Volume 1: Self-management guide for people with multiple sclerosis
A BIG THANK YOU to paying subscribers and people who have made donations to MS-Selfie that has allowed this guide to be produced; it is much appreciated. What do you think of the guide?
Is it not ironic that in the week after I stopped my NHS multiple sclerosis practice, I received the first physical versions of volume 1 of the MS-Selfie ‘Self-management guide for people with multiple sclerosis’, which we are launching at ECTRIMS 2024?
I want the guide to be more than a book, so there are empty spaces on each page where you can write notes. We also designed the guide to be in an A4 format so that it can be filed in a lever-arch file, allowing users, i.e. you, to use the guide as a filing system to file your medical notes and letters and other helpful MS-related information. The guide is available to download as a PDF so you can read it digitally and/or print it yourself to start your own file. Please be aware that it is 228 pages long.
I need to know what you think of the guide, whether a digital PDF file is sufficient or if we should start selling a ready-printed guide as a pile of ready-punched paper for you to file yourself or in a ready-filed format. Another question is whether there is a market for a book, i.e. in a smaller format. There is no point in spending limited resources on multiple formats unless people with MS purchase and use them.
We are working on volume 2, covering MS symptoms and symptomatic therapies. Hopefully, we can launch the second volume at ECTRIMS 2025.
Finally, a BIG THANK YOU to paying subscribers and people who have made donations to MS-Selfie, which has allowed me to get help. Without help from Ruth Bentley (medical writer) and Sharon Squires (web designer) the curated MS-Selfie microsite, infocards and now the self-management guide would not have happened. I can’t run MS-Selfie as a one-man show. Still on the development slate are the MS-Selfie self-help algorithms or apps to manage MS symptoms, monthly webinars and the MS-Selfie online course for people recently diagnosed with MS. I am hoping that I can use some of the time I have freed up by stopping my NHS practice to get these projects off the ground.
If you think MS-Selfie is a worthy resource and you can afford it, please consider becoming a paid subscriber.
Subscriptions and donations
MS-Selfie newsletters and access to the MS-Selfie microsite are free. In comparison, weekly off-topic Q&A sessions are restricted to paying subscribers. Subscriptions are being used to run and maintain the MS Selfie microsite, as I don’t have time to do it myself. If people want to ask questions unrelated to the Newsletters or Podcasts, you must be a paying subscriber. If you can’t afford to become a paying subscriber, please email a request for a complimentary subscription (ms-selfie@giovannoni.net).
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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 problems, please tell your healthcare professional, who will be able to help you.
I loved working with you on this, Gavin! I hope it will be a useful resource for people with MS and the health professionals who support them. Feedback from readers on the format, readability and features like the key points and glossary would be very welcome. Ruth B
Congratulations you and your team Prof G , this looks like a fabulous project and one that deserves to be widely available.
As for the print/ digital debate , personally I would use a paper version and I like the idea of using it as a file too , but am concerned that the sheer volume of the file /book would be intimidating for a newbie . Perhaps I am underestimating people’s desire for info - 25 years ago when I was diagnosed pre internet , the consultant and the wider world offered no information at all - hopefully people diagnosed today would welcome the excessive amount available distilled into a file like this .
I’d be happy to pay for a copy but would be concerned that not everyone would have the funds . Can we fundraiser for newbies to have a copy ? Nudge some of the pharma cos?