Monday, 22 July 2013

How to refer to someone with MS-MSer Published

How to refer to someone with MS? #MSBlog #MSResearch



Lay-members of the public are often involved in grant and ethics review panels. Furthermore grant applications/reports all require some form of lay summary. In response to critical remarks from people with multiple sclerosis (MS) about using the term ‘sufferer’ as a descriptor, a series of surveys using social media were undertaken. People who had MS did not like being called the politically-correct ‘client’ (1%) but also preferred not to be called a ‘patient’ (5%) or a ‘sufferer’ (6%) and felt that these were largely ‘poor’ terms to describe someone with MS. Likewise ‘person living with MS’ did not find favour (11%). In contrast ‘person/people with MS’ received a lot of support (34%) but the majority of responders of the surveys (n=396) supported the use of the term ‘MSer’ (43%) to describe someone with MS. This was considered to be ‘good’ descriptor along with ‘person with MS’. We suggest therefore that ‘MSer’ can be used as a new descriptor when writing about someone with MS, especially in lay summaries. Furthermore the use of ‘patient’ and notably ’sufferer’ and’ client’ should be avoided within both the lay and scientific literature


"The survey results were clear; MSer/MSers or a person or people (PwMS) with MS were the clear winners. 

The message is loud and clear you don't want to be referred to as MS suffers, clients or patients. People living with MS is also not appropriate and is not suitable for referring to post-mortem studies.  

What do neuros actually use?

Hopefully, we will get the wider MS community to adopt these results and start using these terms." 

"Thank you for helping us with this survey and paper."

We are now about to poll the MS register and MS Neuros because docs said they want more proof. 

CoI This is from Team G, Shift and the Blog

12 comments:

  1. Those with MS don't want to be labelled 'sufferers', yet they are pushing for the wider community to accept that their brains are being shredded? How bizarre. No wonder there is such cluelessness in the field of MS.

    ReplyDelete
  2. Fair point, but the use of shred was for different purpose to gt people thinking in a different mindset.

    Oh another purpose of soical media...venting :-)

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  3. I think you will find it was Prof G who wants to use the label shredding and kept posting until he got what he considered to be an acceptable number of people on this blog to agree

    ReplyDelete
    Replies
    1. Yes I agree it was about challenging the sit and wait mentality...f

      Delete
  4. I started a discussion on this paper at the MS Discovery Forum (http://www.msdiscovery.org/forums/discussion/6869-how-should-we-refer-someone-ms#) and on the MSDF Facebook page (https://www.facebook.com/MSDiscoveryForum). Most people with MS who responded dislike the term MSer. A representative comment:

    " I am not an 'MS patient,' because our disease cannot modify our personhood.  An 'MSer' carries the same consequence, by defining me by a disease. The desire to create community -- which may be the genesis of this term -- could instead label us. It's also dangerous, given the wide range in how MS expresses itself."

    ReplyDelete
    Replies
    1. Then how should journals refer to people who have MS? They have to be called SOMETHING!

      Delete
    2. Yes you will be called something whether it is a patient, client and somebody etc.

      It is OK to dislike we need your imput

      Delete
    3. Join the discussion...n of 3 is hardly "most people" so 2/3 had a preference.......maybe I will ask my gran to join the debate to get it to n=4.

      This is the level of survey you get in a make-up advert...2 out of 3 women prefer...X.

      Join the debate.

      http://www.msdiscovery.org/forums/discussion/6869-how-should-we-refer-someone-ms#

      Participants with.... was a good interesting choice shame the person did not volunteer it when we were looking for choices.

      Some people do not seem to like being called British although they were born and bred in Britain from British parents..you can't please every one.

      Delete
  5. Sorry Bob, you lost me at 'personhood'. I'm a mother, I'm a wife, I'm a woman, I'm a lawyer, I'm a driver, I'm a cook. All of these are facets of me, not the whole caboodle. It's just an easy way to talk about someone with MS without it becoming a mouthful of jargon. It's not about defining someone's life

    ReplyDelete
    Replies
    1. Hear Hear to Anon 7.36
      Made me think

      I'm a picker
      I'm a grinner
      I'm a lover
      And I'm a sinner
      playin' my music in the sun
      I'm a joker
      I'm a smoker
      I'm a mid-night toker
      I get my lovin' on the run

      Steve Miller..not the one from Chicago :-)

      P.S. I never inhaled.

      Delete
  6. As a person who doesn't have MS, I don't feel qualified to have a preference about this terminology. I'm just reporting how some people with MS responded on the MS Discovery Forum. As the editor of that forum, I daily wrestle with how to refer to people with MS. When I read the results of the survey I thought, problem solved! "MSer" is the term preferred by the majority. Hence my surprise at finding little support for this term among the (non-representative sample of) people who responded at MSDF.

    ReplyDelete
    Replies
    1. If you look at the surveys on "MSer" there were two poles of "like very much" or "dislike very much"...it was a term that we believed was coined by an MSer, and this concept has been used by other such as an IBMer is someone who uses IBM.

      Person etc with MS was more grey. Fewer "like very much" but a lot less "dislike very much"

      But there is a sea of difference between MSers and Neuros and what they call someone with M.

      I suspect Neurologists would not want to be called neuros...or... sphincters or God.

      Maybe we should pool them..Doctor might come out high.

      I guess people don't like to be labelled...

      Delete

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