Do you agree with the perspective that discussing smouldering MS, and downplaying the importance of relapses and focal MRI, is harmful to patients and conveys a negative picture of MS?
As someone with PPMS/NEIDA, I'd like to know what possible explanation can your detractors offer for someone in my situation?
If not your "smouldering" theory, what is their hypothesis? I have an MS diagnosis, substantiated by MRI and LP and my symptoms are classic MS and worsening, measurably with each review. Am I (and everyone like me) to be tossed over the side as an inconvenient truth?
About the "conveying a negative picture of MS"-aspect (really?) and treating patients like children who just want to hear that all is going to be well:
I'm sick of being treated like that. I have a PhD in law, did years of interdisciplinary research and I'm now a public prosecutor. But when I'm at my neurologist, yes, I want to do kiddie talk because...?
I think a lot of neurologists prefer it that way because it's more comfortable for them, not for the patient.
So thank you, prof G, for treating pwms like adults who are interested in learning more about MS.
Disappointing to read of such denial of the evidence from some of your professional colleagues. Inviting us as patients to collude with their “everything’s fine” cotton wool over eyes approach is not a legitimate management strategy for a life changing chronic condition!
If only they could live inside my head for a while, they would soon change their minds! I have not had the 'typical' disease course and your explanation of smouldering MS is the only one that has ever made sense so please don't be disheartened by what we unfortunately experience regularly.
I was at an MS research meeting during the week where I asked a question about HSCT. I was met with a similar reaction from the neurologists on the panel, kept repeating about mortalities and how it was only suitable for the most extreme cases. Only one was aware of the STAR MS trial but wasn't aware that they could refer patients to it. Is it a lack of training, an unwillingness to change or just sheer arrogance? Why do we need to continually advocate for ourselves, I can't imagine it happens in other medical fields?
Your ideas, through your social media presence, have entered other doctors’ consulting rooms through their patients. My view is that other MS specialists, that don’t agree with you, are obligated to respond to you publicly, they, the patients and you, do not work in a vacuum. It’s not useful to dampen debate, especially if the doctors challenging orthodoxy are reputable, as you are. What use is it that they chastise you when you already have the ear of patients?
First off, please keep it up. I imagine that you are battling against significant, powerful forces in promoting these (helpful) views. The below is not criticism of you - a rare voice for moving things forward.
However, I am frustrated by the never-ending debating on MS. To ask a naive question - how do we still not know the facts on MS? How is it possible that neurologists disagree about the absolute fundamentals of this disease - like smouldering MS? There seems to be an awful lot of academic 'navel gazing', with still no agreed pathway forward.
For example, did you see George Ebers in Living Proof? He said that if he had MS, he would not take a DMT as, effectively, they're a waste of time and that the FDA has chosen to authorise medicines on criteria which do not include specified outcomes (EG disability improvements, moving towards cures). Ebers had a key role at a university hospital in the UK. So, is he wrong on DMTs but right on smouldering MS? Or is he wrong, or right, on both? How is this a matter of opinion - for us to decide? Thank you for being grown up enough to at least question whether the guy had a point. (I am on a DMT, so not here for a debate on this...).
I have read study after study - and the conclusion is always the same - 'we need more research.' There's rarely ever any practical advice action/output for patients.
Not only that, but why aren't we studying the role of blood in MS? We know HSCT is the most effective treatment - Why? Is it because it's tackling the root CAUSE of MS, not the symptoms...?!
Honestly, I am starting to disengage with it all - because experts don't know. Many seem too scared to ask the tough questions. They don't understand what it's like to have your whole life change with the click of your fingers.
My current thinking is - MS disease course is down to luck.
I’d love smouldering MS to be recognised by those managing us PWMS . I feel that after 20 years of dmts from the very first Betaferon injections through copaxone , Tecfidera and now Ocrevus I have simply had my medication managed , not my illness. A joined up approach for those starting out on this journey would really help with the debilitating, smouldering worsening that nobody seems interested in . It’s relapses or it’s back in your box until you have something worth noting .
I’ve upped my contribution level to founding - please keep talking Prof G and to as many as possible . One day it’ll get through. 🙏
It isn't acceptance of an idea like smouldering MS that makes a conversation negative...having MS *is* negative. Hearing that your MS is 'stable' when you know you are getting worse is no comfort, it just makes you feel bad as you feel you are either not believed, or that your HCP doesn't actually know what's going on.
We may have made significant progress (and are very grateful for this) but avoiding the reality that people face or dismissing it in favour of a more 'positive' framing of the disease doesn't help anyone...we know how we feel.
Thank you. Yes, please treat us as adults. Many of us have been gaslighted about our symptoms for decades pre diagnosis and it is literally traumatising to find that it continues after diagnosis too.
Keep going Prof G. I have MS and I want to hear explanations about why my MS is progressing, albeit slowly, despite an effective DMT and no change on MRI. I don’t know but I feel most people with MS would rather know the truth and I’m saddened that other professionals are uncomfortable with that.
Thank you Prof G for another opportunity to deepen our understanding of MS, and to hear about this paradigm shift in our knowledge. Thank you also for saying "things can always be done to improve MS outcomes and the quality of life of pwMS. " That is hugely empowering and reassuring for anyone battling with the condition. It should be at the top of the NICE guidelines!
It is the same old same old -experts of yesteryear refuse to accept new evidence that is right in front of them; from research, from clinical findings,from patient's experience.
When I read Prof G's evidence of smouldering MS I was so excited, and delighted. It explained perfectly what I had been trying ( fruitlessly ) to explain to my neurologist that the ongoing symptoms I was experiencing were real and his comments that 'well there is no change on your MRI ( that cannot measure brain volume etc) so ........ inference that nah i was not experiencing anything ....
Now I understand what is going on, thank you so much . And because I understand I can now manage it emotionally and reap the beneftis of self managing the lifestyle changes and interventions that help slow it down and improve it as best I can .
Thank goodness for your MS selfie and your resilinece and determination to lead the research and share teh information depsite such biased closed minds of others .
I really wish my neurologist had been more honest with me and not indicated that Lemtrada 'would stop your MS in its tracks'. In truth, I have had slow progression with worsening symptoms, and little support from my MS 'team', as I have had NEDA. I now don't bother contacting the MS nurses (even now when my annual app has been cancelled) as I can't deal with the lack of empathy, or the gaslighting ('your symptoms [that I was diagnosed with] are not usually associated with MS'). Physio support (after a 6 month wait) has been my saving grace, for which I am very grateful. Keep pushing against the established paradigm. And thank you.
I can nothing but to support you wholeheartedly and to wish your plenty of courage needed to introduce a new paradigm into a conservative world of neurologists. It took me juste a couple of months after my diagnosis 2 years ago to realise that something was wrong with how "the quest for a cure" was organised when MS was at stake. First, this sickness has been around for ages but there was little understanding of its underlying mechanisms (at least at the level of the official paradigm). It took only 30 years to understand and keep AIDS at bay or to be able to routinely cure certain cancers. Nothing like this for MS. Second, the overall message presented to us at diagnosis - keep your MRI free from new lesions and everything is gone be alright - is completely wrong. All MS seminar and conference papers outline the progress done to treat the inflammatory part (and nobody denies a leap done in the past years) but at the same time also underline the urgent need to treat progressive forms (many people who started Ocrevus as a part of the trial 10 years ago turned nevertheless into SPMS). But before one can find the treatment one has to understand where the problem is. So basically by putting forward your theory you invite the scientific community to fill the existing gap of understanding and treating progressive forms. And it does not contradict the progress done on the inflammatory part. PS The theory of marginal gains is my super guide and I hope to have positive results in future. I was refused the participation in an information seminar on cognitive and urinary issues by a local MS nurse who told me that I was newly diagnosed and I would need this info in 10-20 years only:) while I think that on the contrary we have to be give all info available as early as possible. Also, I was just told to do sport and only understood the scientific background of this advice thanks to one of your presentations. So, thanks again and keep going!
As someone with PPMS/NEIDA, I'd like to know what possible explanation can your detractors offer for someone in my situation?
If not your "smouldering" theory, what is their hypothesis? I have an MS diagnosis, substantiated by MRI and LP and my symptoms are classic MS and worsening, measurably with each review. Am I (and everyone like me) to be tossed over the side as an inconvenient truth?
P.S. Where can I buy a pitchfork?
About the "conveying a negative picture of MS"-aspect (really?) and treating patients like children who just want to hear that all is going to be well:
I'm sick of being treated like that. I have a PhD in law, did years of interdisciplinary research and I'm now a public prosecutor. But when I'm at my neurologist, yes, I want to do kiddie talk because...?
I think a lot of neurologists prefer it that way because it's more comfortable for them, not for the patient.
So thank you, prof G, for treating pwms like adults who are interested in learning more about MS.
Disappointing to read of such denial of the evidence from some of your professional colleagues. Inviting us as patients to collude with their “everything’s fine” cotton wool over eyes approach is not a legitimate management strategy for a life changing chronic condition!
If only they could live inside my head for a while, they would soon change their minds! I have not had the 'typical' disease course and your explanation of smouldering MS is the only one that has ever made sense so please don't be disheartened by what we unfortunately experience regularly.
I was at an MS research meeting during the week where I asked a question about HSCT. I was met with a similar reaction from the neurologists on the panel, kept repeating about mortalities and how it was only suitable for the most extreme cases. Only one was aware of the STAR MS trial but wasn't aware that they could refer patients to it. Is it a lack of training, an unwillingness to change or just sheer arrogance? Why do we need to continually advocate for ourselves, I can't imagine it happens in other medical fields?
As the saying goes, you can lead a horse to water …
Keep up the good work Prof G.
Your ideas, through your social media presence, have entered other doctors’ consulting rooms through their patients. My view is that other MS specialists, that don’t agree with you, are obligated to respond to you publicly, they, the patients and you, do not work in a vacuum. It’s not useful to dampen debate, especially if the doctors challenging orthodoxy are reputable, as you are. What use is it that they chastise you when you already have the ear of patients?
First off, please keep it up. I imagine that you are battling against significant, powerful forces in promoting these (helpful) views. The below is not criticism of you - a rare voice for moving things forward.
However, I am frustrated by the never-ending debating on MS. To ask a naive question - how do we still not know the facts on MS? How is it possible that neurologists disagree about the absolute fundamentals of this disease - like smouldering MS? There seems to be an awful lot of academic 'navel gazing', with still no agreed pathway forward.
For example, did you see George Ebers in Living Proof? He said that if he had MS, he would not take a DMT as, effectively, they're a waste of time and that the FDA has chosen to authorise medicines on criteria which do not include specified outcomes (EG disability improvements, moving towards cures). Ebers had a key role at a university hospital in the UK. So, is he wrong on DMTs but right on smouldering MS? Or is he wrong, or right, on both? How is this a matter of opinion - for us to decide? Thank you for being grown up enough to at least question whether the guy had a point. (I am on a DMT, so not here for a debate on this...).
I have read study after study - and the conclusion is always the same - 'we need more research.' There's rarely ever any practical advice action/output for patients.
Not only that, but why aren't we studying the role of blood in MS? We know HSCT is the most effective treatment - Why? Is it because it's tackling the root CAUSE of MS, not the symptoms...?!
Honestly, I am starting to disengage with it all - because experts don't know. Many seem too scared to ask the tough questions. They don't understand what it's like to have your whole life change with the click of your fingers.
My current thinking is - MS disease course is down to luck.
I’d love smouldering MS to be recognised by those managing us PWMS . I feel that after 20 years of dmts from the very first Betaferon injections through copaxone , Tecfidera and now Ocrevus I have simply had my medication managed , not my illness. A joined up approach for those starting out on this journey would really help with the debilitating, smouldering worsening that nobody seems interested in . It’s relapses or it’s back in your box until you have something worth noting .
I’ve upped my contribution level to founding - please keep talking Prof G and to as many as possible . One day it’ll get through. 🙏
It isn't acceptance of an idea like smouldering MS that makes a conversation negative...having MS *is* negative. Hearing that your MS is 'stable' when you know you are getting worse is no comfort, it just makes you feel bad as you feel you are either not believed, or that your HCP doesn't actually know what's going on.
We may have made significant progress (and are very grateful for this) but avoiding the reality that people face or dismissing it in favour of a more 'positive' framing of the disease doesn't help anyone...we know how we feel.
Thank you. Yes, please treat us as adults. Many of us have been gaslighted about our symptoms for decades pre diagnosis and it is literally traumatising to find that it continues after diagnosis too.
Keep going Prof G. I have MS and I want to hear explanations about why my MS is progressing, albeit slowly, despite an effective DMT and no change on MRI. I don’t know but I feel most people with MS would rather know the truth and I’m saddened that other professionals are uncomfortable with that.
Thank you Prof G for another opportunity to deepen our understanding of MS, and to hear about this paradigm shift in our knowledge. Thank you also for saying "things can always be done to improve MS outcomes and the quality of life of pwMS. " That is hugely empowering and reassuring for anyone battling with the condition. It should be at the top of the NICE guidelines!
Hi there,
It is the same old same old -experts of yesteryear refuse to accept new evidence that is right in front of them; from research, from clinical findings,from patient's experience.
When I read Prof G's evidence of smouldering MS I was so excited, and delighted. It explained perfectly what I had been trying ( fruitlessly ) to explain to my neurologist that the ongoing symptoms I was experiencing were real and his comments that 'well there is no change on your MRI ( that cannot measure brain volume etc) so ........ inference that nah i was not experiencing anything ....
Now I understand what is going on, thank you so much . And because I understand I can now manage it emotionally and reap the beneftis of self managing the lifestyle changes and interventions that help slow it down and improve it as best I can .
Thank goodness for your MS selfie and your resilinece and determination to lead the research and share teh information depsite such biased closed minds of others .
I really wish my neurologist had been more honest with me and not indicated that Lemtrada 'would stop your MS in its tracks'. In truth, I have had slow progression with worsening symptoms, and little support from my MS 'team', as I have had NEDA. I now don't bother contacting the MS nurses (even now when my annual app has been cancelled) as I can't deal with the lack of empathy, or the gaslighting ('your symptoms [that I was diagnosed with] are not usually associated with MS'). Physio support (after a 6 month wait) has been my saving grace, for which I am very grateful. Keep pushing against the established paradigm. And thank you.
Thank you for all that you do, follow your passion and ignore all the noise!
I can nothing but to support you wholeheartedly and to wish your plenty of courage needed to introduce a new paradigm into a conservative world of neurologists. It took me juste a couple of months after my diagnosis 2 years ago to realise that something was wrong with how "the quest for a cure" was organised when MS was at stake. First, this sickness has been around for ages but there was little understanding of its underlying mechanisms (at least at the level of the official paradigm). It took only 30 years to understand and keep AIDS at bay or to be able to routinely cure certain cancers. Nothing like this for MS. Second, the overall message presented to us at diagnosis - keep your MRI free from new lesions and everything is gone be alright - is completely wrong. All MS seminar and conference papers outline the progress done to treat the inflammatory part (and nobody denies a leap done in the past years) but at the same time also underline the urgent need to treat progressive forms (many people who started Ocrevus as a part of the trial 10 years ago turned nevertheless into SPMS). But before one can find the treatment one has to understand where the problem is. So basically by putting forward your theory you invite the scientific community to fill the existing gap of understanding and treating progressive forms. And it does not contradict the progress done on the inflammatory part. PS The theory of marginal gains is my super guide and I hope to have positive results in future. I was refused the participation in an information seminar on cognitive and urinary issues by a local MS nurse who told me that I was newly diagnosed and I would need this info in 10-20 years only:) while I think that on the contrary we have to be give all info available as early as possible. Also, I was just told to do sport and only understood the scientific background of this advice thanks to one of your presentations. So, thanks again and keep going!