I like the design of the logo. Glad you left off the wheelchair and the rope. I don’t think that’s very applicable to everybody. I would definitely wear T-shirt with that logo on it a white T-shirt to show off the colors.! :-)
Thanks for the explanation - it helps to understand the design more explicitly.
Your reference to ‘got to grips with MS’ came to my mind a couple of days ago: I’m a short way into reading ‘The Expectation Effect’ by David Robson.
In the chapter on the nocebo response he says: ‘one study of mild traumatic brain injury, for example, found that measuring peoples initial beliefs about their future prognosis could successfully predict the risk of actually developing post-concussion syndrome in 80 per cent of cases. Indeed, the patients beliefs proved to be a better indicator of lingering distress than the severity of the patients symptoms at the time of impact. If you think that your symptoms will last a long time and are beyond your control, they are far more likely to stay that way, all other things being equal.’
How many more PwMS would be in better shape/progressing far more slowly, if the message you’re evidencing with this logo was provided far more universally?
Degenerative disease of increasing disability is the underpinning truth, but is it or does it have to be the sum of it?
I’m glad your logo is highlighting self empowerment with the potential to reach the top of the ladder and hopefully remain there for some considerable time!
It looks great. Well done. I love your reasoning behind the ladder. Every day is different with MS. It brings challenges. It’s how you face these that matter.
I did not know that “Selfie” referred to Self Management. To me it means taking a picture of one’s self with a smart phone. So to be honest, I was always perplexed at the title “MS Selfie” and thought it was a bit “flakey”. I like the logo (without “Selfie”). I like the ladder and sitting on top of MS and what that implies. That makes sense. Perhaps putting Self Management in parenthesis somewhere? A lot of people already claim self-management of their MS, but here it’s kind of hard to avoid science, which I like very much. Maybe something underneath “where self management and science meet”. But you might scare off some people with that and initially do better with "self-management"...... Just thinking out loud. You know what they say, if it's not broken don't fix it.
Totally I live in Georgia MS for 17 years. no medicine for the last 10. Avonex for 5 trying natural food supplement thing.??!!;/) chefvld on ig xoxo Vic
I love the creativity, and the color purple. Glad there’s no wheelchair. (There I am, waving at the top of the ladder!!) For some reason when I first looked at it, I thought I saw a DNA structure, but that goes to show how whacked out my brain is now! Ha!!! Prof G, you have gone above and beyond for us, and it’s very much appreciated. Thank you.
I like the logo. My whole life has been the wonky ladder; I've had to do everything myself, even diagnose my MS. I do need more help, but my situation is infinitely better than it was before, so I can't complain.
As a patient of yours, I'm extremely grateful you let patients to email you. I do it as little as possible, but I am emailing you today. It helps that I can CC my MS nurse, who is good and will probably be the one who replies.
I'm just grateful for any help I get from you, and worried about what I'll do when you and my MS nurse retire. But I have a highly complex history with the NHS, so I'm very easy to please.
I think from experience that your patients could probably do with a little more support, rather than being expected to deal with things themselves. Especially helpful would be responding to your emails.
Sep 23, 2022·edited Sep 23, 2022Liked by Gavin Giovannoni
I think the whole point of this blog is to empower patients, to help them learn to self-advocate, to be very well informed, to self manage in powerful ways (self-management is a huge problem in healthcare, patients often don’t do nearly enough of this, as health is a partnership between patients and physicians, with patients having the largest and most significant role). This is the definition of teaching someone to fish rather than giving them the fish. Physicians are largely gatekeepers to medications, specific treatments, and referrals but pretty much everything else is on us.
I feel your comment, I really do—I’ve been frustrated by the care I’ve received, though in my case that care was plain incorrect which cost me time and brain. Physicians not having enough time to dedicate to patient questions though, is frankly the shortcoming of the systems in which we all have to function. One person cannot do it all, and just as we have to be careful of the expectations we place upon ourselves, we also have to be mindful of the expectations we place upon them, and if those expectations are realistic.
Responding to emails one by one (I’m speaking about after hours now) helps one person at one time. Posting here helps many, many people. Prof G is allowed to have a life outside of work, just as we are, and if he chooses to do this (help many) in his spare time, good on him and massive thanks for doing that.
I’m sorry you’re frustrated, perhaps the topic you want a response about may be covered here somewhere or on the MS blog? Or perhaps that topic can be covered in an upcoming post? Are there other supports at the clinic Professor G works at? I ask because at my clinic, there are MS nurses I can speak to, that help screen the questions for, and take the pressure off, the neuros. If there’s a question that only the neuro can answer, the nurses will ask them, acting as a go-between to help protect their time for the most urgent things. 9 times out of ten the questions they get asked they can answer without consulting the neuro, or it could have waited until the patient’s regular scheduled appointment(s). But in my clinic the nurses are there just in case something truly urgent comes up and they can help make sure it gets looked after in a timely way. Perhaps a call (as a patient) and a message mignt be better if your topic is urgent?
Thanks for your comments. I totally get how busy the Prof is. I understand that this is a voluntary thing that he is doing to try to help people. It's just very hard to see how much time he puts into blogging and replying to people who aren't his patients, when we have sent desperate emails asking for help due to rapidly deteriorating health and not received a response. The MS nurse doesn't respond any better. I'm not sure what the point of being referred to a consultant is if they don't have capacity to support you.
Sep 23, 2022·edited Sep 23, 2022Liked by Gavin Giovannoni
Are you starting out in your MS journey? Normally if it is time for a DMT switch the nurses will book me in ASAP.
I ask because I recall having a great sense of urgency at the beginning of my disease, before I learned more about what was going on. I learned that unfortunately, there’s not much that can be done once a relapse begins… my personal understanding (please correct me if any part of this is wrong) is that steroids have a biological cost (such as potential avascular necrosis of the major joints which require joint replacement), and they only shorten the duration of an attack, they don’t generally prevent damage. For this reason, they only prescribe them in certain cases, and I just have to wait out the relapse end. This is a hard thing for patients to accept. Switching DMTs mid attack is also not a good idea as having the immune system start responding to a new agent mid attack could be quite problematic.
I learned that I have to wait out a relapse, let the dust settle, and that there are specific interventions for specific things that can be done afterwards, and if I needed a DMT switch this was the time to do it (after the dust settles, so I don’t have what looks like a failure on the new DMT that might not actually be a failure). Also, it takes time for the inflammation and damage to settle and recede (if it is going to recede—most people get that receding, I was one of the unlucky ones who doesn’t but I have a malignant course of RRMS).
I remember being quite panicked about the damage that was happening at the time, hoping someone could stop it, but sadly that wasn’t the case. I remember thinking the nurses weren’t helpful, that no one was doing anything, but they just knew what I didn’t. In my case, they also needed to know about the relapses I was having to get me on an appropriate DMT, as we had an escalation approach back then.
If you think your case is truly urgent, and the nurses aren’t flagging you appropriately, perhaps phoning and booking an appointment is the right course, rather than email or a blog. You could also call and ask a nurse to phone you back when they can take some time with you to go over your concerns in detail. Then, I’d have some questions prepared for them so you can make the most of that time.
Edit: I’ll also add that most folks new to MS don’t understand the difference between a pseudo (false) relapse, and a real one. Pseudo relapses are super common and don’t do damage, they are a temporary worsening of symptoms usually triggered by an infection such as a UTI, exercise, fever or other factors… which is why in my clinic, no one seems a neuro without first performing UTI test to rule out infection and the nurses screen for pseudo-relapse. A large proportion of the time, newer MS patients get in a panic because they don’t understand there’s no stopping an in-progress relapse, that steroids are not a panacea (or sometimes even recommended), that DMTs are not (and probably should not) be switched in haste, or the difference between a pseudo (fake) relapse and a actual relapse.
Sep 23, 2022·edited Sep 23, 2022Liked by Gavin Giovannoni
Prof G, have you considered that a post on what I outlined above, coming from you, could potentially be very helpful? This is the time when patients are the most scared (understandably, as that’s what they’re supposed to be feeling, and that’s totally valid), but it is also when there’s the most potential for misunderstanding between a patient and their care team.
Knowing what to expect on and after first attack(s), when starting out on the MS journey, and how that care process should typically go… plus filling in any of the gaps in information that might help people to understand better and take some of the fear out, relax and follow the process, given this is the scariest time for folks. I’d be happy to provide feedback as I’m sure others would too. I’m sure the nurses would have a LOT to say about this too. Just a thought. Knowing the process means a lot to folks, since so much is already ambiguous at this time.
I like the design of the logo. Glad you left off the wheelchair and the rope. I don’t think that’s very applicable to everybody. I would definitely wear T-shirt with that logo on it a white T-shirt to show off the colors.! :-)
Vic in Ga MS since 2005
Vic! That’s a wonderful idea. It’s perfect for a T-shirt! :)
Thanks for the explanation - it helps to understand the design more explicitly.
Your reference to ‘got to grips with MS’ came to my mind a couple of days ago: I’m a short way into reading ‘The Expectation Effect’ by David Robson.
In the chapter on the nocebo response he says: ‘one study of mild traumatic brain injury, for example, found that measuring peoples initial beliefs about their future prognosis could successfully predict the risk of actually developing post-concussion syndrome in 80 per cent of cases. Indeed, the patients beliefs proved to be a better indicator of lingering distress than the severity of the patients symptoms at the time of impact. If you think that your symptoms will last a long time and are beyond your control, they are far more likely to stay that way, all other things being equal.’
How many more PwMS would be in better shape/progressing far more slowly, if the message you’re evidencing with this logo was provided far more universally?
Degenerative disease of increasing disability is the underpinning truth, but is it or does it have to be the sum of it?
I’m glad your logo is highlighting self empowerment with the potential to reach the top of the ladder and hopefully remain there for some considerable time!
It looks great. Well done. I love your reasoning behind the ladder. Every day is different with MS. It brings challenges. It’s how you face these that matter.
It’s about staying on top of your MS metaphorically, like the stick person is figuratively in the logo. Great work 😀👍
I did not know that “Selfie” referred to Self Management. To me it means taking a picture of one’s self with a smart phone. So to be honest, I was always perplexed at the title “MS Selfie” and thought it was a bit “flakey”. I like the logo (without “Selfie”). I like the ladder and sitting on top of MS and what that implies. That makes sense. Perhaps putting Self Management in parenthesis somewhere? A lot of people already claim self-management of their MS, but here it’s kind of hard to avoid science, which I like very much. Maybe something underneath “where self management and science meet”. But you might scare off some people with that and initially do better with "self-management"...... Just thinking out loud. You know what they say, if it's not broken don't fix it.
Totally I live in Georgia MS for 17 years. no medicine for the last 10. Avonex for 5 trying natural food supplement thing.??!!;/) chefvld on ig xoxo Vic
I love the creativity, and the color purple. Glad there’s no wheelchair. (There I am, waving at the top of the ladder!!) For some reason when I first looked at it, I thought I saw a DNA structure, but that goes to show how whacked out my brain is now! Ha!!! Prof G, you have gone above and beyond for us, and it’s very much appreciated. Thank you.
I like the logo. My whole life has been the wonky ladder; I've had to do everything myself, even diagnose my MS. I do need more help, but my situation is infinitely better than it was before, so I can't complain.
As a patient of yours, I'm extremely grateful you let patients to email you. I do it as little as possible, but I am emailing you today. It helps that I can CC my MS nurse, who is good and will probably be the one who replies.
I'm just grateful for any help I get from you, and worried about what I'll do when you and my MS nurse retire. But I have a highly complex history with the NHS, so I'm very easy to please.
I think from experience that your patients could probably do with a little more support, rather than being expected to deal with things themselves. Especially helpful would be responding to your emails.
I think the whole point of this blog is to empower patients, to help them learn to self-advocate, to be very well informed, to self manage in powerful ways (self-management is a huge problem in healthcare, patients often don’t do nearly enough of this, as health is a partnership between patients and physicians, with patients having the largest and most significant role). This is the definition of teaching someone to fish rather than giving them the fish. Physicians are largely gatekeepers to medications, specific treatments, and referrals but pretty much everything else is on us.
I feel your comment, I really do—I’ve been frustrated by the care I’ve received, though in my case that care was plain incorrect which cost me time and brain. Physicians not having enough time to dedicate to patient questions though, is frankly the shortcoming of the systems in which we all have to function. One person cannot do it all, and just as we have to be careful of the expectations we place upon ourselves, we also have to be mindful of the expectations we place upon them, and if those expectations are realistic.
Responding to emails one by one (I’m speaking about after hours now) helps one person at one time. Posting here helps many, many people. Prof G is allowed to have a life outside of work, just as we are, and if he chooses to do this (help many) in his spare time, good on him and massive thanks for doing that.
I’m sorry you’re frustrated, perhaps the topic you want a response about may be covered here somewhere or on the MS blog? Or perhaps that topic can be covered in an upcoming post? Are there other supports at the clinic Professor G works at? I ask because at my clinic, there are MS nurses I can speak to, that help screen the questions for, and take the pressure off, the neuros. If there’s a question that only the neuro can answer, the nurses will ask them, acting as a go-between to help protect their time for the most urgent things. 9 times out of ten the questions they get asked they can answer without consulting the neuro, or it could have waited until the patient’s regular scheduled appointment(s). But in my clinic the nurses are there just in case something truly urgent comes up and they can help make sure it gets looked after in a timely way. Perhaps a call (as a patient) and a message mignt be better if your topic is urgent?
Thanks for your comments. I totally get how busy the Prof is. I understand that this is a voluntary thing that he is doing to try to help people. It's just very hard to see how much time he puts into blogging and replying to people who aren't his patients, when we have sent desperate emails asking for help due to rapidly deteriorating health and not received a response. The MS nurse doesn't respond any better. I'm not sure what the point of being referred to a consultant is if they don't have capacity to support you.
Are you starting out in your MS journey? Normally if it is time for a DMT switch the nurses will book me in ASAP.
I ask because I recall having a great sense of urgency at the beginning of my disease, before I learned more about what was going on. I learned that unfortunately, there’s not much that can be done once a relapse begins… my personal understanding (please correct me if any part of this is wrong) is that steroids have a biological cost (such as potential avascular necrosis of the major joints which require joint replacement), and they only shorten the duration of an attack, they don’t generally prevent damage. For this reason, they only prescribe them in certain cases, and I just have to wait out the relapse end. This is a hard thing for patients to accept. Switching DMTs mid attack is also not a good idea as having the immune system start responding to a new agent mid attack could be quite problematic.
I learned that I have to wait out a relapse, let the dust settle, and that there are specific interventions for specific things that can be done afterwards, and if I needed a DMT switch this was the time to do it (after the dust settles, so I don’t have what looks like a failure on the new DMT that might not actually be a failure). Also, it takes time for the inflammation and damage to settle and recede (if it is going to recede—most people get that receding, I was one of the unlucky ones who doesn’t but I have a malignant course of RRMS).
I remember being quite panicked about the damage that was happening at the time, hoping someone could stop it, but sadly that wasn’t the case. I remember thinking the nurses weren’t helpful, that no one was doing anything, but they just knew what I didn’t. In my case, they also needed to know about the relapses I was having to get me on an appropriate DMT, as we had an escalation approach back then.
If you think your case is truly urgent, and the nurses aren’t flagging you appropriately, perhaps phoning and booking an appointment is the right course, rather than email or a blog. You could also call and ask a nurse to phone you back when they can take some time with you to go over your concerns in detail. Then, I’d have some questions prepared for them so you can make the most of that time.
Edit: I’ll also add that most folks new to MS don’t understand the difference between a pseudo (false) relapse, and a real one. Pseudo relapses are super common and don’t do damage, they are a temporary worsening of symptoms usually triggered by an infection such as a UTI, exercise, fever or other factors… which is why in my clinic, no one seems a neuro without first performing UTI test to rule out infection and the nurses screen for pseudo-relapse. A large proportion of the time, newer MS patients get in a panic because they don’t understand there’s no stopping an in-progress relapse, that steroids are not a panacea (or sometimes even recommended), that DMTs are not (and probably should not) be switched in haste, or the difference between a pseudo (fake) relapse and a actual relapse.
Prof G, have you considered that a post on what I outlined above, coming from you, could potentially be very helpful? This is the time when patients are the most scared (understandably, as that’s what they’re supposed to be feeling, and that’s totally valid), but it is also when there’s the most potential for misunderstanding between a patient and their care team.
Knowing what to expect on and after first attack(s), when starting out on the MS journey, and how that care process should typically go… plus filling in any of the gaps in information that might help people to understand better and take some of the fear out, relax and follow the process, given this is the scariest time for folks. I’d be happy to provide feedback as I’m sure others would too. I’m sure the nurses would have a LOT to say about this too. Just a thought. Knowing the process means a lot to folks, since so much is already ambiguous at this time.
https://gavingiovannoni.substack.com/p/the-perfect-storm#details