Join me on Substack Notes
A new place for us to share ideas
I just published my first MS-Selfie note on Substack Notes, and I would love for you to join me there! It is another forum for discussing MS-related issues.
Notes is a new space on Substack for us to share links, short posts, quotes, photos, and more. I plan to use it for things that don’t fit in the newsletter, like work-in-progress or quick questions.
Why Substack Notes?
Fellow writers and readers are spending time in Notes for various reasons.
Ted Gioia sees Notes as a forum for dialogue.
The idea behind Notes is simple. Millions of people now participate in Substack as writers and readers—but much of this is built on long articles and essays. We now have a forum for dialoguing and sharing shorter posts.
Chris Ryan is drawn to Substack as an alternative for legacy social media.
One of my main reasons for joining Substack was to wean myself off exploitative social media platforms. I’m hoping this is going to help move us along on that journey!
Sherman Alexie wants to create a kind and creative new space in Notes.
I’m going to focus on being positive, with my own thoughts and photos and by linking to songs, stories, poems from around the web and from other Substacks.
How to join
Head to substack.com/notes or find the “Notes” tab in the Substack app. As a subscriber to MS-Selfie, you’ll automatically see my notes. Feel free to like, reply, or share them around!
You can also share notes of your own. I hope this becomes a space where every reader of MS-Selfie can share thoughts, ideas, and interesting quotes from the things we're reading on Substack and beyond.
You can always refer to the Notes FAQ for assistance if you encounter any issues. I am looking forward to seeing you there!
Hi Professor, I had stem cell 15 years ago and Lemtrada 10 years ago. Im now 50, and pretty much every disability I had has been reversed- I could barely walk for over 6 years and now I run regularly 3km and walk 10km.
When I tell people I have done all this they tell me it’s impossible-which is why I wrote a book about my journey.
I’m disheartened that more people are not privy to the work being done by the likes of yourself in halting disability and effectively eliminating MS. This is MASSIVe news. The amount of lives saved and money saved over a lifetime of disability is huge!
However, it seems people are ignorant of these treatment options and the results they can offer.
I was a public figure for many years when at my worst and I have plenty of evidence to document my medical journey.
Hopefully when there are enough of us presenting as ‘cured’ and able to return to a normal life the powers that be will sit up and listen!
PS-my neuro himself was sceptical and found it very hard to define my recovery as any more than temporary luck- after 10 years of continuous perfect health and a strong and able body I’d say it’s a lot more than that- I’ve got my life back!
It is criminal that people are suffering for no reason.