Thursday, 20 October 2016

What to you call someone with MS. Making students happy

When you are in the public eye, you can gain either fame or infamy and then we have to put up with abuse. This is usually just sticks and stones/handbags at ten paces stuff, but occasionally it is malicious stuff.

These are the mindless trolls that threaten the future of this particular resource or our participation. 

Trolls have written to our Bosses & the General Medical Council moaning about this and that in the hope that it affects our employment

Some people are after ProfG. 

Was it because he said something?

Who knows, who cares?....Grow up! !!!!!!

However, there has been collateral damage and other people have been roped into the process.

For example someone has been writing to journal editors to question aspects of the validity of a number of papers in an attempt to professionally defame the character of ProfG.  

However, as ProfG is not the senior author of the papers being questioned, the responsibility and defamation is cast onto the corresponding authors, not ProfG. 

One paper that has come in for particular attack has been what do we call an MSer.

Baker D, Pepper G, Yauner F, Giovannoni G. MSer - A new, neutral descriptor for someone with multiple sclerosis.
Mult Scler Relat Disord. 2014;3(1):31-3. 



A certain person wrote to the journal saying they were a journalist
and accused us of this or that. We had to respond to the journal, and gave the very same answers the person had already received when the same information was requested in one of the many Freedom of Information requests sent to the University. So the purpose of the letter was destructive and not information seeking.  


The journal was satisfied with the response and took no further action. This particular person did too many requests and the Queen Mary College eventually treated the requests as being vexatious. 

They refused to answer more FOI requests, meaning that the troll would need to identify themselves as being a real person if they were to appeal this.  They did not. 


One year forward and the same person, is now someone with MS rather than a journalist, and are back at the journal to this time claim that they and some accomplices falsified the data on which the publication was based. They requested that a letter be published exposing their fraud.


The person provided a false address, seemingly linked to a block of flats, that actually did not have a person of that name living in them.....I checked! 

The questions were answered and the journal decided to treat the request as being malicious and declined their request to publish.

Could they have falsified the data in the way that they stated? 

We doubted it, and in doing so they would have had to falsify over 80% of the total survey response to match their claims. The surveys are designed to stop repeated responses from non-malicious people.
However, we found a way that it could be possible to subvert this.

Our reputation has been called into question and if the allegation of the fraud was proved to be true, we would be happy to retract the paper. 

We requested that the University provided legal address and that they investigate these allegations. They did provide legal address, however, as we had not done anything questionable the university did not want to spend resource to investigate this, as the journal was not requesting this. 

So rather than do nothing, we could at least repeat the study, independently of ourselves or get a cohort of people that couldn't be falsified in the way claimed.  

This is what we did and we got responses were obtained from the MS Society Research Network and the MS register, who did and analysed the whole study in a totally independent way. NARCOMS also hosted the link to get a non-UK view.

So to answer the troll(s), if they did really falsify the data, they did a good job, and did it in a way that it resembles the answers in all the other surveys, which are largely consistent.

We would like to thank all of you for participating

You do not like CLIENT.

You prefer PERSON WITH 

and PATIENT is neither liked or disliked.

MSer is a marmite (a yeast-based salty spread product that you like or loathe)-term that is liked and disliked. 

"Sufferer" is a marmite term in the UK, but people in the USA are not sufferers and dislike the term.

Why would people like the term sufferer? I can only guess it relates to peoples experience. 

It is the term often used by the media and sometimes by scientists. 

The term MSer was tolerated on the blog, but we realise people are adverse to being labelled by their conditions. 

The term was originally coined by an MSer perhaps at the same time as IBMer was being used for someone using a computer and you can tolerate it with familiarity. 

However to show we listen we will use pwMS in the future and are using this term in our academic outputs.

PATIENT is the term most used by academics, and it is interesting that it comes from the latin word "to suffer" notably patientum-"someone who sufferers"

Can we as a profession change, well the simple answer is yes,! 

Not too long ago (up to the 1970s) doctors were using the medical terms MORON, IDIOT etc. which is part of a scale of mental capabilities. 

If you are a researcher and health care professional and reading this, it would be arrogance not to adopt this, as use of pwMS takes no effort or cost.

No doubt over time peoples preferences change as one term becomes un-PC by Society.  

This study costs nothing but good will and it was part of a student project.

They are very happy to get their first publication. Let's hope many more to come.


CoI: None...But we are Co-Authors. 

This study received no support and the medical student is very happy to get a publication.

19 comments:

  1. Were they trying to show that 'sufferer' had a higher rating? I don't wish to be rude but I wonder if wanting to be referred to as a sufferer indicates a need for sympathy, which may in turn indicate that someone is struggling mentally.
    I do see a lot of 'sufferers' on social media complaining that people 'don't understand what it is like'. Of course they don't how can they?

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    1. Thanks for this. I have noticed that the media use sufferer alot

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  2. I'm really shocked that you had to waste time, money and effort on this issue. MSer or pwMS doesn't label how your condition affects you, just that you have it. I think at the time we had a discussion whether MSer was short hand for MS sufferer, but decided that it was like a person who farms is a farmer and a person with MS is a MSer. Surely you should have to identify yourself before FOI requests are accepted. I realise there might be a problem with whistle blowers anonymity, but otherwise FOI seems a troll's playground.

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    1. This study shows you how our audiences, and respondees, can bias the results. Our original survey was done via the blog and Shift-MS (www.shift.ms), who popularised the term MSer. Therefore, it is not surprising that when we did the original survey MSers came out on top. When we repeated the survey we went to a new audience of pwMS who had not necessarily heard the term MSer. Based on the latest survey it is clear that pwMS is the preferred term. I am not sure all the Shift-MSers will like this. In short MSer and pwMS is at least acknowledging that we need a neutral term when we talking about people with a disease, particularly on public engagement platforms such as a blog.

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  3. A complete waste of time and money. For too long Team G has been involved in this type of activity - it gives the impression that research is being undertaken. They EDSS self-assessment app, the make your own nine hole peg test and then brain health initiative (follow a good diet, take exercise...). All worthyou activities but not research. What causes progression and how can it be treated, making Alemtuzumab safer and more effective, encouraging them brain to kick-start repair.... so far Team G is in wizard of Oz land - big voice, until you pull back then curtain. Time for some real research Team G!

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    1. I have removed from Spam to address this. I will get a snack for doing this.

      (a) Money it cost nothing but people volunteering their time.
      It is important to read the posts as they may contain answers to your comments
      (b) Students have to do projects as part of the career development, the student spent part of their summer holidays doing the work. They recieved no pay and could do it in their own time at home. They get a publication. This helps set them apart from other students without publications.

      (c) If I accuse you of being a troll, would you not want to defend yourself to show that you are not a troll? Unlike other studies which we often report, the logic of why this was done is there in black and white for you to read.

      (d) Is the research of value yes because we have to use descriptors as part of our work.

      (e) Nine hole peg test the reasons for this was posted a few weeks ago
      and speaks to the importance of hand function...if this was the outcome measure you would have had treatments for progressive MS over a decade ago. Please read..a theme is occuring here I think
      (f) What causes progression...maybe read the blog we have addressed this
      (g) How it can be treated...read the blog...the Blog named the treatment trial that is ongoing as I rant.
      (f) Watch this space...Coming soon;-)
      (g) You can't do everything with the resource and to kick start repair as we have said many times on the blog is to effectively stop the inflammation, doing this early means less need to repair and allows the natural repair mechanisms to do their thang.
      (h) Research takes time some things work some things don't think maybe the repair things we have tried don't work...
      (j) Put your head above the parapet and you get shot at...don't you think?
      (k) I think this week ProfG was lead author on a paper http://multiple-sclerosis-research.blogspot.com/2016/10/clinicspeak-researchspeak-will-my.html
      Is this not research...read the blog.
      Time taken for research to mature...read the blog

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    2. p.s. No responses needed thanks Rant over

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    3. I hope it was a nice bag of crisps, or a healthy apple!

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    4. Well spotted Lexie, I suggest Bacon buttie!

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  4. Challenging, revising and updating terms is appropriate and potentially beneficial, using this issue as a means to 'attack' individuals & facilities/services such as ProfG and this blog is not!
    I lack the words to fully articulate just how beneficial the Bart's MS Blog and accessing ProfG views and information has been to me since I was diagnosed in Nov '15. I've accessed the EMA, FDA and the NIH material amongst several other online information sites and NONE compare for the range, depth of information, and may I say the refreshing style of straight-talking that is the approach here. So, whatever is the most suitable term to refer to whose of us with MS is by, please keep it all coming!

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    1. Thanks for the kind words Fi. Rest assured it'll keep coming!

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  5. Am sorry this happened, thank you all for taking this on the chin.

    On a related note, I have experience behavior like this in family members with MS; this kind of obsessional thinking. An obsession becoming a vent for anger.

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  6. I really enjoy the rants by MD1. They make my morning coffee taste better and put a smile on my face.

    I understand why you have to use terms like MSer or pwMS.

    Personally I prefer Patrick and when necessaary I will add 'oh yes by the way I have MS' I do not like to be defined by my disability but I understand that I need to be defined by researchers. By the way which which collective name do you prefer, geek or nerd?

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    1. Hi Patrick
      Personally, I prefer geek, though boffin is the best!

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    2. Then we can shorten it to Boff...but I am abit of an old fart sometimes:-)

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  7. This is a really interesting article and a subject that I've been trying to handle over this last year.
    From my point of view I don't like the term 'sufferer' as I feel this labels me as a person that is really struggling with life in general because of having MS.
    The term MSer i feel is appropriate yet only in certain situations. For example, I swim, actually swim quite alot. Which I prefer to be known and referred to as an English Channel swimmer in training, rather than me happenign to have MS. Likewise, when I take part in a triathlon, i'm a triathlete and MSer is way down the list of labels that i would choose.

    What I'm saying is that me having MS is low down on the list of things that defines me, yet it does bizarrely encompass all of my sporting achievments over the last few years.

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