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.
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