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.
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.
A certain person wrote to the journal saying they were a journalist
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.