As the UK celebrates Queen Elizabeth II's platinum jubilee it is worthwhile reflecting on what would have been if the Queen had been diagnosed with multiple sclerosis in 1952.
“illustrates to me why we need to celebrate the progress we have made in the field of MS over the last 70 years. Do you agree?” Are there drugs to stop the underlying neurodegeneration / progression? Are there drugs which stimulate repair of a brain / spinal cord damaged by MS? I’d be surprised if anyone diagnosed with PPMS today would share your view on the progress made. My 57 year old friend (diagnosed 2005) operates her electric wheelchair with one finger and relies on multiple carers (her husband walked out ten years ago). She’s got nothing to celebrate. My GP visits a local care home where there are two women with MS who are in their mid to late 30s. No careers, no family life, no future…. even my GP gets choked up when she mentions them. They won’t be the only cases in the country. Piggy backing on the Jubilee is an odd way of trying to show the progress made in the field of MS. Progress in the MS field has been slow and patchy, with the main work (stopping progression, encouraging repair) still to do - no reason to wave the flags or let off any fireworks. In 1952 no one knew the trigger cause / trigger of MS. In 2022 (70 years later) a paper pointed the finger at ebv. Although even you admit that you don’t know how ebv is involved (another recent paper came up with 10+ possible ways ebv may trigger / drive MS). More research required! Maybe in ten years time (BTK inhibitors, anti-virals targeting ebv, remyelination therapies) the world of neurology can reassess the progress made in treating MS. Compared to the progress made in other fields eg cancer, neurology is at the back of the queue. Don’t get me started on MND ((family friend) or Huntington’s (colleague’s wife).
She would never have had to contend with undignified applications for PIP and other state support in lieu of lost salary.
She would never have had to make painful decisions on whether to leave the house uncleaned or try to find and afford a cleaner.
She would have been able to continue enjoying her pets and livestock knowing that there’s a domestic machinery to keep everything running regardless of her own presence, interest or ability.
Forgive my bitterness but she has always lived in outrageous privilege and to see such widespread public servility this weekend has felt rather embarrassing. I’m glad she’s never had to contend with the nastiness of MS, but if she had, she would’ve endured it in unimaginable comfort and material security.
Perhaps I am one of the unlucky ones but my prognosis is not too different from if I’d been diagnosed in 1952. It is worth pointing out that even wonder treatments such as alemtuzamab have an efficacy of 70-80percent leaving 20-30 percent of us no better off. That’s what I think of the back patting.
I appreciate the attempt to highlight progress. I take issue with the part about Norway finding that MS patients lose "only 3 years" of life compared to healthy controls. When I think about how drugs are approved for cancer and the costs justified for "only 6 months" prolonged life of a cancer patient, 3 years seems like a very long time to live- or not. The adverb "only" is what caught my eye. In the past I have read that MS shortens a life span by 7-8 years. In comparison, 3 years is an improvement, but not a comfort to a MSer.
Perhaps a gentle warning of content on some of your posts would be appropriate, especially for those of us with untreated SPMS - you really didn't get my day off to a great start ........
My grandmother would have been the same age as the Queen. She was diagnosed with MS before I was born and as a small child I can remember her getting down on the floor to play with me (around the time of the silver jubilee). She died when I was 18 from sepsis related to bed sores. I've already been diagnosed 21 years (symptoms much longer) and I am still mobile with a stick. I don't nod off mid sentence, choke on food (on my own saliva though), need a SP catheter (all the things she needed for her last 5 years or so).
And talking about disease modifying therapy and MS, I don’t see things as you see them at all.
We could use cyclophosphamide pills in early SPMS and achieve better results, but we don’t do this. Why? Those pills are cheap. For early active SPMS, the cancer risk from that doesn’t even matter. Those people are only going downhill. And there are studies that testified that.
We could use i.v. cladribine in much higher dosis and more often for active SPMS, but we don’t. Why? I.v. Cladribine is cheap. And the list goes on, you know it very well. I respect you, you’re a great person and much more involved in the search of a MS cure than any other, but knowing all that pharma does in MS, I’m not happy. I’m mad.
Until MS sufferers stop being the “poor cousin “ of neurological chronic diseases, treatment will always be a grave disappointment. The demographic is still on the back foot. I’m talking about older female, post fertility, low economic importance factor which will always prevail until society radically changes. Everybody needs to get very pro feminist before changes might happen. We are just too jolly expensive and our worth comes in for judgment. For the record I think we are worth it.
I was diagnosed in 1965 aged 16 by Dr Aldren Turner …( a silent man) I had x rays and a lumber puncture over a three week stay in hospital…hadn’t appreciated the LP was to eliminate neurosyphilis !.
He proscribed me acthar gel injections which I think were quite cutting edge.
From an episode of complete paralysis from waist down over a period of six months ..I made a total recovery …I have not had any other drugs .
However I now apparently have SPMS ..a new concept from the disseminated sclerosis I was initially diagnosed with . I am deteriorating now but have had a very full and free from symptom life until now. So had I been the Queen and diagnosed in 1952 by Aldren Turner when I think the situation was much the same as it was in the 1960s ..I might not have been dead by 1970s….!
Great article and the progress in MS has been good. Especially last 15 years
Do you think with more people (bar the US) starting on higher efficacy DMT as first line treatment the overall outlook on disability and expectancy is much better especially those of us in their 30s?
I know there isn't any long-term data to show that but surely the overall outlook for us starting it now will have better outcomes?
Thx for this post. In it you write that the latest data from Nordic countries indicate that life expectancy of someone with MS is now only 3 years less vs general population. Do you mind letting us know which study this is? All the studies I see still point to 5-10 years less.
“illustrates to me why we need to celebrate the progress we have made in the field of MS over the last 70 years. Do you agree?” Are there drugs to stop the underlying neurodegeneration / progression? Are there drugs which stimulate repair of a brain / spinal cord damaged by MS? I’d be surprised if anyone diagnosed with PPMS today would share your view on the progress made. My 57 year old friend (diagnosed 2005) operates her electric wheelchair with one finger and relies on multiple carers (her husband walked out ten years ago). She’s got nothing to celebrate. My GP visits a local care home where there are two women with MS who are in their mid to late 30s. No careers, no family life, no future…. even my GP gets choked up when she mentions them. They won’t be the only cases in the country. Piggy backing on the Jubilee is an odd way of trying to show the progress made in the field of MS. Progress in the MS field has been slow and patchy, with the main work (stopping progression, encouraging repair) still to do - no reason to wave the flags or let off any fireworks. In 1952 no one knew the trigger cause / trigger of MS. In 2022 (70 years later) a paper pointed the finger at ebv. Although even you admit that you don’t know how ebv is involved (another recent paper came up with 10+ possible ways ebv may trigger / drive MS). More research required! Maybe in ten years time (BTK inhibitors, anti-virals targeting ebv, remyelination therapies) the world of neurology can reassess the progress made in treating MS. Compared to the progress made in other fields eg cancer, neurology is at the back of the queue. Don’t get me started on MND ((family friend) or Huntington’s (colleague’s wife).
She would never have had to contend with undignified applications for PIP and other state support in lieu of lost salary.
She would never have had to make painful decisions on whether to leave the house uncleaned or try to find and afford a cleaner.
She would have been able to continue enjoying her pets and livestock knowing that there’s a domestic machinery to keep everything running regardless of her own presence, interest or ability.
Forgive my bitterness but she has always lived in outrageous privilege and to see such widespread public servility this weekend has felt rather embarrassing. I’m glad she’s never had to contend with the nastiness of MS, but if she had, she would’ve endured it in unimaginable comfort and material security.
I do wonder if that would have super charged the search for better drugs...
Perhaps I am one of the unlucky ones but my prognosis is not too different from if I’d been diagnosed in 1952. It is worth pointing out that even wonder treatments such as alemtuzamab have an efficacy of 70-80percent leaving 20-30 percent of us no better off. That’s what I think of the back patting.
I appreciate the attempt to highlight progress. I take issue with the part about Norway finding that MS patients lose "only 3 years" of life compared to healthy controls. When I think about how drugs are approved for cancer and the costs justified for "only 6 months" prolonged life of a cancer patient, 3 years seems like a very long time to live- or not. The adverb "only" is what caught my eye. In the past I have read that MS shortens a life span by 7-8 years. In comparison, 3 years is an improvement, but not a comfort to a MSer.
Perhaps a gentle warning of content on some of your posts would be appropriate, especially for those of us with untreated SPMS - you really didn't get my day off to a great start ........
My grandmother would have been the same age as the Queen. She was diagnosed with MS before I was born and as a small child I can remember her getting down on the floor to play with me (around the time of the silver jubilee). She died when I was 18 from sepsis related to bed sores. I've already been diagnosed 21 years (symptoms much longer) and I am still mobile with a stick. I don't nod off mid sentence, choke on food (on my own saliva though), need a SP catheter (all the things she needed for her last 5 years or so).
And talking about disease modifying therapy and MS, I don’t see things as you see them at all.
We could use cyclophosphamide pills in early SPMS and achieve better results, but we don’t do this. Why? Those pills are cheap. For early active SPMS, the cancer risk from that doesn’t even matter. Those people are only going downhill. And there are studies that testified that.
We could use i.v. cladribine in much higher dosis and more often for active SPMS, but we don’t. Why? I.v. Cladribine is cheap. And the list goes on, you know it very well. I respect you, you’re a great person and much more involved in the search of a MS cure than any other, but knowing all that pharma does in MS, I’m not happy. I’m mad.
And long may research continue to find ways of holding back this horrible condition.
Until MS sufferers stop being the “poor cousin “ of neurological chronic diseases, treatment will always be a grave disappointment. The demographic is still on the back foot. I’m talking about older female, post fertility, low economic importance factor which will always prevail until society radically changes. Everybody needs to get very pro feminist before changes might happen. We are just too jolly expensive and our worth comes in for judgment. For the record I think we are worth it.
Sorry for being that offtopic, but any idea of how much ATA188 would cost?
My idea is that it will be over 50.000 euros a year and will not be broadly used if it proves effective. Can you inform me if I’m wrong?
My opinion is that it requires a lot of personalized technology and will be incredibly expensive.
Wonderful reading! Truly highlights the improvements seen in the care and treatment of patients with MS.
Thank you Prof G. Hope you're having a lovely Bank Holiday weekend. ☺
I was diagnosed in 1965 aged 16 by Dr Aldren Turner …( a silent man) I had x rays and a lumber puncture over a three week stay in hospital…hadn’t appreciated the LP was to eliminate neurosyphilis !.
He proscribed me acthar gel injections which I think were quite cutting edge.
From an episode of complete paralysis from waist down over a period of six months ..I made a total recovery …I have not had any other drugs .
However I now apparently have SPMS ..a new concept from the disseminated sclerosis I was initially diagnosed with . I am deteriorating now but have had a very full and free from symptom life until now. So had I been the Queen and diagnosed in 1952 by Aldren Turner when I think the situation was much the same as it was in the 1960s ..I might not have been dead by 1970s….!
Thanks! But please don’t stop searching for something that puts an end to this disease!
Great article and the progress in MS has been good. Especially last 15 years
Do you think with more people (bar the US) starting on higher efficacy DMT as first line treatment the overall outlook on disability and expectancy is much better especially those of us in their 30s?
I know there isn't any long-term data to show that but surely the overall outlook for us starting it now will have better outcomes?
Thx for this post. In it you write that the latest data from Nordic countries indicate that life expectancy of someone with MS is now only 3 years less vs general population. Do you mind letting us know which study this is? All the studies I see still point to 5-10 years less.