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