I am now away from work on a summer holiday with my family from the 17th of July to the 1st of August and will not be doing a daily MS Selfie newsletter. While I am away I would appreciate it if you could start a discussion on how you want this Newsletter to evolve. For example:
What do you want it to cover?
Is there a need for a weekly Q&A session?
Do you want guest writers?
What frequency is ideal?
Do you want podcasts or video content?
What is the ideal length of a daily Newsletters; does a long Newsletter put you off reading it?
Should I put in place a small summary at the beginning of each Newsletter?
Hi Gavin, your newsletter is already fascinating and highly informative. I also like the way you question current orthodoxies and open up fresh ways of thinking.
Things that would interest me for future blog posts are:
- fatigue, why it happens in MS, and how - if at all - it can be treated, with medication and behavioural changes and any other approaches
- information on the differences in disease process between RRMS and PPMS
- discussions about why PPMS is so hard to treat, and thoughts on possible future research and treatment options for PPMS
- In general, I'd like to see PPMS discussed more than it is at present, and contributions from you on this would be highly valued.
Hi Prof G, thank you for organising these daily news letters, I find them really useful and am happy with the frequency, content length and subjects discussed. Podcasts are great but I am happy to read text as this is much easier on a lunch break. Keep the updates coming!
Thanks for all your efforts with the news letter. My suggestions are as follows:
1. I’d keep the newsletters to once a week. Good for your work life balance and I think MSers need to limit the time they spend on reading newsletters, blogs, MS society websites etc. It can start to become all consuming (I’m talking from my own experience). I’d also suggest stopping weekend posts on the MS research blog.
2. While it’s interesting to find out the mechanisms behind the array of often grim symptoms which come with the disease, I’d be interested in a bit of Crystal ball gazing. What might be coming in 5, 10 years which could change the prognosis / treatment for this disease. Also a piece/s on where we are now (regarding the knowledge as to what MS is / does) and where are the gaps in the knowledge.
3. There are a number of major MS conferences in the last quarter of 2021. It would be nice it you / a guest poster could highlight in the newsletter ten bullet points of the key research / trial results repeated.
Thanks for the newsletter, I have already learned a lot that my neuros have never explained. Personally have trouble with screens, glare and contrast so reading is more difficult and I prefer podcasts 🤷🏽♀️
I subscribed to your newsletter this week and I have to say I find it very informative and interesting, while also entertaining.
Personally, I find that a daily newsletter is enjoyable. Guest writers are a great plus for areas that *maybe* are not your expertise, and also to have a different perspective. For example, scientists/doctors that only focus on Hispanic pwMS.
I think video content is more difficult to enjoy on the go, as you have to watch+listen+comprehend what you’re saying in that video. Text is fine for me.
However, the Q&A sessions could be on livestream so the feedback and interaction get to be a little more personal and warm.
Those are my suggestions. I’d only add that I appreciate your time and information. Every article provides a grain of peace.
So far what you have written is great because it is still scientific, I really hate when things are oversimplified and lose the scientific rational. You are achieving the correct balance please keep doing this. Also please enjoy your well deserved break.
What do you want it to cover?
Some suggested future content: MRI scans what do they really tell us, how are they used in the UK Vs others places. What is important to ask you consultant. Can we use our health data better, can image analysis of MRI scans help personalise MS (Similar to what is happening in breast cancer) The positives and negatives of sharing health data for MS.
What big things can we as pwMS help influence in terms of research direction and what are the roadblocks.
Is there a need for a weekly Q&A session? Monthly would be good
Do you want guest writers? yes
What frequency is ideal? one or two posts a week is probably best for me
Do you want podcasts or video content? yes
What is the ideal length of a daily Newsletters; does a long Newsletter put you off reading it?
One page is good. Yes when its too long I can get put off. Happy to be provided with links to follow up on.
Should I put in place a small summary at the beginning of each Newsletter? yes
Thank you for the MOST informative and helpful newsletter. My spouse has had MS for 43 years and I've found your input to be the most helpful and easy to understand in all those years. You are valuable to many PWms and I hope you can continue.
What do you want it to cover? You seem to cover comprehensive issues with MS already. Maybe end stages MS (does MS fade out / secondary MS / how to deal with DISABLING fatigue and inability to be in social settings due to high sensitivity to stimulation in environments.
Is there a need for a weekly Q&A session? Maybe monthly or bi monthly?
Do you want guest writers? no
What frequency is ideal? Don't want to burn you out - you are vital and helpful - so maybe 1 per week rather than 1 per day?
Do you want podcasts or video content? no
What is the ideal length of a daily Newsletters; does a long Newsletter put you off reading it? I really appreciate the short length of your daily posts - not so overwhelming - can even remember or communicate with others what i read.
Should I put in place a small summary at the beginning of each Newsletter? Yes that would be helpful.
Dear Prof G, First of all, enjoy your holiday. Your newsletter and blog have been invaluable to me in helping to self manage my PPMS so a huge thank you. I have been able have informed discussions with my neuro on medication as a result of the info you have provided. A weekly newsletter would be great and I have no problem in reading a long missive. The suggestion of a summary at the beginning is a good one. As far as topics, current and upcoming research, managing deteriorating mobility, bowel and bladder issues. Videos/podcasts would also be interesting. Don't think there is a need for a regular Q&A session, although if a hot topic emerges that could change. Guest writers would be welcome.
Enjoy your holiday, have a proper break :-) Thank you for what you’re doing to educate and empower PwMS. The concept of Selfie is spot on for those of us who want to do what we can to mitigate the effects of MS on our lives.
I agree with much of what’s already been said. Would like to see something about trying to get other neuros and HCPs on board with some of the ways of thinking/treating. Maybe policy makers if that’s where decisions are made.
As exercise is so important, ideas about how to achieve this when some but not a lot of assistance is needed.
I look forward to contributing further on return from holiday.
Very new to your newsletter. enjoying frequency, subjects and length. Love a podcast, perhaps with guests that you could discuss topics with? Probably wouldn't watch video. Thanks for you time and sharing your knowledge. Enjoy your break.
Hi Gavin, I agree with the comments / ideas below. I would like some podcasts but I think 15-20 mins is a good maximum length. Every newsletter so far has been so helpful. Thank you.
What do you want it to cover? Keep doing what you are doing. Items of interest to me: (1) pathogenic cause of MS? (2) anything for caregivers. (3) trial synopsis and updates and your opinions regarding them.
Is there a need for a weekly Q&A session? Not for me.
Do you want guest writers? nope. I trust you.
What frequency is ideal? 1/week
Do you want podcasts or video content? nope. Reading is easier.
What is the ideal length of a daily Newsletters; does a long Newsletter put you off reading it? Your newsletters are just right as they are.
Should I put in place a small summary at the beginning of each Newsletter? Yup. Good idea.
Is there a need for a weekly Q&A session? - I think that this depends on the topic, but, while reading the newsletter, I mostly don't feel that Q&A session is needed.
Do you want guest writers? - No.
What frequency is ideal? - When ever you feel something should be written, because with every newsletter I'm learning something new and important.
Do you want podcasts or video content? - No.
What is the ideal length of a daily Newsletters; does a long Newsletter put you off reading it? - No, it doesn't.
Should I put in place a small summary at the beginning of each Newsletter? - It could be useful.
First, thank you for your emails. They've been particularly valuable during covid times when neurology appointments have been by phone and feel curtailed. They've filled a gap 🙂. Thanks for taking the time to write them.
I think the frequency should be up to you and your work/life balance; maybe committing to a daily email is too much for you, but say 3 times a week when you have time rather than on specific days? But if you enjoy writing them, do it every day!
Having a short summary at the beginning is a good idea. People can then choose to read what interests them. Maybe have a FAQs email every so often as well?
Dear Prof G, your newsletter is absolutely brilliant and I find the format fine as it is. Personally, I find it a bit overwhelming to get one on a daily basis, and would prefer it if it was weekly. I'm sure others will disagree.
Hope you have a great vacation !! Re topics to cover- with the Ectrim's meeting coming up I would love to have your coverage (possibly in multiple newsletters ) of emerging topics. Also other meeting coverage is equally important. A weekly Q&A would be helpful but am afraid this could be a deluge. Guest writers not necessary. We love to hear your opinions. Frequency 1xper week. Podcasts or video -fine with me if you have time but I like being able to save your written thoughts as a PDF file e.g. the immunology lesson that I can refer back to. !! Summary not necessary because you put the title in the subject line.
What would you do if you were diagnosed with progressive MS? Surely you have some ideas. I have a hard time believing you or any other MS specialist would do nothing like the NHS recommends.
>Is there a need for a weekly Q&A session?
A weekly Q&A would be great if you have the time.
>Do you want guest writers?
Depends on the writer, but I'm sure anyone you select will be worth hearing from.
>What frequency is ideal?
I like the current daily releases.
>Do you want podcasts or video content?
Dr. Aaron Boster does livestream Q&As on his Youtube channel once in a while, something like that would be fantastic. But in general I suspect podcasts/videos would be too time-consuming to record and edit.
>What is the ideal length of a daily Newsletters; does a long Newsletter put you off reading it?
No, make them as long as you like.
>Should I put in place a small summary at the beginning of each Newsletter?
Hi Gavin, I hope you have a good holiday with your family :) Thanks again for all the content you share with us all, as others below have said it is highly appreciated always!! I also didn't realise until this post we could comment and join in the discussion here either.
In terms of the questions:
What do you want it to cover? I like the topics you cover already so far so more of these. I would also really enjoy other MS/medical reading or book recommendations - i'm reading The Black Swan by Taleb after hearing 'black swan' events mentioned on the MS Blog.
Is there a need for a weekly Q&A session? No i don't think so
Do you want guest writers? It could be good to hear from MS nurses / other healthcare professionals who deal with the day-to-day of MS on this newsletter as they may have other ideas re: self management content suggestions from their POV
What frequency is ideal? However much you think is good for you - if I were you i'd keep an eye on open rates to see what is the sweet spot for the masses :)
Do you want podcasts or video content? No to podcasts, I enjoyed the videos you've done before as they add a personal touch but 10-15 mins is the ideal length IMO.
What is the ideal length of a daily Newsletters; does a long Newsletter put you off reading it? No it doesn't but i agree that a TLDR at the top is a good idea - can always go back to it later if it's of interest but long
Should I put in place a small summary at the beginning of each Newsletter? Yes but keep to 1 sentence maybe
Enjoy your holidays! It would be great to have weekly posts from you with links to video explaining MS, therapies etc so that the community of pwMS can educate themselves. Also it would be very nice to have guest posts from researcher outside UK maybe one per country once every one or two weeks so we can hear also the voice of MS researcher outside from UK. A summary con be useful if the post is very long. Personally, I tend to read everything but if the post is long I may have to break it into more parts due to time required. Thank you
I think you are doing a good job picking topics already. I don't think there's a need for a scheduled Q&A session, as long as you are able to address clear, factual questions in the substack comments. I have no preference about guest writers.
Ideal frequency for me is weekly/biweekly, I do NOT want video content, though if you are linking out, linking to videos is okay.
None of the newsletters I've received so far have been long enough to put me off reading them, but I do think I probably have a limit :) I think a summary at the beginning is nice, and I know a handful of other newsletters that do a "this is what I'm reading/watching/listening to this week" section that's like 3-5 links to GOOD resources and/or rarely covered topics and/or experts, and I like that. If it's just links to fill up the space, no thanks.
I hope you have a good holiday, no sneaking away to check your emails.
I would like you to shine a much bigger light on hidden disabilities.
I have no problem with the frequency but I think it would be a sensible idea to limit your post to a maximum, let's say 750 words. If it needs more words then do another post on the subsequent day and tell the readers that there will be more information.
Guest posts from both MS consultants and MS sufferers. I think it is vital to allow the lived experience to have a voice but I do think you as the editor should have the final word on whether or not it is published.
I prefer short(ish) posts and I also prefer a short summary or a good 1st paragraph to grab m attention. Weekly is fine with me but more frequent if something of import needs to be said
First of all, many thanks for all the information you share through your postings.
Sometimes, I do wonder how you find the time to generate the quantity you do.
Perhaps a 'less is more' approach would be preferable with newsletters sent twice a week on specific regular days (not Sundays).
A short summary at the beginning is a good idea; it then allows me to make a quick decision on whether to continue reading the article in it's entirety or not.
Try not to make the articles too long; yes that can be a turn-off. I receive a lot of material by email and do not have the time to read absolutely everything. Again, 'less is more'.
Guest writers, yes, good idea.
Finally, have a great holiday and no postings whilst you are away! Relaxxxxxxxx!!!! :-)
Content is great and very much appreciated. For example I am having a bladder instillation next week thanks to you (let’s hope that reduces the frequency of my UTIs 14 since lockdown started).
I think a short summary at the head of the email is a good idea.
Many of the emails are very long, but they are full of useful content so I am not sure shortening them is a good idea. But I’m sure you could keep them as short as necessary.
I do find it depressing getting one every day as it makes me focus on my MS and I would be rather focusing on my life. I would prefer a fortnightly or even monthly newsletter that I could choose to look at at a time of my choosing.
But keep up the good work as it is wonderful to read your intelligent well-informed expert messages.
Thank you for all your comments and emails. Overall you like to format and it seems you don't want too many Newsletters; once or twice a week would suffice. Looks like you don't want video, but podcasting is an optional add-on. A short summary will be helpful and maybe the occasional Q&A session.
As many of the commenters before me - thank you for your newsletters. Each topic is of relevance, and always so readably presented.
Can I add a topic for presentation - that of the drug naive pwMS. (I think that is the term used for those who decline DMTs) I’d be interested to know of any studies which demonstrate outcomes, and to know of support which can be given in the place of DMTs.
It'll take you a while to read all the comments you've received, so I just want to echo what others have said - your newsletter is great, really informative, and I am concerned that daily blogs will wear you out eventually - once a week is fine for me, podcast or blog, whatever works best. It's hugely appreciated. Thank you for your support to the MS community!
Hello Gavin. I really enjoy your newsletter. The frequency is about right. With the MSBlog, this is already a rich diet of information. It is pitched about right, because if a reader has a scientific or medical background, there is a fair amount on offer from MD, Klaus, Ruth, Sharmilee et al. Medics also have access to mountains of papers and journals and the MS societies are a source of information too.
I respond better to the written word, though videos and webinars are very useful. Guest speakers have already got platforms online but if they seem to you to add more to what you have to say, that could work. One of the occasional problems with the MSBlog is that the posts can be very frequent. It can feel somewhat like sensory overload.
So you seem to me to have pitched it right already. It's informative without being daunting. I learn almost everything from you, Barts, J Hobart and occasionally US neuros like Aaron Boster. My MS textbooks are very out of date and it seems pointless buying more, as MS research and knowledge has grown exponentially with no sign of slowing.
Hello Professor. I am finding the newsletters very interesting and informative. I think they strike the right balance of scientific but not incomprehensible to us 'lay' people.
In answer to your questions:
What do you want it to cover? I find the topics such as Covid 19 vaccine, colour blindness, the difference between therapies/DMTs insightful. I am always interested in hearing about research, developments in treatment and tips on caring for oneself to reduce the impact of the MS. It is great to have deeper insight through this newsletter; it's an opportunity to deeper explore topics that aren't covered in a consultation or can't be afforded the time.
Is there a need for a weekly Q&A session? Not sure on weekly, but maybe monthly. A Q&A would be great.
Do you want guest writers? I am always interested to hear what is happening in other countries. It would be great to have neurological experts from around the world contribute.
What frequency is ideal? For me, a weekly or twice weekly one would be great.
Do you want podcasts or video content? Podcasts are a winner but not too long! (15 mins?)
What is the ideal length of a daily Newsletters; does a long Newsletter put you off reading it? No, it doesn't if I am interested in the topic. I appreciate the level of detail required to fully explain, and for me to understand, the topic.
Should I put in place a small summary at the beginning of each Newsletter? I am ambivalent about this.
I would appreciate something from you about what you are involved in, what developments you are optimistic about etc. Not in every newsletter - maybe once a month, make it a personal observations one.
Thanks so much for doing this. I truly marvel at how you manage your time and find the time to do these 'extras' - and perhaps that's an expert masterclass podcast in itself!!
Hope you're having a great holiday and enjoying plenty of downtime.
Hi Gavin, your newsletter is already fascinating and highly informative. I also like the way you question current orthodoxies and open up fresh ways of thinking.
Things that would interest me for future blog posts are:
- fatigue, why it happens in MS, and how - if at all - it can be treated, with medication and behavioural changes and any other approaches
- information on the differences in disease process between RRMS and PPMS
- discussions about why PPMS is so hard to treat, and thoughts on possible future research and treatment options for PPMS
- In general, I'd like to see PPMS discussed more than it is at present, and contributions from you on this would be highly valued.
Hi Prof G, thank you for organising these daily news letters, I find them really useful and am happy with the frequency, content length and subjects discussed. Podcasts are great but I am happy to read text as this is much easier on a lunch break. Keep the updates coming!
I forgot to say congratulations on your entire online presence. Enjoy your well earned holiday with your famiy
Thanks for all your efforts with the news letter. My suggestions are as follows:
1. I’d keep the newsletters to once a week. Good for your work life balance and I think MSers need to limit the time they spend on reading newsletters, blogs, MS society websites etc. It can start to become all consuming (I’m talking from my own experience). I’d also suggest stopping weekend posts on the MS research blog.
2. While it’s interesting to find out the mechanisms behind the array of often grim symptoms which come with the disease, I’d be interested in a bit of Crystal ball gazing. What might be coming in 5, 10 years which could change the prognosis / treatment for this disease. Also a piece/s on where we are now (regarding the knowledge as to what MS is / does) and where are the gaps in the knowledge.
3. There are a number of major MS conferences in the last quarter of 2021. It would be nice it you / a guest poster could highlight in the newsletter ten bullet points of the key research / trial results repeated.
Thanks for the newsletter, I have already learned a lot that my neuros have never explained. Personally have trouble with screens, glare and contrast so reading is more difficult and I prefer podcasts 🤷🏽♀️
I subscribed to your newsletter this week and I have to say I find it very informative and interesting, while also entertaining.
Personally, I find that a daily newsletter is enjoyable. Guest writers are a great plus for areas that *maybe* are not your expertise, and also to have a different perspective. For example, scientists/doctors that only focus on Hispanic pwMS.
I think video content is more difficult to enjoy on the go, as you have to watch+listen+comprehend what you’re saying in that video. Text is fine for me.
However, the Q&A sessions could be on livestream so the feedback and interaction get to be a little more personal and warm.
Those are my suggestions. I’d only add that I appreciate your time and information. Every article provides a grain of peace.
So far what you have written is great because it is still scientific, I really hate when things are oversimplified and lose the scientific rational. You are achieving the correct balance please keep doing this. Also please enjoy your well deserved break.
What do you want it to cover?
Some suggested future content: MRI scans what do they really tell us, how are they used in the UK Vs others places. What is important to ask you consultant. Can we use our health data better, can image analysis of MRI scans help personalise MS (Similar to what is happening in breast cancer) The positives and negatives of sharing health data for MS.
What big things can we as pwMS help influence in terms of research direction and what are the roadblocks.
Is there a need for a weekly Q&A session? Monthly would be good
Do you want guest writers? yes
What frequency is ideal? one or two posts a week is probably best for me
Do you want podcasts or video content? yes
What is the ideal length of a daily Newsletters; does a long Newsletter put you off reading it?
One page is good. Yes when its too long I can get put off. Happy to be provided with links to follow up on.
Should I put in place a small summary at the beginning of each Newsletter? yes
Thank you for the MOST informative and helpful newsletter. My spouse has had MS for 43 years and I've found your input to be the most helpful and easy to understand in all those years. You are valuable to many PWms and I hope you can continue.
What do you want it to cover? You seem to cover comprehensive issues with MS already. Maybe end stages MS (does MS fade out / secondary MS / how to deal with DISABLING fatigue and inability to be in social settings due to high sensitivity to stimulation in environments.
Is there a need for a weekly Q&A session? Maybe monthly or bi monthly?
Do you want guest writers? no
What frequency is ideal? Don't want to burn you out - you are vital and helpful - so maybe 1 per week rather than 1 per day?
Do you want podcasts or video content? no
What is the ideal length of a daily Newsletters; does a long Newsletter put you off reading it? I really appreciate the short length of your daily posts - not so overwhelming - can even remember or communicate with others what i read.
Should I put in place a small summary at the beginning of each Newsletter? Yes that would be helpful.
Dear Prof G, First of all, enjoy your holiday. Your newsletter and blog have been invaluable to me in helping to self manage my PPMS so a huge thank you. I have been able have informed discussions with my neuro on medication as a result of the info you have provided. A weekly newsletter would be great and I have no problem in reading a long missive. The suggestion of a summary at the beginning is a good one. As far as topics, current and upcoming research, managing deteriorating mobility, bowel and bladder issues. Videos/podcasts would also be interesting. Don't think there is a need for a regular Q&A session, although if a hot topic emerges that could change. Guest writers would be welcome.
Hi Gavin
Enjoy your holiday, have a proper break :-) Thank you for what you’re doing to educate and empower PwMS. The concept of Selfie is spot on for those of us who want to do what we can to mitigate the effects of MS on our lives.
I agree with much of what’s already been said. Would like to see something about trying to get other neuros and HCPs on board with some of the ways of thinking/treating. Maybe policy makers if that’s where decisions are made.
As exercise is so important, ideas about how to achieve this when some but not a lot of assistance is needed.
I look forward to contributing further on return from holiday.
Very new to your newsletter. enjoying frequency, subjects and length. Love a podcast, perhaps with guests that you could discuss topics with? Probably wouldn't watch video. Thanks for you time and sharing your knowledge. Enjoy your break.
Hi Gavin, I agree with the comments / ideas below. I would like some podcasts but I think 15-20 mins is a good maximum length. Every newsletter so far has been so helpful. Thank you.
What do you want it to cover? Keep doing what you are doing. Items of interest to me: (1) pathogenic cause of MS? (2) anything for caregivers. (3) trial synopsis and updates and your opinions regarding them.
Is there a need for a weekly Q&A session? Not for me.
Do you want guest writers? nope. I trust you.
What frequency is ideal? 1/week
Do you want podcasts or video content? nope. Reading is easier.
What is the ideal length of a daily Newsletters; does a long Newsletter put you off reading it? Your newsletters are just right as they are.
Should I put in place a small summary at the beginning of each Newsletter? Yup. Good idea.
Dear Prof G,
Enjoy the holiday with your family. :)
I will answer some of your questions:
Is there a need for a weekly Q&A session? - I think that this depends on the topic, but, while reading the newsletter, I mostly don't feel that Q&A session is needed.
Do you want guest writers? - No.
What frequency is ideal? - When ever you feel something should be written, because with every newsletter I'm learning something new and important.
Do you want podcasts or video content? - No.
What is the ideal length of a daily Newsletters; does a long Newsletter put you off reading it? - No, it doesn't.
Should I put in place a small summary at the beginning of each Newsletter? - It could be useful.
Thank you very much for everything you do.
What do you want it to cover?
Anything important for me living with MS
Is there a need for a weekly Q&A session?
No.
Do you want guest writers?
If they have something useful to say.
What frequency is ideal?
As often as something is worth sharing.
Do you want podcasts or video content?
Yes please.
What is the ideal length of a daily Newsletters; does a long Newsletter put you off reading it?
Should I put in place a small summary at the beginning of each Newsletter?
If there is a lot to say, a long Newsletter is appropriate, but a summary at the beginning would help when life is busy.
Hi Prof G
First, thank you for your emails. They've been particularly valuable during covid times when neurology appointments have been by phone and feel curtailed. They've filled a gap 🙂. Thanks for taking the time to write them.
I think the frequency should be up to you and your work/life balance; maybe committing to a daily email is too much for you, but say 3 times a week when you have time rather than on specific days? But if you enjoy writing them, do it every day!
Having a short summary at the beginning is a good idea. People can then choose to read what interests them. Maybe have a FAQs email every so often as well?
Have a fabulous, relaxing holiday.
Hi prof Gavin,
Enjoy your family !!
Fatigue and heat sensitivity are major problems I personally deal with.
Your suggestion to include guest writers should include neurologists from other countries as a way to disseminate the way you approach ms treatments.
Dear Prof G, your newsletter is absolutely brilliant and I find the format fine as it is. Personally, I find it a bit overwhelming to get one on a daily basis, and would prefer it if it was weekly. I'm sure others will disagree.
Hope you have a great vacation !! Re topics to cover- with the Ectrim's meeting coming up I would love to have your coverage (possibly in multiple newsletters ) of emerging topics. Also other meeting coverage is equally important. A weekly Q&A would be helpful but am afraid this could be a deluge. Guest writers not necessary. We love to hear your opinions. Frequency 1xper week. Podcasts or video -fine with me if you have time but I like being able to save your written thoughts as a PDF file e.g. the immunology lesson that I can refer back to. !! Summary not necessary because you put the title in the subject line.
>What do you want it to cover?
What would you do if you were diagnosed with progressive MS? Surely you have some ideas. I have a hard time believing you or any other MS specialist would do nothing like the NHS recommends.
>Is there a need for a weekly Q&A session?
A weekly Q&A would be great if you have the time.
>Do you want guest writers?
Depends on the writer, but I'm sure anyone you select will be worth hearing from.
>What frequency is ideal?
I like the current daily releases.
>Do you want podcasts or video content?
Dr. Aaron Boster does livestream Q&As on his Youtube channel once in a while, something like that would be fantastic. But in general I suspect podcasts/videos would be too time-consuming to record and edit.
>What is the ideal length of a daily Newsletters; does a long Newsletter put you off reading it?
No, make them as long as you like.
>Should I put in place a small summary at the beginning of each Newsletter?
I don't think this is necessary.
What do you want it to cover? - arguments for starting DMTs, long-term side-effects of DMTs, latest research
Is there a need for a weekly Q&A session? not for me
Do you want guest writers? yes, other perspectives always useful
What frequency is ideal? I would read a short newsletter every day but might not read something longer
Do you want podcasts or video content? not for me
What is the ideal length of a daily Newsletters; does a long Newsletter put you off reading it? A screen or two is ideal
Should I put in place a small summary at the beginning of each Newsletter? yes please
Hi Gavin, I hope you have a good holiday with your family :) Thanks again for all the content you share with us all, as others below have said it is highly appreciated always!! I also didn't realise until this post we could comment and join in the discussion here either.
In terms of the questions:
What do you want it to cover? I like the topics you cover already so far so more of these. I would also really enjoy other MS/medical reading or book recommendations - i'm reading The Black Swan by Taleb after hearing 'black swan' events mentioned on the MS Blog.
Is there a need for a weekly Q&A session? No i don't think so
Do you want guest writers? It could be good to hear from MS nurses / other healthcare professionals who deal with the day-to-day of MS on this newsletter as they may have other ideas re: self management content suggestions from their POV
What frequency is ideal? However much you think is good for you - if I were you i'd keep an eye on open rates to see what is the sweet spot for the masses :)
Do you want podcasts or video content? No to podcasts, I enjoyed the videos you've done before as they add a personal touch but 10-15 mins is the ideal length IMO.
What is the ideal length of a daily Newsletters; does a long Newsletter put you off reading it? No it doesn't but i agree that a TLDR at the top is a good idea - can always go back to it later if it's of interest but long
Should I put in place a small summary at the beginning of each Newsletter? Yes but keep to 1 sentence maybe
Enjoy your holidays! It would be great to have weekly posts from you with links to video explaining MS, therapies etc so that the community of pwMS can educate themselves. Also it would be very nice to have guest posts from researcher outside UK maybe one per country once every one or two weeks so we can hear also the voice of MS researcher outside from UK. A summary con be useful if the post is very long. Personally, I tend to read everything but if the post is long I may have to break it into more parts due to time required. Thank you
I think you are doing a good job picking topics already. I don't think there's a need for a scheduled Q&A session, as long as you are able to address clear, factual questions in the substack comments. I have no preference about guest writers.
Ideal frequency for me is weekly/biweekly, I do NOT want video content, though if you are linking out, linking to videos is okay.
None of the newsletters I've received so far have been long enough to put me off reading them, but I do think I probably have a limit :) I think a summary at the beginning is nice, and I know a handful of other newsletters that do a "this is what I'm reading/watching/listening to this week" section that's like 3-5 links to GOOD resources and/or rarely covered topics and/or experts, and I like that. If it's just links to fill up the space, no thanks.
Hello Prof G,
I hope you have a good holiday, no sneaking away to check your emails.
I would like you to shine a much bigger light on hidden disabilities.
I have no problem with the frequency but I think it would be a sensible idea to limit your post to a maximum, let's say 750 words. If it needs more words then do another post on the subsequent day and tell the readers that there will be more information.
Guest posts from both MS consultants and MS sufferers. I think it is vital to allow the lived experience to have a voice but I do think you as the editor should have the final word on whether or not it is published.
Videos are an excellent idea but keep them short
I prefer short(ish) posts and I also prefer a short summary or a good 1st paragraph to grab m attention. Weekly is fine with me but more frequent if something of import needs to be said
Hi Prof G,
First of all, many thanks for all the information you share through your postings.
Sometimes, I do wonder how you find the time to generate the quantity you do.
Perhaps a 'less is more' approach would be preferable with newsletters sent twice a week on specific regular days (not Sundays).
A short summary at the beginning is a good idea; it then allows me to make a quick decision on whether to continue reading the article in it's entirety or not.
Try not to make the articles too long; yes that can be a turn-off. I receive a lot of material by email and do not have the time to read absolutely everything. Again, 'less is more'.
Guest writers, yes, good idea.
Finally, have a great holiday and no postings whilst you are away! Relaxxxxxxxx!!!! :-)
Content is great and very much appreciated. For example I am having a bladder instillation next week thanks to you (let’s hope that reduces the frequency of my UTIs 14 since lockdown started).
I think a short summary at the head of the email is a good idea.
Many of the emails are very long, but they are full of useful content so I am not sure shortening them is a good idea. But I’m sure you could keep them as short as necessary.
I do find it depressing getting one every day as it makes me focus on my MS and I would be rather focusing on my life. I would prefer a fortnightly or even monthly newsletter that I could choose to look at at a time of my choosing.
But keep up the good work as it is wonderful to read your intelligent well-informed expert messages.
Thank you for all your comments and emails. Overall you like to format and it seems you don't want too many Newsletters; once or twice a week would suffice. Looks like you don't want video, but podcasting is an optional add-on. A short summary will be helpful and maybe the occasional Q&A session.
P.S. Yes, I had a very restful holiday.
Hi Gavin
As many of the commenters before me - thank you for your newsletters. Each topic is of relevance, and always so readably presented.
Can I add a topic for presentation - that of the drug naive pwMS. (I think that is the term used for those who decline DMTs) I’d be interested to know of any studies which demonstrate outcomes, and to know of support which can be given in the place of DMTs.
Absolutely no rush. Many thanks.
It'll take you a while to read all the comments you've received, so I just want to echo what others have said - your newsletter is great, really informative, and I am concerned that daily blogs will wear you out eventually - once a week is fine for me, podcast or blog, whatever works best. It's hugely appreciated. Thank you for your support to the MS community!
Hello Gavin. I really enjoy your newsletter. The frequency is about right. With the MSBlog, this is already a rich diet of information. It is pitched about right, because if a reader has a scientific or medical background, there is a fair amount on offer from MD, Klaus, Ruth, Sharmilee et al. Medics also have access to mountains of papers and journals and the MS societies are a source of information too.
I respond better to the written word, though videos and webinars are very useful. Guest speakers have already got platforms online but if they seem to you to add more to what you have to say, that could work. One of the occasional problems with the MSBlog is that the posts can be very frequent. It can feel somewhat like sensory overload.
So you seem to me to have pitched it right already. It's informative without being daunting. I learn almost everything from you, Barts, J Hobart and occasionally US neuros like Aaron Boster. My MS textbooks are very out of date and it seems pointless buying more, as MS research and knowledge has grown exponentially with no sign of slowing.
Hope you had a really relaxing holiday.
Hello Professor. I am finding the newsletters very interesting and informative. I think they strike the right balance of scientific but not incomprehensible to us 'lay' people.
In answer to your questions:
What do you want it to cover? I find the topics such as Covid 19 vaccine, colour blindness, the difference between therapies/DMTs insightful. I am always interested in hearing about research, developments in treatment and tips on caring for oneself to reduce the impact of the MS. It is great to have deeper insight through this newsletter; it's an opportunity to deeper explore topics that aren't covered in a consultation or can't be afforded the time.
Is there a need for a weekly Q&A session? Not sure on weekly, but maybe monthly. A Q&A would be great.
Do you want guest writers? I am always interested to hear what is happening in other countries. It would be great to have neurological experts from around the world contribute.
What frequency is ideal? For me, a weekly or twice weekly one would be great.
Do you want podcasts or video content? Podcasts are a winner but not too long! (15 mins?)
What is the ideal length of a daily Newsletters; does a long Newsletter put you off reading it? No, it doesn't if I am interested in the topic. I appreciate the level of detail required to fully explain, and for me to understand, the topic.
Should I put in place a small summary at the beginning of each Newsletter? I am ambivalent about this.
I would appreciate something from you about what you are involved in, what developments you are optimistic about etc. Not in every newsletter - maybe once a month, make it a personal observations one.
Thanks so much for doing this. I truly marvel at how you manage your time and find the time to do these 'extras' - and perhaps that's an expert masterclass podcast in itself!!
Hope you're having a great holiday and enjoying plenty of downtime.