20 thoughts on “Guess what the logos mean?”

  1. EDSS scores increasing, decreasing, not moving.You might want to just put EDSS below the circle.That would clinch it I think.Or perhaps you are just running a bookies and these are the odds in the race.

    1. Yes, I realised it too, get some sleep Prof G (MouseDoc is the same – posting at 2 AM). If you don't watch out you'll get fatigue 😉

  2. Colour can be ignored as each one is unique. I think they make more sense without the running/standing/wheeling figures – I thought this had something to do with wheelchairs at first…

  3. I guess if I were a (non colour blind 😉 ) person in a wheel chair, I would not really want to be associated with red as in "stop", green as in "go" and orange as in "wait" – I would hope that even with ms there was a way forward, an one that was not only negative at that. And even if in reality it turned out differently, I would want to have and maintain that hope, rather than deciding I'm a hopeless case because I have been given a red light. So the traffic sign / traffic light analogy probably is not the most sensitive one if your are presenting to patients. If you are presenting to patients, I'd be totally factual and not even draw little persons but put a word and a number.

  4. No clue but I wish (and this is no criticism of Prof G and this post but it just made me think of this point!) we'd stop seeing images of wheelchairs on every site associated with MS. Wheelchair use, whilst sadly a possibility, is, statistically, actually quite an unusual outcome for MSers (as opposed to cane/stick and even that is still less likely then not needing mobility aids) even in the fullness of time and yet every MS site is peppered with images of them. It is no better than lazy journalists who use a stock photo of someone in a wheelchair alongside every story about MS. All it does, as has been observed in other posts. is make all MSers think the worst outcome is the only outcome and that is really unfair.

  5. I agree with Roshni, that I have no idea what they mean. Also agree with Anonymous above, about images of wheelchairs being peppered all over MS related websites. On the topic of these images, there is a website/campaign to change the 'person in a wheelchair' very passive picture to one where the person is active – which is illustrated by the angle of the arms. I know I've appeared to contradict myself there, but the pics reminded me of the latter point.

  6. I am fairly certain the wheelchair logo signifies disabled. I do not have a clue what the numbered ones mean.

  7. Back to the drawing board. I was hoping they would be clear. They refer to disease progression, improvement and stable disease. The 3 and 6 refers to months. For example confirmed disease progression at 3 or 6 months. I can't get rid of the wheelchair; that is the reality of MS and refers to an EDSS score of 7.0. The idea that MSers do not require wheelchairs any more is incorrect. I wish we could say that, but we can't. If you become disabled due to a relapse or have progressive disease wheelchairs are often required and can make a big difference to your quality of life.

    1. EDSS score of 7 and above is a relatively small proportion of MSers however and usually a very long time after diagnosis. That's not to say there aren't plenty of exceptions to that but it's not the norm and shouldn't be thought of as being the inevitable outcome of MS – even pre-DMT.

    2. Unfortunately, this is not correct. The median time to a wheelchair in the pre-DMT era was ~33 years. This means that 33 years after disease onset 50% of MSers needed a wheelchair. With longer follow-up, beyond 33 years, the figure went above 50%. Therefore the majority of MSers needed a wheelchair. You may want to read the following article that explains this:Confavreux C, Vukusic S. Natural history of multiple sclerosis: a unifying concept. Brain. 2006 Mar;129(Pt 3):606-16. Epub 2006 Jan 16.http://brain.oxfordjournals.org/content/129/3/606.full.pdf+htmlI am confident that these figures have been changed. Unfortunately, we don't have them yet.

  8. So they are for clinical trial results? Then they are quite clearThe problem was the missing context

  9. All these stats are hogwash. A paper by Peter Brex a couple of years ago said that the average life expectancy after diagnosis was 30 years. I know a woman age 23 who is SPMS and in a wheelchair. J K Rowling's mother died of MS at 45. Jacqueline du Pre died of MS in early 40s. 20 years after diagnosis and you are generally in a bad way. Being wheelchair dependent is not quality of life. These MS researchers focus on inflammation because it's easy to measure. Surely they should be focusing on repair and reducing EDSS? Leave art to the professionals Prof G. Your focus should be on getting neuro-protective or neuro-repairative treatments available for patients. To misuse Boris Johnson's phrase – there's too much "whiff – whaff" in MS research. All patients want is treatments that stop them becoming more disabled and eventually regain some lost functions.

    1. I think your examples are still mostly pre-DMTs – as far as the woman of 23 is concerned, she, too, must have most probably got MS in childhood/teenage years so no DMTs there for the most part. At the end, it's also your individual genetics which slow or speed up the disease as with any other disease be it asthma or cancer.I think 30 years until wheelchair for the most is realistic – in the era of alem or BG12 maybe even 35 yrs. which is fine with me. I can live with the prospect of being 70 yrs old and not able to walk (if by then there won't be any neuro-repair drug – you never know!). The only thing would be to get a biomarker to tell me exactly WHEN I should brace myself for disability – I would like to know.

    2. The post above is what is 'hogwash'… Oh yes, and Richard Prior looked pretty ill before he died so MS must always be that bad. "The stats aren't true because I know someone and have heard of 2 people who don't fit the median"?! Really?! A median time to an event means there will be people either side of that; but for every person disabled sooner than the median, there will be one disabled later than it. To say you know a disabled 23 year old so the stats are nonsense is like me saying I know a non-disabled 70 year old and so people with MS can't get disabled. MS research is highly focused on EDSS – but reducing it (rather than preventing further increases) is exceptionally difficult and it is better to concentrate on that which is achievable than achieve nothing in the aim to get the perfect solution. If 'Pharma' can provide a drug that significantly reduces my chances of suffering an increased EDSS (which they can) then that is quite an achievement I think.

  10. Your focus should be on getting neuro-protective or neuro-repairative treatments available for patientsSo what do you think our focus is?????

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