Tuesday, 15 January 2013

Oh no, not another survey!

"Yes, before putting our reputations on the line we need to check to make sure we got it right with the  survey we did last year on what term to use when referring to someone with MS. Since then we have a lot of resistance from the professional community on the use of term MSer."

14 comments:

  1. Just a general comment on 'surveying' from this site. It seems that there is a cross section of members - enough to give you a "quick and dirty" feel for an issue.

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    1. Quick and dirty is fine by us. The surveys or polls are what they are a quick snapshot of an issue.

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  2. Yes, a survey regarding an appropriate noun for those suffering from MS really is a high priority area Dr. Giovannoni. Can't help but feel your priorities are wayward. This topic was settled back in 2011, yet it's here again for all to ponder.

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    1. We have had the term rejected by 3 journals; including several very eminent journal editors. This blog is insignificant relative to the impact of the journals concerned. Before making a noise about things we wanted to make sure we got in right! We plan to publish the results of this survey; so I suggest you look on this exercise as being more definitive.

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    2. Strange, why are they so concerned about what term you use?

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  3. Yes settled here in blogland, but not in the rest of the (real)world.

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  4. BME, LGBT, GRT, MSer - all reducing groups of people to collections of letters - it might appear to be acknowledging diversity, but in fact, if one wants to identify and separate groups for derision, it actually provides the means to do so.

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  5. You will be called something because you are being written about and therefore you need to have a title. The vast majority of papers and grants that I see talk about MS "sufferer" and MS "patient". If you want this, thats fine by me but this is your chance to have a say.

    BME, LGBT, GRT, I had no idea what you were on about until I looked them up Britiah musical experience :-)

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    1. I don't care what they call us. All I care about is trying to get better. All I care about is stopping progression. All I care about is getting the things I am entitled to. That is what's essential, not what you choose to label me as. A lot of energy is being wasted in trivial concerns. This is a big problem in the world of studying MS.

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    2. Agree with anon above. Given the slow pace of MS research what about DARSeR - Dead as a Result of Slow Research.


      You guys need to get some drugs to market and stop poncing around with names for MS patients or drawing underground maps.

      Please set yourself a challenging target before you retire - like doing something which improves our lives!

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    3. Ha! Hilarious. Dead as a Result of Slow Research is priceless, though a little too close to reality.

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    4. Anonymous Monday, January 14, 2013 12:16:00 pm and Anonymous Monday, January 14, 2013 7:07:00 pm

      It is clear you are not neurologists! Getting quality care and dying with dignity is as important to me as research outcomes. When last have you lost control of your bowels? Being looked after well means an awful lot to me.

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    5. May be they like being referred to as clients; the paying sort!

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    6. Maybe I could come up with a new name..poncing indeed

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