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.
On 19 March, BBC Breakfast featured a short piece on a HSCT trial with relapsing remitting multiple sclerosis (RRMS) patients taking place in Sheffield. It provoked a strong reaction from the MS community and a lot of questions, so we’ve tried to answer some of them…
What is it and how does it work?
A variety of clinics and hospitals across the world, including Sheffield and London are trialling and practicing HSCT treatment.
This particular Hematopoietic stem cell transplantation (HSCT) trial, which has been taking place in Sheffield, America, Sweden and Brazil, involves the patient having stem cells extracted from their bone marrow. Next they are given chemotherapy treatment, which strips back their immune system to almost that of a baby and then the healthy stem cells are transplanted back into their body.
The trial was set up to test the efficacy of HSCT treatment versus FDA approved MS drugs, such as interferon, glatiramer acetate, mitoxantrone, natalizumab, fingolimod, or tecfidera.
Just over 100 patients have taken part in the trial, in hospitals in Chicago, Sheffield, Uppsala in Sweden and Sao Paulo in Brazil.
Scientists conducting the research claim they have made a significant breakthrough with this type of treatment in patients with highly active relapsing remitting multiple sclerosis (RRMS).
Patients received either HSCT or drug treatment. After one year, only one relapse occurred among the stem cell group compared with 39 in the drug group.
After an average follow-up of three years, the transplants had failed in three out of 52 patients (6%), compared with 30 of 50 (60%) in the control group.
Those in the transplant group experienced a reduction in disability, whereas symptoms worsened in the drug group.
The interim results were released at the annual meeting of the European Society for Bone and Marrow Transplantation in Lisbon.
Click here to read the study’s abstract - Hematopoietic Stem Cell Therapy for Patients With Inflammatory Multiple Sclerosis Failing Alternate Approved Therapy: A Randomized Study.
What is the inclusion criteria?
Participants have to be aged 18-55 and have a clinically defined MS diagnosis using the revised McDonald criteria.
Their Expanded Disability Status Score (EDSS) should be 2.0 to 6.0.
The must show inflammatory disease despite treatment with standard disease modifying therapy, including at least six months of interferon or copaxone.
Inflammatory disease is defined based on both MRI (gadolinium enhancing lesions) and clinical activity (acute relapses *treated with IV or oral high dose corticosteroids and prescribed by a neurologist). Minimum disease activity required for failure is defined as: a) two or more *steroid treated clinical relapses with documented new objective signs on neurological examination documented by a neurologist within the year prior to the study, or b) one *steroid treated clinical relapse within the year prior to study and evidence on MRI of active inflammation (i.e., gadolinium enhancement) within the last 12 months on an occasion separate from the clinical relapse (three months before or after the clinical relapse).
A steroid treated relapse will include a relapse that was severe enough to justify treatment but due to patient intolerance of steroids, or a history of non-response to steroids, they were offered but not used.
More information about inclusion and exclusion criteria can be found here.
Can I get on the trial?
Unfortunately you cannot. This is because although the trial is still active they are not recruiting.
Will it really be available on the NHS within a few months?
Dr Susan Kohlhaas, director of research at the MS Society, said the stem cell transplant HSCT "will soon be recognised as an established treatment in England”, but will it?
While this is a phase III trial testing the efficacy of the HSCT, which will be incredibly significant when it comes to gaining licensing approval, the treatment has only been formally assessed for use in the NHS within clinical trials.
There will also be a few more hoops to jump through, such as gaining approval from NICE (The National Institute for Health and Care Excellence). Although NICE does now have a fast track criteria, which enables certain drugs and treatments with the right evidence to pass through the system much quicker than we have seen in the past. Cost will almost definitely be a deciding factor. HSCT comes with a price tag of £30,000, but there are already some approved DMTs with a similar costing available to patients, so this could help justify the expenditure, especially if the treatment can halt the MS for a long period of time. We should also be mindful that a higher price point can often lead to drugs and treatments being allocated to minorities with strict criteria, rather than being rolled out for everyone.
When does the trial end?
The trial is still ongoing and its estimated end date is December 2018.
Is it really a “game changer”?
Well, it’s a great step forward for people with RRMS and it does mean there is a potential highly-successful treatment that could halt MS in its tracks on the horizon.
However, HSCT treatment in secondary and primary progressive patients doesn’t tend to be as effective and you tend to see less improvement in disability because the nerve damage by this point has become permanent.
There are still a number of questions we do not have the answer to, such as how long does the treatment last?
But maybe the biggest questions of all is if MS is genetic, the person will still have the same gene and what’s to stop the gene being triggered again and the MS returning if we do not know the true cause?
Last week myself and Diana, our Head of Services, visited the Royal College of General Practitioners (RCGP) in London. We were exhibiting at their ‘One Day Essential: Neurology Conference’.
The RCGP offer one day conferences to GPs, providing expert specialist clinical training and essential information. The aim is to help GPs improve their practice and patient outcomes.
There were a number of expert speakers, covering various neurological conditions including Dr Gabriele De Luca, who spoke about multiple sclerosis (MS). Dr De Luca is an Associate Professor and Honorary Consultant Neurologist in the Nuffield Department of Clinical Neurosciences, University of Oxford. He is also the Director of Clinical Neurosciences Undergraduate Education at Oxford Medical School. We were fortunate enough to be able to listen to his talk.
His session was informative, educational and most of all engaging. He explained to his audience more about MS and provided further information to support the delegates in deciding what are potential neurological symptoms, and when to refer on to neurology. He also discussed ways in which to decide if their patients are having a relapse or not and making the link to the central nervous system.
We had time to chat to the delegates attending the conference and explained how we can help support their MS patients in their day to day living through our services.
It is always nice to attend events where we can chat to people face to face and talk about our work. It was a great opportunity to talk to GPs who are the front line professionals at the start of everyone’s journey and beyond.