Saturday, 17 March 2012

New survey: how to refer to someone who has MS?

A new survey is in response to yesterday's exchange of comments.

WHAT TERMS DO YOU PREFER TO BE USED TO DESCRIBE SOMEONE WITH MS?

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"This survey may yet prove to be contentious, but there is no point in avoiding the topic. How the world, and this blog, refers to someone with MS is important. The term used needs to be neutral, empowering for people living with the disease, it should not be patronising and it should not entrench stereotypes."

"Please let us know how you feel about this issue. Have we missed out on any terms you think are more appropriate?"

12 comments:

  1. Someone "living with MS" works for me.

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  2. I agree with you. There should be no point to be avoide.

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  3. I like either 'MS sufferer' or 'MS victim'.

    Need to get some sense of what this disease does (makes people suffer). Or the sense that we did nothing yet ended up with this 'bad' disease (and have it for the rest of our lives (until it kills us)).

    'Patient' - many patients for other disease get better, so it doesn't really capture what MS is / does.

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  4. I'm glad this subject has come up because I've been meaning to raise it for ages but I thought it might be seen as a bit trivial and nitpicking. I hate the term "MS'er", until this discussion arose I didn't realise that the apostrophe was for a contraction of sufferer and just thought it was wrong. Now I know what it stands for, it's even worse! At the risk of sounding terribly politically correct, whether I suffer from my MS or not is a judgement for me and those that know me, not for strangers. It is also an opinion and although probably right, "probably" has no place in science. "MSer" is grammatically wrong, a farmer is someone who farms, a driver drives and so on. MS is not a verb and something I can do or not do (how ever hard I try). "PwMS" describes my condition perfectly, I am a person with MS. "PwMS" is also the term most commonly used by scientists and we might as well all use the same language.

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  5. I think there may be a generation issue creeping in also.

    I have ventured on to Shift.ms and noticed that the young people with MS are very comfortable with the term 'MSers'. They use the term as both a noun and a positive adjective. They seem to be almost empowering themselves by referring to each other as ‘MSers’.

    I think the people who come on this blog are perhaps older, and in that sense PwMS sounds more apt. It's more dignified and better suited to a mature readership.

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  6. I didn't choose any of the alternatives listed on the survey. I don't like being defined by an illness. I am not a PwMS, nor an MS'er or er.

    I am me and just happen to have MS. There is a great deal more to me than an illness.

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  7. I do not think that suffer was supposed to be part of the meaning of MSer as the post above clearly indicates. It is was a slip of the pen and a brain fart by Prof G (who is the only person to use the apostrophe). I have never knowingly done this.

    However I think we need an "acceptable" abbreviation or short term to mean someone with MS because it is too tedius to write this out in full, time and time again.


    Should we write YOU and YOUR but not everyone reading the Blog has MS, maybe friend, family, doctor etc.

    As with any terminology it is OK to use until it is linked to something deemed negative by some. So what is PC is forever changing and this is tedious too, one day is OK the next day offence is taken when none is intended. Take for example skin colour.

    "Living with MS" does not work because is is not a discriptor of the person, so we can not talk about the brain of Living with MS.
    Likewise if we are talking about pathology then it is not appropriate to talk about the pLwMS because there has been death.


    Person with MS PwMS, or People with MS PwMS, or person with MS (MSer) and people with MS MSer (MSers).

    As you can see making the term into a noun allows singular and plural to be distinguishable which adds descriptive value. It should be no more offencive than police Office compared to Policeman and Police Women.

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  8. GIVE US YOUR ALTERNATIVES
    FOR A SHORT TERM FOR SOMEONE WITH MS


    THIS WILL PROBABLY BE AN ISSUE THAT GETS RAISED AGAIN, WHO KNOWS IT COULD BE A TIE AND WE HAVE TO CAST THE VOTE AGAIN, BECAUSE SOME CHADS GOT IN THE WAY

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  9. MSer is fine as long as it NOT short for MS sufferer. It can be understood by others withou having to expand an abbreviation

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  10. An MSer is a 'Multiple sclerosis Suffer'

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  11. 'GIVE US YOUR ALTERNATIVES
    FOR A SHORT TERM FOR SOMEONE WITH MS'

    Unlucky

    ReplyDelete
  12. MSer is fine as long as it doesn't mean 'sufferer' which I really dislike

    ReplyDelete

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