On Tuesday the 27th November, 17h30-18h30, Helen Tremlett will be giving a lecture on “Using population-based data linkage to investigate MS epidemiology: recent findings from British Columbia, Canada”.
During her talk Helen will address the following questions:
During her talk Helen will address the following questions:
- Are pregnancy outcomes worse for women with MS?
- What’s the cancer risk in MS?
- How does MS impact life expectancy?
- Do the beta-interferons impact long-term MS disease progression in clinical practice?
The lecture will be held in the Clarke Kennedy Lecture Theatre, QMI Innovation Centre, Lower Ground Floor, 5 Walden Street, London E1 2EF. Click Here for a Map
Helen Tremlett, is currently an associate professor at the University of British Columbia, Vancouver in the Faculty of Medicine, Division of Neurology and the Canada Research Chair in Neuroepidemiology and Multiple Sclerosis. Helen is also funded by the MS Society of Canada’s Don Paty Career Development Award and a Michael Smith Foundation for Health Research Scholar award. Also holds operating grants from CIHR, the US National MS Society and the UK MS Trust. Helen trained in pharmacoepidemiology/ multiple sclerosis with a PhD from Cardiff University, UK. She heads the ‘Pharmacoepidemiology in MS (PiMS) Research group. Her current research interests include: the natural history of MS; prognosis and predictors of disease progression in MS; effectiveness of the immunomodulatory drugs (IMDs) in MS; adverse effects of the MS IMDs; pharmacogenomics; MS epidemiology; cancer and MS; pregnancy outcomes and MS; impact of parental MS on childhood developmental outcomes; vitamin D, sunlight, infections and MS disease activity.
If you have an interest in MS you are welcome to attend please RSVP here:
Helen Tremlett's work on MS natural history is excellent. It is her work that showed the median time (in a British Columbia population of 2,800 people) to EDSS 6 (cane use) was 27.9 years; after 15 years only 21% required a cane. The mean age for cane use was also not significantly different between males or females (58.8 and 60.1). This kind of work is extremely important to help provide a realistic picure of MS outside the hospital studies. How many newly diagnosed people would be quite so devastated if told that they'd (statistically) likely be 60 before they'd need the assistance of even a cane to walk? I'd certainly be interested in this talk.
Why not come along?
Whilst I agree this work and study are very important to show MS in it's average form, unfortunately there are always going to be exceptions to the rule. Whilst it may be reassuring, any newly diagnosed person with MS will be told by a Neurologist, at the moment there is no way of determining the course of your disease. (or am I wrong ?)Regards as always
Whilst there is some truth in this, it's not entirely the case. The severity of MS at any point is indicative, albeit not conclusively, of continued disease course. Whilst not completely reliable, someone who has a very mild bout of optic neuritis pain with no visual distirbance, followed by some tingling in the leg – all with no EDSS – is likely to have a more favourable course than someone diagnosed following a steroid requiring, hospitalisation causing motor relapse. Also, remember, exceptions have to happen to an equal degree either side of the mean – so for everyone who requires a cane before 28 years for example, someone needs one later (and some never will). There was a study of MS disease curves that showed the odds of deviating from the course you aren on by centile was actually quite low (about 10% I recall). MS prognosis will always be unreliable trouble a degree because one badly located lesion can be devastating but it is possible to be reasonable confident of a better than average, average or worse than average course based on the severity at onset and beyond. The longer one stays 'well' the better the odds of remaining so.
http://www.ncbi.nlm.nih.gov/pubmed/15549358The above is a link to the abstract. The actual study (behind a paywall I'm afraid!) has the actual longitudinal curves. It is based on 1,000 MSers. The odds of deviating from a mild disease course (i.e. on the 25th centile) to a worse one was between 6.5 and 15.4% (and from a severe to a milder course was between 1.6 and 6.9%). The curves was based on EDSS 1 year post-diagnosis so not quite 'onset' EDSS but soon after. So, whilst you can't be certain of "staying mild" you can have a c. 90% confidence of doing so. A word of warning, however – this only looks at the position after 10 years and so didn't look at the impact of developing SMPS after 15-20 years. Also, a 10% chance of ending up on a higher centil is far from negligible when talking of disability and so this ability to predict the course with a slightly greater degree of confidence than perhaps conventionally thought is not an argument – in my opinion at least – for being complacent when it comes to treatment.
Dear Anonymous 9:03am & 5:07pm (or should I say Sam Trucker?)You’re attempts at whitewashing multiple sclerosis as some benign disease really is infuriating. Trust me when I say there are legion sufferers that have developed disabilities because of the disease. Why on earth do you think it’s one of the most costly diseases in Britain? Not everyone on DMTs is doing well. Even if they appear physically fit, they often have acute fatigue and cognitive problems that hinder work prospect.To present a rosy image of MS is an ideal, but that’s not how it works for many. Go volunteer your time at a local MS branch or visit a clinic and you’ll see myriad images of youngsters requiring walking aids and wheelchairs long before they are 60. Sure, these people may have bad disabilities but they’re still functioning. Disability is not an evil; it’s just a feature of life for some people. I accept that no one wants to be disabled, but MS can, and often does, lead to disabilities. That doesn’t mean an MS blog has a right to ignore such complications. We need to know the good and the bad. If that scares you then don’t read.I like the new look of the blog, but want a pop-out comment box like it was before.
Where do I portray MS as a benign disease? MS can be a horrible disease – fatal in its worst guise. Helen Tremlett has done some large population studies which show mean time to EDSS 6, in that cohort, was 27.9 years. That is not 'painting a rosy picture' is it a fact that was borne out of this important piece of research. You say this blog should report both 'the good and the bad' and yet you seem not to want to hear the good? Do you understand what 'mean' means? Perhaps not. Mean means that there will be people who do worse (i.e. the people you refer to in the MS centres). For each on of those – assuming a reasonably normal distribution around the mean – there will be someone who does better ie for each person using a cane after 17.9 years, someone else won't need one until 37.9 years etc (that's not quite statistically accurate but you get the point). You are referring to a selective sampling of people to make a point and that isn't a valid analysis. The studies done by Tremlett and others give a valid model of the varied impact of MS across the population and, as such, are of much greater relevance than 'I know some people really badly affected by MS'. Of course, EDSS 6 after ANY length of time isn't good or benign. It also doesn't account for cognitive or fatigue-related issues. However, for some, to anticipate a reasonably long period of relatively good mobility is an important message which is, unlike yours, supported by robust research. One final point, I do not suggest life with disability suggests they can't function – far from it. However, there can't be a single MSer who isn't interested in remaining disability free for as long as possible.
Come on Sam Trucker, you have tried to stop this blog from reporting on assisted suicide and other 'downer' issues to do with MS. Tremlett's studies are not comprehensive, merely reporting on observations of a select cohort. There are lies, damn lies and statistics, especially when it comes to MS.Of course everyone's MS is unique but your stance is to abandon upsetting realities and accentuate the positive. That's not right. You're turning the blog into an episode of Blue Peter with your sunshine and lollipops approach to MS reporting.
Actually, it is not 'merely reporting on observations of a select cohort' (implying some kind of bias in selection). It is a statistically very robust population study. It covers over 80% of their entire population (BC), 2,837 patients, followed up for 22,723 patient years. Patients were EDSS assessed every 1.1 years. There was consistency in scoring as 4 core neuros saw 85% of the study population. Over 95% of scores were assigned in a face-to-face assessment. It also mirrors other similar population studies such as Olmsted County, USA, Iceland and Lyon, France. The older quoted '15 years to cane' came from a London, Ontario study but that was biased towards PPMS and didn't study for vary long (11.9 years only) which de-selected more slowly progressing disease.This isn't about presenting sunshine. I don't ever want to need a cane. Nor do I want bladder or bowel problems or eyesight issues or cognitive challenges. However, the stats from this, and similar studies, are important to get a sense of perspective on the disease and it's variance. The 27.9 year time to EDSS 6 has a 95% CI of 27.9-29.3: quite a small range. For RRMS is is 30.3 years – for PPMS 13.3. 40 years after onset, 69% needed a cane.EDSS 8 (wheelchair) was reached by only 6% of 50 year olds; 12% of 60 year olds. After 40 years of onset, 22% needed a wheelchair – there was no median time to EDSS as 50% of the population did not reach that stage. It took 44.2 years for 25% of the population to reach EDSS 8. Is this Blue Peter? No, it is just factual. Does it make everything seem rosy? Not at all. Why? Well, EDSS 6 is just one point in time – it doesn't mean EDSS 3 or 4 or 5 is a barrell of laughs prior to that point. EDSS 5 is quite severe in terms of diability and none of this accounts for fatigue etc. However, let's view the disease properly and in the context of its studies natural history. If that means the disease is better understood as not quite as quickly disabling in terms of mobility and other physical functional systems as people presume, how is that a bad thing?For what it is worth, I have no problem at all with this blog covering assisted suicide (albeit not the most cheery Sunday morning topic that could have been chosen!); provided it is careful to also point out at the same time that only a very small portion of MSers are likely to achieve a level of disability where this becomes a real option in their lives. People are easily frightened and we need to be careful what message is given out. I think ALL the realities of the disease need pointing out – both positive and negative. No-one seems to worry about putting up stories of people who consider their lives so impacted they might wish to consider a/s but where are the stories of the people who are still working, fully mobile and hardly affected day-to-day? They don't make news and so they disappear. Where are the stats, alongside a story on assistend suicide, to carefully point out that the EDSS 8 and above consitute only x% of MSers and only after an average disease duration of y years. Where are the stats to say, that the "doing well" category outweight the severely disabled by many, many multiples. I'm all for frankness and a reality check for people but I think that, for most, comes as a given with such a tough diagnosis. I don't think anyone newly diagnosed doesn't find their mind straying,at some point,straight to an image of being bed bound and tube fed etc. There is a much greater need for people to be reminded of the other side of coin (both (a) that disability is not inevitable and (b) disability doesn't equal the end of your life as you know it) than to be reminded of how bleak the worst case scenario could be.
Halleluiah! MS is an alright disease to have. Stop the funding, turn away the RRMSers applying for incapacity benefits and let’s all buy the MS Society a retirement card because this disease ain’t half as bad as it’s made out to be.Sam, you’ve hit upon a report and are screaming about it from the rooftops. There’s no point even expressing a comment on this blog that discusses the harshness of MS because you’ll rush out and throw coloured cellophane and cotton wool all over it because it doesn’t meet your approval and seems too pessimistic. I guess we’re just very different people.
will the event be recorded and posted on this blog?
Thats the plan