How do you want MS-Selfie to evolve? Do you want me to ‘dumb down’ the content to make it more understandable to MS newbies? Should the content be sugar-coated or rose-tinted? ....
No “dumbing down” for me! Got to keep those neural synapses firing by reading & digesting information about our condition. Nor do I object to reality - which is often hard for people. Ross-tinted slants don’t help in the long run.
Yes, completely agree; please don’t change the way you present information. As you said, there’s no point repeating material in the same way that the MS charity websites could do; that would be a waste of your skills. I welcome your perspective as you are a clinician and academic, it is so refreshing not to be spoon-fed the basics but rather to be given challenging information and not treated as if we were wrapped in cotton wool. As ever, many thanks for this site; it is the one I value the most of all the online resources aimed at PwMS.
Absolutely agree - please no 'dumbing down' and please don't be worried about giving us the unvarnished truth - it is absolutely invaluable and literally lifechanging to be able to benefit from your experience and insight and approach to managing MS - this is a terrible condition and we need to know the reality and the best ways we can delay it for as long as possible at every stage and for every symptom - thank you for everything you and your team do to help us
MS Selfie and the newsletters are absolute GOLD for pwMS and we are surely grateful to Prof G for taking the time and putting the energy for this public good. I guess the 5star disclaimer is a nice to have, but i wouldn’t touch on content - it is diverse, objective and so well balanced. Actually I wouldn't spend the energy in reflecting on whether some subscribers are not fully satisfied - the opportunity cost of Prof G’s time and energy is immense
On no account dumb down! I can't pretend to always understand everything in your more highly scientific newsletter but I get the gist. I read the MS Society Magazine in 5 minutes. It's so superficial and stuffed with lifestyle articles.
The dark stuff doesn't freak me out at all. I could see that it could be difficult for some newbies so maybe your idea of grading newsletters would help them.
Learned so much from this site, my doctors have been amazed of my knowledge on research with MS and it’s because of sites like yours! I say if you aren’t up for the info, skip it.
As an MS patient I want the truth, the whole truth and nothing but the truth. I benefit from honest conversations so I can make informed decisions as to how to proceed living with MS post HSCT. Every Neurologist has their own opinion re:- HSCT and I look to the Neurologist who will empower me etc.
I have met doom and gloom Neurologists and really were you looking at your patient having solemnly accepted the Hippocratic Oath when you qualified. Prof G you appear to be an advocate for MS patients as is my Neurologist S.S is in Birmingham. Best of health and happiness everyone.
Thank you for taking the time to request feedback from us.
Please do not ‘dumb down’ the content you create.
I feel dismayed and insulted by the content served up from the MS charities. Before finding ms selfie I read as many of the more accessible research papers as I could because I wanted to make informed treatment decisions. MS-selfie has empowered me to understand more of the latest developments and to have meaningful discussions with my neurologist enabling us to form a shared view of treatment targets. If anything, I’d like to see a few more articles discussing the latest research. Please also continue to provide links to the relevant paper so that we can read for ourselves.
As you highlighted we only have a few minutes each year to speak to a neurologist. MS selfie provides a much needed lifeline in between appointments. The articles where you do a deep dive into specific symptoms and their management are invaluable. Without ms selfie I would feel alone in managing my condition.
I agree that a “rose-tinted-odometer” would be beneficial for some within our community. Personally I don’t feel I need this and very much value your honesty and candour. I deserve to know the truth. Good and bad. It enables me to plan my life and to make the best possible medical decisions for my future. I have asked several doctors about the general natural disease course and typical patient outcomes and they did not feel comfortable to discuss this with me. Articles such as “a time for reflection” and “How bad is my multiple sclerosis?” helped to answer questions that others would not. Without such articles I am left alone to try to piece this information together for myself from research papers.
Apologies for the length of this post but I feel very passionate about preserving this incredible resource.
While I don’t want a rose tinted view, I also think that many neuros (including yourself) can come across at times as hard hearted / insensitive. The tube map is very clever, but an 18 year old recently diagnosed with MS will find “terminal stage” devastating. Likewise, with some of your previous pieces asking “is MS a preventable dementia?”. Again, a young MSer reading this is likely to be scared witless. Another example, is the push for highly effective treatments, but also an acknowledgment that progression is there from the start and that smouldering MS is the real driver of unrelenting disability progression not relapses. There’s a sense of whatever you do won’t make a jot of difference in the long run. Can leave MSers feeling hopeless and powerless.
While many MSers are pretty good at self- management (diet, exercise, anti-relapse therapies) they also need a bit of hope. It would be good to have some stuff by you on what therapies / approaches are likely to be available in 5, 10, 15 years time. You’ve recently posted a number of articles highlighting huge advances in cancer treatment. MSers may we’ll be thinking why aren’t we seeing similar advances in MS treatment. If there was a bit of light at the end of the tunnel eg future treatments to address smouldering MS, encourage repair, MSers are likely to take an even more robust approach to self-management (exercise, diet etc.).
Well said. I do think neuros can be hard-hearted, but the bigger problem IMO is when neuros start to make value and risk assessments on patients' behalf when they have no idea what it's like to have the disease or stare down that barrel.
Regarding the comment on smouldering MS and killing hope - I think mindset and positivity are the biggest interventions available to people outside drugs. A positive outlook ALLOWS you to find energy and will to exercise, to eat well, and to enjoy your life. And so it's a valid concern as to what role you are playing as a public educator on the disease.
Ultimately, I think knowledge is power, and keeping yourself ignorant of potentially useful information so you don't "kill your hope" is not a profitable strategy. I am open to being wrong about that. I certainly went through the heavy depression associated with the diagnosis, and despite "being in remission" from HSCT treatment, it still weighs on me. I found it very difficult to get the bravery to read up on the disease in the months after my dx. But eventually you come to terms with it, and you dig in and start educating yourself.
This is how I see Prof G's substack - a place for people who have come to terms with their diagnosis, and who want to get updated information or guidance.
im hoping you've heard the 'dont dumb down' response from us loud and clear!
can i please underline YB's comment that rose-tinting doesnt help in the long term.
how refreshing it would be to hear much more of the more difficult bits nearer the end.
maybe with palliative care inputting? as an option of course.
i was in the neighbouring bed to an end of life patient when i was last in hospital - so badly managed. Id be very very pleased to know that doesnt have to happen to me!
No dumbing down, I do everything to be proactive but reality does scare me when I cannot get support from the professionals that are needed to help me which doesn't help!
I agree, we read it as you’re providing helpful and invaluable information-if people don’t like or it doesn’t suit them, then they can stop reading it. We can’t please everyone-ever! I think you provide the information you want to and it’s up to individuals to decide if it’s right for them. Thank you for all that you do
No dumbing down, please. If I read a word I don't understand and can't figure it out by context, I look it up. No rose tinting. I want it straight. I find this newsletter to be quite valuable.
I agree with YB. I admit that I cried when I read the tube map. It is very difficult to read! But I’ve asked for this information from my neurologists since my diagnosis 10 years ago! If anything, it has made me more aware of lifestyle changes I can make that will fend off progression! As for “dumbing down”, there are multitudes of bloggers/podcasts/social media sites that pwMS can access! Your approach is perhaps not for everyone, but I believe it is relevant and needed.
Please don’t change - there are many resources for people to read less “science-y stuff” but you highlight useful info. If I don’t understand something, I look it up. People can always read simpler material elsewhere- your content is invaluable. Thank you for treating us with respect and kindness and the acknowledgment that we work very hard to understand and maintain our health.
Please do not dumb down the newsletter. I appreciate your candour and honesty. There is no need to sugar-coat anything.. I doubt any pwMS would need you to do this. They are at the sharp end of living with some serious weirdo symptoms. We are a tough bunch of warriors.
You are right about the reading age of some charitable content. Yes, it’s like the language used is beyond-basic, but they are trying to appeal to a wider readership base. So, I understand why they do this.
With regards to the self-management comment, I think it’s useful to include this content from time to time. Yes, the charities do cover this, but it’s good to get a scientific professional point of view.
You can keep your glasses, thanks. Since diagnosis, and 5 years down the track, I am super-grateful for your no nonsense approach. Everyone is on their own journey and has to make their own choices.
No “dumbing down” for me! Got to keep those neural synapses firing by reading & digesting information about our condition. Nor do I object to reality - which is often hard for people. Ross-tinted slants don’t help in the long run.
Yes, completely agree; please don’t change the way you present information. As you said, there’s no point repeating material in the same way that the MS charity websites could do; that would be a waste of your skills. I welcome your perspective as you are a clinician and academic, it is so refreshing not to be spoon-fed the basics but rather to be given challenging information and not treated as if we were wrapped in cotton wool. As ever, many thanks for this site; it is the one I value the most of all the online resources aimed at PwMS.
Absolutely agree - please no 'dumbing down' and please don't be worried about giving us the unvarnished truth - it is absolutely invaluable and literally lifechanging to be able to benefit from your experience and insight and approach to managing MS - this is a terrible condition and we need to know the reality and the best ways we can delay it for as long as possible at every stage and for every symptom - thank you for everything you and your team do to help us
Well put. Plus learning about our miraculous bodies is awe inspiring.
MS Selfie and the newsletters are absolute GOLD for pwMS and we are surely grateful to Prof G for taking the time and putting the energy for this public good. I guess the 5star disclaimer is a nice to have, but i wouldn’t touch on content - it is diverse, objective and so well balanced. Actually I wouldn't spend the energy in reflecting on whether some subscribers are not fully satisfied - the opportunity cost of Prof G’s time and energy is immense
On no account dumb down! I can't pretend to always understand everything in your more highly scientific newsletter but I get the gist. I read the MS Society Magazine in 5 minutes. It's so superficial and stuffed with lifestyle articles.
The dark stuff doesn't freak me out at all. I could see that it could be difficult for some newbies so maybe your idea of grading newsletters would help them.
The “dark stuff” is part of life!!
Yes! Also I can pause audio and reference a term which I'm foggy on
No! No dumbing down for me either! I have
Learned so much from this site, my doctors have been amazed of my knowledge on research with MS and it’s because of sites like yours! I say if you aren’t up for the info, skip it.
Pam - ‘sites like yours ‘ ? Are there others ?! I thought Prof G was unique- surely there’s no one comes close 😁
Not really, thinking of Facebook group Solving MS. They are up to date on lots of MS research
Please don’t dumb down. As you say high level stuff in easy language is available elsewhere. Health democracy is so important.
As an MS patient I want the truth, the whole truth and nothing but the truth. I benefit from honest conversations so I can make informed decisions as to how to proceed living with MS post HSCT. Every Neurologist has their own opinion re:- HSCT and I look to the Neurologist who will empower me etc.
I have met doom and gloom Neurologists and really were you looking at your patient having solemnly accepted the Hippocratic Oath when you qualified. Prof G you appear to be an advocate for MS patients as is my Neurologist S.S is in Birmingham. Best of health and happiness everyone.
Thank you for taking the time to request feedback from us.
Please do not ‘dumb down’ the content you create.
I feel dismayed and insulted by the content served up from the MS charities. Before finding ms selfie I read as many of the more accessible research papers as I could because I wanted to make informed treatment decisions. MS-selfie has empowered me to understand more of the latest developments and to have meaningful discussions with my neurologist enabling us to form a shared view of treatment targets. If anything, I’d like to see a few more articles discussing the latest research. Please also continue to provide links to the relevant paper so that we can read for ourselves.
As you highlighted we only have a few minutes each year to speak to a neurologist. MS selfie provides a much needed lifeline in between appointments. The articles where you do a deep dive into specific symptoms and their management are invaluable. Without ms selfie I would feel alone in managing my condition.
I agree that a “rose-tinted-odometer” would be beneficial for some within our community. Personally I don’t feel I need this and very much value your honesty and candour. I deserve to know the truth. Good and bad. It enables me to plan my life and to make the best possible medical decisions for my future. I have asked several doctors about the general natural disease course and typical patient outcomes and they did not feel comfortable to discuss this with me. Articles such as “a time for reflection” and “How bad is my multiple sclerosis?” helped to answer questions that others would not. Without such articles I am left alone to try to piece this information together for myself from research papers.
Apologies for the length of this post but I feel very passionate about preserving this incredible resource.
Me too
Patrick do you still do your blog ? Only ask as I messaged you about FES and didn’t hear back. 😊
While I don’t want a rose tinted view, I also think that many neuros (including yourself) can come across at times as hard hearted / insensitive. The tube map is very clever, but an 18 year old recently diagnosed with MS will find “terminal stage” devastating. Likewise, with some of your previous pieces asking “is MS a preventable dementia?”. Again, a young MSer reading this is likely to be scared witless. Another example, is the push for highly effective treatments, but also an acknowledgment that progression is there from the start and that smouldering MS is the real driver of unrelenting disability progression not relapses. There’s a sense of whatever you do won’t make a jot of difference in the long run. Can leave MSers feeling hopeless and powerless.
While many MSers are pretty good at self- management (diet, exercise, anti-relapse therapies) they also need a bit of hope. It would be good to have some stuff by you on what therapies / approaches are likely to be available in 5, 10, 15 years time. You’ve recently posted a number of articles highlighting huge advances in cancer treatment. MSers may we’ll be thinking why aren’t we seeing similar advances in MS treatment. If there was a bit of light at the end of the tunnel eg future treatments to address smouldering MS, encourage repair, MSers are likely to take an even more robust approach to self-management (exercise, diet etc.).
Well said. I do think neuros can be hard-hearted, but the bigger problem IMO is when neuros start to make value and risk assessments on patients' behalf when they have no idea what it's like to have the disease or stare down that barrel.
Regarding the comment on smouldering MS and killing hope - I think mindset and positivity are the biggest interventions available to people outside drugs. A positive outlook ALLOWS you to find energy and will to exercise, to eat well, and to enjoy your life. And so it's a valid concern as to what role you are playing as a public educator on the disease.
Ultimately, I think knowledge is power, and keeping yourself ignorant of potentially useful information so you don't "kill your hope" is not a profitable strategy. I am open to being wrong about that. I certainly went through the heavy depression associated with the diagnosis, and despite "being in remission" from HSCT treatment, it still weighs on me. I found it very difficult to get the bravery to read up on the disease in the months after my dx. But eventually you come to terms with it, and you dig in and start educating yourself.
This is how I see Prof G's substack - a place for people who have come to terms with their diagnosis, and who want to get updated information or guidance.
im hoping you've heard the 'dont dumb down' response from us loud and clear!
can i please underline YB's comment that rose-tinting doesnt help in the long term.
how refreshing it would be to hear much more of the more difficult bits nearer the end.
maybe with palliative care inputting? as an option of course.
i was in the neighbouring bed to an end of life patient when i was last in hospital - so badly managed. Id be very very pleased to know that doesnt have to happen to me!
No dumbing down, I do everything to be proactive but reality does scare me when I cannot get support from the professionals that are needed to help me which doesn't help!
Absolutely … there are no other resources like this. It is so helpful.
Yes.
I agree, we read it as you’re providing helpful and invaluable information-if people don’t like or it doesn’t suit them, then they can stop reading it. We can’t please everyone-ever! I think you provide the information you want to and it’s up to individuals to decide if it’s right for them. Thank you for all that you do
No dumbing down, please. If I read a word I don't understand and can't figure it out by context, I look it up. No rose tinting. I want it straight. I find this newsletter to be quite valuable.
Please do not dumb it down even a bit.
It's a unique resource, dumbed down it would lose most of its value.
FWIW, I think fatigue (and treatment approaches) deserves more coverage.
I agree with YB. I admit that I cried when I read the tube map. It is very difficult to read! But I’ve asked for this information from my neurologists since my diagnosis 10 years ago! If anything, it has made me more aware of lifestyle changes I can make that will fend off progression! As for “dumbing down”, there are multitudes of bloggers/podcasts/social media sites that pwMS can access! Your approach is perhaps not for everyone, but I believe it is relevant and needed.
Please don’t change - there are many resources for people to read less “science-y stuff” but you highlight useful info. If I don’t understand something, I look it up. People can always read simpler material elsewhere- your content is invaluable. Thank you for treating us with respect and kindness and the acknowledgment that we work very hard to understand and maintain our health.
Please do not dumb down the newsletter. I appreciate your candour and honesty. There is no need to sugar-coat anything.. I doubt any pwMS would need you to do this. They are at the sharp end of living with some serious weirdo symptoms. We are a tough bunch of warriors.
You are right about the reading age of some charitable content. Yes, it’s like the language used is beyond-basic, but they are trying to appeal to a wider readership base. So, I understand why they do this.
With regards to the self-management comment, I think it’s useful to include this content from time to time. Yes, the charities do cover this, but it’s good to get a scientific professional point of view.
You can keep your glasses, thanks. Since diagnosis, and 5 years down the track, I am super-grateful for your no nonsense approach. Everyone is on their own journey and has to make their own choices.
That’s a great comment.🙂