A team in the Department of Psychology at the University of Sheffield are investigating the role of self-perceptions in adjustment to multiple sclerosis (MS).
They are inviting people to take part. Some of the topics discussed in the questionnaires include current experiences of stress, the impact of MS on various areas of life, your self-perceptions, and perceived ability to cope with the difficulties associated with MS.
The study consists of two parts; Each part should take no longer than 20 minutes to complete. After the second questionnaire, participants will be entered into a prize draw to win a £50 (or equivalent currency) Amazon voucher.
The results of the study will be written up and submitted as a doctoral thesis as part of the Clinical Psychology Doctorate (DClinPsy) at the University of Sheffield. Additionally, the study will be submitted for publication in a scientific journal. Information regarding individual participants will not be included and participants will not be identifiable from any reports or publications of the study.
The study was reviewed and approved by the University of Sheffield Research Ethics Committee. Some of the topics discussed in the questionnaire may be distressing as they ask about current and past experiences and feelings. Contact information for listening and support services will be provided at the end of the study.
Media lawyer, Mark Lewis, shares his experience of living with MS in the Channel 4 documentary, ‘In search of a miracle cure’. He visits Jerusalem to receive experimental stem cell treatment as part of a trial that could alleviate his symptoms and slow the progression of his multiple sclerosis (MS).
The documentary reflects various aspects of living with MS, including the changes it can bring to one’s lifestyle and the emotional turmoil it can cause. Mark’s perception of his MS is that it is something that he can either win or lose, and he is clear that he is going to win.
How do you view your MS? Do you feel that it is a battle that you’re aiming to win day after day, or is this something that is part of you that you don’t need to fight? Perhaps your MS is benign and does not influence your life? There is no single MS experience and each person might find that their emotional responses vary over time.
There are times when your MS might feel overwhelming and you might be frustrated at not being able to control what is happening to your body. MS can also be exacerbated by stress and lead to life-changing decisions such as giving up work. People sometimes struggle to cope with the reactions of their friends and families. Our counselling service can offer you support.
MS-UK Counselling is a specialised service for people with MS. All our counsellors are BACP registered or accredited and have training in working with people with MS. Our sessions are delivered over the telephone so counselling is easily accessible to everyone. Please see www.ms-uk.org/counselling for further information.
Mark Lewis is the famous lawyer who took down one of the world’s most powerful media moguls, Rupert Murdoch. The show, titled ‘The Search for a Miracle Cure’ is set to air on Thursday 23 November at 10pm.
Filmed over the course of a year with exclusive access, film makers follows the progress of high-profile media, libel and privacy lawyer Mark Lewis as he embarks on revolutionary stem cell trials for multiple sclerosis (MS).
At the age of 25 Mark was diagnosed with MS. There is currently no cure and over the last few years Mark’s condition has worsened.
Now 50, Mark first came to the public’s attention as the lawyer who represented Milly Dowler’s family, and more than 180 hacking victims in the News of the World phone hacking trial – a victory that was followed by the demise of the newspaper. However, stress worsens the symptoms of MS and Mark’s high-profile law career and battle with the tabloids has put his MS on fast forward.
This summer, Mark began a journey into the unknown when he became Patient 31 of 48 in a revolutionary clinical trial, conducted at Hadassah University Medical Center in Jerusalem by Dr Karussis. The trial is working towards finding a way to halt MS in a bid to help Mark and the estimated 2.5 million people with MS worldwide. Its cutting edge science with huge promise and researchers hope findings could positively impact other neurological conditions such as Alzheimer’s and Parkinson’s disease, and for those who have survived stroke.
Mark believes this journey to Jerusalem is his last chance as he says, ‘My life is like an egg timer that the sand’s dripping through and the sand’s nearly finished. I want the Doctors to turn it round for me as I know that if someone doesn’t flip it round, that sand is slipping out.’
Here at MS-UK we’re hopeful yet cautious when people talk of ‘miracle cures’. We’ve read the positive results published so far for this trial and will be sure to tune in to hear Mark’s experience. We would also love to hear your thoughts, simply email firstname.lastname@example.org.
Not everyone has time to visit the news section on the MS-UK website every day (its ok, we forgive you), so here’s a summary of some of the latest developments in MS.
I’ve got a gut feeling
Recently there has been a lot of news regarding gut bacteria, with some interesting studies highlighting how changes to gut bacteria could lead to a possible future treatments for MS.
Reading these stories, I found myself researching the different gut bacteria thinking maybe I should change my diet accordingly, but I quickly realised it’s not that simple.
More research is needed to get to treatment stages, but the signs are encouraging.
Click the stories below to read more about the latest developments.
And with tummies in mind, the latest issue of New Pathways magazine features a four-page feature about the Overcoming MS Recovery Program, one of a few popular diet choices for people with MS. Find out more by subscribing and why not try out the free recipe too?
News for progressive MS
Scientists at Yale University have uncovered two closely related cytokines that may explain why some people develop progressive MS and could lead the way in developing a novel treatment to prevent progressive forms of the condition. Click here to read the news story.
Let’s talk genes
MS is not hereditary, but it is genetic and researchers at the University of Florida Health got everyone talking recently, when they revealed they had found a way to inhibit or reverse MS using a novel gene therapy technique that stops the condition’s immune response in mice.
Of the mice that received gene therapy, 80% went into near-complete remission after having hind-limb paralysis. This is a promising outcome, but more studies are needed.
Bexarotene, a drug that could help the brain regrow myelin in people with MS, has started its phase II clinical trial.
The trial is only open to people with relapsing MS who are currently on a disease modifying therapy (DMT). It will involve 50 people and the first person involved started their treatment in March.
Recruitment is taking place in Cambridge and Edinburgh, but not everyone will be eligible because of other important criteria.
The trial will run for four years to study the long-term benefits for people with MS.
For more information about the criteria for the trial click here. To access the trial you will need to be referred by your GP or neurologist
For more daily MS news, visit the MS-UK website.
New Pathways Editor
This week, the MS Society has called for the legalisation of cannabis for multiple sclerosis (MS) patients. In their report ‘Cannabis and MS. The role of cannabis in treating MS symptoms’, the MS Society explores the benefits of cannabinoids to those affected by pain and spasticity.
Last year, the MS Society revisited their stance on cannabis for medicinal use to better reflect the evidence, opinions and experiences of people with MS.
They conducted a survey of 3,994 people with MS to explore their attitudes and experiences of cannabis. They found that 22% of people surveyed had tried cannabis for medicinal purposes and 7% were still using it. 26% of people who had stopped taking cannabis, did so largely because of concerns over potential prosecution.
The MS Society now calls for all licensed treatments derived from cannabis to be made available to those who need them. They ask that Sativex, which is a medically licensed, cannabis derived treatment for spasticity, be available on the NHS.
They also recommend that people using cannabis to treat their MS symptoms, as a last resort, should not face prosecution, and that possession should not be a criminal offence.
The report states that the MS Society do not recommend that people smoke cannabis, and also caution that some people, particularly those with previous mental health problems, may have an adverse reaction to medicinal cannabis.
Amy Woolf, CEO of MS-UK, says in response to the news, ‘MS-UK welcomes the MS Society’s new stance and their approach of listening to the voices of people affected by MS. We will be interested to follow the progress made by the MS Society in the future on this very important subject.’
In our latest guest blog Christian tell us about his experiences on the MS-SMART trial...
It all began in 2015 when I saw the advert for the trial, I felt a little/lot hopeless with being secondary progressive and not taking any medication to help as at this time there are no drugs to help. I read up on the trial and completed a short survey to check my suitability for the trial, obviously being such a specimen I passed that with flying colours. A phone call follows and I was on. The trial places me on one of three drugs or possibly a fourth being the placebo. The three drugs were Amiloride (used to treat heart disease), fluoxetine (used to treat depression) and riluzole (used in the treatment of motor neurone disease).
The first day of the trial was a trip to London (Queen and everything) for a 9am start at the University College London Institute of Neurology. I was signed up and asked if I could take part in two further parts of research, one was a photograph of the layers of my optic nerve (about 20 minutes, they think they can tell speed of progression from the thickness of the layers) and the other a lumbar puncture. At first I said no to the lumbar puncture as I’m a bit cowardly but after a comment by a doctor and an hour and 18 minutes in an MRI machine I guilt-ed myself into agreeing to do it. The MS Smart trial itself was measured by an eye test with invisible letters, a walk test, MRI, peg board and a few cognition tests. Unlike the tests my neurologist sets me these were some that I actually could do without looking like a total drunk and even one that I was very good at scoring 56, 58 and finally 60 out of 60 so improving each year.
It was a long day and I think I drove home early evening. I had to return every month for a blood test and to pick up my tablets, after 6 months it reduced to every 3 months and after a year every 6 months. I live in Maidstone, Kent so it was a real day out in London for me. The tests were repeated after 1 year and on completion (2 years). In my naive mind I thought I would find out what drug I’d been taking for 2 years on my last visit but the last person does not finish their 2 years until April 2018, the results then take at least 6 months to work out so it could be 2019/20 before I find out. The nurses that took my blood and checked my tablets were fantastic, even Tiggy who made me scream like a howling banshee doing me a favour using a big needle to save time on taking blood as she needed extra. Ouch.
If I had the chance of doing it all again I would, the only real problem I had was relating to the second lumbar puncture which left me with a headache like brain freeze that lasted for a full week. I felt low after finishing my two years and the stopping of the tablets I was on, this is either a side effect of stopping the tablets or more likely just a feeling of no longer trying to stop my multiple sclerosis, I don’t like having no control.
The outcome of the trial was never to fix me but to delay or even halt the progression. I feel the same but progression is so slow I didn’t notice playing football one day to today bouncing off walls .
They are about to embark on a new trial using Statins, I was asked if I would like to do that too. We will see…
You can find out more about the MS-SMART trial on the MS Society website at www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/ms-smart. Please note that this is an external site.
In this guest blog Kristy-Jane Martin gives details of a new study looking into the effects of caring for someone with MS.
Research and clinical experience has shown that some carers of people with MS experience low mood and stress. Together, this is referred to as ‘carer strain’. Currently, there is no specific support available for carers in clinical practice. For any specific support to be made available through NHS services, research must show that the support that is provided is beneficial for carers of people with MS, and it should not cost too much. Carer strain and support has also been a topic identified by the MS Society as an important subject to focus on.
Acceptance and Commitment Therapy (ACT) is a talking therapy that has been found to be useful for people in distress. ACT teaches people to respond more effectively to difficult thoughts and feelings, so that they no longer are a barrier to living a full and enjoyable life. In the context of carer strain, ACT offers a range of strategies – including mindfulness techniques – that could help carers to better cope with their caring responsibilities and associated emotional demands. Our team has tested associated self-help versions of ACT on people with MS but not with carers of those with MS.
The study we are proposing will randomly allocate carers who are distressed to one of three groups: one group of carers will receive an ACT self-help book, one group will receive the ACT self-help book alongside telephone support from a trainee clinical psychologist, and a third group will continue with their usual treatment. The aim will be to compare the three groups 3 and 6 months after joining the study to see if there has been any reduction in carer strain.
The outcomes we feel might be of interest to carers are: carer strain, mood, and quality of life. We will also be looking at the cost-effectiveness of the ACT self-help to assess its applicability to the NHS.
The project will be carried out by Kristy-Jane Martin (Trainee Clinical Psychologist) as part of their doctoral training in Clinical Psychology. The project will be supervised by Prof. Roshan das Nair (Clinical Psychologist), Dr Nima Moghaddam (Clinical Psychologist and ACT specialist), and Dr Nikos Evangelou (MS Neurologist).
For more information please contact Kristy-Jane Martin at email@example.com
We have been using an online live chat system for some time now and it has shown to be popular. Certainly for those who may not feel in a position to pick up the telephone for whatever reason, and for those who would like a more instant response than email. It also means we have been able to chat to people abroad too, when they may have found it difficult to find support.
Our Digital Officer, John, has now developed a nice little function whereby a pop up appears on every page of our website to show people that the live chat facility is available. This has certainly increased the amount of web chats we have received which is great as it has meant we have reached out to more people affected by MS.
If we are engaged - either chatting to someone already, or perhaps on the telephone - then a message can be left via email and we will get back to you as soon as we can.
We look forward to hearing from you,
Laura, Kim and Ryan
The MS-UK Helpline team
A client who regularly contacts the MS-UK Helpline has recently completed the process for registering with the MS Society Tissue Bank to donate her brain and spinal cord for research purposes after her death. The Tissue Bank is based at Imperial College London and is a collection of brain tissue donated by people with (and without) MS and other neurological conditions. The Brain Bank stores tissue left by donors and makes samples available to scientists carrying out research on MS. The Tissue Bank is funded by the MS Society and Parkinson’s UK.
Whilst lending an understanding listening ear over the Helpline the client made it clear that she really wanted to share her experiences and let other people affected by MS know about her massive personal achievement…
My name is Dinah and I have primary progressive multiple sclerosis, I wanted to share my experiences and thoughts about the MS Society Tissue Bank.
I understand that donating brain tissue is not what some people with MS may want to do, however if somebody does want to do this, my own experience has shown me that it is not as hard to do as you might imagine. There is a lot of help out there along the way for you to be able to do it.
When I attempted to first register with the Tissue Bank a few years ago, I gave up on it due to my personal circumstances at the time, it is a big decision after all. It has been on my mind to come back to it and get this done. I have been trying to find the time and energy needed for quite some time.
This year I got help from the team at the Tissue Bank at Imperial College London with the paperwork. They were very supportive through the whole process. It was not easy for me but it was simpler than I thought it was going to be.
I honestly feel that the day I heard I was registered to be a donor for research purposes and would be helping others with MS after my death was one of the happiest days of my life.
I feel less scared of dying now that I know that I will be helping people through research when I am dead. I am chuffed to bits.
Wishing you all happiness.
To find out more about the Tissue Bank at Imperial College London you can visit their webpages where you will find all the information you need including a ‘frequently asked questions’ section at www.imperial.ac.uk/brain-bank. Or you can call +44 (0) 20 7594 9734 or email firstname.lastname@example.org and the staff will be happy to help.