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When MS stops you thinking clearly
June 08, 2020
When MS stops you thinking clearly

Prof Dawn Langdon shares some advice on invisible symptoms this World MS Day

Difficulties with memory and concentration, known as “cognition”, are part of many people’s experience of MS. Sometimes this is called “cog fog”. The part of thinking that is most often, and most severely, affected is information processing speed. This is a bit like band width in a computer. When information processing speed is reduced, it can make it harder to take in information that is spoken and particularly when a person is speaking quickly. It can also be harder to manage multiple channels of information arriving at the same time. This is why having a sat nav speaking to you whilst you are driving might not be a good idea. Some quite simple solutions to this can often work quite well. For example, if you work in an open plan office, moving your desk to a quieter corner with less interruptions and distractions can be helpful. Asking friends and work mates to remember to speak slowly (not ridiculously so, just not very quickly), can also be a good move.

Another aspect of thinking that MS can impact is memory. Although information that has been stored long term is likely to be OK, remembering to do things can be harder. This can be upsetting for you and for friends, family and work mates. You may feel that you have let them down. They may wonder about your commitment. Again, fairly simple things can help. Diaries, schedule and reminders can help keep you on track. When you have a lot to do, you can plan your activities at the start of the day, perhaps scheduling times to rest, catch up or check your task list.

There are some background things that you might want to think about. You probably know that people with MS can experience increased levels of anxiety, depression and fatigue. Although these don’t have a big effect on your absolute level of mental performance, they make a big difference to how you feel and how effortful mental activity feels. It is worth getting these things checked out by your health care team and if necessary, putting management plans in place. Also, some medications given for MS symptoms can affect cognition, for example the anticholinergics given for continence issues, so it might be worth chatting to your doctor about your prescription profile.

There is a good website about cognition in MS from the MS Trust (www.stayingsmart.org.uk) and Jeffrey Gingold’s books are also very good and available on Amazon: “Mental Sharpening Stones: Manage the Cognitive Challenges of Multiple Sclerosis” and “Facing the Cognitive Challenges of Multiple Sclerosis”. Jeffrey is an outspoken, volunteer advocate regarding MS and cognitive disability. A portion of the proceeds from his book goes to the (US) National MS Society.

When MS stops you thinking clearly

Prof Dawn Langdon shares some advice on invisible symptoms this World MS Day

Difficulties with memory and concentration, known as “cognition”, are part of many people’s experience of MS. Sometimes this is called “cog fog”. The part of thinking that is most often, and most severely, affected is information processing speed. This is a bit like band width in a computer. When information processing speed is reduced, it can make it harder to take in information that is spoken and particularly when a person is speaking quickly. It can also be harder to manage multiple channels of information arriving at the same time. This is why having a sat nav speaking to you whilst you are driving might not be a good idea. Some quite simple solutions to this can often work quite well. For example, if you work in an open plan office, moving your desk to a quieter corner with less interruptions and distractions can be helpful. Asking friends and work mates to remember to speak slowly (not ridiculously so, just not very quickly), can also be a good move.

Another aspect of thinking that MS can impact is memory. Although information that has been stored long term is likely to be OK, remembering to do things can be harder. This can be upsetting for you and for friends, family and work mates. You may feel that you have let them down. They may wonder about your commitment. Again, fairly simple things can help. Diaries, schedule and reminders can help keep you on track. When you have a lot to do, you can plan your activities at the start of the day, perhaps scheduling times to rest, catch up or check your task list.

There are some background things that you might want to think about. You probably know that people with MS can experience increased levels of anxiety, depression and fatigue. Although these don’t have a big effect on your absolute level of mental performance, they make a big difference to how you feel and how effortful mental activity feels. It is worth getting these things checked out by your health care team and if necessary, putting management plans in place. Also, some medications given for MS symptoms can affect cognition, for example the anticholinergics given for continence issues, so it might be worth chatting to your doctor about your prescription profile.

There is a good website about cognition in MS from the MS Trust (www.stayingsmart.org.uk) and Jeffrey Gingold’s books are also very good and available on Amazon: “Mental Sharpening Stones: Manage the Cognitive Challenges of Multiple Sclerosis” and “Facing the Cognitive Challenges of Multiple Sclerosis”. Jeffrey is an outspoken, volunteer advocate regarding MS and cognitive disability. A portion of the proceeds from his book goes to the (US) National MS Society.

When MS stops you thinking clearly
MS21 mention in the Lancet Neurology
June 08, 2020
MS21 mention in the Lancet Neurology

In November’s Volume of The Lancet Neurology, the MS21 initiative was delighted to be mentioned alongside a number of like-minded and important initiatives all advocating the importance of the patient voice in MS care. The Editorial, titled ‘Patient-reported outcomes in the spotlight’ follows the recent launch of the European Charcot Foundation’s initiative ‘PROMS’, and discusses the importance of patients’ perspectives on their disease status and quality of life, as well as recognizing their views as an essential part of research studies and neurological practice. If you haven’t seen it yet, read the full editorial here: www.thelancet.com/journals/laneur/article/PIIS1474-4422(19)30357-6/fulltext

MS21 mention in the Lancet Neurology

In November’s Volume of The Lancet Neurology, the MS21 initiative was delighted to be mentioned alongside a number of like-minded and important initiatives all advocating the importance of the patient voice in MS care. The Editorial, titled ‘Patient-reported outcomes in the spotlight’ follows the recent launch of the European Charcot Foundation’s initiative ‘PROMS’, and discusses the importance of patients’ perspectives on their disease status and quality of life, as well as recognizing their views as an essential part of research studies and neurological practice. If you haven’t seen it yet, read the full editorial here: www.thelancet.com/journals/laneur/article/PIIS1474-4422(19)30357-6/fulltext

Latest manuscript published in Neurology and Therapy: Optimising conversations about disease progression
November 28, 2019
Latest manuscript published in Neurology and Therapy: Optimising conversations about disease progression

MS21 is pleased to announce the publication of its latest manuscript which summarises the lively panel debate held at the European Charcot Foundation Annual Meeting 2018 on the topic of communicating about disease progression in MS. The paper, titled ‘Knowledge is power, but is ignorance bliss? Optimising conversations about disease progression in multiple sclerosis’, and authored by Prof Patrick Vermersch, Jane Shanahan, Prof Dawn Langdon, David Yeandle OBE, Dr Nektaria Alexandri and Prof Sven Schippling, discusses the stigma associated with MS progression and the challenges, benefits and drawbacks in communicating MS’ complex and uncertain disease course with patients. Potential ways to improve these conversations are also highlighted, acknowledging that personalising communication is very important. Published in Neurology and Therapy, this paper was shared for the first time with delegates at the 27th Annual Meeting of the European Charcot Foundation on 21 November and is available online here: https://link.springer.com/article/10.1007/s40120-019-00170-7

Latest manuscript published in Neurology and Therapy: Optimising conversations about disease progression

MS21 is pleased to announce the publication of its latest manuscript which summarises the lively panel debate held at the European Charcot Foundation Annual Meeting 2018 on the topic of communicating about disease progression in MS. The paper, titled ‘Knowledge is power, but is ignorance bliss? Optimising conversations about disease progression in multiple sclerosis’, and authored by Prof Patrick Vermersch, Jane Shanahan, Prof Dawn Langdon, David Yeandle OBE, Dr Nektaria Alexandri and Prof Sven Schippling, discusses the stigma associated with MS progression and the challenges, benefits and drawbacks in communicating MS’ complex and uncertain disease course with patients. Potential ways to improve these conversations are also highlighted, acknowledging that personalising communication is very important. Published in Neurology and Therapy, this paper was shared for the first time with delegates at the 27th Annual Meeting of the European Charcot Foundation on 21 November and is available online here: https://link.springer.com/article/10.1007/s40120-019-00170-7

Abstract accepted for ECF
November 05, 2019
Abstract accepted for ECF

We are very pleased to announce that our abstract, ‘Systematic mapping of global family-orientated educational offerings for people with multiple sclerosis and members of their support networks’, has been accepted for poster presentation at the upcoming European Charcot Foundation (ECF) Annual Meeting 2019 in Baveno, Italy, in November. If you’re attending ECF this year and are interested in finding out more about the MS21 program and publications, stop by the poster presentation and talk to lead author, Dr Alice Laroni.

As part of the ECF scientific program, MS21 will also be running a symposium ‘Family involvement in MS care: Duty or disruption? An MS in the 21 st Century debate’. This debate will be chaired by Prof Jürg Kesselring and features an expert panel of MS21 Steering Group members: Prof Alexey Boyko, Dr Alice Laroni, Pieter van Galen, and Trishna Bharadia. The symposium will take place on Thursday, November 21, 10:15–11:15.

Abstract accepted for ECF

We are very pleased to announce that our abstract, ‘Systematic mapping of global family-orientated educational offerings for people with multiple sclerosis and members of their support networks’, has been accepted for poster presentation at the upcoming European Charcot Foundation (ECF) Annual Meeting 2019 in Baveno, Italy, in November. If you’re attending ECF this year and are interested in finding out more about the MS21 program and publications, stop by the poster presentation and talk to lead author, Dr Alice Laroni.

As part of the ECF scientific program, MS21 will also be running a symposium ‘Family involvement in MS care: Duty or disruption? An MS in the 21 st Century debate’. This debate will be chaired by Prof Jürg Kesselring and features an expert panel of MS21 Steering Group members: Prof Alexey Boyko, Dr Alice Laroni, Pieter van Galen, and Trishna Bharadia. The symposium will take place on Thursday, November 21, 10:15–11:15.

Abstract accepted for ECF
Newest MS21 paper published in Advances in Therapy
September 30, 2019
Newest MS21 paper published in Advances in Therapy

MS21 is delighted to announce that its newest paper is available online from the peer-reviewed journal, Advances in Therapy. The paper builds on insights that the group previously published in their 2018 paper ‘Unmet needs, burden of treatment, and patient engagement in multiple sclerosis’ which we are thrilled to say has now been cited 14 times. The new paper describes how a unique collaborative development process utilising the insights from that publication along with the groups’ original research, led to the creation of two communication tools, myMS priorities and myMS commitments.

These communication tools are designed to foster good relationships between healthcare professionals (HCPs) and people with MS (PwMS), increase patient empowerment and improve communication in MS care. To read about the development process and understand how these tools can support and help both HCPs and PwMS, please click below to download the paper.
https://link.springer.com/article/10.1007%2Fs12325-019-01071-9

Newest MS21 paper published in Advances in Therapy

MS21 is delighted to announce that its newest paper is available online from the peer-reviewed journal, Advances in Therapy. The paper builds on insights that the group previously published in their 2018 paper ‘Unmet needs, burden of treatment, and patient engagement in multiple sclerosis’ which we are thrilled to say has now been cited 14 times. The new paper describes how a unique collaborative development process utilising the insights from that publication along with the groups’ original research, led to the creation of two communication tools, myMS priorities and myMS commitments.

These communication tools are designed to foster good relationships between healthcare professionals (HCPs) and people with MS (PwMS), increase patient empowerment and improve communication in MS care. To read about the development process and understand how these tools can support and help both HCPs and PwMS, please click below to download the paper.
https://link.springer.com/article/10.1007%2Fs12325-019-01071-9

Abstract accepted for ECTRIMS!
June 24, 2019
Abstract accepted for ECTRIMS!

We are very pleased to announce that our abstract, ‘Systematic mapping of the global educational offerings for multiple sclerosis patients on the topic of disease progression’, has been accepted for poster presentation at the upcoming European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) 2O19 in Stockholm, Sweden, in September. If you’re attending ECTRIMS this year and are interested in finding out more about the MS21 programme and publications, head to Poster Session 2, 12 September 2O19 at 17:15–19:15 CEST.

We will also be one of a number of exhibitors at the conference, and this year will be asking delegates to consider the language they use when communicating about disease progression. Look out for us in the exhibition hall and take part in our ‘taboo’ activity!

Abstract accepted for ECTRIMS!

We are very pleased to announce that our abstract, ‘Systematic mapping of the global educational offerings for multiple sclerosis patients on the topic of disease progression’, has been accepted for poster presentation at the upcoming European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) 2O19 in Stockholm, Sweden, in September. If you’re attending ECTRIMS this year and are interested in finding out more about the MS21 programme and publications, head to Poster Session 2, 12 September 2O19 at 17:15–19:15 CEST.

We will also be one of a number of exhibitors at the conference, and this year will be asking delegates to consider the language they use when communicating about disease progression. Look out for us in the exhibition hall and take part in our ‘taboo’ activity!

MS21 at triMS Online – the new way to do congresses
June 11, 2019
MS21 at triMS Online – the new way to do congresses

In June this year, MS21 took part in triMS Online, a global virtual conference for healthcare professionals working in MS. Now in its second year, triMS online was set up by our own HCP member, Gavin Giovannoni, and has successfully brought together thought leaders from around the world to virtually present innovative research. >700 people globally registered to hear from keynote speakers Yael Hacohen and Tanuja Chitnis on paediatric MS and interact with our virtual exhibition alongside others such as Novartis and MS BrainHealth.

 So, is this the new frontier for medical congresses?

As we enter congress season, thousands of healthcare professionals will travel across the world to attend conferences for many different types of diseases and hear about new research and breakthroughs. triMS Online is a relatively new and innovative concept, but due to it being hosted in a virtual space it could allow greater and broader accessibility than traditional congresses, with healthcare professionals across the world able to log on from the comfort of their own desk. Historically, attendees at large congresses were more senior members of the community, however, these types of events could allow for more and more of the future key thought leaders to attend, learn and network.

MS21 was very pleased to take part and we are excited to see what triMS does next.

MS21 at triMS Online – the new way to do congresses

In June this year, MS21 took part in triMS Online, a global virtual conference for healthcare professionals working in MS. Now in its second year, triMS online was set up by our own HCP member, Gavin Giovannoni, and has successfully brought together thought leaders from around the world to virtually present innovative research. >700 people globally registered to hear from keynote speakers Yael Hacohen and Tanuja Chitnis on paediatric MS and interact with our virtual exhibition alongside others such as Novartis and MS BrainHealth.

 So, is this the new frontier for medical congresses?

As we enter congress season, thousands of healthcare professionals will travel across the world to attend conferences for many different types of diseases and hear about new research and breakthroughs. triMS Online is a relatively new and innovative concept, but due to it being hosted in a virtual space it could allow greater and broader accessibility than traditional congresses, with healthcare professionals across the world able to log on from the comfort of their own desk. Historically, attendees at large congresses were more senior members of the community, however, these types of events could allow for more and more of the future key thought leaders to attend, learn and network.

MS21 was very pleased to take part and we are excited to see what triMS does next.

MS21 at triMS Online – the new way to do congresses
My invisible MS – the patient perspective
May 30, 2019
My invisible MS – the patient perspective

Maria Paz Giambastiani talks about what it means to deal with invisible symptoms and how she thinks neurologists could help

There are more than 2.3 million people across the world living with Multiple Sclerosis (MS), and, although 30 May will not be a celebration, it will be a special day for the community, providing a great opportunity to talk about and raise awareness of symptoms, specifically ‘invisible’ symptoms (#MyInvisibleMS), that interfere with patients’ daily lives.

In my experience, patients often express disappointment that their priorities or main concerns may not be being addressed in consultations, and this is particularly noticeable in those who suffer from symptoms that remain invisible. These symptoms could be anything from neuropathic pain, speech and language disorders, respiratory deterioration, dysphagia and dysarthria, all of which can be particularly difficult to talk about, or even identify. Because of this, good communication and multidisciplinary intervention are key to address invisible symptoms, and, as is done in the MS in the 21st Century group, it is vital to listen closely to the patient as a source of knowledge about the disease, because they, in their own way, are also experts in Multiple Sclerosis.

There is a lack of intervention in invisible symptoms for several reasons: there may be a lack of time to discuss and understand in detail the variable situations that concern the patient; there may be a lack of understanding or appreciation on the part of neurologists about the significance of the impact of these symptoms on their patients’ quality of life; but there may also in many cases be no treatments available to modify the course of the symptoms. Neurologists working in MS must learn that listening and empathising with the patient is just as vital, and appreciate the importance of having these conversations, even when no clinical intervention is possible. We must strive to make both the symptoms and the patients more ‘visible’.

As a group, MS in the 21st Century has been working for several years with both neurologists who are experts in MS as well as expert MS patients. We work together in a number of different arenas, aiming to improve communication, mutual understanding, and education, all for better MS care internationally. The role of the patient has changed in recent years and it is exciting to bring the patient voice to the fore in this way. The communication tools that have been created by the group I feel are useful in helping to reduce anxiety and disappointment caused by misunderstandings and this is especially important in the context of talking about invisible symptoms this World MS Day.

 

My invisible MS – the patient perspective

Maria Paz Giambastiani talks about what it means to deal with invisible symptoms and how she thinks neurologists could help

There are more than 2.3 million people across the world living with Multiple Sclerosis (MS), and, although 30 May will not be a celebration, it will be a special day for the community, providing a great opportunity to talk about and raise awareness of symptoms, specifically ‘invisible’ symptoms (#MyInvisibleMS), that interfere with patients’ daily lives.

In my experience, patients often express disappointment that their priorities or main concerns may not be being addressed in consultations, and this is particularly noticeable in those who suffer from symptoms that remain invisible. These symptoms could be anything from neuropathic pain, speech and language disorders, respiratory deterioration, dysphagia and dysarthria, all of which can be particularly difficult to talk about, or even identify. Because of this, good communication and multidisciplinary intervention are key to address invisible symptoms, and, as is done in the MS in the 21st Century group, it is vital to listen closely to the patient as a source of knowledge about the disease, because they, in their own way, are also experts in Multiple Sclerosis.

There is a lack of intervention in invisible symptoms for several reasons: there may be a lack of time to discuss and understand in detail the variable situations that concern the patient; there may be a lack of understanding or appreciation on the part of neurologists about the significance of the impact of these symptoms on their patients’ quality of life; but there may also in many cases be no treatments available to modify the course of the symptoms. Neurologists working in MS must learn that listening and empathising with the patient is just as vital, and appreciate the importance of having these conversations, even when no clinical intervention is possible. We must strive to make both the symptoms and the patients more ‘visible’.

As a group, MS in the 21st Century has been working for several years with both neurologists who are experts in MS as well as expert MS patients. We work together in a number of different arenas, aiming to improve communication, mutual understanding, and education, all for better MS care internationally. The role of the patient has changed in recent years and it is exciting to bring the patient voice to the fore in this way. The communication tools that have been created by the group I feel are useful in helping to reduce anxiety and disappointment caused by misunderstandings and this is especially important in the context of talking about invisible symptoms this World MS Day.

 

MS21 patient lead author manuscript reaches 12OO downloads!
March 25, 2019
MS21 patient lead author manuscript reaches 12OO downloads!

MS21 is delighted to announce the success of its most recent publication, debating the pros and cons of shared decision-making in MS care. Developed following a controversial debate between MS patient David Yeandle, and healthcare professionals Prof Dawn Langdon, Prof Gavin Giovannoni and Prof Peter Rieckmann, at the European Charcot Foundation Annual Meeting 2017, ‘Patient Power Revolution in Multiple Sclerosis: Navigating the New Frontier’ has received more than 12OO downloads since its release. This is our first manuscript published with a patient lead author, David Yeandle, OBE.

MS21 patient lead author manuscript reaches 12OO downloads!

MS21 is delighted to announce the success of its most recent publication, debating the pros and cons of shared decision-making in MS care. Developed following a controversial debate between MS patient David Yeandle, and healthcare professionals Prof Dawn Langdon, Prof Gavin Giovannoni and Prof Peter Rieckmann, at the European Charcot Foundation Annual Meeting 2017, ‘Patient Power Revolution in Multiple Sclerosis: Navigating the New Frontier’ has received more than 12OO downloads since its release. This is our first manuscript published with a patient lead author, David Yeandle, OBE.

MS21 at the eyeforpharma patient summit
October 16, 2018
MS21 at the eyeforpharma patient summit

This year, eyeforpharma took a novel approach to their annual conference, handing the reigns over to the patient community to host their patient summit in London, UK, from 16–17 October 2O18. Although patient-centricity is more and more a common theme at healthcare conferences, eyeforpharma recognised that ‘they are all run with one basic assumption: that pharma companies know what patients want, and that pharma companies should set the agenda’. They recognised that it takes hearing and broadcasting the patient perspective first hand to ultimately drive change.

This summit attracted over 250 attendees from the pharmaceutical industry and healthcare community, all engaged over a common theme:

‘If you don’t partner, patient centricity will never become more than just an idea’

MS in the 21st Century has represented a collaboration of HCPs and people with MS for almost 3 years now, pioneering patient engagement in MS, and so on 16 October this year, MS21 presented at the eyeforpharma patient summit for the first time and received a fantastic response to the initiative’s work and goals.

David Yeandle, OBE (Patient Steering Group member) and Vanessa Pott (Merck KGaA, Darmstadt, Germany) spoke to a full room about the mutual benefits of collaborative initiatives, and presented MS21’s original data and communication tools, MyMS Priorities and MyMS Commitments. There was fantastic engagement from the audience, with the highest question rate of the conference, and multiple requests for copies of the MyMS documents. To find out what all the buzz is about, download our tools from our resources page.

MS21 at the eyeforpharma patient summit

This year, eyeforpharma took a novel approach to their annual conference, handing the reigns over to the patient community to host their patient summit in London, UK, from 16–17 October 2O18. Although patient-centricity is more and more a common theme at healthcare conferences, eyeforpharma recognised that ‘they are all run with one basic assumption: that pharma companies know what patients want, and that pharma companies should set the agenda’. They recognised that it takes hearing and broadcasting the patient perspective first hand to ultimately drive change.

This summit attracted over 250 attendees from the pharmaceutical industry and healthcare community, all engaged over a common theme:

‘If you don’t partner, patient centricity will never become more than just an idea’

MS in the 21st Century has represented a collaboration of HCPs and people with MS for almost 3 years now, pioneering patient engagement in MS, and so on 16 October this year, MS21 presented at the eyeforpharma patient summit for the first time and received a fantastic response to the initiative’s work and goals.

David Yeandle, OBE (Patient Steering Group member) and Vanessa Pott (Merck KGaA, Darmstadt, Germany) spoke to a full room about the mutual benefits of collaborative initiatives, and presented MS21’s original data and communication tools, MyMS Priorities and MyMS Commitments. There was fantastic engagement from the audience, with the highest question rate of the conference, and multiple requests for copies of the MyMS documents. To find out what all the buzz is about, download our tools from our resources page.

MS21 at the eyeforpharma patient summit

Get involved

MS in the 21st Century is proud to base all of its work on original data and insights collected from real people in the worldwide MS community.

If you are a person with MS, a healthcare professional involved in MS care, or a caregiver or family member, please take one of our surveys to help shape future MS in the 21st Century programs.

Get involved

MS in the 21st Century is proud to base all of its work on original data and insights collected from real people in the worldwide MS community.

If you are a person with MS, a healthcare professional involved in MS care, or a caregiver or family member, please take one of our surveys to help shape future MS in the 21st Century programs.