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Baker D, Anandhakrishnan A, Tuite-Dalton KA, Lockart-Jones H, Middleton RM, Ford DV, Crowe C, Giovannoni G. Mult Scler Relat Disord. 2016 Nov;10:127-133. doi: 10.1016/j.msard.2016.09.007

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  • Look, just refrain from calling people who have MS mice and it'll prolly be ok lol.

    This name calling is getting far too complicated. Can we start using common sense instead of research:

    1. “Someone who has MS prefers to be described as a “person with MS”.” Let’s forget about people with MS and let’s forget about your life work. Imagine if you had Fibrodysplasia ossificans progressive (or say FOP). Would you prefer for doctors to call and think of you as an “FOPer” or would you really like people to understand that you are a living breathing person, who just happens to have FOP?

    2. “People with MS do not want to be referred to as a “sufferer” or “client”.” You still have Fibrodysplasia ossificans progressiva, or FOP. It affects your ability to pee and your enjoyment of sex. You see doctor about it and you are stressed and sharing some of the most intimate embarrassing parts of your life. The doc turns around to you and says, ah yes FOP can really affect our clients’ ability to have a satisfying sexual relationship. Or ah yes, FOP can really cause sufferers to be unable to void their bladders for the rest of their life.

    Would you seriously go back to that doc to share some more intimate information you don’t really want to share with anyone?

    3. “Researchers largely used the term “Patient”, which is not particularly liked by people with MS.” What researchers use in their technical discussion bothers very few people. When my partner and I were reading scores of journal articles about various MS treatments, we were so focused on understanding the content that neither of us noticed with the references were to people with MS – they could have been called “smelly” in the journal articles and neither of us noticed or now remembers what the terms were.

    4. “A simple change to practises of use of descriptors of MS may help the Patient and Public Involvement (PPI) process."

    Nice idea, but come on. Did the advent of political correctness solve anything in the real world?

    People with MS just want you to think of them as human beings worthy of help. They don’t want you to think of them as a number or as a file that you pick up then put back in the cabinet: they want you to understand that they are important people with important lives, with people they love and people who love them… and they want you sustain their CNS long enough to enjoy all they have. This is what one person with MS wrote to me recently (I have to share it because I was gutted):

    "I remember going to each new neuro appt thinking – ok maybe this one will help me. Maybe if I dress nice they will care enough about me to think I am worth saving…."

    The person in question, in 2015/16 had to visit 6 neuros until she finally found one willing to give her Lemtrada. She has had Lemtrada and is doing really well.

    • My point – "A rose by any other name would smell as sweet".

      There are far more important issues affecting people with MS, including their access to treatment in Western countries.

      It is ridiculous that a person with MS feels that she has to dress up for some neuros to take her seriously, while we debate whether they prefer to be called MSers, or people with MS, or pwMS.

      Changing names is going to do bugger all.

      It's the attitudes that need to change.

      No change in attitude that I am aware of has come from political correctness.

      Succinct enough?

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