Not too ambitious, but idealistic. In the face of a crumbling NHS which is the British system we have all grown up with, your objectives look pretty distant right now. However it is dreamers who change things ultimately. Ambition must outfox the status quo. You want much more than the system can give currently, but that's the only way forward. I've always been an activist (CND as a schoolgirl, Greenham Common as an adult, climate justice now). Everyone tells you, from your parents down, "That's pointless. Why do you bother? Don't go on that demo. You're just embarrassing your friends and family." But change does happen. It takes dreamers and activists to be uncomfortable, do things that embarrass your peers, say things people find difficult to hear and eventually, incrementally, things do start to shift. Like tectonic plates, they often give but it's usually after much 'jostling'.
It has happened in your community. you're talking about "pockets of neurologists" still using escalation and wait-and-watch strategies. But now, many neurologists are more likely to start treating with higher efficacy meds earlier. How long has that taken to change? Looking back; a few years? a decade or so? Looking forward it seems to be so slow when you're trying to change something everyone knows is bad, but doesn't want to face inconvenience to change. The ozone layer is closing at long last because we did something about it and dumped CFCs. The strategies you want to see implemented won't happen overnight, but maybe eventually there will be more effective interventions and the SDsofH will be addressed. Sdsof H are often best addressed at community level. We shouldn't need food banks and warm hubs but it's the people at local level that are setting them up. While councils close leisure centres, people are setting up centres where people can get warm, fed and active. That gives me hope. Our warm hub does grub, activities and even has a string quartet rehearsing weekly. I'm down there once a week when I don't have to take family to medical appointments and I help at a garden in another town where people with anxiety and poor health can meet. What you want to see happen takes huge resources that don't seem to exist right now, but without your determination they won't happen. Plenty more people like you and your colleagues are needed and maybe you'll see these objectives some time, if not soon.,
I love this format. Thank you again for sharing this information with us.
As I smoulder away, I wonder what the chances of being prescribed antivirals and statins are now in England? They would seem to be a very good option for SPMSers who are addressing exercise, HRT, non smoking, intermittent fasting practices etc themselves but can't get hold of the drugs.
Thanks for this presentation. The holistic self-management approach really chimes with me, so despite not bring eligible for DMT, I am reassured by messages re HRT, HIT and fasting. Await future anti-EBV Rx and, for future generations EBV immunisation.
Your opinion on SC vs IV anti-CD20 DMDs (Ocrelizumab). Could SC be potentially better bc gets better in lymph nodes? Or is it just "commercial" move to lower cost.
interesting newsletter. You had touched heavily on this in the last newsletter.. the causation of MS because of EBV infection.. My biggest question is this, is there a test to see one has had EBV in the past? I do not remember ever having had it in the past. There was a study published last year thru one of the Harvard Schools saying the exact same thing about the link between EBV and MS. Also if EBV is absolutely necessary to Dx of MS, is there anything to treat the EBV exclusively? I mean some of these DMTs are scary as hell and it seems if there is something to effectively treat the underlying cause, that might be a better route of attack, no? But the test to prove infection or not, is there such a thing? I have been dx'd with MS since 2015 now but I had one neurologist recently who said he was not convinced that I had MS? This test might help figure me out.. thanks
Thanks for this excellent sharing. Two questions/suggestions please
1 About you getting interest and education around Attack MS.
Do you know about the “what your patient is thinking” series in the BMJ? They only rarely accept group articles - but might I suggest involving a new new Patient (to advertise Attack trial) and a much further on patient (eg 60s as below). For me, the clue is in the name of multiple sclerosis – it affects multiple parts of the body , in multiple ways, for different individuals. But lots of both clinicians and non-clinicians have Stereotyped views. It’s sposed to be led by a patient but you could try initiating via patients you know?
2. The highest prevalence for ms in uk occurs in 60-69 yrs age group. We (I’m 60 this year) are likely to have other comorbidities. And we’ve had ms for many years. I’m guessing drug companies not interested in us. So who’s going to lead something which might produce something evidence based ? You were talking about different approaches - why not Co-production- really led by services users / charities. Though that’d need some funding.
Thank you for this update! Much appreciated. It's easier for me to read things, watching is a struggle so it took me a while to get through it.
I particularly found the part about the connection, or rather lack of connection, between MRI activity and worsening disability intesting. I really struggle with understanding it, and the fact that no one really knows how it works is comforting. What I do know, is that all I care about is feeling better, and MRI activity doesn't coincide with when I feel worse.
I try to do everything I can for my brain health, though it's a daily struggle. And I stopped taking Promethazine (anticholinergic). The only things you list that I need to work on are exercise and diet. I'm as active as I can be, but with my dizziness, nausea, exhaustion, pain, and lack of sensation, anything fast and energetic will be hard. Why is it you consider HIIT best?
Thank you for explaining why PWMS should do the keto diet. I'm going to give it a try, but it's going to be tough with my symptoms. It's also going to be hard to get enough fibre. And I'm a vegetarian. Any advice? From Prof G or other PWMS.
Thanks this is great and touches on a lot of things I've been thinking about/observing
Re rehabilitation - it sounds so obvious that it might help, and seems negligent not to offer as a suggestuion at the least if not help and support. Do you know of the MSGym? I'd be interested in your view of the programmes within.
Also interested i bthe energy/microglia aspects - amazingly after sitting on the sofa munching chocs after Christmas (not my usual activity) I found I could make my way upstairs with ease. It's so difficult to pin down what it might be that helped, if ther's somethng nnotable like that. I think it has something to do with being well nourished, in the short term - oer the copurse of the day or evening.
Thank you for this presentation Prof G. As always hugely informative.. Please consider me for all and any trials. Despite doing a lot of what you propose to manage MS I continue to deteriorate pretty quickly. As an otherwise very healthy 43 year old I'm not ready to accept this and I'll give most things a go. In addition to my meds, I do all the fasting, HIIT, sleeping, working etc that I can fit in and who knows where I'd be if I didn't focus so much on all of these 'holistic mgt therapies) but I know I need something else too - is this a BTKi, a simvastatin, metformin, HSTC.. I hope one of these is offered soon. Thanks again.
I was diagnosed with RRMS a year ago having had a bout of ON, first in my left and then right eye. MRI with contrast revealed many lesions though I've not had any other obvious symptoms, though I am in a perennial state of terror following each twinge I experience. I am 34. I am now taking Ocrevus and am at one of the top centres in the UK. I adhere to the Wahls protocol (haven't a clue if it is effective) and am HIIT-ing and exercising 7 days a week in the pursuit of accumulating enough marginal gains that I can stave off accelerated decline and look like/remain a healthy person.
I have been reading your blog for the last year and am very grateful for the information, though it places me in a compromising position for the following reasons:
1) Your EBV hypothesis is very convincing but it leaves me wondering how effective Ocrevus in fact is given it most significantly combats focal inflammation and not the smouldering disease, that is the underlying immune response to EBV (albeit I understand its effectiveness may be that it penetrates to the CNS). Should I be worried about the future given I am on Ocrevus despite the assurances I've received?
2) Following this, it seems, of the available treatments, you are less interested in Ocrevus but would recommend Lemtrada or HCST as a first line treatment to address MS and the potential impact of EBV. Given I am in the UK, how can one push their providers to give them either since the guidelines are so restrictive? Or are am I misunderstanding and you approve of Ocrevus?
3) Your blogs are incredibly informative but given this aforementioned powerlessness, how do you suggest one reads what you are saying without being thrown into a state of despair? This isn't an accusatory question, I mean it in an instructive sense: should I read what you are saying as speculative? Alternatively, If it is a call to arms, how do you suggest people put pressure on HCPs without costing their mental health, tackling a seemingly byzantine and intractable NHS?
4) Given everything I've said, do you have any causes for hope for the recently diagnosed who are on high efficacy treatments like Ocrevus, given the current treatment landscape and results soon to come?
Thank you for your time and all your work. And good luck all who are reading this thread.
This was a wonderful format with an incredible amount of information. I’m sure I’m not the sole person with MS who was on interferon beta and was never taken off until “Good news! You’ve plateaued!” They have the worst outcome :( These trials and observations are exciting, particularly the HIV patients with antiretrovirals. I am on a statin at my age and Valtrex. I appreciate the holistic approach, but I truly don’t see anything happening here in the states other than the absolute minimum at best. Unfortunately. I really appreciate your time and effort to get this information and data to us and explain it in a manner we can grasp. Stay well, Dr G!
Not too ambitious, but idealistic. In the face of a crumbling NHS which is the British system we have all grown up with, your objectives look pretty distant right now. However it is dreamers who change things ultimately. Ambition must outfox the status quo. You want much more than the system can give currently, but that's the only way forward. I've always been an activist (CND as a schoolgirl, Greenham Common as an adult, climate justice now). Everyone tells you, from your parents down, "That's pointless. Why do you bother? Don't go on that demo. You're just embarrassing your friends and family." But change does happen. It takes dreamers and activists to be uncomfortable, do things that embarrass your peers, say things people find difficult to hear and eventually, incrementally, things do start to shift. Like tectonic plates, they often give but it's usually after much 'jostling'.
It has happened in your community. you're talking about "pockets of neurologists" still using escalation and wait-and-watch strategies. But now, many neurologists are more likely to start treating with higher efficacy meds earlier. How long has that taken to change? Looking back; a few years? a decade or so? Looking forward it seems to be so slow when you're trying to change something everyone knows is bad, but doesn't want to face inconvenience to change. The ozone layer is closing at long last because we did something about it and dumped CFCs. The strategies you want to see implemented won't happen overnight, but maybe eventually there will be more effective interventions and the SDsofH will be addressed. Sdsof H are often best addressed at community level. We shouldn't need food banks and warm hubs but it's the people at local level that are setting them up. While councils close leisure centres, people are setting up centres where people can get warm, fed and active. That gives me hope. Our warm hub does grub, activities and even has a string quartet rehearsing weekly. I'm down there once a week when I don't have to take family to medical appointments and I help at a garden in another town where people with anxiety and poor health can meet. What you want to see happen takes huge resources that don't seem to exist right now, but without your determination they won't happen. Plenty more people like you and your colleagues are needed and maybe you'll see these objectives some time, if not soon.,
I love this format. Thank you again for sharing this information with us.
As I smoulder away, I wonder what the chances of being prescribed antivirals and statins are now in England? They would seem to be a very good option for SPMSers who are addressing exercise, HRT, non smoking, intermittent fasting practices etc themselves but can't get hold of the drugs.
You mentioned people getting off anticholinergic drugs and not being prescribed them, why is that?
Does that class of drugs include Amitriptyline, cymbalta, or gabbapentin?
If so what other options are there to help with day to day symptoms (Eg for me it’s my hands with altered sensation and cramps)
I have question:
1. Why isnt mavenclad an option for spms but siponimod is?
Thanks for this presentation. The holistic self-management approach really chimes with me, so despite not bring eligible for DMT, I am reassured by messages re HRT, HIT and fasting. Await future anti-EBV Rx and, for future generations EBV immunisation.
Your opinion on SC vs IV anti-CD20 DMDs (Ocrelizumab). Could SC be potentially better bc gets better in lymph nodes? Or is it just "commercial" move to lower cost.
interesting newsletter. You had touched heavily on this in the last newsletter.. the causation of MS because of EBV infection.. My biggest question is this, is there a test to see one has had EBV in the past? I do not remember ever having had it in the past. There was a study published last year thru one of the Harvard Schools saying the exact same thing about the link between EBV and MS. Also if EBV is absolutely necessary to Dx of MS, is there anything to treat the EBV exclusively? I mean some of these DMTs are scary as hell and it seems if there is something to effectively treat the underlying cause, that might be a better route of attack, no? But the test to prove infection or not, is there such a thing? I have been dx'd with MS since 2015 now but I had one neurologist recently who said he was not convinced that I had MS? This test might help figure me out.. thanks
Thanks for this excellent sharing. Two questions/suggestions please
1 About you getting interest and education around Attack MS.
Do you know about the “what your patient is thinking” series in the BMJ? They only rarely accept group articles - but might I suggest involving a new new Patient (to advertise Attack trial) and a much further on patient (eg 60s as below). For me, the clue is in the name of multiple sclerosis – it affects multiple parts of the body , in multiple ways, for different individuals. But lots of both clinicians and non-clinicians have Stereotyped views. It’s sposed to be led by a patient but you could try initiating via patients you know?
2. The highest prevalence for ms in uk occurs in 60-69 yrs age group. We (I’m 60 this year) are likely to have other comorbidities. And we’ve had ms for many years. I’m guessing drug companies not interested in us. So who’s going to lead something which might produce something evidence based ? You were talking about different approaches - why not Co-production- really led by services users / charities. Though that’d need some funding.
Thanks and Best wishes
--
Thank you for this update! Much appreciated. It's easier for me to read things, watching is a struggle so it took me a while to get through it.
I particularly found the part about the connection, or rather lack of connection, between MRI activity and worsening disability intesting. I really struggle with understanding it, and the fact that no one really knows how it works is comforting. What I do know, is that all I care about is feeling better, and MRI activity doesn't coincide with when I feel worse.
I try to do everything I can for my brain health, though it's a daily struggle. And I stopped taking Promethazine (anticholinergic). The only things you list that I need to work on are exercise and diet. I'm as active as I can be, but with my dizziness, nausea, exhaustion, pain, and lack of sensation, anything fast and energetic will be hard. Why is it you consider HIIT best?
Thank you for explaining why PWMS should do the keto diet. I'm going to give it a try, but it's going to be tough with my symptoms. It's also going to be hard to get enough fibre. And I'm a vegetarian. Any advice? From Prof G or other PWMS.
I'd be in most trials, and just started 2.
Thanks again!
Thanks this is great and touches on a lot of things I've been thinking about/observing
Re rehabilitation - it sounds so obvious that it might help, and seems negligent not to offer as a suggestuion at the least if not help and support. Do you know of the MSGym? I'd be interested in your view of the programmes within.
Also interested i bthe energy/microglia aspects - amazingly after sitting on the sofa munching chocs after Christmas (not my usual activity) I found I could make my way upstairs with ease. It's so difficult to pin down what it might be that helped, if ther's somethng nnotable like that. I think it has something to do with being well nourished, in the short term - oer the copurse of the day or evening.
Any thoughts I'd be delighted to hear
Thanks a million as always
Thank you for this presentation Prof G. As always hugely informative.. Please consider me for all and any trials. Despite doing a lot of what you propose to manage MS I continue to deteriorate pretty quickly. As an otherwise very healthy 43 year old I'm not ready to accept this and I'll give most things a go. In addition to my meds, I do all the fasting, HIIT, sleeping, working etc that I can fit in and who knows where I'd be if I didn't focus so much on all of these 'holistic mgt therapies) but I know I need something else too - is this a BTKi, a simvastatin, metformin, HSTC.. I hope one of these is offered soon. Thanks again.
After listening, If we have to pick a place to start think we should investigate Tenofovir for MS
https://www.pnas.org/doi/10.1073/pnas.2002392117
Thank you for all your amazing information. I watched your YouTube twice and I’m going to watch it again to make sure I don’t mis anything.
It is as if you are, single handed, trying to turn the MS tanker around.
Do you think People with MS could benefit from the ZOE health study?
Tim Spector and Sarah Berry
https://www.instagram.com/tv/CnkWrWEp3kt/?igshid=YmMyMTA2M2Y=
Very excellent. Thank you.
Hello --
I was diagnosed with RRMS a year ago having had a bout of ON, first in my left and then right eye. MRI with contrast revealed many lesions though I've not had any other obvious symptoms, though I am in a perennial state of terror following each twinge I experience. I am 34. I am now taking Ocrevus and am at one of the top centres in the UK. I adhere to the Wahls protocol (haven't a clue if it is effective) and am HIIT-ing and exercising 7 days a week in the pursuit of accumulating enough marginal gains that I can stave off accelerated decline and look like/remain a healthy person.
I have been reading your blog for the last year and am very grateful for the information, though it places me in a compromising position for the following reasons:
1) Your EBV hypothesis is very convincing but it leaves me wondering how effective Ocrevus in fact is given it most significantly combats focal inflammation and not the smouldering disease, that is the underlying immune response to EBV (albeit I understand its effectiveness may be that it penetrates to the CNS). Should I be worried about the future given I am on Ocrevus despite the assurances I've received?
2) Following this, it seems, of the available treatments, you are less interested in Ocrevus but would recommend Lemtrada or HCST as a first line treatment to address MS and the potential impact of EBV. Given I am in the UK, how can one push their providers to give them either since the guidelines are so restrictive? Or are am I misunderstanding and you approve of Ocrevus?
3) Your blogs are incredibly informative but given this aforementioned powerlessness, how do you suggest one reads what you are saying without being thrown into a state of despair? This isn't an accusatory question, I mean it in an instructive sense: should I read what you are saying as speculative? Alternatively, If it is a call to arms, how do you suggest people put pressure on HCPs without costing their mental health, tackling a seemingly byzantine and intractable NHS?
4) Given everything I've said, do you have any causes for hope for the recently diagnosed who are on high efficacy treatments like Ocrevus, given the current treatment landscape and results soon to come?
Thank you for your time and all your work. And good luck all who are reading this thread.
This was a wonderful format with an incredible amount of information. I’m sure I’m not the sole person with MS who was on interferon beta and was never taken off until “Good news! You’ve plateaued!” They have the worst outcome :( These trials and observations are exciting, particularly the HIV patients with antiretrovirals. I am on a statin at my age and Valtrex. I appreciate the holistic approach, but I truly don’t see anything happening here in the states other than the absolute minimum at best. Unfortunately. I really appreciate your time and effort to get this information and data to us and explain it in a manner we can grasp. Stay well, Dr G!