Monday, 27 April 2015

MS Awareness week 27th. What's In a Name

This week it is MS awareness week in the United Kingdom

Scientists and Neuros and health care professionals write papers every day and you are increasingly getting to see them with open source information, and it is interesting how they refer to you in these papers and grants. Maybe it is time you said what you prefer. 

What's In Name?

We have asked this before and now I am asking this again. 
Why?

Because of 
As you are aware we get Trolls visiting the blog from Time to Time

Some like to cause a bit of mischief by posting 

on the blog or elsewhere, but I am sorry to say some are 
really quite nasty individuals, who are destructive. 
They try to damage professional reputations and ruin careers
and in doing this, hasten the end of this Blog.

They will not win, but I would ask you to consider helping us and
consider signing up to the MS Register to help us respond to the Trolls in a Scientific, rather than a legal way.

The MS Register is a ground-breaking study designed to increase our understanding of living with MS in the UK.


Are you over 18, living in the UK, with a confirmed diagnosis of Multiple Sclerosis?(Sorry if you are not UK based, as part of my awareness I have written to NARCOSMS in the USA so see if they can do the same thing) Then you need to take part in this ground breaking study (Click here)
Once you have completed the registration form you will find a series of questionnaires please complete them notably What's in a Name.

For your reassurance, The MS Register has gained official approval from the National Research Ethics Service Committee South West - Central Bristol. To gain this approval, Swansea University College of Medicine was required to go through a thorough audit of information management practices.

If you opt-out from the MS Register, your details will be deleted If, at any point, you decide you would rather not continue to take part in the MS Register, just let the MS Register know. Although the information you have given them through our online questionnaires or clinical study will remain in their database, they will delete your name and address and will have no way of linking this information to you.

We have no access to any confidential information and the results from the survey are annoymous


P.S. The survey is now active

14 comments:

  1. It won't help Barts with their troll problem, but if you reside in the colonial outposts you can still do your bit by registering with the Australian Multiple Sclerosis Longitudinal Study (AMSLS), now being managed by the Menzies Institute for Medical Research. The inclusion criteria are stated as "Any Australian resident, with a confirmed diagnosis of MS and aged over 18 years is eligible to join the Study." The study has been running for some years now, and has produced a number of interesting and relevant publications from the data collected.
    http://www.msra.org.au/AMSLS

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  2. Why am I yet to see any trolls ?

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    Replies
    1. They're moderated so their comments don't get published. Why some persist is beyond me.

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    2. I'm not a troll, I have MS and some of my comments do not get published. They do not contain personal or marketing information.

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  3. I'd already registered with MS register but when I logged in this morning I couldn't see the What's In a Name questionnaire :-(

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  4. I am totally confused... I am on the MS Register, but having just visited it, I don't know what questionnaire you're referring to and what this has got to do with trolls, scientific papers, reputations... I must have missed something / everything. :o(

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    Replies
    1. The questionnaire is not yet launched apparently

      What is this to do with trolls.

      We receive many very unpleasant trolling comments about ourselves, our families (this is out of order), including death wishes (this is against the law). These are stored and moderated away and spammed.

      Some times they go further such as defaming and sometimes libelling us with our peers, our employers, journal editors and professional organisations and in the process defaming the characters of others. This has been done and I will explain all when the data is published sometime in the future.

      A pdf sent to the prime minister is one thing:-(, but defamation/libel is another and it is important for those people to note that you cannot hide behind "anonymous" and fake ID's/emails as the providers will and do give you up.

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    2. That is abysmal. I am sorry to hear that you have to put up with such rubbish.

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    3. MD & al. - as an MSer I wish to state that the majority of us is full of gratitude and admiration for all of you who commit their precious (free) time to interact with us on this blog and who do research on this difficult disease.

      It is incomprehensible to me why an MSer could offend you whereas it's clear to see that all you're trying to do is to help.

      I am so sorry and hope that such nasty incidents are few.

      Best,

      Anna

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  5. Sorry I have contacted them and it will be up this afternoon.

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  6. We all say we would do anything to find a cure and sharing our data through these registries is one of the most important and simplest ways to help. There is so much to be learned from our information and I trust people reading your blog are engaged and will sign up for the UK MS Registry, if they haven’t already.

    Anyone in the US who would like to participate in a similar study can do so through iConquerMS™. Our portal is endorsed and collaborates with these leading MS organizations in the states – National MS Society, Consortium of MS Centers (sponsor of NARCOMS, too), MS Foundation, CanDoMS, United Spinal Association, MS Association of America, International Organization of MS Nurses, and the Accelerated Cure Project.

    In the United States the portal address for more information and to join is http://www.iconquerms.org

    We’re smart enough to know we can’t sit back and wait for someone else to do this – we need to share now and not later. Good luck with your UK Registry (and elsewhere is the world).

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  7. And I really would like to hear more about your Name Survey ... you have interests up on that one because I struggle all the time with it because first and foremost I am still a person.

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  8. I do not believe there are people who lends itself to do this shameful role of defaming them. Now I wonder with that order? If the work you do on this blog is of paramount importance, not only regarding the research that you perform, but the information and research published daily about MS or related to it. Furthermore I like newcomer to the blog I can say that I have a completely different perspective now when I read a publication circulated in the common media about MS thanks to the wonderful work you Profs keeping this blog ... How I wish I could participate these surveys, sorry that I do not live in UK ... And how I wish that researchers in my country (Brazil) had the same perspective, interest and claw You Profs about MS, since the number of MSers here has grown rapidly in recent years (even as a very sunny country) .. Ignore these trolls, so we definitely do not have to do in life and continue with this amazing work that you perform !!!

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