Prof G is very frustrated that we have created unrealistic expectations for people with more advanced MS, yet we are not prepared to treat early MS more aggressively. Is it time for him to bow out?
This post surprises me. My family’s current (this month) situation is testament to what can happen when you repeat yourself, seemingly into the ether, with no outward positive developments. We have armed ourselves, using this site, entered the consultation room, and gently requested your ideas are implemented. We have been successful.
You will know, I am sure, ideas do not disappear if voiced, they have a habit of quietly circulating, growing, impacting, often quietly if they are outside the Overton window. If people stop voicing heretical ideas they die. I am in no doubt you know this already. Your patients hold out hope against the odds, as you will, I am sure.
Please don't give up. You are one of the only people I know speaking any sense on MS. I have always felt the establishment haven't a clue and are happy to shout about all the drugs that don't work that well.
Actually, you are the only person worth listening to. You accept the realities with a much more open mind than most. I've had diagnosed MS since 1994 and your approach is far superior to the twaddle and nonsense that many others espouse. Too many of your contemporaries talk in absolutes and time shows them up. When I was diagnosed, I was told to go away and wait for the next attack. Then I was told interferon was the gold standard. When I was hospitalised in 2014 I was asked what medication I wanted- what a clueless question! Since then the number of options for treatment has exploded but many don't make sense to me, whilst EBV does. It's always darkest before the dawn and you don't create false impressions. I am very critical of the role that physiotherapists play. I'm also very critical of the gaslighting from many neurologists. Your words create the frame of reference that I use to compare others. Don't take step back. You are appreciated.
Hi Andrew, same timeframe here. Wasn’t that interferon the gold standard?? I’m now too old for anything, but I’m NEID, and just fine! (Kidding!) Be as well as you can.🌷
I was told in 2013 to go away and wait for the next relapse. So a year later I had that relapse, and on contacting my then neurologist, she dropped me by letter, without seeing me or checking what was happening. It took another 6 months to a different neurologist, who asked what DMT I was on? None as I was told to go away and wait for the next attack.
There is a crowd of us behind you, banging our head against that same brick wall. You are at least, accessible online to us which believe me, makes a big difference.
Please don’t give up. I have learnt more about MS from your posts since I started following you over 18months ago. You provide hopeful but honest and real information and I do not know how I could have navigated the MS landscape without you.
You are tired and frustrated. Please take a good holiday somewhere peaceful and don’t be in contact with anyone except those you love. You need this to stay sane and strong. You cannot cure the world and you cannot take responsibility for everything .
When you are refreshed, come back .
You are amazing and your work is of inestimable value!
You're my neurologist, Prof G, and I very much hope you don't retire. As an autistic person who has PTSD from what the NHS did to me, I at least find you tolerable 🤷 And far more approachable and less stuffy than most people in your position. I moved to East London to be under you because it meant I could get Alemtuzumab. My first neurologist said you're the best MS neurologist in the country. That you're a rockstar - to neurologists...
But I don't have the option of giving up on MS because it's frustrating. Believe me, I would if I could. I had MS since I was a child and spent literal decades with the NHS telling me I was making it up, was mentally ill, had Chronic Fafigue Syndrone... All to save themselves a couple of hundred quid on an MRI scan. Believe me, my expectations of HCP's helping me couldn't possibly be any lower.
I'm, in effect, a time traveller living out what having MS was like centuries ago. I need a treatment that will undo the damage done by decades of undiagnosed, untreated, highly active, RRMS. That will undo 'significant cerebral atrophy'. That's the only treatment that matters to me. So, until that is invented, and available in my lifetime to someone in my socioeconomic position, don't tell me that MS is 'cured'. 🤕
Jun 20, 2023·edited Jun 20, 2023Liked by Gavin Giovannoni
I wouldn’t necessarily say the community doesn’t want a cure or to use IRT. I think the term “cure” is strong.
For me cure means, zero progression. Period. Not 15 years of remission and then activity (which has happened to those on lemtrada, aHSCT) a cure is anyone going on those treatments and MS being stopped. Done
I would use the term “long term remission” when discussing IRTs potential vs the rest
I also personally think that pre Covid I would’ve gone to an IRT (instead of Tysabri) but the risks of an ongoing pandemic (this was pre vaccines) and mid 2020 made it a tough prospect not knowing what to expect
Lastly, there are significant risks with IRTs that might make the cure argument tougher. Infertility, additional autoimmune diseases- these aren’t light or easy “side affects”. It’s like taking your car to a repair shop and then fixing it but your tyres are flat forever, sure you can drive but you have to deal with something else. Yes other DMTs also have potential side affects too.
I have learned a lot from this blog especially the role of ebv and potential treatments. The next stage of MS needs to be halting MS altogether and then IMO solving our symptoms/remylination
What’s the point of no more MS if a pwMS still can’t walk or get their function back.
I pray you don't, you have been a voice of sanity and hope for our family and many others who have been affected by MS. There is growing number of patients who are educating themselves, who are asking the hard questions of their doctors (asking for the most effective treatments first) who are pushing to be included on trials, who are tracking different treatments and what they do and don't do. The change has been excruciatingly slow though so from one of the families who are affected we feel first hand your frustration, the difference is we don't have the option of bowing out.
Prof G, I haven't always been a fan - I remember your not being in favour of HSCT when I was first investigating that as a treatment for my PPMS, and I was fed-up of negative neurologists! However, you have been big and honest enough to change your mind about this - very few are - so I urge you to continue speaking out. It makes a difference to very many, hearing from a professional rather than a patient, that HSCT is a valid and successful treatment.
Anyway, I'm sure you'll be pleased to hear that I have been in remission (no progression of PPMS) for nine years since I had successful HSCT - wonderful, because I was deteriorating fast beforehand. Keep on keeping on! Thank you.
I was RRMS until I asked about HSCT. Because the NHS hadn’t taken MRIs for years, they then decided to take one to compare with the one 15 years prior and then decided I was SPMS. Wish I’d taken myself off to Mexico then.
Hello Ross! I had HSCT at the Pirogov Hospital in Moscow in 2014 - non-myeloablative protocol. Currently more difficult to get there, because of the war in Ukraine, but I would also happily have HSCT in Clinica Ruiz in Puebla, Mexico which has a similar protocol to the one I had.
Please don’t go! Almost all my MS knowledge comes from you. I have no neurologist and haven’t had since December 2021. My GP referred me to a well-known centre of excellence but they declined the referral. I need you at least to keep writing informative blogs.
As I've mentioned before your common sense approach and giving people with MS some hope through self management is so important to the MS community. Sadly this cruel condition has so many unknowns still but I genuinely feel more informed by your input, thank you, you are appreciated.
“Prof G is very frustrated that we have created unrealistic expectations for people with more advanced MS”. You need to live with MS (or Parkinson’s) to really understand what frustration is. Get out now while you’re still healthy. MS has been good for you - long career, international travel, bit of extra income from working for pharma companies. I think you got the balance wrong - clinical v academic (too much focus on the latter). Not enough risk taking re therapies / trials to test anti ebv agents. You were much more establishment than a maverick outsider. Enjoy your retirement. Do something totally different eg sail round the world. Neurological disease / neurology are the pits.
I entirely disagree with this. Prof G could have a VERY lucrative private practice but chooses not to. And we need Drs in academic medicine along side clinical practice to drive both sides. It’s a unique and incredibly challenging arena to work in and I suspect has come at great personal cost to Prof G. The MS community would be way behind without him imho and we should be thankful and supportive of him. Equally Prof G your own health matters too and if it’s time to step back then do so with our thanks and gratitude. Having been a burnt out HCP myself it’s a truly miserable place to be.
This post surprises me. My family’s current (this month) situation is testament to what can happen when you repeat yourself, seemingly into the ether, with no outward positive developments. We have armed ourselves, using this site, entered the consultation room, and gently requested your ideas are implemented. We have been successful.
You will know, I am sure, ideas do not disappear if voiced, they have a habit of quietly circulating, growing, impacting, often quietly if they are outside the Overton window. If people stop voicing heretical ideas they die. I am in no doubt you know this already. Your patients hold out hope against the odds, as you will, I am sure.
Please don't give up. You are one of the only people I know speaking any sense on MS. I have always felt the establishment haven't a clue and are happy to shout about all the drugs that don't work that well.
Actually, you are the only person worth listening to. You accept the realities with a much more open mind than most. I've had diagnosed MS since 1994 and your approach is far superior to the twaddle and nonsense that many others espouse. Too many of your contemporaries talk in absolutes and time shows them up. When I was diagnosed, I was told to go away and wait for the next attack. Then I was told interferon was the gold standard. When I was hospitalised in 2014 I was asked what medication I wanted- what a clueless question! Since then the number of options for treatment has exploded but many don't make sense to me, whilst EBV does. It's always darkest before the dawn and you don't create false impressions. I am very critical of the role that physiotherapists play. I'm also very critical of the gaslighting from many neurologists. Your words create the frame of reference that I use to compare others. Don't take step back. You are appreciated.
Hi Andrew, same timeframe here. Wasn’t that interferon the gold standard?? I’m now too old for anything, but I’m NEID, and just fine! (Kidding!) Be as well as you can.🌷
I was told in 2013 to go away and wait for the next relapse. So a year later I had that relapse, and on contacting my then neurologist, she dropped me by letter, without seeing me or checking what was happening. It took another 6 months to a different neurologist, who asked what DMT I was on? None as I was told to go away and wait for the next attack.
DON’T GIVE UP PROF.
There is a crowd of us behind you, banging our head against that same brick wall. You are at least, accessible online to us which believe me, makes a big difference.
Please don’t give up. I have learnt more about MS from your posts since I started following you over 18months ago. You provide hopeful but honest and real information and I do not know how I could have navigated the MS landscape without you.
You are tired and frustrated. Please take a good holiday somewhere peaceful and don’t be in contact with anyone except those you love. You need this to stay sane and strong. You cannot cure the world and you cannot take responsibility for everything .
When you are refreshed, come back .
You are amazing and your work is of inestimable value!
You're my neurologist, Prof G, and I very much hope you don't retire. As an autistic person who has PTSD from what the NHS did to me, I at least find you tolerable 🤷 And far more approachable and less stuffy than most people in your position. I moved to East London to be under you because it meant I could get Alemtuzumab. My first neurologist said you're the best MS neurologist in the country. That you're a rockstar - to neurologists...
But I don't have the option of giving up on MS because it's frustrating. Believe me, I would if I could. I had MS since I was a child and spent literal decades with the NHS telling me I was making it up, was mentally ill, had Chronic Fafigue Syndrone... All to save themselves a couple of hundred quid on an MRI scan. Believe me, my expectations of HCP's helping me couldn't possibly be any lower.
I'm, in effect, a time traveller living out what having MS was like centuries ago. I need a treatment that will undo the damage done by decades of undiagnosed, untreated, highly active, RRMS. That will undo 'significant cerebral atrophy'. That's the only treatment that matters to me. So, until that is invented, and available in my lifetime to someone in my socioeconomic position, don't tell me that MS is 'cured'. 🤕
This post is so sad 😢keep going Unnameable🤗.
I wouldn’t necessarily say the community doesn’t want a cure or to use IRT. I think the term “cure” is strong.
For me cure means, zero progression. Period. Not 15 years of remission and then activity (which has happened to those on lemtrada, aHSCT) a cure is anyone going on those treatments and MS being stopped. Done
I would use the term “long term remission” when discussing IRTs potential vs the rest
I also personally think that pre Covid I would’ve gone to an IRT (instead of Tysabri) but the risks of an ongoing pandemic (this was pre vaccines) and mid 2020 made it a tough prospect not knowing what to expect
Lastly, there are significant risks with IRTs that might make the cure argument tougher. Infertility, additional autoimmune diseases- these aren’t light or easy “side affects”. It’s like taking your car to a repair shop and then fixing it but your tyres are flat forever, sure you can drive but you have to deal with something else. Yes other DMTs also have potential side affects too.
I have learned a lot from this blog especially the role of ebv and potential treatments. The next stage of MS needs to be halting MS altogether and then IMO solving our symptoms/remylination
What’s the point of no more MS if a pwMS still can’t walk or get their function back.
Just my 2c
I pray you don't, you have been a voice of sanity and hope for our family and many others who have been affected by MS. There is growing number of patients who are educating themselves, who are asking the hard questions of their doctors (asking for the most effective treatments first) who are pushing to be included on trials, who are tracking different treatments and what they do and don't do. The change has been excruciatingly slow though so from one of the families who are affected we feel first hand your frustration, the difference is we don't have the option of bowing out.
Prof G, I haven't always been a fan - I remember your not being in favour of HSCT when I was first investigating that as a treatment for my PPMS, and I was fed-up of negative neurologists! However, you have been big and honest enough to change your mind about this - very few are - so I urge you to continue speaking out. It makes a difference to very many, hearing from a professional rather than a patient, that HSCT is a valid and successful treatment.
Anyway, I'm sure you'll be pleased to hear that I have been in remission (no progression of PPMS) for nine years since I had successful HSCT - wonderful, because I was deteriorating fast beforehand. Keep on keeping on! Thank you.
Love your story. So great that HSCT helped you. We hear that it doesnt help in PPMS but it helped you. Cool!
HSCT works for 70% of PPMSers! 🙂 That's a slightly lower rate than for RRMS, but still currently the most successful treatment option.
I was RRMS until I asked about HSCT. Because the NHS hadn’t taken MRIs for years, they then decided to take one to compare with the one 15 years prior and then decided I was SPMS. Wish I’d taken myself off to Mexico then.
Where was the HSCT done and what protocol? Happy to hear about your remission!
Hello Ross! I had HSCT at the Pirogov Hospital in Moscow in 2014 - non-myeloablative protocol. Currently more difficult to get there, because of the war in Ukraine, but I would also happily have HSCT in Clinica Ruiz in Puebla, Mexico which has a similar protocol to the one I had.
You are the last person that should hang up the glove! Thank you for fighting in our corner and striving to educate us!
The reason for disappointment seems to be a over reliance on medical advances. It is easy to relinquish all power but makes the PwMS a sitting duck.
Please all check in with yourselves and note if you are doing everything in your power to make your life as you want it!
Prof G, if you would like to retire and enjoy life please do so with a big well deserved party not the feeling you give up!
I am very grateful for your honest information! Xx
Please don’t hang up your gloves Proff G, there’s still plenty your input will do. Without you we all lose!
You are hugely important and are valued so much Proff.
Please don’t give up on us. Having more insight into what to expect (even if it’s bad news) is so helpful in deciding how to manage my life.
Please don’t go! Almost all my MS knowledge comes from you. I have no neurologist and haven’t had since December 2021. My GP referred me to a well-known centre of excellence but they declined the referral. I need you at least to keep writing informative blogs.
Hi Prof G,
Don't give up with your fight please 🙏
As I've mentioned before your common sense approach and giving people with MS some hope through self management is so important to the MS community. Sadly this cruel condition has so many unknowns still but I genuinely feel more informed by your input, thank you, you are appreciated.
Keep up your good work.
Karen
“Prof G is very frustrated that we have created unrealistic expectations for people with more advanced MS”. You need to live with MS (or Parkinson’s) to really understand what frustration is. Get out now while you’re still healthy. MS has been good for you - long career, international travel, bit of extra income from working for pharma companies. I think you got the balance wrong - clinical v academic (too much focus on the latter). Not enough risk taking re therapies / trials to test anti ebv agents. You were much more establishment than a maverick outsider. Enjoy your retirement. Do something totally different eg sail round the world. Neurological disease / neurology are the pits.
I entirely disagree with this. Prof G could have a VERY lucrative private practice but chooses not to. And we need Drs in academic medicine along side clinical practice to drive both sides. It’s a unique and incredibly challenging arena to work in and I suspect has come at great personal cost to Prof G. The MS community would be way behind without him imho and we should be thankful and supportive of him. Equally Prof G your own health matters too and if it’s time to step back then do so with our thanks and gratitude. Having been a burnt out HCP myself it’s a truly miserable place to be.
Agree. Prof G is the 'good guy' here! I hope he doesn't leave - he's the only one I've seen who actually DOES get that it's a sh!t illness.
Reverse psychology?
I disagree with you, Ian. No dr can do everything we want but he’s helping far more than most. But of course, Prof G, stay well xx