Should MS-Selfie evolve?
Please have your say on what topics you want covered and how you want MS-Selfie to evolve?
As summer starts and there is a sense of renewal, it is time for some MS-Selfie reflection. Unless MS-Selfie evolves, it will become boring and repetitive. You may have noticed I have had a guest newsletter and have started covering general medical issues that may be relevant to MS. I still try to cover big research topics, but there are so many competing platforms that cover research, and I am not sure I can compete.
Is there anything I am missing that interests you? Do you still find the Q&A posts helpful?
Please remember the purpose of MS-Selfie must remain a tool to help people with MS self-manage, or at least to empower them to ask the right questions to get the most out of their MS service.
Thanks
Accidental readers
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MS-Selfie newsletters and access to the MS-Selfie microsite are free. In comparison, off-topic Q&A sessions are restricted to paying subscribers. Subscriptions are being used to run and maintain the MS Selfie microsite and other related activities, as I don’t have time to do this myself. You must be a paying subscriber to ask questions unrelated to the newsletters or podcasts. If you can’t afford to become a paying subscriber, please email a request for a complimentary subscription (ms-selfie@giovannoni.net).
Questions
If you have questions unrelated to the newsletters or podcasts, please email them to ms-selfie@giovannoni.net. Prof. G will try to answer them as quickly as possible.
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General Disclaimer
Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have any problems, please tell your healthcare professional, who can help you.
I don’t know of any specific platform targeted at MS patients that presents research in enough detail to be helpful to a well informed patient (which most of your readers are!) if there is such a platform in addition to MS Selfie I’d love to know where, but currently I find your site the most useful to me as a MS patient with quite a good grasp of current research avenues, medical concepts relevant to MS and neurological terminology.
The materials provided by the NHS are (for broad ease of access to all patients) too simplistic to properly educated an informed reader. I really appreciate what you do for us here.
None of the other platforms challenge their readership with real life case studies on treatment selection. The more choice there is, the more valuable this becomes.