How big is your need to exercise?

The evidence that exercise and I mean regular exercise is good for you is so overwhelming that it is hard to argue against the science. What I mean by this is that almost everyone accepts exercise as being good for the general population and for people with MS. The downside is that some MSers are so disabled and/or have so much fatigue that they find it difficult to exercise. I am prepared to accept the latter, but I am not prepared to accept this as a reason not to promote/prescribe exercise to the wider MS community. The question I have ‘Is how do we get MSers and healthcare professionals (HCPs) to exercise regularly?’



Are you interested in hearing more about what you can do?


The review below argues for applying behaviour change theory in the design of exercise programs and promotion efforts. How about making it a challenge? Can you walk? Can you run? 

In collaboration with the MS Trust, we are proposing starting a national exercise challenge/competition to get the MS community walking and running. We are proposing to use the Parkrun platform. Parkruns are 5km runs that are held each Saturday in a local park near you and allow you to complete 5km and log an official time. The challenge is to get every MS team in the UK, and possibly the world, to sign-up for the challenge and collect 5km runs. The team with the most Parkruns after a certain period of time, say a 6- or 12-month period, wins the challenge. 

When I refer to teams I mean all MS stakeholders linked to a particular MS service or team. This would not only include people with MS, but their HCPs, friends and families, MS Society members, ShiftMSers and even Pharma reps. The only rule we would propose putting in place is that a member of a particular MS team can only sign-up for one team. Another idea is to combine Parkrun effort with a fundraising campaign for the MS Trust. However, the fundraising would be voluntary and not necessary for participating in the challenge. 

I have suggested to the MS Trust that they create an annual Parkrun award for the team who wins the challenge and for the individual who completes the most Parkruns in the predefined period of time. Please note you can only really do one ParkRun a week and special one held on Christmas day and New Year’s day. 

Do you think this is a good idea? If yes, what should we call the challenge? With my bias, I would say #ThinkRunning. Or what about ‘The Running and Proud MS Trust ParkRun Challenge’?

I know the naysayers will be saying, but I can’t run. I know there are some of you who can’t run but then there will be others who are simply deconditioned (the medical term for unfit). For you, I would suggest starting the ‘couch to 5K’ programme that is designed to get you off the couch and running 5km in just nine weeks. The plan involves three runs a week with a rest day in between and a different running schedule each week. The NHS is promoting this using an app developed by the BBC, the programme or app builds you up gradually with a mix of running and walking.



The good thing about making this initiative into a challenge is that it builds teams (people are competitive) and it will increase social participation. Theis will, in turn, enhance social capital, which should improve outcomes as well. 

We have already had a discussion with one of Parkrun’s MS ambassadors and the MS Trust and they are very supportive of this initiative. Are you willing to give it a go? Please let us know even if it is helping with the naming of the challenge. Without your help, this won’t happen. 

Let’s Do It! 

Thank you. 



Motl et al. Promotion of physical activity and exercise in multiple sclerosis: Importance of behavioral science and theory. Mult Scler J Exp Transl Clin. 2018 Jul 9;4(3):2055217318786745.

There is an obvious disconnect between evidence of benefits and rates of participation in exercise and physical activity among people living with multiple sclerosis (MS). We propose that the problem with exercise behavior in MS (i.e. lack of broad or increasing participation by people with MS despite evidence of meaningful benefits) might be ameliorated through the inclusion of behavior change theory in the design of exercise programs and promotion efforts, as has been undertaken in other populations such as breast cancer survivors. This paper reviews Social Cognitive Theory as an example approach for informing interventions for increasing exercise and physical activity behavior outside of MS and provides an overview of current knowledge regarding the application of this theory for physical activity in MS. We then outline future research necessary for informing trials that design, implement, and test theory-based interventions for physical activity promotion in MS. If theories of behavior change are adopted for informing exercise and physical activity research in MS, we can take a major step forward in addressing the problem of exercise and physical activity participation that has plagued the field for more than 25 years.

CoI: I am a runner, albeit one with a failing right hip

The consequences of Britain’s heatwave for MSers is profound

 

How are you tolerating the heat? One patient after another in my MS clinic yesterday complained about heat sensitivity, worsening fatigue, pseudo-relapses (heat-induced intermittent symptoms) and difficulty sleeping. How are you coping; do you have any advice for your fellow MSers?
 
London feeling the effects of global warming.



Please note that the main consequences of a raised body temperature in demyelinated, or remyelinated, pathways is slowed conduction. The commonest example is exercise-induced fatigue, but this summer’s heatwave is causing symptoms without the need for exercise. Some MSers are finding walking difficult; their legs begin to drag minutes into walking rather than after 20-30 minutes. One patient has noticed blurring of vision mid-morning when in the past this would only happen in the late afternoon. The reason for this is that those demyelinated segments in the nerve stop conducting due to conduction block induced by a slight rise in temperature affecting the functioning of the sodium channels. These are the molecules in the membranes of nerve cells that transmit the electrical signal down a nerve fibre, which require energy to work. These ion pumps are optimised to function at a certain temperature and explains why MSers are heat sensitive.

I assume you have heard of Uhthoff’s phenomenon. Wilhelm Uhthoff (1853-1927) was a famous German Professor of ophthalmology who described temporary visual loss associated with optic neuritis linked to physical exercise. This was later found to be caused by a rise in body temperature. This phenomenon is now known to affect other neurological systems as well; for example, the motor system when walking, balance and sensory pathways and even the cognitive centres.

Apart from cooling, we have not had a treatment for Uhthoff’s phenomenon. More recently the drug Fampridine has been licensed to improve walking speed in MSers. Interestingly one of the patients I saw yesterday volunteered that since starting fampridine a few weeks ago his heat sensitivity had improved.

 
 

Goodman et al. Sustained-release oral fampridine in multiple sclerosis: a randomised, double-blind, controlled trial. Lancet. 2009 Feb 28;373(9665):732-8.

Symptomatic treatments and behavioural & environmental therapy (cooling) have been the mainstay of treating MS-related heat sensitivity. Having a drug to treat conduction block is, therefore, welcomed. However, I remain sceptical about their long-term effectiveness which is why we need effective remyelination therapies. Remyelination therapies should also be neuroprotective preventing or slowing down the degeneration of nerve fibres that have been left vulnerable by demyelination.

CoI: Multiple

Pre-natalizumab vs. after-natalizumab

I view MS as having two eras, the pre-natalizumab era and after-natalizumab era. Natalizumab has been a transformational therapy for so many reasons and this study provides a little more evidence to support this position. 


I have always said that flipping the pyramid is the best way to maximise outcomes for a population of MSers. This study shows that MSers on high-efficacy DMTs are much more likely to work and when they do work their work is more productive. 

The Australians, where this study was done, are fortunate to have all high-efficacy DMTs 1st-line. Their healthcare system leaves the decision-making up to the HCP and patient and they don’t prescribe strict rules. If I had MS I would want to be living in Australia. 

This study also supports my demand to Biogen to please get the EMA marketing authorisation for natalizumab changed; we need it first-line for MSers who are JCV seronegative. Please! 


Chen et al. Effects of multiple sclerosis disease-modifying therapies on employment measures using patient-reported data. JNNP 2018; http://dx.doi.org/10.1136/jnnp-2018-318228

Background: The direct comparative evidence on treatment effects of available multiple sclerosis (MS) disease-modifying therapies (DMTs) is limited, and few studies have examined the benefits of DMTs on employment outcomes. We compared the effects of DMTs used in the previous 5 years on improving the work attendance, amount of work and work productivity of people with MS.

Methods: The Australian MS Longitudinal Study collected data from participants on DMTs usage from 2010 to 2015 and whether DMTs contributed to changes in employment outcomes. We classified 11 DMTs into three categories based on their clinical efficacy (β-interferons and glatiramer acetate as category 1; teriflunomide and dimethyl fumarate as category 2; fingolimod, natalizumab, alemtuzumab and mitoxantrone as category 3). Each DMT used by a participant was treated as one observation and analysed by log-multinomial regression.

Results: Of the 874 participants included, 1384 observations were generated. Those who used category 3 (higher efficacy) DMTs were 2–3 times more likely to report improvements in amount of work, work attendance and work productivity compared with those who used category 1 (classical injectable) DMTs. Natalizumab was associated with superior beneficial effects on patient-reported employment outcomes than fingolimod (RR=1.76, 95% CI 1.02 to 3.03 for increased work attendance and RR=1.46, 95% CI 1.02 to 2.10 for increased work productivity).

Conclusions: Those using the higher efficacy (category 3) DMTs, particularly fingolimod and natalizumab, reported significant increases in amount of work, work attendance and work productivity, suggesting they have important beneficial effects on work life in people with MS.

ProfG    
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Guest Post: teenage girls and smoking

Barts-MS often takes in school students for work experience. We ask some of the students to take on small projects and to write reports. One of our research programmes is to prevent MS. Smoking is an important risk factor for developing MS; smokers have an approximately 50% higher risk of developing MS.



A large and increasing problem in the UK is teenage smoking, particularly amongst teenage girls. We, therefore, asked Amy Sankey, one of our work experience students, to explore this issue amongst her peers at her school. 

The following is Amy’s survey and report back. We were very impressed with Amy’s commitment and attitude and sincerely hope she achieves her aim of getting into her University of choice to study chemistry.  



Survey Summary

A survey was conducted into the level of knowledge teenage girls had of autoimmune diseases and the impact of smoking on the risk of MS. The goal was to determine whether attention should be directed to campaigns on reducing levels of smoking in girls. To this end, they were also asked how much of an impact they felt this knowledge had on them personally and how much they felt it would impact others.

The results of the survey show that teenagers are much less aware of how smoking increases the likelihood of MS than of the other consequences. Almost everyone (97%) is aware of the increased likelihood of lung cancer from smoking. However, fewer than a third of teenage girls knew that smoking increases the likelihood of MS. There was also a significant lack of understanding of what MS or even autoimmune disease in general. These limitations of current knowledge mean that it is worthwhile in increasing campaigns which targets high school age students to increase their knowledge of both the risk posed by smoking and the dangers of smoking in relation to developing MS. The responses given show that at least some students have found this information to have an impact on them personally. The majority think it will have at least some impact on levels of teenage smoking in general.

It is therefore concluded that some form of a targeted campaign is launched within schools or to the general public to highlight the particular dangers of smoking in relation to developing MS. Many teenagers are now desensitised to hearing about how smoking causes cancer. Descriptions of the particular symptoms of MS and how these affect their lives may therefore have more of an impact than continuing to highlight the general dangers as is done currently. The results of the survey also showed that students with a greater level of knowledge about MS and also those who have a personal connection to a pwMS are less likely to consider smoking. Girls have a higher risk of MS than boys but the findings may also be applicable to boys. The overall goal is to reduce levels of teenage smoking in general.

The following is a detailed analysis of the results of the survey and suggestions for campaigns :



To conclude, the survey showed that teenagers currently have limited knowledge of MS as a disease and of how smoking impacts the likelihood of MS. There is also direct evidence from the survey that increased knowledge of MS as a disease and of these risks does discourage teenage girls from smoking, and therefore we can conclude that campaigns to increase awareness of both of the areas would be a worthwhile investment.

BIOGRAPHY



Amy Sankey is a 17-year-old student at North London Collegiate School who is planning on studying Chemistry at university. She is studying Higher Level Biology and Chemistry as part of her IB course. She undertook work experience with Professor Giovannoni last summer and has then carried out a survey into student knowledge of autoimmune diseases at her school, in order to work out how best to raise awareness of the risks of smoking in relation to MS and how to reduce levels of teenage smoking.

NHS@70: postcode prescribing and doing something about it

Today is the NHS’ 70th Birthday. Happy Birthday we love you! 



We know you are the best value for money health service in the world and that you try your best with limited resources. We want to pledge our support for you and help you make the next 70 years even better. 


At your heart you espouse several principles that are worth remembering and fighting for: 

1. Healthcare is a basic human right
2. Healthcare should be equitable; no matter who you are you should have access to the same level of care
3. Healthcare should be free at the point of access. 

We know your principles are being eroded and people with MS (pwMS) have highly variable access to care across the UK. Variance in MS Services, for example, access to and the prescribing of disease-modifying therapies, have been well documented by the MS Society, MS Trust and the Royal College of Physicians. This has been backed up by new data presented at the recent ABN meeting in Birmingham from the NHS England’s Bluteq database. 


We and others feel this is a problem for pwMS and is a barrier to improving MS outcomes. To address this problem we are holding a meeting of representatives from MS DMT prescribing centres across England and the UK. The aim of the meeting is to generate ideas and proposals to address and solve this problem. We envisage holding subsequent follow-on meetings to implement and test potential proposals developed as a result of this meeting. 


We have included the draft programme for discussion. If you have any suggestions please feel free to comment. Thank you. 




You can register for the meeting online. Please note that this is a closed meeting and due to limited resources we are limiting attendance to representatives from MS prescribing centres in the UK. Each centre can only send a maximum of 2 representatives. 

MS Brain Health newsletter – June 2018

Dear supporters 
Over the past month, we have presented MS Brain Health research at major conferences in Europe, the USA and Australia and learned more about the experiences of people living with MS in the USA. It has been great to meet some of you in person at these events, and we are pleased to welcome many new supporters!

Consensus standards presented at EAN 2018 
International consensus standards for the timing of key stages in MS care were presented in our focused workshop, Brain Health in MS: a catalyst for a new approach to management, at EAN 2018 in Lisbon this month. Over 150 attendees joined this interactive workshop and gave their responses to the new quality standards.
Professor Gavin Giovannoni, Dr Gisela Kobelt and Professor Jeremy Hobart gave presentations and participated in a lively Q&A session. “The standards should not be used as a means to criticize MS teams, but instead provide an opportunity for every MS clinic to strive for the highest level of care,” stressed Professor Hobart.
Read more
Latest MS Brain Health presentations available to download
Professional organizations in Australasia endorse the policy report
MS Nurses Australasia and the MS Neurology subspecialty group of the Australian and New Zealand Association of Neurologists have become the latest professional groups to officially endorse the policy report, Brain health: time matters in multiple sclerosis. We’re delighted that these groups have joined our other 46 endorsers.
Revisions to criteria used in the diagnosis of MS
Motivated by recent technological advances and new data on the diagnosis of MS, experts have refined the 2010 McDonald criteria – the widely used diagnostic criteria for MS. The experts hope that the updated criteria will facilitate early and accurate diagnosis of MS.
Read more
New! Dutch translations of short guides
We are delighted to announce that our guide for people with MS and nursing resource are now available in Dutch. Follow the links above, click ‘Download’ and select your language.

Please do share these resources with your Dutch-speaking colleagues and friends.

You can follow us on Twitter @MSBrainHealth to keep up with the latest news. Thank you for your continuing support!
Gavin Giovannoni, MD

Professor of Neurology and Chair of the MS Brain Health Steering Committee

On behalf of the MS Brain Health Steering Committee: Gavin Giovannoni, Peer Baneke, Helmut Butzkueven, Jodi Haartsen, Jeremy Hobart, Gisela Kobelt, Christoph Thalheim, Tony Traboulsee, Tim Vollmer and Tjalf Ziemssen
 

If this newsletter has been forwarded to you,
click here to subscribe to future issues.

Follow @MSBrainHealth on Twitter

Having trouble viewing the content of this post? View this post in your browser
MS Brain Health activities and supporting materials are funded by grants from Actelion, Celgene and Sanofi Genzyme and by educational grants from Biogen, F. Hoffmann-La Roche and Merck KGaA, all of whom have no influence on the content.

Editorial and administrative support for the MS Brain Health initiative is provided by Oxford Health Policy Forum, a not-for-profit community interest company registered in England and Wales (registration number: 10475240).

MS in the courtroom

We have made the case in the past that one of the ways healthcare professionals will begin to treat MS more actively is via the courts. In the meeting below we will be presenting a hypothetical case scenario of a patient who lost brain due to a delay in diagnosis and a delay in accessing a highly effective treatment. The consequences for this individual were profound and he is now suing the NHS and his neurologist for loss of earnings. 

The main purpose of the meeting is to review the evidence for treating MS early and effectively, i.e. applying all the management and treatment principles captured in our ‘Brain Health: Time Matters in MS’ policy document. The real value of this meeting for HCPs is not DrK and myself discussing the scientific or medical rationale for this strategy, but the legal perspective, in particular, the variance is MSology practice. When do you become an outlier, either an under-treater or an over-treater, and when do you expose yourself to a legal challenge from your patients?

If you are a card-carrying HCP you are welcome to attend. Due to ABPI rules, MSers can’t attend.  Tickets are limited and are being allocated on a first come first serve basis.  


THE EMBEDDED INVITATION HAS HAD TO BE REMOVED AS IT IS FOR HEALTH CARE PROFESSIONAL EYES ONLY. 


IT IS  QUITE AMAZING BUT THE ABPI GUIDELINES DON’T ALLOW PHARMA TO COMMUNICATE WITH PEOPLE WHO HAVE MS DIRECTLY. 


IF YOU ARE AN HCP AND NEED MORE INFORMATION PLEASE CONTACT ME BY EMAIL. THANK YOU.
ProfG    
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Walking-the-talk or not-walking-the-talk

You may know by now that ‘The Dream Team‘ completed the 3-peaks challenge in less than 24-hours yesterday. Well done. Their aim was to raise more than £5,000 for the MS Society. The MS Society is a remarkable organisation; an organisation the wider MS community could not manage without. They not only look after their members locally but take on very important national tasks such as lobbying, advocacy, education, setting the research agenda and supporting research. The MS Society, therefore, needs your support. If you haven’t done so already can you please help and make a small donation, it would be greatly appreciated? 

The Dream Team



I was planning to do the final peak with my crumbling hip, but my family won out. I had to stay in London to be around for my youngest daughter’s 18th Birthday Party. When your youngest child turns 18 and becomes an adult you realise you are a little bit further along life’s journey and when I set the next challenge to raise money for the MS Society later this year I will need to take age into account. Any suggestions? 

ProfG    
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News: NICE approves ocrelizumab

NICE considers ocrelizumab to be less effective than alemtuzumab. 



People with relapsing-remitting MS can only be treated with ocrelizumab if alemtuzumab is contraindicated or otherwise unsuitable. The latter is a very grey area and will be open to interpretation. My question is how does patient choice taken into account? NICE clearly does not think this is a priority; for NICE cost-effectiveness trumps patient safety and choice.


This appraisal does not refer to the primary progressive indication. If you think ocrelizumab has had a hard time in RRMS it is going to have an even harder time in PPMS. 



ProfG    
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Happy Anniversary Prof G

It is 25 years to the day that I arrived in London to start my PhD on body fluid biomarkers in MS. 



What has changed in the last 25 years?



I am still into MS body fluid biomarkers and I am fortunate to have been one of the innovators, and early adopters, of using neurofilament light chain levels in MS clinical practice. NFL is making a big difference and will almost certainly change the way we practice. I predict peripheral blood NFL levels will become the MSologist’s equivalent to CRP in rheumatology.

In the last 25 years, I have witnessed a transformation in MS care from one in which we had no DMTs to one in which we have so many options. Even HSCT is back on the table. When I did due diligence on setting up an HSCT treatment programme at the Royal Free back in 1999 I decided it was too risky; back then the mortality rate was close to 5%. Now the mortality is below 1% and closer to 0.3%-0.5% in low-risk subjects. Many of my colleagues now put HSCT on the table as a treatment option, with many UK centres beginning to use it in everyday practice. I anticipate us getting the necessary funding to run our head-2-head study of HSCT vs. Alemtuzumab so that we will be able to present the risk and benefits of these two treatment options to pwMS.

Other important innovations have been the adoption of the early effective treatment paradigm, treat-2-target of NEDA, rapid escalation and flipping the pyramid. I have also seen the ushering in of the immune reconstitution therapies and have started to participate in the debate of what an MS cure may look like. We are now looking beyond NEDA to the ambitious target of treating MS to maximise lifelong brain health. 


I have seen the concept of combination therapy strategies begin to gain traction with several trials underway to target neuroprotection, remyelination and neuro-restoration. The holistic management of MS movement is now the norm, which not only focuses on MS-specific disease mechanisms but also addresses comorbidities and lifestyle factors.

We are looking beyond the relapsing phase of MS and have a licensed treatment for primary progressive MS and potentially another for secondary progressive MS. We are starting a new PPMS trial that aims to protect hand and arm function in pwMS who are already using wheelchairs. A lot of us are pushing for MS to go back to being one and not two or three diseases.

But what has revolutionised the field of MS the most in the last 25 years has been the democratization of knowledge and the emergence of social media as a forum to empower people with MS. No longer do neurologists control knowledge. People with MS are now true partners. The inevitable downside of social media has been the spread of anti-science movements. At least the latter has nudged neurologists and other healthcare professionals to join the debate and to start using social media to communicate with their patients.

My big disappointment is the fact that we haven’t started MS prevention trials. This is despite us have good evidence that EBV is likely to be the cause of the disease. However, this is a challenge I look forward to tackling in the next 25 years. What I am very proud of is our patient and public engagement programmes to raise awareness about the issue of MS prevention.

I feel privileged to be part of such a golden era in the history of both London and the field of MS and to have worked with such dedicated people at the Institute of Neurology and now at Barts and The London.

From a personal perspective, I am obviously older and I think a little wiser. I have two grown-up daughters and I am still happily married to my wife of 32 years. I am still running, albeit shorter distances and less often, and I have taken up gardening. I am also trying to walk-the-talk and to live a brain healthy lifestyle; in particular, eating real food. I admit I feel better for it and would recommend it to everyone.

I now identify myself primarily as a Londoner with a waning South African identity, which saddens me a bit. I often cry for my beloved country and miss my mother and siblings and many other things about my homeland. Maybe one day I will become a swallow and return more regularly. As for British politics, I feel European and doubt I will lose this identity any day soon. I have too many continental friends and colleagues who shape my worldview.

Here’s to wishing myself happy anniversary and to the next 25 years as a Londoner!