Another vote for keeping the Newsletters the same.
The alternative for pwMS is generalist non-technical advice which allows clinicians to be gatekeepers. Yes, the newsletters are technical and demand investment in the subject matter to understand them, but are the most accessible route for non-clinicians to grasp what might be going on in their bodies. Also, your newsletters provide a springboard to more technical papers if further research is sought.
As someone with Smouldering PPMS (4th straight MRI showing NEIDA in 2 years), I fully intend to challenge my MS Consultant into finding a solution/ treatment plan to my advancing condition and/or get me onto a trial (BTKi looks promising...). I can honestly say that I wouldn't know or understand enough to challenge my Consultant if your Newsletters didn't exist.
I've said it before, but I think your information level is at the more "medical" end of lay/accessible, but I think that's right where it belongs. There are many other sources that are less technical if people want them, and you are very good about responding to questions.
As for the policy document, I agree "Flipping the Pyramid Matters" is not perfect - it requires extra definitions/context/prior knowledge to be understood! Perhaps something like "start strong" etc.
I definitely agree with what you say about flipping the pyramid. (I don’t know if you remember my story from previous comments). In 2010 I was diagnosed with MS and started on Copaxone (I suspect that it was not better than placebo but the MS wasn’t as aggressive then). In 2013 I had my first severe relapse that left me with a weak right leg and left arm that both fatigued very rapidly. I think that it was actually a series of relapses starting with the right leg. It lasted five months and despite working very hard with my rehabilitation it left me with a right leg that was weaker. I fought, with the help of my MS nurse to get on Tysabri and remained relapse free on it until 2016 when I was persuaded by a neurologist to come off it because of my JCV positive status. On Gilenya I once again started with right leg problems and also right arm problems. I was told that the right arm episode wasn’t a relapse (perhaps it was smouldering MS.) I insisted on going back on Tysabri and was again was stable for a few years. Once again I was warned about the PML risk but this time when I couldn’t get aHSCT on the NHS I chose to go abroad. I’m approaching four years aHSCT and have gone from an EDSS of 3.5 to 1 ( I’m back playing golf again and only detect weakness in my right arm if I foolishly attempt a cartwheel! I’m aware of some weakness in my gluteal muscles during a quite advanced pilates class. I detect slightly more fatigue in my right leg when it comes to the last set of leg extensions in the gym. I’m now working more on improving the cognitive side of things and my attention span and memory have definitely shown improvements. If I’d gone straight onto the more effective drugs I’m certain that I wouldn’t have any deficits. I certainly wouldn’t have suffered all the anguish of years with episodes in a wheelchair and giving up my career as a physio. The years that I struggled with the relapses (eventually moving to a bungalow) and the cost have having HSCT privately (my husband paid for it out of his pension fund) has had a massive financial impact on our lives.
It’s interesting that the two effective treatments that I had are the ones that you mention related to EBV.
I love your newsletters and look forward to reading them each week. They are so informative and challenging. I sometimes struggle with understanding some parts but that's because there is so much to learn and be aware of, but I wouldn't want you to change anything. You do an incredible job and really help push the boundaries, you're a great champion for PWMS. You inspire many other neurologists too as I have heard many refer to you and your work.
Thank you. I also love the gift you were given, that's so thoughtful.
Nov 16, 2022·edited Nov 16, 2022Liked by Gavin Giovannoni
Ty for all you do. Had I had you as my neuro yrs back I wd still be walking and functioning today. Neuros here in my town do very little if any detailed research on ms. So many patients here have accumulated. Disability due to their inaction and the failed wait and see approach! My only hope now is nvg291 and similR repair compounds. Fingers 🤞
Ty again
Yes yr selfie. Is very scientific.im glad because it empowers us. It's a great thing you do as you do not talk down to non scientists like so many others do. :)
Hi Prof G, I find your newsletters very informative and set at an understandable level for a person with MS, don't change the style of your MS selfies they're great just as they are.
Flipping the pyramid makes sense it's very like the iceberg that's taught and used in Human Resources management training and development and is very familiar to me.
Please keep writing at the level you do. You provide me with so much useful info more so than any HCP (I think they like to keep us in the dark we’re easier to manage that way) and more useful than the official patient websites eg MS Society
Thank you Professor G. for sharing your knowledge so selflessly. Making a decision is not easy, but you always mange to lit a spark in a tunnel and lead the way. Thank you.
I cannot pretend to understand all the technical terms and phrases but your blogs and Emails are brilliant - please don't change them. I'll keep my dictionary handy and then I will continue to follow one of the few voices to openly support the interests of guys like me who are in the MS Club.
I really appreciate and thank you for words of wisdom and encouragement.
Please don't change a thing that you are doing! I think the technical level is spot on. Readers can research on the web if they need help understanding or simply bring it to their neurologists. You provide a crucial bridge between the softer summaries found on the MS new sites and journal articles, which are much more technical and also frequently available for purchase only. Thanks also for the excellent summary of the meeting and for making your slides available. You're doing tremendous work for the MS community around the globe, so thank you!
Just wanted to say PLEASE keep your newsletter as it is. Many HCPs especially in MS field tend to underestimate patients (in other words, think pwMS can't/are not willing to understand their disease beyond necessary basics). But for many of us, opposite is the truth. We are willing to do whatever it takes to make our lives the best despite having MS. Unfortunately, insurance policies and/or too conservative thinking HCPs often stay in our way rather than help us to achieve that, esp in countries still prioritising escalation model. This is why self education and active approach is so important for pwMS, and I mean on really medical level. This is why your (and some others) work is so important and I wanted to thank you for that!
Another vote for keeping the Newsletters the same.
The alternative for pwMS is generalist non-technical advice which allows clinicians to be gatekeepers. Yes, the newsletters are technical and demand investment in the subject matter to understand them, but are the most accessible route for non-clinicians to grasp what might be going on in their bodies. Also, your newsletters provide a springboard to more technical papers if further research is sought.
As someone with Smouldering PPMS (4th straight MRI showing NEIDA in 2 years), I fully intend to challenge my MS Consultant into finding a solution/ treatment plan to my advancing condition and/or get me onto a trial (BTKi looks promising...). I can honestly say that I wouldn't know or understand enough to challenge my Consultant if your Newsletters didn't exist.
Keep it up Gavin, you're making a difference!
I've said it before, but I think your information level is at the more "medical" end of lay/accessible, but I think that's right where it belongs. There are many other sources that are less technical if people want them, and you are very good about responding to questions.
As for the policy document, I agree "Flipping the Pyramid Matters" is not perfect - it requires extra definitions/context/prior knowledge to be understood! Perhaps something like "start strong" etc.
PLEASE don't change the level of information you are giving on the MS-Selfie! Where else would we get expert, informed information and comment? Thanks
I definitely agree with what you say about flipping the pyramid. (I don’t know if you remember my story from previous comments). In 2010 I was diagnosed with MS and started on Copaxone (I suspect that it was not better than placebo but the MS wasn’t as aggressive then). In 2013 I had my first severe relapse that left me with a weak right leg and left arm that both fatigued very rapidly. I think that it was actually a series of relapses starting with the right leg. It lasted five months and despite working very hard with my rehabilitation it left me with a right leg that was weaker. I fought, with the help of my MS nurse to get on Tysabri and remained relapse free on it until 2016 when I was persuaded by a neurologist to come off it because of my JCV positive status. On Gilenya I once again started with right leg problems and also right arm problems. I was told that the right arm episode wasn’t a relapse (perhaps it was smouldering MS.) I insisted on going back on Tysabri and was again was stable for a few years. Once again I was warned about the PML risk but this time when I couldn’t get aHSCT on the NHS I chose to go abroad. I’m approaching four years aHSCT and have gone from an EDSS of 3.5 to 1 ( I’m back playing golf again and only detect weakness in my right arm if I foolishly attempt a cartwheel! I’m aware of some weakness in my gluteal muscles during a quite advanced pilates class. I detect slightly more fatigue in my right leg when it comes to the last set of leg extensions in the gym. I’m now working more on improving the cognitive side of things and my attention span and memory have definitely shown improvements. If I’d gone straight onto the more effective drugs I’m certain that I wouldn’t have any deficits. I certainly wouldn’t have suffered all the anguish of years with episodes in a wheelchair and giving up my career as a physio. The years that I struggled with the relapses (eventually moving to a bungalow) and the cost have having HSCT privately (my husband paid for it out of his pension fund) has had a massive financial impact on our lives.
It’s interesting that the two effective treatments that I had are the ones that you mention related to EBV.
I love your newsletters and look forward to reading them each week. They are so informative and challenging. I sometimes struggle with understanding some parts but that's because there is so much to learn and be aware of, but I wouldn't want you to change anything. You do an incredible job and really help push the boundaries, you're a great champion for PWMS. You inspire many other neurologists too as I have heard many refer to you and your work.
Thank you. I also love the gift you were given, that's so thoughtful.
Ty for all you do. Had I had you as my neuro yrs back I wd still be walking and functioning today. Neuros here in my town do very little if any detailed research on ms. So many patients here have accumulated. Disability due to their inaction and the failed wait and see approach! My only hope now is nvg291 and similR repair compounds. Fingers 🤞
Ty again
Yes yr selfie. Is very scientific.im glad because it empowers us. It's a great thing you do as you do not talk down to non scientists like so many others do. :)
Hi Prof G, I find your newsletters very informative and set at an understandable level for a person with MS, don't change the style of your MS selfies they're great just as they are.
Flipping the pyramid makes sense it's very like the iceberg that's taught and used in Human Resources management training and development and is very familiar to me.
Keep up your great work.
Great post, thanks 🙂
Re level of MS Selfie info
As others are saying it is perfect as is. Fantastic that HCPs also reading, we should all be working together after all.
Please keep writing at the level you do. You provide me with so much useful info more so than any HCP (I think they like to keep us in the dark we’re easier to manage that way) and more useful than the official patient websites eg MS Society
As soon as my son was diagnosed 'out of the blue' as a Nurse mum.. .I 'looked for MS information and luckily found you Dr G.
I can only thank you so much as he is booked for HSCT Mexico, 'flipping the pyramid' for sure!
Don't change anything...unless you can get even better :)
Thanks Prof G. Great summary
Thank you Professor G. for sharing your knowledge so selflessly. Making a decision is not easy, but you always mange to lit a spark in a tunnel and lead the way. Thank you.
You are the best; wear your beads; and stay safe.
I cannot pretend to understand all the technical terms and phrases but your blogs and Emails are brilliant - please don't change them. I'll keep my dictionary handy and then I will continue to follow one of the few voices to openly support the interests of guys like me who are in the MS Club.
I really appreciate and thank you for words of wisdom and encouragement.
Fliping pyramids talks would have made u very popular there in Edypt.
Please don't change a thing that you are doing! I think the technical level is spot on. Readers can research on the web if they need help understanding or simply bring it to their neurologists. You provide a crucial bridge between the softer summaries found on the MS new sites and journal articles, which are much more technical and also frequently available for purchase only. Thanks also for the excellent summary of the meeting and for making your slides available. You're doing tremendous work for the MS community around the globe, so thank you!
Just wanted to say PLEASE keep your newsletter as it is. Many HCPs especially in MS field tend to underestimate patients (in other words, think pwMS can't/are not willing to understand their disease beyond necessary basics). But for many of us, opposite is the truth. We are willing to do whatever it takes to make our lives the best despite having MS. Unfortunately, insurance policies and/or too conservative thinking HCPs often stay in our way rather than help us to achieve that, esp in countries still prioritising escalation model. This is why self education and active approach is so important for pwMS, and I mean on really medical level. This is why your (and some others) work is so important and I wanted to thank you for that!