World MS Day proved to be a day to remember, with the grand unveiling of our New Pathways video and our special social media Q&A. We also got the chance to speak to a few of the MS community to find out how complementary therapies and research has had an impact on their lives.
I have officially had MS for 8 years, but I experienced symptoms 8 years before that.
Just over 3 years ago, I responded to a request for people to get involved with a new group in our village. The request was put in by a professional aromatherapist who volunteered at Cancer Care. She believed that all people with any chronic condition needed support and access to therapies. She also felt that it was important that therapies should be available locally because there was a lack of facilities in the village.
To cut a long story short, 3 years on I am secretary and 'meeter and greeter' for a growing group that has become really important to those who attend. People drop in for coffee and a chat, and to support each other - there’s no need to put on a brave face! In the group there are professional therapists offering therapies such as reiki, reflexology, Indian head massage and shoulder and back massage - all available for a donation if people wish or can afford to give. There is also trained counsellor available for when life is difficult and a listening therapy is needed. The counsellor is also trained in mindfulness and has run courses. I have attended one myself and found them very helpful.
I can certainly vouch for the benefit of these therapies for me - especially Indian head massage and reiki! I’m not alone - there are others with MS who agree. A friend of mine who was recently bereaved attended a meeting with me and her verdict was "a group like this should be available everywhere!"
Volunteering at the group, as well as benefitting from the therapies, makes the name of the group - Best Life - very apt! It certainly makes it possible for me to live the best life possible with MS.
With the glamour surrounding 'miraculous' stem cells which, to echo the words of TV talent show hosts can be whatever they want to be, you'd assume that the science has been around for decades. In reality, scientists only first learned how to grow human stem cells in 1998 after years of trialling the process with mice. It wasn't until 2006 that these scientists managed to find the right conditions to 'reprogram' adult cells into a stem cell-like state.
Stem cell research has been of a particular interest among the multiple sclerosis community due to the ability of a stem cell to regenerate and repair damaged cells. Haematopoietic stem cell transplantation (HSCT) in particular has often graced the news pages as a potential 'miracle' treatment for those with MS. But what is HSCT and how does it work?
Even though we're not medical experts at MS-UK, we are honest and unbiased. So when Professor Gavin Giovannoni from Barts and the London School of Medicine and Dentistry published a wonderfully candid blog about what HSCT treatment entails, we thought it was important to share.
In Professor Giovannoni's fascinating ‘What is HSCT?’ post on the BartsMS Blog, he not only explains the different variations of the treatment and why some are more effective than others, he also describes the process in detail from beginning to end. It's a crucial read for anyone thinking about pursuing HSCT to treat MS.
HSCT treatment comes with risks and isn't cheap. It doesn’t work for everyone and there are no clear-cut answers regarding how long any benefits will last. Ex BBC war correspondent Caroline Wyatt flew to Mexico in January 2017 to have HSCT treatment and, a year later, wrote about her experience. Visit ‘How I'm feeling after my MS ‘body reboot’ to find out whether she has noticed any benefits.
If you are looking for more information or support surrounding HSCT, there are plenty of Facebook communities that may be able to help...
World MS Day is one of our favourite dates in calendar. It's a time when people around the globe - whether they're doctors, MS nurses, students, or those living with MS - can come together and talk about multiple sclerosis (MS).
For 2018, under the banner #BringingUsCloser, the World MS Day campaign on 30 May is putting MS research underneath the spotlight.
Here's what we'll be doing on the run up to and on the day so you can get involved in the action...
For one day only, Sarah-Jane, the editor of our New Pathways magazine, will be taking over Twitter for a very special Q and A! If you have any burning questions you need to get off your chest - whether it's about recent medical developments in the world of MS, MS studies or research, or complementary therapies - then join us on Twitter on 30 May and make sure to tag us @MSUK6.
Gather around the (digital) campfire! We want to hear stories of your experiences with complementary therapies and MS research. Has cannabis helped ease your symptoms? Do you follow a diet that you'd love to recommend? Perhaps you were involved in a research trial and want to share what you've learned with the world? Let us know! Email Callum with your tales and we'll feature you in our special World MS Day blog!
We've planned a series of special blogs to coincide with World MS Day 2018! Throughout the week and on the day itself, we'll be posting about the latest developments in MS research and showing you how to get involved. Keep your eyes peeled on the MS-UK blog pages so you don't miss out!
Armed with a camera and supported by a rising actress/willing member of the MS-UK team, we've channeled our inner Spielberg to create a one-off World MS Day video! Production is currently under tight-wraps (so no spoilers) but we can't wait to show you the finished product!
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.
If you want to take part in this year’s Prudential RideLondon-Surrey on behalf of MS-UK, you will need to sign up by next Tuesday 22 May.
The event on 29 July, which takes riders one hundred miles through the closed streets of London and into the suburbs of Surrey, promises to be an unforgettable experience for anyone lucky enough to be sat behind the handlebars!
If you would like to book your place, contact Jenny Poulter via email or calling 01206226500.
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.
Multiple sclerosis affects two to three times more women than men. It's a fact that most of the MS community can recite by heart. But that doesn't mean that men should feel left out of the loop. Men can and do experience different MS symptoms and they deal with it differently too. On the run-up to our New Pathways 'Men with MS' special, we've compiled a list of facts about Men with MS...
According to a study in 2017, men with MS are more likely to experience depression than women. Another survey, carried out by the Mental Health Foundation, found that men are less likely to seek out counselling should they need to get something off their chest. We at MS-UK believe that it's good to talk. That's why we founded the nation's only MS Counselling service in October 2017. If you feel like you could benefit from speaking to one of our MS counsellors, you can register for sessions by filling out an online form.
Men with MS can experience difficulty achieving or maintaing an erection during sex. Sexual difficulties arise as a result of a complicated web of factors - both social and physical - but they are particularly common in those living with MS due to the affect that MS has on the nerves that control sexual responses in the brain and spinal cord.
Though men with MS might experience physical difficulties surrounding sex, studies have shown that the count and quality of sperm is not affected, meaning that babies are not at a higher risk of experiencing problems during pregnancy.
Men are three times more likely to experience a relapse than women, even though there is an approximately even ratio of men and women with onset primary progressive MS according to research. It also found that the male gender was associated with worse recovery from certain symptoms.
Levels of testosterone are seven to eight times lower in women than men, leading to studies into the hormone's role in developing MS. A US study found that testosterone produces a molecule called IL-33 which, by opening up a specific pathway, can limit destructive immune responses such as MS. This may also go some way to explaining why women generally develop MS at a younger age than men, with male testosterone levels known to decline with age.
From the latest research, symptom management and your real life experiences, we want to hear from you! If you’re a man with a question about your MS, or maybe you would like to share your experience of how the condition has affected you, get in touch by emailing us.
Closing date for contributions is 19th June.
Since 2013, Chris has managed to complete 100 marathons in aid of MS-UK, racking up over 2,500 miles! What is the secret to Chris' success? We spoke to him to find out...
I ran the Virgin Money London marathon in 2013 and 2014, the London to Brighton 100km (63 miles) challenge, the 15 marathons challenge in 2015, and the 30 marathons challenge in 2017. My 100th marathon, at Betteshanger Country Park, was also in celebration of MS-UK!
When my wife Jennie was diagnosed with MS in 2011 we turned to MS-UK for help. They were brilliant. They gave Jennie access to the help and support she needed at the time and ever since. I decided to do something to support the brilliant work they do for people living with MS. Now, seeing the centre grow and the facilities develop, it feels great to have played a part.
I have run several navigational races and normally get lost which adds to the fun! During the London to Brighton challenge in 2014, a fellow runner was following my head torch to help get over a stile but missed the jump and fell over in style!
I found it easy to raise money the first time around as the 100 marathon challenge is a massive commitment that everyone is eager to see you complete. In the years that followed I have found events such as quiz and music nights really worked well. I hosted a fundraising penalty shootout which worked well too.
For my next fundraising challenge I will be taking on a 100 mile run in Dover in 2019. As 63 miles is the furthest distance I have ever run, I feel like this will be my biggest challenge yet! If you would like to donate you can visit my JustGiving page!