I don't agree that you preach only to the converted - (i recall some healthy disagreement in the Barts ms blog comments section!)
After my first episode involving a cord lesion, i read far and wide about treatment options and prognosis.
Looking back the info i found ranged from completely inaccurate to wildly out of date - and overall - depressing AF.
I was ready to jump on Copaxone before I found your blog. So i wasn’t a ‘convert’ looking for information just to confirm my viewpoint.
Thankfully i found the ‘How do I want my MS to be treated?’ info (which is now my number one link i send to friends of friends with MS / newly diagnosed) and escalated my treatment plan to Cladribine, and am thankfully now over 2 years NEDA. I also tried to fast-track getting on treatment after reading Brain health: time matters.
The blog also helped me cut through a lot of the noise about HSCT. Which for a newly diagnosed person with MS- it is hard to fully understand the efficacy and risks involved, particularly since private centres don’t seem to publish detailed data.
I’ve no doubt many pwMS will have made some of the biggest life decisions with the help of the clear-cut info and accessible science MS-selfie offers.
Re non-'proactive' pwMS - each to their own. I have experienced a bit of apathy and defeat in segments of online groups of pwMS - and repeatedly come across an remarks that self-management plans are basically a conspiracy theory and not 'backed by science' (like diet, exercise, marginal gains, combination therapy etc). I don't think it's your job to change minds that are already made up or closed off to emerging science. Free will and all that.
I don't think the value of the project should be measured by whether it reaches the disengaged, but by the impact it has on those who choose to engage with it.
Hi Professor G - regarding your colleagues' concern about your "preaching to the choir," you might remind them that in the electronic age, it's so easy to share information, and the MS community in particular appreciates how easy that is. I have forwarded your posts and videos and mentioned your work in my YouTube videos many times (for example, https://youtu.be/hppsEhL64r4). People who weren't already following you began to do so. Never underestimate the power of secondary distribution! Thank you for all you do....Pam
Please advise your colleague that the converted self managers can still learn more, at a very minimum: refinement of what and how they self care.
Does it also smack of feeling threatened by the prospect of dealing with more empowered people with MS?
I agree with other comments about disseminating awareness of the site via secondary means such as peoples social media accounts is a good way to go. Certainly all MS nurses should be made aware of it and be advocating it to their patients.
Lots of ways to promote your work in this digital age that we life in: Social media, YouTube, Podcasts, Short Form, Long Form editorial... the list goes on. Do let me know if you want to collaborate on a specific initiative with Dr Gretchen Hawley and I can get some time in the calendar.
I know that the MS community appreciate your contributions and would be more than happy to share and promote any initiatives you may have going forward. It's not just about MSers of course. What about the unsung heroes, our support cast of family, friends and health care practitioners? I do not think your message is only heard by those I have previously mentioned. There's a trickle-down effect here.
Oct 25, 2022·edited Oct 25, 2022Liked by Gavin Giovannoni
Had I been given hsct or even alemtuzumab in 2011 or 2015(was denied by 2 neurologists) who kept me on ineffective copaxone. I wd still be walking today. Luckily cladribine was approved in 2019 which I did. My last relapse and new lesion that I obtained 2016 led to me going from edss 3.5 to 9 within just a few months. Cladribine saved my life. I am certain that had I not been given this drug(and by a PA !NOT the neuro) I wd not have made it. Since finishing clad. Feb 2021(late finish again due to neuro's office) i feel my progression finally stopped :). Also I am noticing improvements although it's very slow. But I'm optimistic now. Just wish clad. Had not been taken off market in 2011. So many could have been saved.
Thanks to your clarity trial u are saving so many!
Btw I still wd want to talk w you on how you decided on cladribine :) ty again for yr work and please never stop
It takes time for anyone using the internet to gain traction. Your MS Selfie news letter must be spreading further than just 'the converted'. Is it daft of me to suggest that every once in a while you ask readers to spread the word. I know you use Twitter but perhaps there is other social media where people can click on a link. Realistically that excludes Instagram.
Meanwhile keep up the good work, I really appreciate it.
It's funny that you'd phrase it this way, I feel like MS-Selfie is for people who have "graduated" Dr. Boster's videos, where he focuses on being understandable and making sure you're doing at least a little self-management.
“ One of my colleagues recently criticised MS-Selfie, saying that I preach to the converted, in that people who subscribe and read MS-Selfie are already self-managing their MS. They wanted to know how it is helping pwMS who are not proactive about managing their MS. How should I respond?”
The easy answer to your question- ask them to recommend to such patients that they read MS-Selfie.
But then there are those who don’t use computers and/or have depression and won’t follow up. So perhaps more media options may help - eg a podcast available through platforms such as Spotify (for non technophobes), pack of MS-Selfie cards for clinicians to give to more ‘analogue’ patients.
Self management post-Covid isn’t a game changer I would say, look at people with Type 1 diabetes, in the early 2000s too there was research around ‘the expert patient’ which looked into a number of long term conditions. There was barriers by some HCP who did not like being told things to do, especially from the youngsters, Sickle Cell was an interesting case in point.
As for RIS, before you tackle that please deal with the numbskulls telling people they have CIS when they obviously do NOT🤬
‘Preaching to the converted’ I’d say so what! (keeping it clean) There are inevitable ripple effects from your information e.g my own GP contacted me with a question about another patient at the practice who had the diagnosis and was getting worse but wasn’t on any treatment, my response was ‘why not’ I’m not sure said the GP. I left it at that however I emailed her 2 of the relevant Ms Selfies. I’m sure it’s helped many
In the end we in the west live our lives in (relative) freedom. We make our choices, usually unfettered by overbearing, uninvited advisers. So there may be those out there who do not seek to self mange and that's their right. I know one such pwMS. It rather sad that she doesn't take ownership of her condition, but the same HCPs are advising her as advise me and she is getting treatment.
So who is anyone to say she should be force fed any other options. It's a bit like smokers. We don't lock 'em up. In the end the newer relationships outlined in this Selfie (see the little diagrams) enable us to take more part in our care and there's a continuum from total self actualisers like me, to those who want to be spoon-fed their treatment either through being too unwell to take too much responsibility, or by trusting the HCP to do it all. I think that is the right way.
As you say, one must start somewhere. Perhaps the colleague who criticised the Selfie responded to the questions on the poster and is in the minorities on the pie charts?
Social media is self perpetuating. People find blogs, vlogs, the Selfie etc., when idly looking round, but marketing it is a good idea. So the cards you distribute at ECTRIMS are one way.
I have been using the Selfie since you started it and have lots to do with pwMS, in an advisory capacity. I'm a layperson, but a local healthy living co-ordinators sometimes introduces newly diagnosed people to me and I recommend it. Knowledge of it will spread, via MS nurses in my area (Jeremy is HoD in my clinic) MS Society and the many other bodies like ShiftMS that are in operation in the UK. There's a private MS centre called Merlin near me and I push it there when talking to staff and users. So your critical colleague is a bit out of touch with reality I suspect.
“Preaching to the choir” and reaching people “who are not proactive about managing their MS” are, in my opinion, very valid points. While some are capable of self management but for whatever reason they are not doing so, there are (I believe) a large number who are incapable. I would put an expected number somewhere around 25-50%. Rather than hope these people will self-generate some kind of proactive transition (that counters what thus far has been true about them), I believe they need to be respectfully recognized and accounted for (groups, subgroups) as the distinct large populations that they are, and the fact that they will probably be last to benefit from advances unless somehow manipulated or forced to acquiesce (which of course, is not good).
To illustrate- (true story) an individual did not or would not, in his mind, differentiate between symptom and disease modifier. Whatever he felt (effect) was the product of a tangible “cause” he could isolate and identify. (For many, this process really can be any two things put together.) So he had treated and self-managed himself successfully, in his mind, by doing things he perceived had helped. (And he would go on line and talk about his success, which I’m sure influenced others.) Biotin was a big one (regardless). Makes sense from the periphery. So to complicate matters, he would be the first to tell you he was self-managing himself.
So “guided” self management versus “pick and choose”, is crucial. “Who is (are) your guide(s)?” can be an important question. I don't think it is easy (and forgive me for saying this), for the “upper half” to acknowledge that the “other half” exists and how they function. They are invisible, have adapted, and pretty much anticipate and want to stay that way. Like you and me, they are for the most part proud of their lives and decisions and are ready to defend and justify them. So in terms of MS or anything else for that matter, what are you going to do?
I like how defensive all the comments are about your colleague's criticism! I think my response would be that "preaching" and "converting" are different skillsets, and the education is yours and maybe others could help you out with the converting! And I agree with the other comment that there's a huge gap between deciding you want to self-manage, and having the right information, so converts still need a preacher.
I don't agree that you preach only to the converted - (i recall some healthy disagreement in the Barts ms blog comments section!)
After my first episode involving a cord lesion, i read far and wide about treatment options and prognosis.
Looking back the info i found ranged from completely inaccurate to wildly out of date - and overall - depressing AF.
I was ready to jump on Copaxone before I found your blog. So i wasn’t a ‘convert’ looking for information just to confirm my viewpoint.
Thankfully i found the ‘How do I want my MS to be treated?’ info (which is now my number one link i send to friends of friends with MS / newly diagnosed) and escalated my treatment plan to Cladribine, and am thankfully now over 2 years NEDA. I also tried to fast-track getting on treatment after reading Brain health: time matters.
The blog also helped me cut through a lot of the noise about HSCT. Which for a newly diagnosed person with MS- it is hard to fully understand the efficacy and risks involved, particularly since private centres don’t seem to publish detailed data.
I’ve no doubt many pwMS will have made some of the biggest life decisions with the help of the clear-cut info and accessible science MS-selfie offers.
Re non-'proactive' pwMS - each to their own. I have experienced a bit of apathy and defeat in segments of online groups of pwMS - and repeatedly come across an remarks that self-management plans are basically a conspiracy theory and not 'backed by science' (like diet, exercise, marginal gains, combination therapy etc). I don't think it's your job to change minds that are already made up or closed off to emerging science. Free will and all that.
I don't think the value of the project should be measured by whether it reaches the disengaged, but by the impact it has on those who choose to engage with it.
Hi Professor G - regarding your colleagues' concern about your "preaching to the choir," you might remind them that in the electronic age, it's so easy to share information, and the MS community in particular appreciates how easy that is. I have forwarded your posts and videos and mentioned your work in my YouTube videos many times (for example, https://youtu.be/hppsEhL64r4). People who weren't already following you began to do so. Never underestimate the power of secondary distribution! Thank you for all you do....Pam
Please advise your colleague that the converted self managers can still learn more, at a very minimum: refinement of what and how they self care.
Does it also smack of feeling threatened by the prospect of dealing with more empowered people with MS?
I agree with other comments about disseminating awareness of the site via secondary means such as peoples social media accounts is a good way to go. Certainly all MS nurses should be made aware of it and be advocating it to their patients.
Lots of ways to promote your work in this digital age that we life in: Social media, YouTube, Podcasts, Short Form, Long Form editorial... the list goes on. Do let me know if you want to collaborate on a specific initiative with Dr Gretchen Hawley and I can get some time in the calendar.
I know that the MS community appreciate your contributions and would be more than happy to share and promote any initiatives you may have going forward. It's not just about MSers of course. What about the unsung heroes, our support cast of family, friends and health care practitioners? I do not think your message is only heard by those I have previously mentioned. There's a trickle-down effect here.
Had I been given hsct or even alemtuzumab in 2011 or 2015(was denied by 2 neurologists) who kept me on ineffective copaxone. I wd still be walking today. Luckily cladribine was approved in 2019 which I did. My last relapse and new lesion that I obtained 2016 led to me going from edss 3.5 to 9 within just a few months. Cladribine saved my life. I am certain that had I not been given this drug(and by a PA !NOT the neuro) I wd not have made it. Since finishing clad. Feb 2021(late finish again due to neuro's office) i feel my progression finally stopped :). Also I am noticing improvements although it's very slow. But I'm optimistic now. Just wish clad. Had not been taken off market in 2011. So many could have been saved.
Thanks to your clarity trial u are saving so many!
Btw I still wd want to talk w you on how you decided on cladribine :) ty again for yr work and please never stop
It takes time for anyone using the internet to gain traction. Your MS Selfie news letter must be spreading further than just 'the converted'. Is it daft of me to suggest that every once in a while you ask readers to spread the word. I know you use Twitter but perhaps there is other social media where people can click on a link. Realistically that excludes Instagram.
Meanwhile keep up the good work, I really appreciate it.
Reach out to partners and other caregivers of people with MS! Offer resources for them too.
To be honest I'm a pretty clued up reader and yet I learn more about MS from this blog than anything else (bar Dr Boster and Dr Beabers channels)
There's nothing wrong with preaching to the converted, that's how you build up an audience and share the knowledge.
The challenge is reaching new demographics, audiences (customers in my line of work) but without your base there isn't much else.
Shame that there isn't anything big on EBV I was hoping more would come out of it. Oh well next year I suppose
It's funny that you'd phrase it this way, I feel like MS-Selfie is for people who have "graduated" Dr. Boster's videos, where he focuses on being understandable and making sure you're doing at least a little self-management.
“ One of my colleagues recently criticised MS-Selfie, saying that I preach to the converted, in that people who subscribe and read MS-Selfie are already self-managing their MS. They wanted to know how it is helping pwMS who are not proactive about managing their MS. How should I respond?”
The easy answer to your question- ask them to recommend to such patients that they read MS-Selfie.
But then there are those who don’t use computers and/or have depression and won’t follow up. So perhaps more media options may help - eg a podcast available through platforms such as Spotify (for non technophobes), pack of MS-Selfie cards for clinicians to give to more ‘analogue’ patients.
Self management post-Covid isn’t a game changer I would say, look at people with Type 1 diabetes, in the early 2000s too there was research around ‘the expert patient’ which looked into a number of long term conditions. There was barriers by some HCP who did not like being told things to do, especially from the youngsters, Sickle Cell was an interesting case in point.
As for RIS, before you tackle that please deal with the numbskulls telling people they have CIS when they obviously do NOT🤬
Thanks for another great Message.
‘Preaching to the converted’ I’d say so what! (keeping it clean) There are inevitable ripple effects from your information e.g my own GP contacted me with a question about another patient at the practice who had the diagnosis and was getting worse but wasn’t on any treatment, my response was ‘why not’ I’m not sure said the GP. I left it at that however I emailed her 2 of the relevant Ms Selfies. I’m sure it’s helped many
In the end we in the west live our lives in (relative) freedom. We make our choices, usually unfettered by overbearing, uninvited advisers. So there may be those out there who do not seek to self mange and that's their right. I know one such pwMS. It rather sad that she doesn't take ownership of her condition, but the same HCPs are advising her as advise me and she is getting treatment.
So who is anyone to say she should be force fed any other options. It's a bit like smokers. We don't lock 'em up. In the end the newer relationships outlined in this Selfie (see the little diagrams) enable us to take more part in our care and there's a continuum from total self actualisers like me, to those who want to be spoon-fed their treatment either through being too unwell to take too much responsibility, or by trusting the HCP to do it all. I think that is the right way.
As you say, one must start somewhere. Perhaps the colleague who criticised the Selfie responded to the questions on the poster and is in the minorities on the pie charts?
Social media is self perpetuating. People find blogs, vlogs, the Selfie etc., when idly looking round, but marketing it is a good idea. So the cards you distribute at ECTRIMS are one way.
I have been using the Selfie since you started it and have lots to do with pwMS, in an advisory capacity. I'm a layperson, but a local healthy living co-ordinators sometimes introduces newly diagnosed people to me and I recommend it. Knowledge of it will spread, via MS nurses in my area (Jeremy is HoD in my clinic) MS Society and the many other bodies like ShiftMS that are in operation in the UK. There's a private MS centre called Merlin near me and I push it there when talking to staff and users. So your critical colleague is a bit out of touch with reality I suspect.
thanks for the update its great for those who cannot attend
“Preaching to the choir” and reaching people “who are not proactive about managing their MS” are, in my opinion, very valid points. While some are capable of self management but for whatever reason they are not doing so, there are (I believe) a large number who are incapable. I would put an expected number somewhere around 25-50%. Rather than hope these people will self-generate some kind of proactive transition (that counters what thus far has been true about them), I believe they need to be respectfully recognized and accounted for (groups, subgroups) as the distinct large populations that they are, and the fact that they will probably be last to benefit from advances unless somehow manipulated or forced to acquiesce (which of course, is not good).
To illustrate- (true story) an individual did not or would not, in his mind, differentiate between symptom and disease modifier. Whatever he felt (effect) was the product of a tangible “cause” he could isolate and identify. (For many, this process really can be any two things put together.) So he had treated and self-managed himself successfully, in his mind, by doing things he perceived had helped. (And he would go on line and talk about his success, which I’m sure influenced others.) Biotin was a big one (regardless). Makes sense from the periphery. So to complicate matters, he would be the first to tell you he was self-managing himself.
So “guided” self management versus “pick and choose”, is crucial. “Who is (are) your guide(s)?” can be an important question. I don't think it is easy (and forgive me for saying this), for the “upper half” to acknowledge that the “other half” exists and how they function. They are invisible, have adapted, and pretty much anticipate and want to stay that way. Like you and me, they are for the most part proud of their lives and decisions and are ready to defend and justify them. So in terms of MS or anything else for that matter, what are you going to do?
I like how defensive all the comments are about your colleague's criticism! I think my response would be that "preaching" and "converting" are different skillsets, and the education is yours and maybe others could help you out with the converting! And I agree with the other comment that there's a huge gap between deciding you want to self-manage, and having the right information, so converts still need a preacher.