Saturday, 2 May 2015

What's in a Name 2nd

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. 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?
      
We get trolls that try to damage our professional reputations  
and in doing this hasten the end of this Blog.

So I would ask you to consider helping us and
consider signing up to the MS Register 
to help me respond to the Trolls
&
We are seeking independent assistance to get a bigger sample size
to address journal editors concerns

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 we I will write 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.

Disclaimer By completing our survey "What's in a Name" you are consenting to the data you provide being analysed by the MS register and possibly Professors Giovannoni and Baker and their collaborators. Results of these surveys may be submitted for publication but will be anonymous.
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Also one of the biggest things that came from Pharma interest in MS, which makes a positive impact to people with MS, is the MS Specialist Nurse.

The MS Trust is running a campaign to ensure you all get access to an MS Nurse..Join the campaign.....I have....and sign up! 


It costs you nothing except about a minute of your time.





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Live in Australia sign up to their Registry  (Click here)

Live in the USA sign up to their Registry (Click here)
Sorry you can't do our survey, but sign up to 
help researchers in your Country

6 comments:

  1. We get trolls that try to damage our professional reputations
    and in doing this hasten the end of this Blog.


    Mouse, you need to take a chill pill. You get too emotional with this stuff. Just ignore it. The blog is very helpful at helping us understand the various research which is published. Prof Gs clinic speak material is helpful in preparation for a neuro visit. Where the blogs does less well is the cloak and dagger stuff e.g. White names and some of the comments by your colleagues of big news which never actually materialises. There is a fundamental gap between us in the I want treatments no and the work you are undertaking / the research reported often relate to possible treatments in 10-15 years. You've done excellent work on the blog and have dedicated a huge amount of time to it. Whatever happens,to the blog, i thank you for all your efforts.

    ReplyDelete
  2. Ha ha karma i suggested this to a blogger this week and they suggested that I **** ***. I wouldnt be so rude. However to be serious this post is a response to the actions of a troll and we get the last laugh as the paper will demonstrate.
    We ignore most of their actions.
    However many people want an information only site..lThere are afew of them. However as we volunteer our time each of us bring things that keeps it interesting. Once we can not find interest it is time to stop.

    As to giving news of things that are useful in the here and now. There are only a few agents and their use is announced at ECTRIMS so you can come to the blog once a year for this news.
    As to complaints about the cloak and dagger stuff and names thats the problems with animals they are unpredictable and bite....but having no animals means you are back to the once a week post and no response to comments a spot full of wet blankrts and a thousand visits a month rather than two hundred and thirty thousand.

    ReplyDelete
    Replies
    1. oh please mouse, don't even think of a 'pure' info site - we've got tons of that and they are boring, grey and sad.

      and I love the nicknames, white knights and co. - that's some of my favourite posts.

      best,

      Anna

      Delete
  3. Big news not materialising maybe is a learning process that our big news is not your big news and sadly suggests that we should not make comments to save creating false expectations or not take comments and leave it for a commitee to vet.

    ReplyDelete
  4. Well I for one like the humour and I think you should get excited about breakthroughs. Yes they are s long time off changing clinical practice but you got to start somewhere! Keep doing a grand job!

    ReplyDelete
  5. There you go....I'm over reacting again.

    ReplyDelete

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