#056: Insights into the activities of the European Charcot Foundation with Prof. Giancarlo Comi

This time I welcome Prof. Giancarlo Comi, President of the European Charcot Foundation (ECF), for an interview. We talk about the important role of the Foundation and how it has grown into an international, influential organization to improve the lives of people with MS in a variety of areas.

The Charcot Foundation chairs the English MS Master’s program, which trains MS specialists on a part-time basis with over 100 international lecturers over 2 years.

The multi-stakeholder initiative is about coordinating different projects, pooling resources and avoiding redundancies. The Charcot Foundation also offers various further training opportunities, invites people to the annual meeting in Baveno on Lake Maggiore and is closely networked with the ECTRIMS organization and the local CTRIMS organizations around the world.

We talk about this and other exciting topics in the interview.

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Table of Contents

Introduction – Who is Prof. Giancarlo Comi?

[00:00:00] Nele Handwerker: Hello Professor Comi, it’s such a pleasure to have you on the show. And before we start with the interview, it would be lovely if you could introduce yourself to the audience, so they know who is my interview guest today.

[00:00:14]  Prof. Giancarlo Comi: So, I’m Professor Giancarlo Comi, means Professor of Neurology. I am at present Honorary Professor of the Vita Salute University, President of the European Charcot Foundation and Chairman of the Scientific Committee of Human Brains Prada Foundation. At the same time, I’m still having a clinical responsibility, I’m the director of the MS Center, in Milan, at Casa di Cura Igea. So this is the way I utilize my time.

[00:01:00] Nele Handwerker: You utilize it very effectively, I guess, being very busy.

Personal motivation for your career choice?

[00:01:08] Prof. Giancarlo Comi: Well, I think that my interest in medicine was just back when I was probably 10 or 11, because at that time, my sister, who was a couple of years older than me, had a quite severe pulmonary infection. And at that time, it was the first period, where penicillin was available. I was living in a small village, close to Milan and then I remember myself, at the window, waiting for the physician bringing the medicine for my sister. And I thought that this is the most important person I ever saw in my life. And I was then very attracted by having such a possibility to be of help to people suffering. And that was probably my really first time, where I started to fall in love with the career of physician. And then neurology was, because I thought that the brain was the most interesting organ of our body, I thought, let’s try to go and to face with the most complicated aspect of functioning of our body.

European Charcot Foundation

Why was the European Charcot Foundation founded in the first place and what are the main goals of the foundation as of today?

[00:03:04] Prof. Giancarlo Comi: So, the foundation was founded more than 30 years ago now from Professor Otto Holmes from Nijmegen. And I was really, since the beginning, directly involved. Professor Holmes, it was the very early 90s, came to visit me, in Milan and he proposed the foundation of a new organization, in multiple sclerosis. Professor Holmes was a very fundamental person because he was also the founder of ECTRIMS. So, the two major established organizations, dealing with MS worldwide have been both founded by Otto Holmes.

And then I was really, in some way, involved in both since the beginning, because also I was present in 1983, when we met in the Netherlands to found the ECTRIMS. So, it is a bit of a natural evolution of the ECTRIMS story, when it has been decided to go from ECTRIMS to the European Charcot Foundation. And then, about 15 years ago, I was asked to take the responsibility to be the president of this foundation. And that’s a bit, very shortly, the story of the foundation. Concerning the model, the foundation of course is an organization with very specific aims that are education from one side and networking and the promotion of research in multiple sclerosis.

How international is the European Charcot Foundation? Who takes part in it?

[00:05:25] Prof. Giancarlo Comi: The European Charcot Foundation, the name is there, was at the beginning an organization restricted to Europe, but let’s say, in the last 10 years, when I got president, we thought the foundation that we have to expand our interest not to be only concentrated in Europe, but also to move outside Europe. And now, the Foundation has quite a clear presence worldwide, from Australia to China, from Japan to Central America, South America, North America and of course, Europe. So it’s really more a worldwide organization, but we still maintain the name of European, because we want to, in some way, underline where we are born as a foundation.


[00:06:30] Nele Handwerker: That makes sense.

[00:06:32] Prof. Giancarlo Comi: And we are representative of the foundation everywhere and we organize educational activities really everywhere, usually let’s say 10, 15 symposia courses in all these different continents every year.

[00:06:57] Nele Handwerker: Wow, that’s a lot.

What is the importance of the annual meeting and how does the exchange work the rest of the time?

[00:07:05] Prof. Giancarlo Comi: Well, it is interesting, this question, because the annual meeting was the only activity at the beginning. The annual meeting is still a central time during the year for the life of the Foundation because the annual meeting is always based on a specific topic. We do not have parallel sessions. We like a lot to activate discussion, exchanges of information. So, the only way is to be not too big and in fact, we never accept more than 400, 500 at the very top number of presence there. And we allow a very large time of discussion during the meeting. The meeting is also the opportunity to meet all the representatives of the Foundation worldwide, to have a face-to-face meeting of the Scientific Committee of the Foundation and then to take the strategic decision for next year in some way. So, it is really a time, where we really look at what happened try to understand what will happen in the next town.

[00:08:36] Nele Handwerker: Sounds good. And 400 to 500 is…

[00:08:40] Prof. Giancarlo Comi: Yes, this is the target. And, I have to say that initially, we moved the annual meeting from one location to another, but in the last, let’s say, five, six years, we have established the location in Baveno, that is in Lago Maggiore, in Italy, of course. And the reason is that we have a very good level of organization there, we are a bit over-specialized now, in the organization of the annual meeting. We have a perfect facility there and it is very close to the Malpensa airport. It is out of the heavy traffic of Milan, so for people to attend and to arrive in Baveno, it is an easy task. And that’s really, I think, one of the reasons, why everybody likes a lot this type of education.

[00:09:50] Nele Handwerker: I can imagine. And of course, in my former job, I was working a lot with people from Asia and they always love to come to Europe and especially to such a beautiful place at Lago Maggiore. I guess they are very happy. And when I was flying back from ECTRIMS, I sat next to a neurologist from Germany, whose son went to Baveno and he was asking me if I’m going there as well, and I’m like, no, not yet, maybe at one point in the future. Let’s see.

Charcot Multiple Sclerosis Master

Why was the Charcot Multiple Sclerosis Master initiated?

[00:10:32] Prof. Giancarlo Comi: Well, we had an initial contact from Professor Tjalf Ziemssen from the Dresden University. Dresden International University is internationally highly recognized for these master programs in different areas, not only in medicine, but also in other areas. And Tjalf Ziemssen already organized, some time ago, a master for people of Germany. So, he came to me with the view that, because of the high level of competences existing in the era of MS, in the foundation, because of all our educational activities and scientific activities, that could be possible to enlarge the master from just a national to an international initiative. I was immediately, let’s say, attracted by this idea. It was not an easy task; we had to discuss a lot and also try to find the support. But in the end, the decision was taken, the proposal was approved by the board of the foundation.

And now one and a half years ago, we started. And the master has the aims to facilitate for those who are not expert in the area of MS, mostly physicians, but also other type of researchers, basic researchers, for example, to participate in order to have a quite, let’s say, large, deep and extensive information about the disease, related disorders and from the epidemiology to the other physiological aspects, treatment, management. So really to provide a bit of a global view. Because as you know, there are a lot of educational activities, mostly supported by pharma companies in this area, but no one, no one, is really having a global approach with all the different aspects, let’s say, involved in the program.

The second very strategic decision was that this master has to be open also to a person who is already with an employment. So we had to then organize the master with a predominance of webinars and, let’s say, location of activities during the weekend, when the people are not working. And we succeed by large, still with some, you know, progress, because it is not an easy task. But at the end, we are now approaching the end of the course that is lasting two years. And let’s say the reaction of students has been quite positive.

Students are coming from really everywhere. And again, it is the first exercise. We are now discussing about a second master and the decision will be taken in the next couple of months. But we are in some way proud of what has been organized here. The major point is that these masters are extremely expensive, for obvious reasons, because we had more than, listen, more than 100 teachers.

Plus, we have specific on-site activities, that occur in Barcelona, at the Vall d’Hebron University Hospital, in Dresden at the Clinical University of Neurology and next month, here, in Milan at the Casa di Cura Igea. So again, it is a tremendous effort and the major problem at present is to have, let’s say, a good budgetary plan in order to continue with this type of initiative. I think it’s of great help for the present master, we have been able to find some money in order to co-finance some of the fees for some students, who had no possibility to afford the entire fee for the participation. So that’s really something that we have to take care of. Otherwise, we will be selected in terms of personal availability of money. And that’s something that we are still to work on.

[00:16:36] Nele Handwerker: Yeah, yes. I mean, I love this program. I’m taking part in the German version. And as a patient myself, I think it’s really important to have good experts to be treated by on. And of course, it’s a very good way to make this process much faster for people, who would like to go in that field, but don’t want to spend 20 years until they become experts, or I don’t know, 15 years, how long it would take otherwise. But I know some people are from South America, for example, if they travel to Europe, it’s quite expensive, I guess.

[00:17:09] Prof. Giancarlo Comi: Yes. From Iran, so from really different countries. And let me say that because of the evolution of medicine in the last 20 years, now we know that the tendency is to have a physician and organization very focused on a specific topic, but the university doesn’t really prepare operators, not only physicians. I’m talking also about nurses, for example, the organizers, administrative, so there are a lot of changes here and we need to be able to prepare people in some way to do something that cannot be part of the usual preparation of a physician, even of a specialized neurologist. The amount of time during the specialization devoted to MS being a few hours. So, and the disease is, as you know better than me, has a lot of aspects that you have to deal with. So I think this is a very high motivation for continuing and mastering in this role.

[00:18:44] Nele Handwerker: Yeah, I keep my fingers crossed that it will go on.

Who is the main target group and what can students expect from this on-the-job training?

[00:19:00] Prof. Giancarlo Comi: No, I mean here is that, yeah, we try to prepare students to the complexity of handling a person with multiple sclerosis. Again, a lot of physicians, they tend to a bit oversimplify, but it is also a method of organization. But in order to provide a person with MS with the best level of care, we need a very, very strong organization. The European Charcot Foundation some years ago, has promoted the view that we should apply the same strategy that has been so successful in other diseases. For example, in stroke, it’s the stroke unit that completely changed the efficiency of the intervention in the disease. And we are now convinced that that’s exactly the same for MS.

We should be able to give the patient a continuous 24-hour interaction. We must have the patient on board in our everyday activities. We must be able to immediately react for complications and now that we have a lot of very strong disease-modifying treatments, we have much better, of course, control of the disease. However, we have also to deal with more adverse effects. So in order then to maintain a very good level of benefit to risk ratio, we must be able to be very, very rapid to react to potential adverse effects and also to satisfy all the questions that come in the mind of the person with the illness. So, this is the MS care unit. At the end, the master is a way to promote and to prepare people to work in an MS career, to have these very specialized people, who may then become the actors of the tomorrow delivery of assistance to persons with MS.

How do MS patients ultimately benefit from the Charcot Multiple Sclerosis Master?

[00:21:42] Prof. Giancarlo Comi: Well, this is exactly what we would like to see. A person with MS, who may really, in the everyday clinical practice, find now physicians, nurses, more prepared, very well informed about what is the evolution today and really able to react. So, the aim of education is to increase the quality of the management of the disease. And this is what we expect, of course, we will need them to verify that it may happen in some way. 

However, I have to say, based on the interaction I had with the students, I am very confident that they will really be able to increase the quality. Of course, there are excellent operators in the area of MS everywhere, no doubt about that, but it is also important to build this view of the model of delivery of assistance for the person with the MS, which is something that we still need to work on, because still some patients are followed by individual physicians, some of them they just maybe see one or two patients per week, so they are really not highly specialized in this area. And the risk is that if there is not enough good organization, then the physician cannot really decide to go for a very strong treatment, because he is a bit worried of the consequences of potential adverse effects.

We have already seen this, even in the very evolved countries in terms of health delivery. So, I think this is something that we have to really take into consideration. Again, Of course, we do not have a care for MS, we have not solution, not definite solution. However, it is unacceptable, I have to say, that a person with MS in some places will not be in a condition to have all the advantages that are due to the knowledge that we have accumulated during these recent years. So at least offer everybody the best of the quality of assistance based on the present knowledge.

How international are the students and lecturers in the Charcot Multiple Sclerosis Master's program?

[00:25:03] Prof. Giancarlo Comi: We have 100 lecturers from really everywhere. South America, Central America, North America, U.S., Canada, Europe, of course, I’m talking to people from everywhere, I have to say. But also now, China and of course, Australia and Japan. So really, North Africa, other countries, we are really, let’s say, trying to reproduce in the master all the networks that have been activated by the European Charcot Foundation.

[00:25:58] Nele Handwerker: Fantastic.

[00:26:01] Prof. Giancarlo Comi: And the same is for the students. So, this is the incredible ambition we have to reach all the continents and to support the educational activities everywhere.

[00:26:05] Nele Handwerker: Fantastic. And I will try to get some more of them for interviews on my podcast, from the lecturers.

Further activities of the European Charcot Foundation

What information is made available in the MS Knowledge Hub and for whom is it intended? What is the main intention of the multi-stakeholder initiative and who is taking part?

[00:26:23] Prof. Giancarlo Comi: Well, the European Charcot Foundation is running an initiative that is called the multi-stakeholder initiative of the European Charcot Foundation. That means that under the umbrella of the European Charcot Foundation there are a lot of ongoing activities, some are directly organized by the Foundation, some others are performed in collaboration, some others are just completely independent from the Charcot but still connected.

We have two, three times a year a meeting of all the major MS organizations worldwide, patients’ association and the different ongoing research and educational initiatives, in order to harmonize a bit what is happening in the area of MS worldwide. Again, the clear aim of this multi-stakeholder initiative is to try not to duplicate too much, at least, the different initiatives, to guarantee that all the initiatives have an adequate support when necessary. And I think this type of strategy that we have promoted in the last 10 years have been extremely successful.

When we sit all together, or we connect all together by web, I think we really facilitate a full understanding about what is happening and which are the priorities and the strategies that we have to promote, in combination with different actors that are present here.

So, this is a bit really the interest of the foundation. There are some really very important initiatives. I already mentioned the Care MS Unit. We performed some investigations about the models of assistance for MS worldwide. We are almost ready now to publish the result of a very large survey, again, a worldwide platform that provides information about the models of assistance in different countries.

We have another very important initiative jointly supported by the European Charcot Foundation and the International Federation of Multiple Sclerosis with the Italian Foundation for MS as a leading agency that is called PROMS, PROMS states for Patient Reported Outcomes in MS. This is a very important initiative that has been promoted now more than three years ago.

The aim of this initiative is to move the person with the disease at the center of the interest. What does it mean? It means that we have to find a way to give the opportunity to attribute to the voice of the person with the disease a scientific value. So usually, when we have to investigate a new treatment, we, of course, use clinical and instrumental measures and outcomes. Here, the idea is that also patient-reported outcomes have to have a role, both in clinical trials, but also in clinical practice.

The initiative is ongoing, there is a steering committee coordinated by Pamela Valentine, Patrick Vermesch and there is a patient engagement team, which is very fundamental, because they contribute to all the choices for the decisions. So, again, there is a lot of movement in the last recent years for a more, let’s say, direct involvement of the person with the disease, in the strategic decisions that are really, let’s say, having the person at the center. So, we should then try to do our best, in order to give a very specific value to this type of evolution.

[00:31:51] Nele Handwerker: Very good.

[00:31:52] Prof. Giancarlo Comi: And this, for example, this is extremely important. We also participate to European-founded projects in collaboration with others. We succeed in some recent applications in the IHI programs, for example. And again, we are contributing to develop a better model of delivering assistance, a better way to estimate the impact of disease modified treatment and the disease diagnosis and so on. So again, quite a diffuse activities.

How active is the European Charcot Foundation at the major MS congresses and what role does it play there?

[00:32:33] Prof. Giancarlo Comi: Well, we have a very special connection with ACTRIMS. All the past presidents of ACTRIMS became part of the scientific committee of the European Charcot Foundation, just to have a quite clear establishment of the link between these two organizations. We, as the European Charcot Foundation, we are present in all the different things that are taking place in different countries. Just to give you an idea, we have been present with the symposium at the ACTRIMS, that is the North American Organization.

We have organized this last year, two major events, one in Brazil, one in Argentina. On the top of that, we have been, we have organized symposia with the MEXCTRIMS, that is the Mexican CTRIMS, with the LACTRIMS, that is the Latin America, with the MENACTRIMS, that is the Arab countries network, with the PACTRIMS, that is the Pan-Pacific CTRIMS. We have organized activities. We have established a very special connection with the China Network of Neuroimmunology and we are now planning a meeting, in October or November, in Beijing, with them. We will be in a few months in India for the ICTRIMS meeting and then in Japan.

So, maybe I forget something, but it is nearly the end, just to illustrate how we are present in all these different types of organization. In the past, deeply linked also, sorry, but to RUCTRIMS, that is the Russian, because of what happened, the board has decided to suspend, for a moment, the collaboration with the RUCTRIMS, still, we have a member of RUCTRIMS, part of our board and we will continue to participate. And we really hope that the problem of the war in Europe will be solved and we may restart also with the collaboration with Russia.

[00:35:36] Nele Handwerker: That would be very lovely.

Under the heading Insight 10, 10 particularly important and current papers on MS and NMO are selected. How are the papers selected and how often do they change on average?

[00:35:45] Prof. Giancarlo Comi: Well, we have…  One of the activities of the Foundation is also to give more and more a role to young investigators from our side, to try also to maintain updated about what is very relevant as a new publication. And what you have seen is a selection of papers that is considered of value among those recently published. The papers are not only dealing with MS, but also with NMO, as you immediately very well understood.

And this is, because we have recently started to have very important interactions also on the diseases that are very close to MS, like NMO or MOGAD. And the way to be interactive is, for example, to co-organize, under the umbrella of the European Charcot Foundation, an event that will take place next year, probably in February, in Sao Paulo, Brazil, that will be both an educational event, but also an event open to new research and new results in these diseases.

So, for us, it’s now clear that there are so important connections between MS and NMO and MOGAD and the model that more or less the same people are involved in MS and in this other condition, because in the past they were just only considered variant of MS.  Now we know a bit better, but so, even Charcot is extending now from the MS to also these other diseases, the activity of the foundation.

[00:38:10] Nele Handwerker: That’s good, yes. And I think there are still quite some people walking around, who have the diagnosis of MS, but who are actually having NMO or MOGAD. So, it’s very good that information levels are increasing and people get the right diagnosis and the right treatments.

What is the CLAIMS project (Clinical Impact through AI-Assisted MS Care) and how will MS patients benefit from it in the future?

[00:38:37] Prof. Giancarlo Comi: Yeah, CLAIMS is one of the initiatives of the European Charcot Foundation that see at least the participation of the European Charcot Foundation in a project that is needed by Paul Friedman from the Charité in Berlin and Icometrix as a company. As you know, these are projects of the IHI. These are initiatives that are jointly supported by the European organization and by the pharma and technological and technical companies. It is a very interesting type of projects, because they see a joint effort of different industry and academic patients’ association organizations. The CLAIMS is a project aiming at try to use the artificial intelligence to understand the better way to select a given treatment for a given patient and then to monitor the effects, efficacy and safety of this type of treatment.

The reason of this project is that We have a lot of individual evidence that some biomarkers, clinical or instrumental biomarkers, may help to understand the trajectory of the disease in individual patients. Everybody who has even a very minor knowledge of MS, knows that there is a lot of interpatient variability, and some patients are fine for the entire life.

Some others, unfortunately, even after a couple of years, may have a quite severe disability. So, all the intermediate possibilities between these two extremes are there. So, it is clear that if we are to be very efficient against this disease, we need to understand which is the individual’s trajectory, because to have a very, very aggressive therapy for everybody for a disease that lasts a life may determine more problems than advantages. Vice versa, if we are not enough active in controlling the disease, let’s say a disease, which may be in a person extremely aggressive, we may have this person very quickly accumulating a severe disability.

How then to personalize our intervention? To personalize intervention, we need two fundamental points. From one side, we need to have a quite large range of different disease-modifying treatment. And from the other side, we must have a quite large variability of the evolution of the disease. So then if we have these two conditions and no doubt that MS has these two conditions, then there’s a third necessity. 

That is to have the possibility to understand as early as possible, which is the individual trajectory. So, to have prognostic and predictive factors. CLAIMS aims to use the artificial intelligence to analyze data collected in a prospective way and data collected in a prospective way in large population of patients, in order then to be able to find the best combination of markers, including patient blood and patient reported outcomes.

[00:43:33] Nele Handwerker: Yes, as I belong to the mild course, I don’t want to be treated with the high efficacy treatments. But of course, they are very helpful for the ones with the aggressive version of MS. So, I always love to see these things happening, where it comes really down to make individual decisions based on the individual patient that are suitable for that disease course, but of course it’s not easy and I think AI can help a lot there.

Quickfire Q&A Session

Complete the sentence: "For me, multiple sclerosis is...."

[00:44:05] Prof. Giancarlo Comi: Well, for me, multiple sclerosis is an enemy that we need to confront it with and do our best to win the confrontation. Which in the past was quite far from the reality, but more and more we are approaching such possibility. So that’s really the fundamental point. I feel sometimes to be like a policeman. So, I have to confront it with something that happened to a person and I have to try to understand which have been the different facts and different conditions that have determined what happened. I have to try to understand which is the vision of the person itself for itself. And then try to really find the best way to be of help to the person. It requires a lot of flexibility, but yeah, this is to be a physician, I thought, that makes combined science, but also the capacity to pay attention and to be open to understand the person sitting in front of you.

What development would you like to see in the field of multiple sclerosis in the next 5 years?

[00:45:57] Prof. Giancarlo Comi: Well, let’s say that the still fundamental problem we have to face with MS is to be able to arrest, to block the evolution of the progressive MS. We are now very efficient in controlling the relapsing phase of the disease, but we are extremely weak in the confrontation with the irreversible accumulation of disability that occurs independently or from attacks. We still need to know a bit more about which are the real mechanisms that are determining this shift from relapsing to progressive. Some of my colleagues believe that the progression, the progressive mechanisms are operating since the beginning and then that is a phenomenon that is always there. I’m not convinced. After a very long life with the disease, I know that there are quite frequent now cases of people who do very well and they do not have any accumulation of irreversible disability, so they do not enter in what we defined some years ago and still now many of us use this definition at progressive MS. So my really fundamental, let’s say, advancement in MS is to find a treatment for the progressive MS vertebrates and that’s really the major point.

[00:48:04] Nele Handwerker: Yeah, that would be very, very lovely. And I think many people are awaiting that one, that treatment, or maybe again, as for relapsing, remitting MS, probably a bunch of treatments.


Finally, what message of hope or encouragement would you like to share with the listeners?

[00:48:24] Prof. Giancarlo Comi: It is a bit linked to what I said before. I think that one of the most important initiatives in multiple sclerosis, in the last 10 years, has been the promotion of the Progressive MS Alliance, jointly promoted by patients’ association with the involvement of many important academic centers. Because it is only if we join our efforts that we may be in a condition to succeed, in order to solve the problem of progressive MS treatment. So my message to people with MS is first, for those of you, who have received the diagnosis just now or very recently, be very confident with the possibility to live your entire life without major problems from the disease. Because when we are able to start our treatment very early, today we have so efficient disease-modifying treatment that it is not every way, not every time I have to say, but in the vast majority of cases, we are able to keep the control of the disease.

And the second message is for those who are forcibly already have the disease since some time. Again, here also for you, because of these new treatments, the expectations are extremely good to have a very good future. And for those, who unfortunately already have some level of disability, I also hear and see a lot of the important evolutions. Here, please don’t forget that the rehabilitation, not just only physical rehabilitation, but a very, let’s say, modern and complex rehabilitation, is of great importance to facilitate your life. So, don’t lose the opportunity to utilize such an approach. And also, I’m very convinced that in a very reasonable time, also for you, there will be some pharmacological support to try to block the evolutionary deficits.

How and where can interested people follow your research activities?

[00:51:40] Prof. Giancarlo Comi: Well, I can tell you about an initiative that we are considering. One of my recent activities, I told you, is to be the chairman of this Prada Foundation Human Brains. Our target are neurodegenerative diseases, so a bit larger view, not only MS, but also other diseases that chronically may affect the central nervous system.

And here we are organizing for the fall of this year, a combination of an international meeting on the prevention of these diseases and an exhibition to try to inform people, in a very easy way, in a very understandable way, about what has to be done in order to reduce the risk of these diseases and trying to prevent the negative evolution of the disease. And we thought that this exhibition has to, at the same time, to have in parallel a lot of workshops and focus groups on some of the key aspects of the prevention and management with the contribution of patients‘ organizations, in order to, not to maintain the level of information just at the level of experts, but again to see now more and more a bit the responsibility of science to be open to everybody.

There have been a lot of, you know,  attacks on science. In some way, some of the reasons of this attack were probably due to the fact that we didn’t use appropriate language and not considering to be understandable. And I think this is again a fundamental aspect. The European Charcot Foundation, of course, it’s fully active initiative, I just mentioned before is another way. So, if you allow me to close this interview with this really fundamental consideration, we should really be able not just to use words without actions, when we speak about the patient to be at the center of the disease.

To be at the center means that you are not to be there passive, just listening or just to be object of the interest. But it means that you must be in a condition to contribute to your own health. I’m not an extremist. I don’t like some views that the person with the disease should be able to handle herself or himself. I’m not in favor of that, I want to be clear. Because I think that it is already so complicated for the profession is to handle complex diseases that to attribute to the person such a responsibility is a very wrong decision from both, because it may open to a lot of tragic errors.

But also, because the patient and the person with the disease will also be in big trouble, because he or she will be feeling in a very great difficulty to take decisions. You know, it happens to me, after 50 years of MS story. And so, it is right that I have to accommodate this type of not easy task, not reasonable to charge the person with the disease also with this responsibility. Having said that, nevertheless, we should try really to come together for a better management of the disease.

[00:57:01] Nele Handwerker: Yes. Tjalf Ziemssen is actually my neurologist and he prefers always the metaphor of a partnership. He is the trainer, he knows of course all the facts, I’m the player on the field, the soccer player or whatever, who has to take certain steps and certain activities and I have to decide if I want to do it or not, if I can manage to do it. But he is the one with the competency and he knows, of course, best because he is the expert. And I like that approach, the team approach, that it’s a working together.

Professor Comi, thank you very much. Thank you very much for the interview. It was very interesting and thank you for all your efforts and all your time you are putting into making the lives of us people living with MS better. And yeah, greetings to lovely Italy, to lovely Milan. Bye bye.

[00:58:00] Prof. Giancarlo Comi: Okay. It was a pleasure. All the best. Bye bye.

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Portraitbild Nele Handwerker

Nele Handwerker

Blogger & Patient Advocate

I show you how to make the best of your life with MS from family to career to hobbies. Thanks to science and research, a lot is possible nowadays.

Nele Handwerker


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