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?
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
Many congratulations Prof G to you and your team for this excellent project. I think it should be published and I for one would buy the book, it would be a great reference tool.
The NHS will be much poorer without your MS expertise
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?
PDF is fine for me, maybe a print on demand solution would solve upfront costs for the dead tree enthusiasts? Some of them even generate ISBN so that the book can be ordered in regular book stores
15+ years ago it cost me something like 70 EUR to get 5 hard cover copies of my masters thesis that way...
WOW, I have no other words. Thank you so much for this, I’ve spent previous 45min reading about Mavenclad as I started with it yesterday. My doctor did not share 5% of knowledge you presented in pdf.
PS I believe only pdf is quite enough
Can I share this with other pwMS who are not your readers?
Thank you so much. I didn’t know until yesterday that Mavenclad is not DMT, it os IRT similarly like HSCT, so I am hopeful that I will be among the 50% of pwMS who were progression-free after this drug. I am hopeful first time in looong time. Thank you prof G!
I don't know about the UK, but in the US it's easy enough to take a PDF to Kinkos or similar and have it spiral bound, which means the pages will lie flat for easy writing. (One fun trick is to take textbooks, cut off the binding, and rebind with spirals for easier reading!)
It's a fantastic initiative for anyone newly diagnosed with MS, their friends, and family.
I would recommend publishing in various formats to suit the needs of the community. Whether that be PDF, Audio or Print, depending on your budget. Subscribers may be able to help contribute to content and offer testimonials to help market the guide.
I would also recommend partnering with MS Charities and MS Influencers from the medical community to promote sales or help fundraise for the project if that's a direction of travel you would like to take.
Is the book content just for UK readers, or will it be appropriate for overseas readers? Is there scope/time to hop onto Podcasts (live or recorded), share extracts on websites, social media (lives or posts), and email to boost circulation?
I have spoken with Agota (https://www.instagram.com/beatingmyms/) who is already interested to promote this to subscribers/followers. You may want to release small extracts from the content for a soft launch. Just a thought.
Yes, here in states. As Judy says, it is relevant. And imo, more information than we would get here. (Judy, I’m not speaking for you saying that, but it’s definitely more in depth information than I would find.)
This is amazing congrats! Personally I’d prefer a printed guide and would buy and suggest to newly diagnosed to get too. I bought all the books available when diagnosed and none as helpful as this will be
I would love a paper based guide for me, and if not too expensive many more for friends, carers and clients. I speak as an ex-physiotherapist who has had MS for many years and helps run an exercise group. for older and disabled people.
As a newcomer to this group I am SO IMPRESSED, it answers so many of the issues I have had over the years which have never been properly answered before. They validate what I have felt with my smouldering MS and recurrent uti's which local nurses, doctors and Consultants have ignored or not known about. Ignorance is rife!!!
We would have explore the option of on-demand printing. However, it may be easier to find a local printer who can print and punch the holes of the document for filing.
Woo hoo!! A huge thanks to YOU, Ruth, Sharon and everyone who has brought this guide to reality. Giving it a read over, I find it better than I expected, answering so many questions that are simply not available or adequately addressed or explained elsewhere. Personally, I am a paper/book person due to “reading on screen” issues. (I print out anything over a page or two to read.) But the more formats, the better. If printing in book format is too pricey, yes, I would think it could be downloaded and spiraled or one can find a way of creating a “book” format. I’m sure the solutions will come. Again, an enormous thanks, Prof G, to you and your staff!
Wow! This is an amazing resource! PDF works for me. It is searchable. It is easy to carry anywhere on a phone or tablet or whatever. It can be updated more readily. Thank you!
This is terrific- I’ve started reading it and I like how well written it is, nicely formatted (not too busy), but especially how it succinctly informs about all the basics — the categories (a nod to their history), the important things like active or inactive, what is a relapse, DMTs, etc. - and that’s just in the first bit!
I am fine with PDF (may print out parts to have on hand for interested folks), and it is great that Prof G is okay with us sharing it around. — sincerely, a grateful subscriber
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
Thank you, Ruth. It has been a pleasure working with your and Sharon. This project would not have happened without your input. Now for volume 2 ;-)
Many congratulations Prof G to you and your team for this excellent project. I think it should be published and I for one would buy the book, it would be a great reference tool.
The NHS will be much poorer without your MS expertise
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?
PDF is fine for me, maybe a print on demand solution would solve upfront costs for the dead tree enthusiasts? Some of them even generate ISBN so that the book can be ordered in regular book stores
15+ years ago it cost me something like 70 EUR to get 5 hard cover copies of my masters thesis that way...
AN EVEN BIGGER THANK YOU Prof G for all your HUGE EFFORTS on our and many other PwMS's behalf. I very much look forward to reading it.
THANKS AGAIN
WOW, I have no other words. Thank you so much for this, I’ve spent previous 45min reading about Mavenclad as I started with it yesterday. My doctor did not share 5% of knowledge you presented in pdf.
PS I believe only pdf is quite enough
Can I share this with other pwMS who are not your readers?
Please share with it with as many people as you like. It is written to be disseminated.
Hi Belma, ah, you are starting the new DMT! Good to hear, and best wishes! 💕
Thank you so much. I didn’t know until yesterday that Mavenclad is not DMT, it os IRT similarly like HSCT, so I am hopeful that I will be among the 50% of pwMS who were progression-free after this drug. I am hopeful first time in looong time. Thank you prof G!
Mavenclad is a DMT. There are broadly two categories of DMT; maintenancs and IRTs. Mavenclad is an IRT, but it is still a DMT.
Aha, ok, thank you for explaining this! Best regards
A lever-arch file seems an excellent format - I have found it all too easy to lose track of correspondence etc that matters
I don't know about the UK, but in the US it's easy enough to take a PDF to Kinkos or similar and have it spiral bound, which means the pages will lie flat for easy writing. (One fun trick is to take textbooks, cut off the binding, and rebind with spirals for easier reading!)
Great idea!
This is amazing Prof G! I think PDF version would be good that way we can share to educate. Maybe publish some
hard copies to be sold to doctors offices/MS centers?
So happy for you and your collaborators on this project!
It's a fantastic initiative for anyone newly diagnosed with MS, their friends, and family.
I would recommend publishing in various formats to suit the needs of the community. Whether that be PDF, Audio or Print, depending on your budget. Subscribers may be able to help contribute to content and offer testimonials to help market the guide.
I would also recommend partnering with MS Charities and MS Influencers from the medical community to promote sales or help fundraise for the project if that's a direction of travel you would like to take.
Is the book content just for UK readers, or will it be appropriate for overseas readers? Is there scope/time to hop onto Podcasts (live or recorded), share extracts on websites, social media (lives or posts), and email to boost circulation?
Just a few thoughts from me.
Xx
Re: "Is the book content just for UK readers"
No it is for an international readership. People should be aware that treatment guidelines may vary across the world including availability of DMTs.
Drop me a line if you need any help in promoting the guide.
Many thanks. I suggest go ahead and do what you can I will contact shift.ms for help.
I have spoken with Agota (https://www.instagram.com/beatingmyms/) who is already interested to promote this to subscribers/followers. You may want to release small extracts from the content for a soft launch. Just a thought.
I also have connections with Dr Gretchen Hawley who I am sure would be happy to help. Plus, I spoke to Ritu today about the PDF (https://www.instagram.com/multiplesclerosis.awareness/).
All the best, C.
I think we have to develop a formal dissemination plan. I hope it goes viral so that it saves us time.
I read the first 40 pages and they were relevant to me, in the United States.
Yes, here in states. As Judy says, it is relevant. And imo, more information than we would get here. (Judy, I’m not speaking for you saying that, but it’s definitely more in depth information than I would find.)
This is amazing congrats! Personally I’d prefer a printed guide and would buy and suggest to newly diagnosed to get too. I bought all the books available when diagnosed and none as helpful as this will be
If you are in the U.S., you are correct! :)
I would love a paper based guide for me, and if not too expensive many more for friends, carers and clients. I speak as an ex-physiotherapist who has had MS for many years and helps run an exercise group. for older and disabled people.
As a newcomer to this group I am SO IMPRESSED, it answers so many of the issues I have had over the years which have never been properly answered before. They validate what I have felt with my smouldering MS and recurrent uti's which local nurses, doctors and Consultants have ignored or not known about. Ignorance is rife!!!
We would have explore the option of on-demand printing. However, it may be easier to find a local printer who can print and punch the holes of the document for filing.
You are incredible. Thank you 🇦🇺
Woo hoo!! A huge thanks to YOU, Ruth, Sharon and everyone who has brought this guide to reality. Giving it a read over, I find it better than I expected, answering so many questions that are simply not available or adequately addressed or explained elsewhere. Personally, I am a paper/book person due to “reading on screen” issues. (I print out anything over a page or two to read.) But the more formats, the better. If printing in book format is too pricey, yes, I would think it could be downloaded and spiraled or one can find a way of creating a “book” format. I’m sure the solutions will come. Again, an enormous thanks, Prof G, to you and your staff!
Wow! This is an amazing resource! PDF works for me. It is searchable. It is easy to carry anywhere on a phone or tablet or whatever. It can be updated more readily. Thank you!
This is terrific- I’ve started reading it and I like how well written it is, nicely formatted (not too busy), but especially how it succinctly informs about all the basics — the categories (a nod to their history), the important things like active or inactive, what is a relapse, DMTs, etc. - and that’s just in the first bit!
I am fine with PDF (may print out parts to have on hand for interested folks), and it is great that Prof G is okay with us sharing it around. — sincerely, a grateful subscriber