A:Epstein-Barr virus (EBV) is a common virus that infects most people at some point in their lives. While EBV is not considered to be the direct cause of multiple sclerosis (MS), research suggests that it may play a role in the development of the disease.
MS is a chronic autoimmune disorder that affects the central nervous system (CNS). The immune system mistakenly attacks and damages the myelin, a protective layer surrounding the nerves in the CNS. This damage can lead to symptoms such as muscle weakness, difficulty with coordination and balance, and problems with vision.
Studies have shown that people with MS are more likely to have been infected with EBV, and that having a history of EBV infection may increase the risk of developing MS. However, it is not clear whether EBV infection directly causes MS or if it is simply a risk factor for the disease.
It is important to note that while EBV infection may be a risk factor for MS, it is not the only factor. Other factors, such as genetics and environmental triggers, may also play a role in the development of the disease.
I've just spend a few minutes trying to find out how ChatGPT "learns" its facts and there is not much information. The technological breakthrough is the ability to communicate "naturally", i.e. understand questions and generate understandable answers, not actually to be factually correct. I guess you are probably imagining a version that's actually trained on relevant material and would stay up to date.
Although personally I find that some of the biggest hurdles in disseminating MS information is that the the big "societies" like the National MS Society in the US don't share information until it's like 5 years old and has become canonical, which is not taking advantage of ongoing research. In my experience, I can spend all day trying to find information on the big society websites, and going "oh well I guess there's no solution" only to have my neurologist tell me the simple, existing solution when I ask her. I also like the newsletters from the Accelerated Cure Project for offering information and solutions that the MS Society doesn't https://www.acceleratedcure.org/newsletters-2022
You are doing Amazing things and must ensure that it is not at too great a cost to yourself: you are entirely right about the EBV link. Just focus on that and ignore the rest. X
PLEASE GOD NO. MS patients have little enough support as it is without being forced to chat with bots which probably won't even have the answers they're looking for.
Also, "Is the expression of TSPO affected by sex?" asked no patient ever.
It’s certainly true that many doctors “don’t believe” what patients say about their symptoms
But I’d like to suggest a more fundamental approach, rather than calling it ‘gaslighting’. Specifically I would like you to consider how doctors and patients think and speak in such different ways.
I was a doctor for over 30 years and have ignored my (its not now) “benign” MS for nearly the same amount of time - I’m only speaking here from my personal experience. On both ‘sides’ of the fence.
Traditionally, Neurology Involved some “tricks” of examination - eliciting for example, clonus or a more or less brisk reflex - and then some fancy Nomenclature. eg oscillopsia
In contrast, Patients experience something Strange right inside and through themselves. Something we don’t immediately have a single name for. Doctors might label this eg foot drop. But what it feels like is a disconcerting shift in what your body has always naturally done . Suddenly your ankle is drooping down and you fall over the top of your foot as you try to walk. It feels like a fundamental abdication of your bodies responsibility to behave like you expect it to, like it has always done.
This is, to say the least, disconcerting
You can either start paying massive attention to what’s happening or - especially when it gets 'better' - ignore it.
People around you either treat you the same when you know you’re different or treat you very differently when youre sure that your fundamentally the same person inside. You may lose your career, your job, your income, your mobility, your sexlife, your continence, your identity.
With MS, of course, even if there are remissions, then bad things keep happening
So a Doctor who does an examination looking for the usual Tricks or listens to a teeny tiny fraction of what’s going on in this persons head about this persons alien body can’t have any significant idea of what’s going on.
Your personal experiences of post viral fatigue might have given you a glimpse of fatigue.
But not of the ever changing nature of much MS fatigue - the hopes, and how it feels when they get dashed. all the striving and desperation
Now, MS neurology involves MRIs and theories about ganglions and EBV. It’s as day-to-day unhelpful (in practice) as all that fancy nomenclature always was.
The doctors aren’t ignoring what the patients say out of nastiness or due to lack of time. Although there is some of that about.
The young doctors are excited about eliciting signs and making diagnoses - and think they can 'make a difference'. The older ones have seen (most of it) before. They have a got a good idea - in their incomplete way of seeing “their” patients - of the best, worst, and most likely way things are going to go on.
I don’t think the answer to this is education education education.
Of course there’s some value in education. But there needs to be much clearer thought about the best ways of listening and hearing. Linked to the personal priorities of the patient.
I think that some more attention to prognosis giving, and to bereavement (of career, income, mobility etc) could be really good too.
Heres hoping your fatigue fades! maybe think about pacing (and how difficult and boring that is)?
Sorry to see you've caught flu over the festive period Prof G, that's not great for you.
Give yourself some time to refocus for 2023 as we enter a new year.
I still like the idea of there being a link between EBV and MS, I mentioned this to a GP after my RRMS diagnosis but I couldn't prove the link with my muddled MS brain back then but I'm always hopeful it could explain why my MS crept up on me without me realising there was something wrong, I still don't know why I didn't see MS on the horizon in 2014 but I've got the MRI scans to prove it and I live with my MS on a daily basis and thank my DMD Tysabri for getting my MS stabilised since 2014, fingers crossed I'll keep testing JCV- on my 6 monthly blood tests, I'll need to check with my MS service when my next one is due because I'm on 6 weekly infusions following one JCV + blood test result in 2016 on a low titre level but even so as I enter my 9th year since my diagnosis this year in August it's always a background worry that I'll need to move to a different DMD, fingers crossed I'll have a much better year when I hit my 50th birthday this year than the year I was diagnosed at 40 coming to 41. It's a bit of a blank but I was too unwell to realise what had hit me then.
Onwards and upwards for 2023, with volunteering as an ESOL Teaching Assistant and a wee bit with the MS Trust too, fingers crossed you get somewhere with the Epstein Barr and MS correlation and people with MS can be supported to self manage their own MS with their HCP's support too.
Happy New Year and wishing you well for 2023, keep up your good work, it's appreciated 👍.
Thanks Prof G for keeping the MS flag flying. I suppose in the MS world I want to say you’re something of a rarity, willing to chop, change and challenge along the way where MS is concerned. For me as an individual patient I think 2023 is where I too will chop, change and challenge along the way. The biggest thing that I have learnt on this MS journey is you are your own advocate and yes, you can chat, choose and challenge professionals along the way but my ultimate question is do all these people I see whose job is to hopefully help me along the way do they really want me to get better? If I and fellow MS ers were better, even cured etc what would your job look like ? Or is this a journey where I have to take the lead and I am hopeful/ adamant that I do but carrying a label of a MS I do feel that everybody is lumped all together as one depending on the label that they have been given. I hope 2023 for MS ers😀 is that they are looked at as individuals and they are dealt with as individuals and are shown the way to combat and use MS to their advantage, rather than being shown a downward decline of the illness. Here’s to 2023 and all my MS friends, neurologists and health experts I’ve met along the way. I live life on my mobility scooter and yes I am on holiday in Pakistan 🇵🇰 from the UK 🇬🇧 because my MS challenges me and life is for living and I choose to live life. 😊God Bless us All. 😊🤗
Firstly warmest good wishes to Prof. G for 2023 and thank you for keeping us all informed and sane over the past year.
Secondly, please spend more time kissing your saintly wife, smelling the roses and not trying to be all things to all people. We all appreciate you but would rather have you alive for a few more years and not a burnt out husk. Be kind to yourself.
Thirdly, I agree with many others, we will get used to more technology . but currently most ' bots' drive me crazy . Time is wasted and blood pressure rises. Somehow we have to continue with the human touch and empathetic response. A bot won't make me feel better the way a kind human hand will.
I am extremely grateful that you're highlighting medical gaslighting, or gross medical negligence as I call it. I do want to point out though, as the victim of decades of medical gaslighting; an AI chatbot wouldn't have helped me. I told GP's I had MS & other conditions; they refused to refer me due to their own prejudices. All that would have helped is if GP's had to give referrals when asked, or if one could self-refer to neurology, etc.
I diagnosed my MS & other conditions from the vast amount of information already available online. I'll keep accessing that information the same way I do already, from its sources. But the system is designed so that I have to access HCP's for referrals, prescriptions, and letters of support to apply for things, etc.
Having paid for the right diagnoses has totally changed my life, but I only get to see a neurologist once a year and email a helpful MS nurse. Unfortunately, I know through bitter experience that I always have to do my own research and diagnosing. But, beyond that, I'm reliant on HCP's for the things I'm not allowed to do myself. DMT's, Modafinil, referrals, etc. The thought of having even less access is scary.
There is nothing that that chatbot can do for those of us that are cog impaired.
And there is nothing that bot can do for us for those that still have some brain left because we all have our trusted sources already.
How could a chatbot explain to a patient that they're better off in someone's professional oppinion with tysabri rather than mavenclad, as an example.
Or in my case for example - 5 relapses during covid, finally diagnosed 2 years ago. I was 3.10 jcv before my first ever infusion so I'm thinking about switching to mavenclad - i asked my ms nurse, she said: "people with active lives are usually better sticking with tysabri". So i translated that as "since you have a toddler you're better off with tysabri because ppl on mavenclad are ill all the time".
Also i could tell from body language that their oppinion is that I'm lucky tysabri worked so well and they'd be reluctant to change it. They haven't said anything, but i can tell.
You just cant replace people with ai.
If this was viable they would have replaced 111 with an ai - one and most receptionists lol
Though part of me wonders if anyone will actually still have a job in 5 years :S
The human touch - the loss of which I find distressing. Over the festive period I found I was repeatedly struck by the thought of you and your MS nurse calling those who would be isolated to wish them Merry Christmas. This feels so removed from the reality for the rest of us, whereby contact with HCPs is minimal, focussed on clinical areas and never, ever on us as individuals!
So sorry ProfG I can’t get excited about A1 chatbots, because as much as I like to be a well informed PwMS I’d also like far more meaningful relationships with my HCPs and not a six monthly call from a MS nurse I’ve not even met in person.
Your Christmas call is so amazing, but definitely struck a nerve (‘cuse the pun!)
I’m on the fence with this one as I’ve had to do just this and learn about MS by asking Google questions and reading endless articles online.
When the neuro diagnosed me 15 months ago, he told me the MS nurse is my first point of contact for everything, she unhelpfully told me to go online; ring a charity; join a support group etc.
I’ve only had 1 short phone convo with both since dx but really I feel I’ve been left to flounder.
Had they been able to point me towards a “trusted bot” then all info would be in 1 place so could’ve proven less confusing for a new patient like me.
That being said I can confirm this was not a comfortable experience and I wouldn’t recommend others to do the same.
There simply isn’t the resource or time to provide the much needed patient care and support and this bot can’t replace that.
Firstly warmest good wishes to Prof. G for 2023 and thank you for keeping us all informed and sane over the past year.
Secondly, please spend more time kissing your saintly wife, smelling the roses and not trying to be all things to all people. We all appreciate you but would rather have you alive for a few more years and not a burnt out husk. Be kind to yourself.
Thirdly, I agree with many others, we will get used to more technology . but currently most ' bots' drive me crazy . Time is wasted and blood pressure rises. Somehow we have to continue with the human touch and empathetic response. A bot won't make me feel better the way a kind human hand will.
Another example from ChatGPT:
Q: Does EBV cause multiple sclerosis?
A:Epstein-Barr virus (EBV) is a common virus that infects most people at some point in their lives. While EBV is not considered to be the direct cause of multiple sclerosis (MS), research suggests that it may play a role in the development of the disease.
MS is a chronic autoimmune disorder that affects the central nervous system (CNS). The immune system mistakenly attacks and damages the myelin, a protective layer surrounding the nerves in the CNS. This damage can lead to symptoms such as muscle weakness, difficulty with coordination and balance, and problems with vision.
Studies have shown that people with MS are more likely to have been infected with EBV, and that having a history of EBV infection may increase the risk of developing MS. However, it is not clear whether EBV infection directly causes MS or if it is simply a risk factor for the disease.
It is important to note that while EBV infection may be a risk factor for MS, it is not the only factor. Other factors, such as genetics and environmental triggers, may also play a role in the development of the disease.
CLEARLY IT IS NOT THAT AHEAD OF THE CURVE ;-)
I've just spend a few minutes trying to find out how ChatGPT "learns" its facts and there is not much information. The technological breakthrough is the ability to communicate "naturally", i.e. understand questions and generate understandable answers, not actually to be factually correct. I guess you are probably imagining a version that's actually trained on relevant material and would stay up to date.
Although personally I find that some of the biggest hurdles in disseminating MS information is that the the big "societies" like the National MS Society in the US don't share information until it's like 5 years old and has become canonical, which is not taking advantage of ongoing research. In my experience, I can spend all day trying to find information on the big society websites, and going "oh well I guess there's no solution" only to have my neurologist tell me the simple, existing solution when I ask her. I also like the newsletters from the Accelerated Cure Project for offering information and solutions that the MS Society doesn't https://www.acceleratedcure.org/newsletters-2022
ChatGPT "learns" its facts from the internet it uses AI to build a picture of what is important and what is not important and comes up with a summary.
You are doing Amazing things and must ensure that it is not at too great a cost to yourself: you are entirely right about the EBV link. Just focus on that and ignore the rest. X
PLEASE GOD NO. MS patients have little enough support as it is without being forced to chat with bots which probably won't even have the answers they're looking for.
Also, "Is the expression of TSPO affected by sex?" asked no patient ever.
I looked down to your survey on gaslighting.
It’s certainly true that many doctors “don’t believe” what patients say about their symptoms
But I’d like to suggest a more fundamental approach, rather than calling it ‘gaslighting’. Specifically I would like you to consider how doctors and patients think and speak in such different ways.
I was a doctor for over 30 years and have ignored my (its not now) “benign” MS for nearly the same amount of time - I’m only speaking here from my personal experience. On both ‘sides’ of the fence.
Traditionally, Neurology Involved some “tricks” of examination - eliciting for example, clonus or a more or less brisk reflex - and then some fancy Nomenclature. eg oscillopsia
In contrast, Patients experience something Strange right inside and through themselves. Something we don’t immediately have a single name for. Doctors might label this eg foot drop. But what it feels like is a disconcerting shift in what your body has always naturally done . Suddenly your ankle is drooping down and you fall over the top of your foot as you try to walk. It feels like a fundamental abdication of your bodies responsibility to behave like you expect it to, like it has always done.
This is, to say the least, disconcerting
You can either start paying massive attention to what’s happening or - especially when it gets 'better' - ignore it.
People around you either treat you the same when you know you’re different or treat you very differently when youre sure that your fundamentally the same person inside. You may lose your career, your job, your income, your mobility, your sexlife, your continence, your identity.
With MS, of course, even if there are remissions, then bad things keep happening
So a Doctor who does an examination looking for the usual Tricks or listens to a teeny tiny fraction of what’s going on in this persons head about this persons alien body can’t have any significant idea of what’s going on.
Your personal experiences of post viral fatigue might have given you a glimpse of fatigue.
But not of the ever changing nature of much MS fatigue - the hopes, and how it feels when they get dashed. all the striving and desperation
Now, MS neurology involves MRIs and theories about ganglions and EBV. It’s as day-to-day unhelpful (in practice) as all that fancy nomenclature always was.
The doctors aren’t ignoring what the patients say out of nastiness or due to lack of time. Although there is some of that about.
The young doctors are excited about eliciting signs and making diagnoses - and think they can 'make a difference'. The older ones have seen (most of it) before. They have a got a good idea - in their incomplete way of seeing “their” patients - of the best, worst, and most likely way things are going to go on.
I don’t think the answer to this is education education education.
Of course there’s some value in education. But there needs to be much clearer thought about the best ways of listening and hearing. Linked to the personal priorities of the patient.
I think that some more attention to prognosis giving, and to bereavement (of career, income, mobility etc) could be really good too.
Heres hoping your fatigue fades! maybe think about pacing (and how difficult and boring that is)?
caroline.mawer@gmail.com
Happy New Year to you and yours.
Hope you are feeling better.
Sorry to see you've caught flu over the festive period Prof G, that's not great for you.
Give yourself some time to refocus for 2023 as we enter a new year.
I still like the idea of there being a link between EBV and MS, I mentioned this to a GP after my RRMS diagnosis but I couldn't prove the link with my muddled MS brain back then but I'm always hopeful it could explain why my MS crept up on me without me realising there was something wrong, I still don't know why I didn't see MS on the horizon in 2014 but I've got the MRI scans to prove it and I live with my MS on a daily basis and thank my DMD Tysabri for getting my MS stabilised since 2014, fingers crossed I'll keep testing JCV- on my 6 monthly blood tests, I'll need to check with my MS service when my next one is due because I'm on 6 weekly infusions following one JCV + blood test result in 2016 on a low titre level but even so as I enter my 9th year since my diagnosis this year in August it's always a background worry that I'll need to move to a different DMD, fingers crossed I'll have a much better year when I hit my 50th birthday this year than the year I was diagnosed at 40 coming to 41. It's a bit of a blank but I was too unwell to realise what had hit me then.
Onwards and upwards for 2023, with volunteering as an ESOL Teaching Assistant and a wee bit with the MS Trust too, fingers crossed you get somewhere with the Epstein Barr and MS correlation and people with MS can be supported to self manage their own MS with their HCP's support too.
Happy New Year and wishing you well for 2023, keep up your good work, it's appreciated 👍.
Karen x
Thanks Prof G for keeping the MS flag flying. I suppose in the MS world I want to say you’re something of a rarity, willing to chop, change and challenge along the way where MS is concerned. For me as an individual patient I think 2023 is where I too will chop, change and challenge along the way. The biggest thing that I have learnt on this MS journey is you are your own advocate and yes, you can chat, choose and challenge professionals along the way but my ultimate question is do all these people I see whose job is to hopefully help me along the way do they really want me to get better? If I and fellow MS ers were better, even cured etc what would your job look like ? Or is this a journey where I have to take the lead and I am hopeful/ adamant that I do but carrying a label of a MS I do feel that everybody is lumped all together as one depending on the label that they have been given. I hope 2023 for MS ers😀 is that they are looked at as individuals and they are dealt with as individuals and are shown the way to combat and use MS to their advantage, rather than being shown a downward decline of the illness. Here’s to 2023 and all my MS friends, neurologists and health experts I’ve met along the way. I live life on my mobility scooter and yes I am on holiday in Pakistan 🇵🇰 from the UK 🇬🇧 because my MS challenges me and life is for living and I choose to live life. 😊God Bless us All. 😊🤗
Firstly warmest good wishes to Prof. G for 2023 and thank you for keeping us all informed and sane over the past year.
Secondly, please spend more time kissing your saintly wife, smelling the roses and not trying to be all things to all people. We all appreciate you but would rather have you alive for a few more years and not a burnt out husk. Be kind to yourself.
Thirdly, I agree with many others, we will get used to more technology . but currently most ' bots' drive me crazy . Time is wasted and blood pressure rises. Somehow we have to continue with the human touch and empathetic response. A bot won't make me feel better the way a kind human hand will.
Happy new year Prof G & everyone reading!
I am extremely grateful that you're highlighting medical gaslighting, or gross medical negligence as I call it. I do want to point out though, as the victim of decades of medical gaslighting; an AI chatbot wouldn't have helped me. I told GP's I had MS & other conditions; they refused to refer me due to their own prejudices. All that would have helped is if GP's had to give referrals when asked, or if one could self-refer to neurology, etc.
I diagnosed my MS & other conditions from the vast amount of information already available online. I'll keep accessing that information the same way I do already, from its sources. But the system is designed so that I have to access HCP's for referrals, prescriptions, and letters of support to apply for things, etc.
Having paid for the right diagnoses has totally changed my life, but I only get to see a neurologist once a year and email a helpful MS nurse. Unfortunately, I know through bitter experience that I always have to do my own research and diagnosing. But, beyond that, I'm reliant on HCP's for the things I'm not allowed to do myself. DMT's, Modafinil, referrals, etc. The thought of having even less access is scary.
There is nothing that that chatbot can do for those of us that are cog impaired.
And there is nothing that bot can do for us for those that still have some brain left because we all have our trusted sources already.
How could a chatbot explain to a patient that they're better off in someone's professional oppinion with tysabri rather than mavenclad, as an example.
Or in my case for example - 5 relapses during covid, finally diagnosed 2 years ago. I was 3.10 jcv before my first ever infusion so I'm thinking about switching to mavenclad - i asked my ms nurse, she said: "people with active lives are usually better sticking with tysabri". So i translated that as "since you have a toddler you're better off with tysabri because ppl on mavenclad are ill all the time".
Also i could tell from body language that their oppinion is that I'm lucky tysabri worked so well and they'd be reluctant to change it. They haven't said anything, but i can tell.
You just cant replace people with ai.
If this was viable they would have replaced 111 with an ai - one and most receptionists lol
Though part of me wonders if anyone will actually still have a job in 5 years :S
The human touch - the loss of which I find distressing. Over the festive period I found I was repeatedly struck by the thought of you and your MS nurse calling those who would be isolated to wish them Merry Christmas. This feels so removed from the reality for the rest of us, whereby contact with HCPs is minimal, focussed on clinical areas and never, ever on us as individuals!
So sorry ProfG I can’t get excited about A1 chatbots, because as much as I like to be a well informed PwMS I’d also like far more meaningful relationships with my HCPs and not a six monthly call from a MS nurse I’ve not even met in person.
Your Christmas call is so amazing, but definitely struck a nerve (‘cuse the pun!)
I’m on the fence with this one as I’ve had to do just this and learn about MS by asking Google questions and reading endless articles online.
When the neuro diagnosed me 15 months ago, he told me the MS nurse is my first point of contact for everything, she unhelpfully told me to go online; ring a charity; join a support group etc.
I’ve only had 1 short phone convo with both since dx but really I feel I’ve been left to flounder.
Had they been able to point me towards a “trusted bot” then all info would be in 1 place so could’ve proven less confusing for a new patient like me.
That being said I can confirm this was not a comfortable experience and I wouldn’t recommend others to do the same.
There simply isn’t the resource or time to provide the much needed patient care and support and this bot can’t replace that.
Happy New Year to you too, and thanks for all you do.
Firstly warmest good wishes to Prof. G for 2023 and thank you for keeping us all informed and sane over the past year.
Secondly, please spend more time kissing your saintly wife, smelling the roses and not trying to be all things to all people. We all appreciate you but would rather have you alive for a few more years and not a burnt out husk. Be kind to yourself.
Thirdly, I agree with many others, we will get used to more technology . but currently most ' bots' drive me crazy . Time is wasted and blood pressure rises. Somehow we have to continue with the human touch and empathetic response. A bot won't make me feel better the way a kind human hand will.
Lovely, optimistic poem. You have had a pretty bad year health wise so I hope this year is better. Your optimism and positivity are inspiring