for them. I want to be well again after a decade with the disease. Lots of 'I' and 'me', but this is my one life. For MS researchers you are looking at the population level and future benefits (sometime way out on the horizon which will be of little use to me).I think it was Stalin who said one death is a tragedy and a million deaths a statistic. I know MS researchers have to work at the population level, but please remember that we have to work at the individual level (and all that this disease brings with it). This probably explains some of my posts which result fom frustration – the frustration of never getting my health. A decade is a long time if you ahve MS – quite a few points on the EDSS scale. Hence my limited excitement about a drug which may arrive in a decade.But I wish you and Mouse Doctor well and hank you for your efforts. If only I'd got my disease ten years later!
Prof G, thanks for explaining your mindset, however, there will always be disconnect between those who have the disease and those studying it.There have been a number of occasions where you have perhaps phrased things inappropriately, or posted images that were tactless, but no one doubts your team's efforts to better the lives of MSers like myself.The psychology of an MSer is a tough thing to get your head around. The psychology of an MS clinician isn't as hard to understand because the good ones want to look after their patients (trust me when I say there are some pretty poor neurologists out there as well).You will always get frustration from the MS community, but that's not a bad thing. You're actually getting an insight into how many of your patients perhaps feel about things but can't tell you directly, face-to-face. Isn't that one of the reasons why you established this blog, to encourage dialogue?There is a lot of noise in the field of MS research right now. Some reputable institutions reckon we are on the cusp of trialling treatments that may turn out to be as good as a cure for MS, while others are more doubtful. There are thousands of people across the world working diligently to discover more about MS, which can only be a good thing. But that is also creating a kaleidoscope of interpretations and expectations. MSers may be confused, with one voice cancelling out the other.I appreciate why you may think of the MS community as a homogenous mass, but each one of us is of a different situation and temperament. You will never know what it is like to live with this disease the way I and my fellow sufferers do; not unless you go on to develop the disease, which would be a rather unfortunate quirk of irony. Look, I watch the news every night and see kids in Syria crying over the death of loved ones. Sure, I empathise with those kids but I don’t really understand the horror of their plight because I’m not in their terrible situation. I don’t really feel the desperation and urgency of those kids due to the fact I’m not living their lives, just as you are not living with a progressively degenerative neurological condition that’s pretty much untreatable. That’s live, I guess. Let’s all hope for better things.Your blog is great. The stuff you're doing is great. I wish there were more scientists like you wanting to start a communication base with the very people whose lives they want to improve. Likewise, Prof G, you need to cool out. When people come on your blog and complain about slowness in developing quality drugs to fight MS, try and understand that they may be in a bad way. They wouldn’t complain if they were being looked after in the way they wished.MS is a bitch, and then you die. Shame we can’t do anything about the bitch part.
In response to Sara. Thanks for your comment. This blog is open to all; we are inclusive. I agree the more who comment the better. I am just trying to explain the disconnect between clinicians and MS'ers in relation to some of the issues presented on this blog.