I am thrilled to share a sneak peak into the latest issue of New Pathways magazine, which is out now!
Our cover star this issue is MSer and HR Specialist Rebecca Armstrong, who discusses being your own boss and taking a step into self-employment on page 16.
On page 24-25, wellness coach and Director of Work.Live.Thrive Zoe Flint discusses how relaxation can help boost your immune and central nervous systems. This feature all about mindfulness for MS shares Zoe's insights and her top 5 things to get your started.
Also, MSer and Feature Writer Ian Cook reveals his first-hand experience of becoming a carer. Ian says, 'It may sound strange to say this but I believe being disabled is, in many ways, the perfect qualification to care for another disabled person.' Read the full article on page 12, and don't forget to check out his 'revisited' article on page 42 all about Shopmobility.
Fats have once again been dominating the news of late, so we asked MSer and Nutritional Science Researcher Sharon Peck to reveal the truth and explain what we really need to know on page 19. We also take a look at the natural remedies lurking in the back of your kitchen cupboard that could help relieve MS symptoms on page 18.
If you would like to see something specific in New Pathways please email me and let me know your thoughts or feedback.
Editor, New Pathways
In the task, you will be presented with fifty short descriptions of different scenarios. This will be split into ten blocks of five, with a rating task after each block.
Using a 4-point scale, the researchers would like you to rate how similar in meaning each sentence is to the description that you read with that title. The ratings will be used to inform the materials for tasks, and it’s completely anonymous.
You can do the task online using this link: https://kcliop.eu.qualtrics.com/jfe/form/SV_5cAkSnZHlxPZ1nT
Chew’s research is focusing on identifying the cognitive mechanisms which underpin and maintain anxiety surrounding illness uncertainty within MS. Jowinn Chew is supervised by Dr Colette Hirsch and Prof Rona Moss-Morris.
This issue of New Pathways magazine is jam packed full of a variety of news, features and real life stories. Start your read by catching up on all the latest developments in MS on pages 4-10. Then why not discover nine anti-inflammatory foods that could benefit your diet and MS on page 34.
Next we take a look at how a condition that predominantly affects women, actually impacts men on page 12. And on pages 30 and 32 MSer and feature writer Ian Cook revisits Access to Work and gives electric wheelchairs a spin.
Stem cells research and personal stories are still dominating the news, so we thought we would produce an update on this ever popular treatment option on page 24.
Also in this issue, MSer and HR Specialist Rebecca Armstrong explains how to get the best out of occupational health on page 16, we take a look at the therapeutic benefits of horse therapy on page 18, and Rosalind Barton reveals the highlights of her surprisingly accessible trip to Singapore.
Editor, New Pathways
This year, MS-UK will be coming to the end of our current Strategy, and right now we're exploring what we should focus on in the next three years. But we need your help to get it right, and make sure that the wider MS community is included every step of the way!
Please take our short survey today and let us know what barriers you face to feeling happier and healthier in your life with MS. Perhaps you feel there is a vital MS service missing? Maybe you believe MS-UK could raise awareness of multiple sclerosis among the general public? We'd like to know your opinions, and use your voice to shape our work in the next three years.
Your voice matters. Thank you for sharing it with MS-UK!
As part of World MS Day 2018 on 30 May, Healthcare Fieldwork are recruiting people living with MS who use either a RebiSmart or Betaconnect to take part in market research. The Cambridgeshire based company are in the early stages of developing a new medical device for people to administer medication to help manage their MS. Their aim is to make all new devices safer and easier to use.
Participants will take part in an hour long interview - either at their viewing facility in Sawston, Cambridge, at home, or in suitable local venue - and will receive £80 for their time. No medication will be involved.
If you are interested in taking part please email Nicola at Healthcare Fieldwork or call 01223 855066.
Fatigue is reported to be one of the most common and debilitating symptoms of multiple sclerosis. It can be described as exhaustion, a lack of energy, or an overwhelming tiredness which can occur at rest.
Scott Rooney, PhD student at Glasgow Caledonian University, is conducting a survey to help understand how fatigue is experienced by those living with MS and is looking for diagnosed adults (aged 18 or over), with or without fatigue, to take part. The knowledge gathered from this survey will be used to help assess and develop treatments designed to improve fatigue in those living with MS.
Last month, Prof Dawn Langdon wrote a post about a research study her group are carrying out, looking at how some of the ‘invisible symptoms’ of multiple sclerosis (difficulties with attention, concentration and memory) impact employment for people with MS. The study uses a new computer task (non-immersive virtual reality) which simulates an office environment.
The study has been up and running for a few weeks now and it’s been great to see that so many people with MS have been interested and keen to take part. I personally have been rather touched by the willingness of people with to participate. The study is ongoing, there is still time to take part.
One unexpected outcome is having people from our healthy control group tell us that they have learnt more about MS through completing questionnaires about employment and MS symptoms. We’ve also presented the study design to other Trainee Clinical Psychologists who equally felt that they had learnt more about MS. Perhaps in addition to finding out more about the relationship between our complex thinking skills and employment in MS, we can also raise a little bit more awareness about what people with MS experience.
We have not finished recruiting and are still looking for people with relapsing remitting multiple sclerosis to take part, so please get in touch if you are in the London area and are interested in participating. The study should take no more than two hours and involves doing the computer task, quizzes and puzzles and filling in questionnaires about employment, mood and coping.
For further details, please contact Laura Clemens, Trainee Clinical Psychologist, via email or by calling 07707 207922.
More than two million people worldwide live with MS, of which 2-3 times more are women than men, and the condition is the leading cause of neurological disability among young adults. So what is their prognosis?
'We don’t really know what an individual’s prognosis will be when we first diagnose the disease,' relates Dr. Adi Vaknin, Senior Neurologist at Hadassah Hospital Ein Kerem. 'That is because there is so much heterogeneity in outcomes.'
While 15% - 20% of MS patients do very well, 50% - 70% need strong medicines to live a quality life. It is this uncertainty that has led Dr. Vaknin to start a biobank to study clinical outcomes for newly diagnosed patients. By identifying a set of proteins (biomarkers) within an individual’s peripheral blood, Dr. Vaknin and her research team have been able to predict, for example, a patient’s response to interferon, a common treatment for MS.
The past 15 years have seen the development of some very effective MS medications. Currently, Dr. Vaknin reports, there are 10 medications available, but their effectiveness varies from person to person. 'There is also a limited time window to start treatment. If you miss that window, some of the medicines are not very effective.' she says. There are, however, 2 new medications on the market specifically designed to treat progressive MS.
One common thread in MS is the degeneration of myelin, the sheath that protects the nerve fibres. Dr. Vaknin is researching the ability of certain proteins, found in the fluid surrounding the brain, to renew damaged myelin. Being able to rebuild myelin in MS patients is only in the research stage, although she estimates that 'it will happen in the next five years.'
In the meantime, what advice does Dr. Vaknin have for those who are living with MS? She recommends 2,000 units per day of Vitamin D, particularly found to be effective in preventing the occurrence of the disease in any offspring. Dr. Vaknin also suggests exercise, a healthy diet and no smoking. She adds living a less stressful life to the list, but acknowledges that this 'is not so easy to do.'
Download MS-UK’s Disease Modifying Therapies Choices leaflet for more information about all available MS drugs.
Employment is a major challenge for many people with multiple sclerosis (MS) and 50% are unemployed across Europe, even at Expanded Disability Scale Score (EDSS) 3. It is likely that “invisible symptoms” are the reason for this and one of these invisible difficulties can be with memory and concentration – cognition.
Dawn Langdon, Professor of Neuropsychology at Royal Holloway, University of London and her research team are asking for your help. They are recruiting for a study which will investigate how planning, organisation and memory (together called executive skills) affect work performance.
Traditionally, cognitive function is assessed in clinics with paper-and-pencil tasks. Her team are evaluating a non-immersive virtual reality task, which is set in an office. The Jansari Assessment of Executive Function (JEF) has successfully measured executive function in other clinical groups and this is the first study with people with MS.
The study is recruiting 53 people with MS from a number of UK MS charities and 53 matched healthy control participants. Each will complete a set of questionnaires measuring fatigue, mood, cognition, work performance and coping, as well as the JEF. This will require a scheduled interview in central London, which will take a maximum of two hours.
This study will investigate three things: whether the JEF is sensitive to executive function difficulties in the MS population, whether the JEF is more closely related to work place performance in comparison to traditional pen-and-paper neuropsychological tests, and whether the JEF scores are related to coping styles.
The Principal Investigator is Laura Clemens, a graduate psychologist who is currently training to become a clinical psychologist at Royal Holloway, University of London. She is supervised by Dawn Langdon, who is a clinical neuropsychologist and Professor of Neuropsychology at the same institution. The study has ethical approval from the Royal Holloway Ethics’ Committee.
If you would like more information, please contact Dawn Langdon on 01784 443956 or email firstname.lastname@example.org.
Most people with MS recognise the expertise of their doctors and nurses, but somehow feel that there doesn’t seem to be enough time to cover all the things that matter to them and sometimes important things get missed. A group of people with MS and healthcare professionals are working together to improve clinic visits.
The group is called MS in the 21st Century. Many countries are represented and we learn from each other. We meet up a few times a year. We work to improve MS health care by understanding each other’s priorities and modelling partnership between people with MS and health professionals.
We have recently published a paper in a scientific journal which includes authors who have MS and also authors who are health professionals. This is a ground breaking project. The authors have discussed the priorities they have in an MS clinic visit and agreed a list of unmet needs from the viewpoints of both people with MS and health professionals. We have developed the paper jointly. As well as highlighting our different perspectives, we have also made practical recommendations. Our aim is to bridge the gaps between what people with MS and health professionals expect and provide.
We hope that the publication of this paper will be a key step towards ensuring that MS care addresses the expectations, priorities and needs of people with MS. It is vital that we work together to support people with MS to be fully engaged in managing their own condition. The paper emphasises the perspective of people with MS and how essential their involvement is in high-quality MS care.
From my own work as a neuropsychologist, I am particularly concerned to increase understanding of the psychological impact of MS, including cognition, mental health and wellbeing. We need to increase awareness of how these impacts can be recognised and successfully addressed.
Birgit Bauer, another author and a person with MS says, ‘As a person with MS, I cannot overstate the significance of this publication. I am hopeful patients everywhere and their healthcare teams will recognise the need for better communication and partnership with the ultimate goal of more effective and personalised care.’
"Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: a combined perspective from the MS in the 21st Century Steering Group" is published in the peer reviewed journal, Multiple Sclerosis and Related Disorders (MSARD), and is freely available online now. DOI: 10.1016/j.msard.2017.11.013
If you are a person with MS, or are close to someone who has MS, and you are interested to help Professor Dawn Langdon’s team in their work on psychological aspects of MS, please email email@example.com.