MS research has become an ever expanding industry - good for Professors, research teams, PhD students and pharma. The ECTRIMS meetings are an opportunity to meet up with some old mates, try the local food, and add some more air mile points. This was the 39th ECTRIMS meeting, but (as your alternative event illustrates), it’s about coming up with questions, not answering them. What has really been achieved over the last 39 years? Surely the advances in technology (imaging, computing..) should have helped answer at least some of the key questions still being debated. 1500 abstracts presented (more a graphic design contest than about any useful findings) - how many of these will deliver any real benefit to those with the disease? 9000 participants with all their PhDs, but there’s no agreement on whether EBV is the cause, or how to stop smouldering MS! If ECTRIMS reaches its 50th meeting, then this must be viewed as a failure. I’d scrap the current gravy train approach and have a meeting in 5 years time (2028). At this meeting 5 teams (collaborating across the world) would report back (definitive answers and ready to go solutions eg a specific anti-viral) on the key topics of EBV, smouldering MS, remyelination, neuro-restoration and prevention. Unfortunately, it will be like turkeys voting for Christmas. No one will rock the boat, so the current boring format for the ECTRIMS meetings will continue and no questions will ever be answered, and those air miles will keep building up.
Steve, Don’t forget PACTRIMS and LACTRIMS! Soon they’ll be more MS researchers than MS sufferers. We suffer from this devastating disease, while others build life long careers, reputations, healthy bank balances and travel the world on the back of it. In my next life I’ll be an MS researcher - job for life and no accountability ie can keep churning out papers which have no practical benefit to those with the disease.
All the prizes and notoriety are still up for grabs so I am sure a lot of researchers are doing their utmost and experience frustration too. I am too old to benefit now but I wouldn't begrudge someone their career and achievements.
We should forget that although these big academic meetings are a bit of a marketing jamboree a lot of networking, sharing of ideas and thinking happen at these meetings. My highlights were behind the scenes discussions I had about EBV vaccines and CD19-targeted CAR T-cells. These discussions only happened because I was at ECTRIMS. I am a big supporter of face-2-face academic meetings for this reason.
Will you promise me that The 50th ECTRIMS meeting in 2035 will be your last! I’ll be six foot under by then, but I wonder what further progress (if any) will have been made in stopping disease progression and preventing MS for future generations. These academic conferences (in my view) have slowed progress in understanding and treating the real MS. We need someone like Edward Jenner who observed something and then tested his idea (small pox vaccination). There’s a point at which endlessly talking about stuff has to stop and something has to be delivered to make the lives of MSers better.
I need the community to add a session / day all about dealing with day to day symptoms cause I am sick to death of the typical roller coaster of ;
Try Gabapentin, Tegretol, lyrica, this and that until we make ourselves sick and dizzy figuring it out. No one talks about helping our day to day. It’s frustrating while we struggle every day whilst conferences focus on stuff that doesn’t give us actual relief. It’s great to focus on diet and biomarkers but can someone alleviate my symptoms.
It doesn’t get spoken about enough IMO and it’s frustrating
Every conversation is all about DMTs, aHSCT, EBV, diet etc
Almost zero discussions, trials and new medication to deal with actual symptoms.
It’s a trial be error which is fantastic for a patient. Don’t think Doctors realise the crap we tolerate with side affects and general impact to our health when we try each and every new medication to help ease our day to day symptoms.
Mine are with me 24/7. “Here try this, or this, or this”
Good point Christian I am having a rough time with Pregabalin, it's helping one thing but causing another, same with Baclofen. We are stuck between a rock and a hard place making decisions about symptoms and side effects, it's exhausting.
Agreed. But symptom management is barely discussed- I know Prof G has an article on amitriptyline but I want proper conversations, medicine that WORKS and helps our symptoms and more research into this.
It’s barely spoken about in the community and we just suffer everyday.
Fair point however i think equally side effects from meds used to treat symptoms is just as important or more. I got serotonin syndrome off amytriptiline, i couldn't pee anymore and thought it was the ms. Just a thought.
I also have a phobia of trying drugs. I was given amantadine by my neuro last year and i still havent tried it because i don't havr anyone to encourage me to. Main reason is 1 just because and 2 because my cognition is smashed.
But i do try neutraceticalsand have good results. So far I've almost cured my sibo, I've improved my energy, etc.
LEARNING FROM YOUR PATIENT - how really listening can add to diagnosis and treatment of MS
RATIONALE: I find the patient voice is still missing from most conversations and as you know, we have a lot to say about our treatments and what areas of our lives might be improved by appropriate care that takes into consideration our needs and not just meeting regulatory items.
Oct 16, 2023·edited Oct 16, 2023Liked by Gavin Giovannoni
We need to start by reviewing the actual purpose of ECTRIMS. The website says the event is designed to, 'connect' experts.... That's a foundation for waffle. Ask any PATIENT and the purposes of a meeting of global experts should be 1) To manage MS effectively now, and 2) work towards a cure. The rest will fall into place once there is consensus on what we are trying to achieve. Without an agreed strategy we are all wasting our time.
The patient voice needs to be much more prominent. You're a rare breed of neurologist who actually understands that MS is horrible - spelling this out would reattach academics to the realities of this condition.
Then I think they should look at the whole life costs of MS approaches - EG HSCT may be way more cost effective in the long term. This would encourage a different, more productive conversation about how we effect actual change (esp in NHS) instead of going round and round in circles ...
As others have suggested, anything involving dinners, hotels etc affords a lucrative opportunity for some attendees - is there a desire/willingness to actually improve things? I don't know.
Great idea to rewrite it. It sounds dry as anything. And what better way than what you have done - make a start, then ask PATIENTS! :)
As a non-medical person I can't comment on the content, but as someone who works in academia to deliver meetings and conferences I can say sometimes its about the format. I work in the social science realm and spend time trying to maximise opportunities for people to share ideas in safe spaces. Conferences in large places, with no room to think or speak and no 'fun' element are often counter productive. Too much 'chalk and talk'? And not getting to poster sessions is a lost opportunity (but then often Posters don't do the research justice). Two days is definitely a maximum, and a late morning start with a post lunch end. Just simple things make all the difference. And Clinicians may be better at time keeping but many a Speaker opens a 30 minute presentation with 60 very complicated slides, over runs and leaves no time for any Q&A.
I agree with Christian and Ian. ECTRIMS offers false hope. I was diagnosed in 2005 and recall a Promise 2010 being flagged by the MS society. I’ve had no DMDs - so wonder how long ago exactly and who knew about smouldering MS? Why was I not offered something?
It does seem like we are guinea pigs - trailing drugs for neuropathic pain, with side-effects similar to ms symptoms.
I feel that a collaboration is lacking in research. I feel that a clear treatment course is also lacking in the NHS. Probably because the diagnosis of type of ms is confusing. I went from RR to SP when I started asking about treatments because I felt the deterioration. So I was then no longer in the category for treatment.
Struggling daily - and yes, where is the help with bladder function? It’s been years and I’ve only just been offered help with a pelvic floor specialist.
I’m going to stop here. But I do think ECTRIMS isn’t working - not for us as patients that’s for sure.
I’m not sure what you’ll take from this Professor. I do appreciate all the work you do - challenging accepted norms has to be applauded.
Oct 16, 2023·edited Oct 16, 2023Liked by Gavin Giovannoni
It looks fantastic and I would be booking a ticket. Wish these meetings would nod to paediatric MS. I appreciate it isn’t the remit of adult neurologists but these kids become adults or teens in transition phase under the care of the adult teams and their needs are different and often overlooked.
this looks great. but why are you only mentioning sleep, bladder, cognition and gaslighting in not-strictly-medical sections? surely there needs to be more evidence based physio, ot, mental health etc. ditto to lots of christian! and what about palliative care?
Make the pathology of smoldering MS the definition of MS. Disease progression (NEDA) and drug effectiveness should be measured by how well smoldering MS is controlled, rather than on relapse rate. The standard MRI with contrast needs to be supplemented with effective technology to monitor smoldering MS and disease progression. Effective EBV anti-virals need to be developed and their effects on smoldering MS should be measured. Neuroregenerative therapies need to be developed for those of us with end-stage MS. EBV needs to be either proven or disproven as causing the pathology of MS (my doctor thinks it is just one factor in the development and has nothing to do with the disease after that).
It is testing an old hypothesis that MS is autoimmune and being driven by T-cells. Foralumab binds to CD3 on T lymphocytes and it is meant to target mucosal T-cells, modulating the T-cell receptor complex, which then leads to tolerance. Anti-CD3 works in early type 1 diabetes and this is why it is being taken forward in MS. There is hypothesis underpinning this strategy and the experiment needs to be done. However, I don't think MS is an autoimmune disease so I expect this molecule not to work. If it does work I would have to change my opinion.
Main thing missing, as regards the "treatment" part of the conference:
How can we provide healthcare more efficiently in order to diagnose and provide DMTs faster?
As a person with MS, I am sick and tired of hearing lectures on how important early treatment is. *I know*. I've known for as long as I first googled MS. But I am still not on treatment despite being "eligible".
I have devoted much of my life over the last year or so to trying to get onto treatment. I am met with a shortage of radiologists, radiologists who produce absurd reports later completely contradicted, an MS neurologist who told me the disease is mild in people over 40, letters dictated to secretaries and typed a month later, letters sent in the post taking two weeks to arrive, another waiting list, for another MRI, and a wait for another radiologist, and a wait for the neurologist again, a rainforest of letters to my GP who can't do much, incorrect prescriptions, forgotten referrals, tests taking place in series that should have been ordered in parallel, threatening letters about what happens if I miss an appointment, phones and emails unanswered when I try to point out the appointment has already taken place and I don't need another, crossed communications.... get the picture?
I think the worst thing of all is that neurologists are surrounded by a barbed wire fence of people keeping us away from the help we need. Their secretaries never answer phones and seldom emails. MS nurses also do not answer phonelines, take days to respond to emails and then sometimes haven't read the question properly. As a patient, it's really hard to hold down any kind of employment while dealing with all this - and that's without MS symptoms.
Can we forget about things like using AI, and just learn to use things like email, video appointments and answering telephones.
I'd like delegates from the UK to sit down at ECTRIMS and take a look in the mirror about how they organise their services: Yes, resources are limited. But what can be done to get patients to treatment faster?
And if other countries are not as kack-handed as we are, can we learn from them?
Sorry for the rant. Perhaps you could replace the "gaslighting" topic with this broader issue of delay to diagnose and treat. No point inventing fancy new DMTs if we can't handle the ones we've got.
As for all this philosophical debate about the definition of the term "cure", who cares?
Re: "As for all this philosophical debate about the definition of the term "cure", who cares?"
I care. The fact that nobody recognises that a proportion of pwMS who are treated with IRTs (cladribine, alemtuzumab and AHSCT) are cured means these treatments are not offered to pwMS. I am aware of many neurologists who simply refuse to offer their patients alemtuzumab or AHSCT on the ground that these treatments are too risky. To risky for who? In other words a large majority of pwMS are being denied treatments that could offer a potential cure. That matters much more than you realise.
That's an interesting point, though I wonder whether the magic word "cure" is what should make the difference? If a treatment is very highly effective, that should be enough to overcome these concerns. If it isn't, there's already a problem.
You know, from my experience - including trying to get onto more effective treatments - I wonder if the problem is the NHS outlook. Your question "risky for whom" comes in here. The organisation seems to be set up with the main aim of preventing litigation, rather than providing the best care. The question on the minds of people working in the NHS is "could I get sued for this?". The same applies in social care. A few examples:
1. You could put a patient on treatment X. If you do, there's a risk of serious side effect Y - litigation risk. Or you could not put them on treatment X. They might deteriorate due to MS, but are you going to get sued, in 20 years time, for being over-cautious? Less likely, even if you haven't retired by them. If a treatment were re-labelled cure, would this scenario change? Perhaps they would say that cure is "too risky". And we are "used to" MS patients and how they go downhill, whereas a new risk attached to a DMT and spelled out in black and white is more alarming.
2. An elderly patient with dementia, continent prior to admission to a "care" "home", wants to use the toilet, thinks its vital to his dignity and would rather risk death than be put in a nappy. You could take him to the toilet as he wants, but there is a risk he might fall even with help - and a "fall" is the kind of thing that could prompt investigations, litigation... On the other hand, you could force him to stay in bed in a nappy, ignore his distress - and you'll be fine. Nobody sues in this country for leaving elderly patients in nappies unnecessarily. If anyone complained you would say you were doing it "for his safety". One day a new member of staff questions this practice. She is treated as a bit naive and encouraged to toughen up: this is what comes with dementia. And the CQC will want to see procedures on fall prevention, whereas the nappies are a safe option.
3. You could put a patient on treatment X, and it's your job to spell out the pros and cons. You know treatment X is a "cure", whatever that means. But to put the patient on the drug you need to "consent" the patient - a procedure that seems more important than actual treatment in our culture. So you have to spell out every scary side effect that just might occur. But the process doesn't seem to involve a reminder of the risk of non-treatment. The patient, who doesn't realise this is all about litigation, gets scared off.
4. A patient makes a suggestion to change the order in which things are done, in order to improve service. When you get this letter, it goes straight to a legal department who draft a defensive response designed to fend off any possible avenue for legal action. Nobody really says, hm, the patient seems blissfully unaware of the constraints, but still, there is an issue. Is there anything we can do?
5. Another elderly patient wants the toilet. She is only in hospital for a brief stay, she does not have dementia and is not incontinent on admission. Her bed is only a few yards from the toilet, but she is not "allowed" to get up on her own because she was on sedation recently and might fall. When her cries for help are eventually responded to, two nurses bring an enormous bedpan and attempt to lower her over it, to a position she finds very hard to maintain, and expect her to pee before her new audience. This is because for some reason their procedures say this has to happen with an elderly patient in her position. Though there is a normal toilet a couple of meters off that she could use if taken there. But failing to follow procedures can trigger an investigation. Procedures trump common sense and humanity any day. In fact, the staff have been trained to switch off their sense of initiative, otherwise the job would be too distressing. Next time this patient gets ill, she won't call a doctor because she's terrified of hospitals.
I don't think we patients' best interests first. Litigation seems to distort things. Procedures are king.
There are medical decisions which are genuinely a tough call. But we could do without these distorting factors because as a patient, you are left thinking "Is this a real risk I should be worried about, or is my doctor worried about litigation?"
MS research has become an ever expanding industry - good for Professors, research teams, PhD students and pharma. The ECTRIMS meetings are an opportunity to meet up with some old mates, try the local food, and add some more air mile points. This was the 39th ECTRIMS meeting, but (as your alternative event illustrates), it’s about coming up with questions, not answering them. What has really been achieved over the last 39 years? Surely the advances in technology (imaging, computing..) should have helped answer at least some of the key questions still being debated. 1500 abstracts presented (more a graphic design contest than about any useful findings) - how many of these will deliver any real benefit to those with the disease? 9000 participants with all their PhDs, but there’s no agreement on whether EBV is the cause, or how to stop smouldering MS! If ECTRIMS reaches its 50th meeting, then this must be viewed as a failure. I’d scrap the current gravy train approach and have a meeting in 5 years time (2028). At this meeting 5 teams (collaborating across the world) would report back (definitive answers and ready to go solutions eg a specific anti-viral) on the key topics of EBV, smouldering MS, remyelination, neuro-restoration and prevention. Unfortunately, it will be like turkeys voting for Christmas. No one will rock the boat, so the current boring format for the ECTRIMS meetings will continue and no questions will ever be answered, and those air miles will keep building up.
Well said, Ian! And as an American MS sufferer, add in ACTRIMS to Ian's ECTRIMS comments!
Steve, Don’t forget PACTRIMS and LACTRIMS! Soon they’ll be more MS researchers than MS sufferers. We suffer from this devastating disease, while others build life long careers, reputations, healthy bank balances and travel the world on the back of it. In my next life I’ll be an MS researcher - job for life and no accountability ie can keep churning out papers which have no practical benefit to those with the disease.
All the prizes and notoriety are still up for grabs so I am sure a lot of researchers are doing their utmost and experience frustration too. I am too old to benefit now but I wouldn't begrudge someone their career and achievements.
We should forget that although these big academic meetings are a bit of a marketing jamboree a lot of networking, sharing of ideas and thinking happen at these meetings. My highlights were behind the scenes discussions I had about EBV vaccines and CD19-targeted CAR T-cells. These discussions only happened because I was at ECTRIMS. I am a big supporter of face-2-face academic meetings for this reason.
Will you promise me that The 50th ECTRIMS meeting in 2035 will be your last! I’ll be six foot under by then, but I wonder what further progress (if any) will have been made in stopping disease progression and preventing MS for future generations. These academic conferences (in my view) have slowed progress in understanding and treating the real MS. We need someone like Edward Jenner who observed something and then tested his idea (small pox vaccination). There’s a point at which endlessly talking about stuff has to stop and something has to be delivered to make the lives of MSers better.
Some very useful ideas here to think about and promote. Thank you.
I need the community to add a session / day all about dealing with day to day symptoms cause I am sick to death of the typical roller coaster of ;
Try Gabapentin, Tegretol, lyrica, this and that until we make ourselves sick and dizzy figuring it out. No one talks about helping our day to day. It’s frustrating while we struggle every day whilst conferences focus on stuff that doesn’t give us actual relief. It’s great to focus on diet and biomarkers but can someone alleviate my symptoms.
Day 3 :
Treating MS symptoms
What treatments are efficacious
How to treat xyz symptoms
Any new research and treatments in the pipeline
The conference is really about science and MS research. We could add an education programme to address MS symptomatic management.
It doesn’t get spoken about enough IMO and it’s frustrating
Every conversation is all about DMTs, aHSCT, EBV, diet etc
Almost zero discussions, trials and new medication to deal with actual symptoms.
It’s a trial be error which is fantastic for a patient. Don’t think Doctors realise the crap we tolerate with side affects and general impact to our health when we try each and every new medication to help ease our day to day symptoms.
Mine are with me 24/7. “Here try this, or this, or this”
Good point Christian I am having a rough time with Pregabalin, it's helping one thing but causing another, same with Baclofen. We are stuck between a rock and a hard place making decisions about symptoms and side effects, it's exhausting.
Honestly the only real help I'm seeing anywhere from a resercher is prof G.
He is the only one concerned with THE ACTUAL CAUSE OF MS, biohacking, sibo etc.
These are REAL issues.
WHAT CURED MY SIBO IS TUDCA BTW.
Agreed. But symptom management is barely discussed- I know Prof G has an article on amitriptyline but I want proper conversations, medicine that WORKS and helps our symptoms and more research into this.
It’s barely spoken about in the community and we just suffer everyday.
Fair point however i think equally side effects from meds used to treat symptoms is just as important or more. I got serotonin syndrome off amytriptiline, i couldn't pee anymore and thought it was the ms. Just a thought.
Yep which goes to the discussion about managing symptoms, research on new meds etc
It’s just “here take this shit and see if it works” and we deal with all the side affects
Lyrica was horrific to me.
I’ve been terrified to try anything else but have Tegretol now which I’ll start this week
I also have a phobia of trying drugs. I was given amantadine by my neuro last year and i still havent tried it because i don't havr anyone to encourage me to. Main reason is 1 just because and 2 because my cognition is smashed.
But i do try neutraceticalsand have good results. So far I've almost cured my sibo, I've improved my energy, etc.
Totally agree; please start with your own meeting with the new and defined perspectives for MS, neurologists and pwMS-on-line or hybrid-just do it👍
The Alt-triMS meeting is meant for HCPs and scientists. But you are right; why can't pwMS and their families not attend.
Great point. It's an AND not an OR.... Do it, Prof G!
Please note this is a hypothetical meeting and it is not really going to happen.
Suggested Topic -
LEARNING FROM YOUR PATIENT - how really listening can add to diagnosis and treatment of MS
RATIONALE: I find the patient voice is still missing from most conversations and as you know, we have a lot to say about our treatments and what areas of our lives might be improved by appropriate care that takes into consideration our needs and not just meeting regulatory items.
We need to start by reviewing the actual purpose of ECTRIMS. The website says the event is designed to, 'connect' experts.... That's a foundation for waffle. Ask any PATIENT and the purposes of a meeting of global experts should be 1) To manage MS effectively now, and 2) work towards a cure. The rest will fall into place once there is consensus on what we are trying to achieve. Without an agreed strategy we are all wasting our time.
The patient voice needs to be much more prominent. You're a rare breed of neurologist who actually understands that MS is horrible - spelling this out would reattach academics to the realities of this condition.
Then I think they should look at the whole life costs of MS approaches - EG HSCT may be way more cost effective in the long term. This would encourage a different, more productive conversation about how we effect actual change (esp in NHS) instead of going round and round in circles ...
As others have suggested, anything involving dinners, hotels etc affords a lucrative opportunity for some attendees - is there a desire/willingness to actually improve things? I don't know.
Great idea to rewrite it. It sounds dry as anything. And what better way than what you have done - make a start, then ask PATIENTS! :)
Keep up the good work, Prof G.
As a non-medical person I can't comment on the content, but as someone who works in academia to deliver meetings and conferences I can say sometimes its about the format. I work in the social science realm and spend time trying to maximise opportunities for people to share ideas in safe spaces. Conferences in large places, with no room to think or speak and no 'fun' element are often counter productive. Too much 'chalk and talk'? And not getting to poster sessions is a lost opportunity (but then often Posters don't do the research justice). Two days is definitely a maximum, and a late morning start with a post lunch end. Just simple things make all the difference. And Clinicians may be better at time keeping but many a Speaker opens a 30 minute presentation with 60 very complicated slides, over runs and leaves no time for any Q&A.
I agree with Christian and Ian. ECTRIMS offers false hope. I was diagnosed in 2005 and recall a Promise 2010 being flagged by the MS society. I’ve had no DMDs - so wonder how long ago exactly and who knew about smouldering MS? Why was I not offered something?
It does seem like we are guinea pigs - trailing drugs for neuropathic pain, with side-effects similar to ms symptoms.
I feel that a collaboration is lacking in research. I feel that a clear treatment course is also lacking in the NHS. Probably because the diagnosis of type of ms is confusing. I went from RR to SP when I started asking about treatments because I felt the deterioration. So I was then no longer in the category for treatment.
Struggling daily - and yes, where is the help with bladder function? It’s been years and I’ve only just been offered help with a pelvic floor specialist.
I’m going to stop here. But I do think ECTRIMS isn’t working - not for us as patients that’s for sure.
I’m not sure what you’ll take from this Professor. I do appreciate all the work you do - challenging accepted norms has to be applauded.
Your proposed alternative format looks refreshingly different.
Hope it takes off.
Section 1, point 1: A start point should be why EBV has been identified as the cause of MS
It looks fantastic and I would be booking a ticket. Wish these meetings would nod to paediatric MS. I appreciate it isn’t the remit of adult neurologists but these kids become adults or teens in transition phase under the care of the adult teams and their needs are different and often overlooked.
this looks great. but why are you only mentioning sleep, bladder, cognition and gaslighting in not-strictly-medical sections? surely there needs to be more evidence based physio, ot, mental health etc. ditto to lots of christian! and what about palliative care?
It is meant to be an annual meeting with many more opportunities to expand the topics etc.
I like the idea of ALT-TRIMS. I would love to see a session on Lifestyle changes to help manage symptoms. Perhaps:
1. Diet (more whole foods)
2. Exercise (need for cardio & strength training)
3. Sleep (good quality and quantity)
4. Mindfulness (stress reduction & social supports)
5. Supplements (D3, B12, and beyond)
And the data showing how they can help us.
Make the pathology of smoldering MS the definition of MS. Disease progression (NEDA) and drug effectiveness should be measured by how well smoldering MS is controlled, rather than on relapse rate. The standard MRI with contrast needs to be supplemented with effective technology to monitor smoldering MS and disease progression. Effective EBV anti-virals need to be developed and their effects on smoldering MS should be measured. Neuroregenerative therapies need to be developed for those of us with end-stage MS. EBV needs to be either proven or disproven as causing the pathology of MS (my doctor thinks it is just one factor in the development and has nothing to do with the disease after that).
Frexalimab can’t be ignored 😅
EBV vaccine (to prevent long term EBV sequelae)
mRNA-1195
Now on Phase 1 (!)
https://www.modernatx.com/research/product-pipeline
Crossed fingers
Yes. We are all hopeful that this vaccine clears the hurdle.
What are your thoughts on the new nasal spray treatment for non-active secondary progressive?
Also, how can I find the article written by Professor Hauser relating to Rituximab
https://us.macmillan.com/books/9781250283894/thefacelaughswhilethebraincries
Are you referring to foralumab nasal spray? If you are this treatment needs to be tested in clinical trials/
Yes that is the drug. I just wondered what your thoughts were about it at this stage. Does it look promising?
It is testing an old hypothesis that MS is autoimmune and being driven by T-cells. Foralumab binds to CD3 on T lymphocytes and it is meant to target mucosal T-cells, modulating the T-cell receptor complex, which then leads to tolerance. Anti-CD3 works in early type 1 diabetes and this is why it is being taken forward in MS. There is hypothesis underpinning this strategy and the experiment needs to be done. However, I don't think MS is an autoimmune disease so I expect this molecule not to work. If it does work I would have to change my opinion.
Main thing missing, as regards the "treatment" part of the conference:
How can we provide healthcare more efficiently in order to diagnose and provide DMTs faster?
As a person with MS, I am sick and tired of hearing lectures on how important early treatment is. *I know*. I've known for as long as I first googled MS. But I am still not on treatment despite being "eligible".
I have devoted much of my life over the last year or so to trying to get onto treatment. I am met with a shortage of radiologists, radiologists who produce absurd reports later completely contradicted, an MS neurologist who told me the disease is mild in people over 40, letters dictated to secretaries and typed a month later, letters sent in the post taking two weeks to arrive, another waiting list, for another MRI, and a wait for another radiologist, and a wait for the neurologist again, a rainforest of letters to my GP who can't do much, incorrect prescriptions, forgotten referrals, tests taking place in series that should have been ordered in parallel, threatening letters about what happens if I miss an appointment, phones and emails unanswered when I try to point out the appointment has already taken place and I don't need another, crossed communications.... get the picture?
I think the worst thing of all is that neurologists are surrounded by a barbed wire fence of people keeping us away from the help we need. Their secretaries never answer phones and seldom emails. MS nurses also do not answer phonelines, take days to respond to emails and then sometimes haven't read the question properly. As a patient, it's really hard to hold down any kind of employment while dealing with all this - and that's without MS symptoms.
Can we forget about things like using AI, and just learn to use things like email, video appointments and answering telephones.
I'd like delegates from the UK to sit down at ECTRIMS and take a look in the mirror about how they organise their services: Yes, resources are limited. But what can be done to get patients to treatment faster?
And if other countries are not as kack-handed as we are, can we learn from them?
Sorry for the rant. Perhaps you could replace the "gaslighting" topic with this broader issue of delay to diagnose and treat. No point inventing fancy new DMTs if we can't handle the ones we've got.
As for all this philosophical debate about the definition of the term "cure", who cares?
Re: "As for all this philosophical debate about the definition of the term "cure", who cares?"
I care. The fact that nobody recognises that a proportion of pwMS who are treated with IRTs (cladribine, alemtuzumab and AHSCT) are cured means these treatments are not offered to pwMS. I am aware of many neurologists who simply refuse to offer their patients alemtuzumab or AHSCT on the ground that these treatments are too risky. To risky for who? In other words a large majority of pwMS are being denied treatments that could offer a potential cure. That matters much more than you realise.
This - times 1,000.
That's an interesting point, though I wonder whether the magic word "cure" is what should make the difference? If a treatment is very highly effective, that should be enough to overcome these concerns. If it isn't, there's already a problem.
You know, from my experience - including trying to get onto more effective treatments - I wonder if the problem is the NHS outlook. Your question "risky for whom" comes in here. The organisation seems to be set up with the main aim of preventing litigation, rather than providing the best care. The question on the minds of people working in the NHS is "could I get sued for this?". The same applies in social care. A few examples:
1. You could put a patient on treatment X. If you do, there's a risk of serious side effect Y - litigation risk. Or you could not put them on treatment X. They might deteriorate due to MS, but are you going to get sued, in 20 years time, for being over-cautious? Less likely, even if you haven't retired by them. If a treatment were re-labelled cure, would this scenario change? Perhaps they would say that cure is "too risky". And we are "used to" MS patients and how they go downhill, whereas a new risk attached to a DMT and spelled out in black and white is more alarming.
2. An elderly patient with dementia, continent prior to admission to a "care" "home", wants to use the toilet, thinks its vital to his dignity and would rather risk death than be put in a nappy. You could take him to the toilet as he wants, but there is a risk he might fall even with help - and a "fall" is the kind of thing that could prompt investigations, litigation... On the other hand, you could force him to stay in bed in a nappy, ignore his distress - and you'll be fine. Nobody sues in this country for leaving elderly patients in nappies unnecessarily. If anyone complained you would say you were doing it "for his safety". One day a new member of staff questions this practice. She is treated as a bit naive and encouraged to toughen up: this is what comes with dementia. And the CQC will want to see procedures on fall prevention, whereas the nappies are a safe option.
3. You could put a patient on treatment X, and it's your job to spell out the pros and cons. You know treatment X is a "cure", whatever that means. But to put the patient on the drug you need to "consent" the patient - a procedure that seems more important than actual treatment in our culture. So you have to spell out every scary side effect that just might occur. But the process doesn't seem to involve a reminder of the risk of non-treatment. The patient, who doesn't realise this is all about litigation, gets scared off.
4. A patient makes a suggestion to change the order in which things are done, in order to improve service. When you get this letter, it goes straight to a legal department who draft a defensive response designed to fend off any possible avenue for legal action. Nobody really says, hm, the patient seems blissfully unaware of the constraints, but still, there is an issue. Is there anything we can do?
5. Another elderly patient wants the toilet. She is only in hospital for a brief stay, she does not have dementia and is not incontinent on admission. Her bed is only a few yards from the toilet, but she is not "allowed" to get up on her own because she was on sedation recently and might fall. When her cries for help are eventually responded to, two nurses bring an enormous bedpan and attempt to lower her over it, to a position she finds very hard to maintain, and expect her to pee before her new audience. This is because for some reason their procedures say this has to happen with an elderly patient in her position. Though there is a normal toilet a couple of meters off that she could use if taken there. But failing to follow procedures can trigger an investigation. Procedures trump common sense and humanity any day. In fact, the staff have been trained to switch off their sense of initiative, otherwise the job would be too distressing. Next time this patient gets ill, she won't call a doctor because she's terrified of hospitals.
I don't think we patients' best interests first. Litigation seems to distort things. Procedures are king.
There are medical decisions which are genuinely a tough call. But we could do without these distorting factors because as a patient, you are left thinking "Is this a real risk I should be worried about, or is my doctor worried about litigation?"