This World MS Day (WMSD), multiple sclerosis (MS) blogger, Martin Baum shares his thoughts on raising awareness of MS in mainstream media outlets.
Just a couple of weeks ago was MS Awareness Week, an annual opportunity to help people better understand life with MS. An occasion for others to become inspired to do whatever it takes to change the world for people like me living with MS. The goal of this social media campaign was - and is - to raise awareness about MS and today (5th May) I searched the internet to see for myself what impact MSAW had made in the national press.
On Google there was an abundance of websites with MSAW headlines to attract clicks to links for MS awareness content with specific lead-ins such as:
March is Multiple Sclerosis Awareness Month, so let's help those suffering from it... The aim of the awareness week, which ends on Sunday, is to give people affected by MS... Every March is Multiple Sclerosis Awareness month, a time for sufferers, family...
Regrettably, not one of these teasers failed to hook any national newspaper or internet coverage outside of their own MS bubble. The same applied last year for World MS Day which makes me wonder if this year will be any different in raising the media profile for MS and MSers alike.
Of course, it’s easy to shrug, do nothing and continue to be a victim of media indifference towards an illness that has been with me for almost 40 years. This was why I recently felt compelled to write an open letter to the producers of Coronation Street after they inaccurately suggested Charles Bonnet Syndrome (CBS) – a condition that causes hallucinations – was something people living with MS commonly develop.
For a syndrome too obscure and extremely rare for the MS Society, the MS Trust, OMS (Overcoming MS), and MS-UK search engines to recognize, CBS has its own support group, Esme’s Umbrella, as it is a standalone condition. Yet the producers who believe, and I quote, that “MS is still a taboo subject”, have remained unapologetic for the distress caused for portraying its MSer character Johnny Connor as losing his mind.
News of my correspondence made its way into the pages of The Times, Telegraph, and even The Daily Star here in the UK. It was calculated that the articles secured a combined circulation of more than 500,000 readers. By my calculation, this is half a million more than is and was seen in the media for either World MS Day 2020 or MS Awareness Week 2021.
In the run up to WMSD, given that the Coronation Street MS storyline is still ongoing, my wish is for World MS Day is for television companies to never again misuse MS for a cheap storyline as they have in 2021, just as PT Barnum did with his freak show back in 1919.
For World MS Day, Clive Whyte explains how connecting with our counselling service helped him transform his mental health
A diagnosis of Multiple sclerosis (MS) is a very big thing to take on board, and it hit me like a ton of bricks.
At first, I thought I could handle it and just stride through life with no worries – it’s just a condition! However, the mind has a way of catching up with you and stopping you in your tracks. After being diagnosed, I started having issues with anxiety that was affecting my day-to-day life.
I read about MS-UK’s Counselling service and decided to refer myself.
When I had my first session, I spoke to a completely neutral counsellor about everything and anything that had been troubling me daily and causing my anxiety. There was absolutely no judgement, just a listening ear.
After the sessions, I felt like I had lifted a lot of troubling thoughts out of my head. I’d felt like I had a lot of tangled, knotted thoughts in my brain, and counselling helped unravel them. It helped me to think more clearly.
My partner is my rock, and she has seen me go through some quite dark moments. However, she tells me she has definitely seen an improvement in me recently. I still have good and bad days, but I feel a lot more in control of my thoughts in general.
My confidence has grown more and more since my counselling sessions, and I feel a lot more comfortable in social situations at work and with friends. Before, I would avoid a lot of these situations due to anxiety.
With time, and the help of counselling, I began to accept my condition and come to terms with a lot of the other things you need to process after an event like this, and that’s exactly what I will continue to do.
Counselling was a way for me to release feeling trapped within, and allowed me to feel more relaxed in myself and with who I am. It’s been a gift for me, and one for which I’m very grateful.
World MS Day is officially marked on 30 May every year. It brings the global MS community together to share stories, raise awareness and campaign with everyone affected by multiple sclerosis (MS).
The 2020-2022 World MS Day theme is ‘connections’. MS Connections is all about building community connection, self-connection and connections to quality care. The campaign is about challenging social barriers that leave people affected by MS feeling lonely and socially isolated.
Over the last year MS-UK has been looking at the issue of loneliness and isolation within the MS community and during Loneliness Awareness week (15 – 19 June) we will be publishing our report that shares our insights from listening to personal experiences within the MS community. This report will set our learning and the positive action that MS-UK will be taking and how communities and organisations can support this work.
We have also recently become members of the Connection Coalition which has been founded by the Jo Cox Foundation alongside Mind, The British Red Cross, Facebook, Age UK, Nesta, NationBuilder and The Cares Family. These members are convening this cross-sector coalition to coordinate, amplify and inspire efforts to reinforce meaningful connections. Their hope is that in doing so, they can mitigate the impact of isolation through the COVID-19 crisis and harness the power of strong relationships and connections for the future.
We know that since the start of COVID-19, many people are supporting their neighbours and communities in creative and inspiring ways. However, for some, the challenge of reaching out for support will be difficult, their mental health may be impacted and the local groups and activities they were accessing may not be happening now. It is therefore even more important that people know where to turn and how to get the support they need.
At MS-UK all of our national services are still operational and this includes the MS-UK Helpline, MS-UK Counselling and our New Pathways magazine. As Head of Services at MS-UK, I am proud that despite the challenges we have all been presented with we can still support and empower people living with multiple sclerosis to live healthier and happier lives.
If you would like to stay up to date with our work or want a copy of our report on Loneliness and Isolation please sign up to our newsletter here www.ms-uk.org/ms-uk-newsletters.
Once again World MS Day is here and this year the theme is invisible symptoms.
With a predicted 2.3 million people living with multiple sclerosis (MS) worldwide, thousands of organisations and millions of people are set to come together in their local and online communities to raise awareness of the condition.
No two people experience MS in the same way and many of the symptoms, such as fatigue, pain, problems with bladder and bowel, balance, cognition, heat sensitivity, sensory problems, sexual dysfunction, mental health and sensory issues, are often not recognised or noticed because others simply cannot see them.
That’s why MS-UK is taking part in the World MS Day campaign, coordinated by the MS International Federation, to help raise awareness. In addition, we will be running a survey about hidden MS symptoms. The invaluable information you provide will help inform how we raise awareness of hidden symptoms in the future and we want our campaign to be informed by the voices of people affected by MS. Click here to fill out the survey.
We’ve asked MSer and very talented illustrator Jessie Ace to create some illustrations that show how some people experience situations due to hidden symptoms. These illustrations will be shared with you on MS-UK’s Twitter and Facebook pages all day today. Many of you will be able to relate to the images which depict fatigue, pain and bladder and bowel issues. In a bid to raise awareness and educate people we encourage you to share them along with your own experiences to raise awareness and show the general public the not so obvious symptoms of MS. Don’t forget to tag MS-UK and use the official hashtag #MyInvisibleMS
MSer, Blogger and Influencer Martin Baum discusses his hidden symptoms on World MS Day
This year’s theme for World MS Day is recognising invisible symptoms. This is quite appropriate, given all those inconveniences we have to endure; fatigue, bladder, bowel, sensitivity, pain, clumsiness, slurry speech, vision, memory - dear God, will it never end? Well, no, actually, that’s the crazy mixed up world of Multiple Sclerosis (MS).
After navigating these symptoms for almost 40 years I've learned to live with the cards I've been dealt. If I’m tired, I rest. If my speech slurs, I involve myself with as little conversation as possible and so on. For every problem, there’s a solution, as my late father used to say.
These days I think I cope although I might manage a whole lot better if it wasn’t for the unpredictability of my balance and motor skills. The feeling of knowing I want to walk forward, only to find myself going in the opposite direction is a weird one. It doesn’t happen often but enough, I reckon, to get on Britain’s Got Talent doing a moonwalk dance routine.
Interestingly, social functions, such as a wedding - are guaranteed to bring out the worst in my ineptitude. Perhaps it’s the overwhelming sense of the occasion. Yes, it might be the bride’s big day, but when standing next to my wife, I begin to wildly windmill my arms desperately trying to steady myself it causes some embarrassment.
I don’t drink. Not because of a conflict with the medication I’m on but because I’ve never seen the point. However, given the circumstances of being at a do where alcohol is in copious supply, it’s pointless trying to argue my sobriety. That’s when I feel vulnerable; episodes I cannot control, muddling my words, sometimes quite incoherently. And then overhearing comments from other guests that I’m already “four sheets to the wind”.
Yet I do not - and will not - allow this invisibility of circumstance make life any harder for me than it is. MS has many different symptoms and let’s be honest, it sucks to be at the receiving end of something so rotten and yet, with all sincerity, I won’t allow myself to be a victim. To be that man. Because to be perfectly frank, however bad it is for me, I know it could be a whole lot worse. I could be in a wheelchair, as so many others are. But not me, so I’m grateful for that.
My mantra is to live life and not MS. In other words, I own my multiple sclerosis; it does not own me, which is why World MS Day is so important to me. The more ‘They’ learn then the less I’m presumed to be the local drunk. I know I am worth so much more and come World MS Day maybe others will too.
You can read more of Martin’s MS experiences over on his blog, visit www.martinbaum.co.uk.
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.
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!
On 30 May, under the banner #BringingUsCloser, the global World MS Day campaign is putting multiple sclerosis (MS) research underneath the spotlight. The aim is to unite those involved in research - whether it be scientists or doctors, students or volunteers - and get them talking.
Throughout the month we'll be celebrating by talking about complementary therapies, and what better way to get to the heart of the subject than to speak to those who've sampled these therapies first hand? Whether you've experienced a positive change due to APS therapy or you have a story to share about using mindfulness to manage MS, we want to hear from you!
For one day only, our very own Sarah-Jane will be taking a break from editing our New Pathways magazine to take over our social media. If you have any questions about complementary therapies, MS research, or even the magazine itself, then make sure to put a note in your diary.