For MS Awareness Week this year, we wanted to hear from people who live with the long-term health condition. This is Sally-Ann's story.
Nine years ago, I was diagnosed with multiple sclerosis (MS). A year before, I had woken up one morning and was blind in one eye. After seeing an eye specialist, I was diagnosed with optic neuritis and was told it would take a year to recover. Over the period of year, I lost eyesight in both eyes about three to four times and this led to my diagnosis of MS. MS wasn’t new to me. It was a condition I had watched my mother live with for many years, and my mother was wheelchair-bound and my father her full-time carer. From being diagnosed with MS and been fortunate enough to have treatment and medication straightaway it has thankfully kept my symptoms at bay and they are very mild. I’m still able to work full time, and every year I raise money and awareness for various MS charities. MS for every one of us is completely different, we all react differently to all the different medication and all of our symptoms can be so different. We call it a snowflake disease because none of us are the same. I’m very lucky that my eyesight has fully recovered and I am currently relapse-free for four years due to the medication I am on.
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This week is MS Awareness Week, and we'll be sharing stories from people living with multiple sclerosis (MS). Every experience with MS differs for everyone, and each story shows how indivudal the journey can be. Declan shares his story and how he didn't let his sympoms stop him from following his dream to study law.
My name is Declan Groeger and I live in Cork, Ireland. I was diagnosed with RRMS in 1988, but I can trace the initial signs and symptoms to 1983. I had often yearned to study Law and in 1999 I decided to do something about it. I applied for, and was accepted, onto an evening course studying law at my local university – University College Cork. It seemed to be a daunting challenge which would involve three hours, three evenings a week for the initial two years and progress to three hours, four evening a week for the next two years. All this, plus tutorials and study whilst holding down a full-time position as a real-estate agent.
I did 16 subjects over the initial four years which was the same number of subjects that full-time students studied over three years. Lectures and tutorials were at pre-ordained times – all after a day’s work, but study times were a different matter entirely. My boss allowed me a certain amount of freedom and I was able to manage some study time while in the office. My non-college evenings became study time, as did Saturday mornings but that was it. I still needed family time with my wife and two daughters.
My handwriting had deteriorated over the years to where it was barely legible as tiredness eclipsed my drive to be as good as I could be, and I knew that note-taking in lectures could be illegible without context. I bought a laptop, and my wife bought a voice recognition program. I would read my notes into the laptop, within 24 hours, while everything was fresh in my mind.
After I had completed my four-year stint and achieved my Bachelor of Common Law (BCL) with a 2:1, I discovered that I was addicted and enrolled for a further two years for a post-grad and achieved Bachelor of Laws (LLB) and by that time in 2005 I had got the further education bug out of my system.
I retired in 2010, 22 years after my diagnosis due to fatigue. It was a good decision for me as my quality of life has improved. I have undertaken a number of online courses over the years to keep my brain as active as possible and I like to think that I doing alright, particularly in these strange Covid-19 times.
Cathy and Sue took part in the Big Purple Dog Walk for MS-UK, and raised over £400 with their team of pups and walkers. Cathy shares their story and the support they were able to give each other during the challenge.
'After the success of Run Every Day in January 2021 for MS-UK, Sue our Run Together Leader and MS-UK ambassador asked if we would like to join in The Big Purple Dog Walk, and many of the Run Together members jumped at the chance to sign up. Some team members were really struggling through the dark gloomy months, on top of trying to cope with the stress of Covid. So, we put together Team Purple Pups. Our Purple Pups are called Idris, Padfoot, Widget, Stanley, Tala, Willow, Mav, Jess, Nelly, Hunter, Max, Holly, Blitz, Ozwold, Shadow, Poppy, Willow 2, Lenny and Winnie
Team Purple Pups did us proud, they had us out every day, rain or shine! To get out in the fresh air, even for a short walk is just the best cure if you are feeling a bit down, anxious or just want to clear your head! Some of the Purple Pup’s walked miles every day, some of the slightly older dogs could only manage a few miles a day, but together as a team the Purple Pup’s covered so much mileage and completed quite a few marathons!
The MS-UK challenges throughout lockdown have helped so may of our Run Together Purple Pup owners. The challenges have got us out and about and we have met up with other Run Together members and Purple Pup’s pups and has been a life saver for many. Sue and our Run Together members have looked out for each other since lockdown last year and provided support and encouragement to anyone struggling with the Covid situation and not being able to see their loved ones. They relied on our running family to get some of us through some very dark times.
A huge thanks goes to Sue Bennett, without her, none of these MS-UK challenges would have happened. Sue has looked after us all since the very first lockdown, with live videos on Facebook, our Purple WhatsApp group, arranging buddy up runs or walks and just being there to support her team members. Team Purple Pups thoroughly enjoyed the Big Purple walk and have raised £405 for MS-UK!'
In the second part of her blog, nutritional therapist and naturopath Tanya Clarke reveals the diet and lifestyle choices which help her manage her condition
As I mentioned yesterday, a holistic approach aims to find the root cause driving the chronic illness. It could be poor nutrition, allergens, lack of exercise, infections, lack of sleep, toxins and/or stress - physical or emotional - or any combination of these.
I follow a naturopathic diet, based on organic wholefoods. It is a very anti-inflammatory diet, high in vegetables (raw or lightly steamed) and whole fruit.
I eat a rainbow of colours of fruit and vegetables. Colourful vegetables and fruit contain specific micronutrients that support your health and combat biological stress with antioxidants and anti-inflammatory molecules.
I rarely eat cow’s milk products, but goat and sheep products are fine. I minimise caffeine and tannin intake, except for green tea. I rarely eat gluten, simple sugars and refined carbohydrates. I am not vegetarian but I eat a lot of vegetables and I eat more fish than meat – I only eat red meat occasionally.
I do not eat processed foods as they can be a problem due to their high sugar and salt content, and they are very inflammatory. I check for food intolerances, and avoid the resulting foods as they can increase inflammation. I try to add them back into my diet after a period of elimination.
I check for nutritional deficiencies and possible malabsorption. For me, adding flaxseed oil in to my diet every day is essential. It is a good source of omega 3 fatty acids, which is anti-inflammatory. I eat cold water fish – wild salmon, herring and mackerel, two or three times a week, as this is also a good source of omega 3 fatty acids. Foods rich in essential fatty acids may be beneficial in decreasing symptoms and flare-ups of MS.
I add organic lecithin granules to my diet every day – this is important for the structure of the myelin sheath. I check for heavy metal toxicity and follow chelation therapies for reducing this. I used to keep a health diary to note what I was eating, my stress levels, emotional status and physical activity – I would score my overall wellbeing for that day out of ten, then for that week, then the month, and so on, reducing the frequency of recording as symptoms improved.
I am trained in the use of medicinal mushrooms, and I have found that they can be very helpful with MS as they are immunomodulating. They are a good source of vitamins D and B12, and they can offer neuroprotective and neuro-regenerative benefits. They also have anti-inflammatory properties.
To support the health of my gut and the elimination of toxins, I do a 10-week gut restoration programme and a six-week cleanse programme every year. I exercise regularly to keep my muscles strong – spending plenty of time outdoors in nature with my horses and dogs. I try to catch the sun for 15 minutes when it is out to top up my vitamin D levels. If the weather is bad, I find yoga beneficial for my strength, flexibility and breathing – it provides a boost for my physical and mental wellbeing.
I meditate every day. Various studies have shown that meditation may be helpful in reducing pain and improving quality of life in patients with MS. I have used both acupuncture and homeopathy, which helped to bring my body back into balance.
I am very careful with my stress levels. If I know that I am about to go through a very stressful period, I focus on eating a nutrient-dense diet to support me and increase the amount of time that I spend outdoors. I also meditate more frequently. Learning to say ‘no’ was very difficult for me initially but absolutely essential when looking after myself. It is not being selfish, it is just that there are times when taking on any more would be detrimental to my own health.
Never forget that good health is all about keeping the body in balance. That balance has different requirements for each individual, but it can be found and improvements can be made.
MS is not an inherited disease, however there is genetic risk that may be inherited. More than 200 genes have been identified that each contribute a small amount to the overall risk of developing MS. So starting with your genetic profile is useful, as it can guide you with how to create the most appropriate environment for your body to prevent it following the potential disease path of a genetic predisposition.
Start your journey
Think about your physical, emotional, social and spiritual wellbeing. For each one, consider how you can best support your body. Often it will be a combination of DMDs and dietary/lifestyle choices.
Hippocrates said in 400BC that ‘All disease begins in the gut’ so optimising gut function is a great place to start. With MS being an autoimmune condition and with 70-80 per cent of your immune system being in your gut, optimal gut health is crucial.
Start with looking at your diet – what are you putting into your body? Is it a healthy balanced diet with plenty of vegetables, not too much saturated fat or processed food? Are you staying hydrated?
Then look at how you are eating – do you watch the TV while eating? Do you always eat while on the go? How stressed are you when you do eat? Do you chew your food properly?
Next, look at what you are absorbing from that food. There are tests available to check for nutritional deficiencies and possible nutritional malabsorption. Genetic predispositions are useful to know here. Check your vitamin D and vitamin B12 status if your GP has not done this already.
It is important to consider elimination. Your body will create waste – how well do you eliminate that waste (stools, urine and sweat)? If your elimination processes are not functioning well, toxins may build inside your body.
Minimise exposure to exogenous toxins – eat organic food when you are able. Look at other toxins that you may be exposing yourself to – skincare products? Household cleaning products? Tap water? Diesel fumes? Solvents? Aerosol sprays?
Avoid smoking – studies have found that tobacco smoking is associated with more severe MS. It also may speed up disability and disease progression.
Always try and avoid overwork and fatigue. Manage stress – try the breathing 4-7-8 technique, where you breathe in for four seconds, hold for seven, then out for eight, daily meditation - start with free guided meditation on one of the apps - and practise positive thinking.
Make sure that you get enough time to sleep and rest. Go to bed early and aim for between seven and nine hours of sleep every night.
Exercise regularly. Tai Chi and Yoga are very good to help relaxation, balance and with muscle strength. Try to get outside every day in the fresh air to enhance your mood and to provide you with some vitamin D when the sun is shining.
Stay connected with friends – join a support group. Sometimes this may have to be via video calls.
Overall, learn to listen to your body.
It should be emphasised that dietary and lifestyle options should be complementary and not be taken as alternatives – they should be part of a holistic approach and be under the guidance of your medical practitioner. We are all individuals. A wellness journey is a very personal one – a journey that can help you find your unique combination of factors that can nudge your body back into balance.
Please make sure that you consult your MS consultant/GP before self-prescribing supplements and making significant dietary changes. This is particularly important if you are on prescribed medications. It is essential to check that there are no drug/nutrient interactions.
Yesterday I explained why a holistic approach is so inportant in MS. You can read that post here My holistic approach to multiple sclerosis
Tanya is a naturopath and nutritional therapist. To contact her, visit www.tanyac.co.uk
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Nutritional therapist and naturopath Tanya Clarke has multiple sclerosis. Here she reveals why a holistic approach is so beneficial to this condition
Multiple sclerosis (MS) is a lifelong condition that causes a multitude of symptoms that affect physical and cognitive function, as well as mood. There is no cure. Disease-modifying drugs (DMDs) are available for people with active relapsing disease, and these can change the course of MS. However, due to the unpredictable and variable nature of MS and the fact that it affects every aspect of life – work, family, and social life, a holistic approach to care is required to meet the needs of those living with the condition.
A holistic approach will aim to find the root cause driving the chronic illness. The root cause could be poor nutrition, allergens, lack of movement, infections, lack of sleep, toxins and/or stress (physical or emotional) or any combination of these.
Naturopathic approach to multiple sclerosis
It is important to consider a person’s physical, emotional, social and spiritual wellbeing. All four aspects need to be in balance for optimal health. MS affects individuals differently, so the support each person requires will vary. It is not enough to focus on only one aspect such as diet, when that person may be living such a highly stressed life that they are unable to absorb the nutrients from an improved diet. A holistic approach is essential to find the antecedents, triggers, and mediators of chronic disease. It will look at the interaction of genes, lifestyle, and environment.
I chose to train as a naturopath because I have experienced the benefits of choosing a system of health care which promotes the body’s own self-healing mechanism. The principles of naturopathy were first used by the Hippocratic School of Medicine in about 400 BC. The Greek philosopher Hippocrates believed in viewing the whole person in regards to finding a cause of disease, and using the laws of nature to induce cure. It was from this original school of thought that naturopathy takes its principles –
The healing power of nature – nature has the innate ability to heal.
Identify and treat the cause – there is always an underlying cause, be it physical or emotional.
Do no harm – a naturopath will never use treatments that may create other conditions.
Treat the whole person – when preparing a treatment plan, all aspects of a person’s being are taken into consideration.
The naturopath as a teacher – a naturopath empowers the patient to take responsibility for his/her own health by teaching self-care.
Prevention is better than cure – a naturopath may remove toxic substances and situations from a patient’s lifestyle to prevent the onset of further disease.
This approach, alongside DMDs, can be very beneficial to chronic conditions such as MS.
Check back here tomorrow, when I will reveal to you my holistic diet and lifestyle choices I use to manage my multiple sclerosis, and give you some pointers to help you start your wellness journey.
"I have had multiple sclerosis (MS) now for nine years and very lucky that it is mild, and I can still work full time. When I received my diagnosis of MS it was not something new to me. My late mother also had MS and she was Primary Progressive, wheelchair bound, and my father was her full-time career. I have seen first-hand how unpredictable and horrible this disease is.
Since my diagnosis I have been passionate about raising funds and awareness for MS and have done something for charity every year. I have climbed Snowdonia, walked 26 miles, walked 100 miles in a month and hosted a few of my own events too. In total I have raised over £8,000 for various MS charities throughout the year. I help at my hospital with my MS nurses and participate in a newly diagnosed day and talk to others about what I have been through. I also host a Facebook support group for women with MS, which is globally a huge success with nearly 25k members.
I want to continue helping as much as I can and with working full-time, I am so limited. So, to be able to help MS-UK by getting the name out there and raising vital funds for them by becoming a Community Champion, really touches my heart that I am helping others."
MS-UK's Community Champions distribute charity collection pots within their local area and maintain relationships with the venues that look after the collection tins. You can find out more about the role of a Community Champion by clicking here, or contact our Fundraising team on email@example.com or call them on 01206 226500.
The Epstein-Barr virus, which causes glandular fever, is a long-time suspected MS trigger. Ian Cook investigates its involvement in immunotherapy treatment that is now being developed as a possible treatment
One of the many theories about the cause of multiple sclerosis (MS) is that a virus is involved, and over the years several viruses have been investigated. Interestingly, the main suspect viruses are different members of the same family of virus – the herpes family.
The particular herpes virus that has attracted most interest is, of course, the Epstein-Barr virus (EBV) and the reason is obvious when you look at the statistics. A recent German study found EBV infection was present in 100 per cent of the 901 MS patients that took part.
This 100 per cent correlation is a fairly striking fact and it is disappointing that there has until recently been little headway in proving the seemingly obvious theory that EBV is actually one of the causes of MS. All this may be about to change, however, and this is due largely to the work of Michael Pender, a consultant neurologist at the Royal Brisbane and Women’s Hospital and Professor of Medicine at The University of Queensland.
Professor Pender believes that a large body of evidence shows that infection with Epstein-Barr virus (EBV), which causes glandular fever, also known as infectious mononucleosis, has a role to play in the development of MS several years after the original EBV infection. One of the reasons is that after infection the virus lives on in B cells, the white blood cells that make antibodies. Once a person is infected with EBV, they carry the virus in these B cells for the rest of their life.
Professor Pender believes that in MS, infection with EBV leads to the creation of ‘autoreactive’ B cells, which accumulate in the brain. Once there, these autoreactive cells produce anti-brain antibodies which ultimately lead to the destruction of myelin in the brain and other parts of the central nervous system.
By living on after the initial infection, EBV is behaving in a similar way to other members of the herpes family of viruses. This is something you may know from personal experience. After infection with herpes simplex virus (cold sores or Human Herpes Virus 1 (HHV 1)) the herpes virus hides inside nerve cells, hibernating there for life, and periodically waking up from its sleep to reignite infection, causing the cold sores to recur. If you have ever had chickenpox (HHV3) you will also know this can later recur as shingles, the virus also going into dormancy hiding again in nerve cells until returning years later in nerves that lead to the skin.
Professor Pender’s theory about EBV (HHV4) has made several predictions which have subsequently been verified by studies he has conducted, including the presence of EBV-infected B cells in the brain in MS. Perhaps most importantly, over the past few years, working with other researchers, Professor Pender has gone on to use an immunotherapy which involves growing immune cells from the blood of MS patients with fragments of EBV proteins to retrain killer CD8 T-cells (another type of white blood cell) to be potent killers of EBV-infected B cells. The retrained killer CD8 T-cells are then administered to the patient by intravenous infusion. This treatment, known as ‘autologous EBV-specific T-cell therapy’, does not require the use of any drugs.
A Phase 1 clinical trial tested the safety and tolerability of this therapy in patients with primary and secondary progressive MS. The results of the study were recently published in the journal JCI Insight. Of the 13 recruited participants, 10 received the full course of T-cell therapy. The majority showed improvement, with six experiencing both symptomatic and objective neurological improvement, together with a reduction in fatigue, and improved quality of life. All six patients receiving T-cells with strong EBV reactivity showed clinical improvement, whereas only one of the four patients receiving T-cells with weak EBV reactivity showed improvement. There were no serious side effects associated with the treatment.
Most recently, and following on from Professor Pender’s work, a US bio-technology company, Atara Biotherapeutics, has developed an experimental therapy called ATA 188 to treat both progressive and relapsing-remitting MS in this way. ATA188 is an EBV-specific T-cell product derived from healthy people. This therapy is known as allogeneic EBV-specific T-cell therapy and differs from autologous EBV-specific T-cell therapy in that T-cells are derived from healthy subjects (allogenic) rather the MS patients themselves (autologous).
A Phase 1 clinical trial is currently recruiting patients (in the US and Australia) with relapsing-remitting MS and progressive MS to test the safety and tolerability of ATA188 as well as find the best dose for a Phase 2 clinical trial. The trial aims to recruit patients who will receive intravenous infusions of ATA188 at treatment centres in the USA and Australia. The study completion date is 2026.
Five years may seem a long way away for news about a revolutionary new treatment for MS. However, in an illness that was first identified more than 140 years ago, most MSers would agree that nothing happens quickly and sadly we will just have to wait and see. Hopefully, the wait will be worth it.
Hello, I am Jackie the new community fundraiser for MS-UK! My role is to look after our fundraisers and to be there to help them every step of the way, making sure they enjoy their experience, the challenge and the journey leading up to it!
My background is in customer service and advertising sales, and I love getting to know new people and building relationships with them. I am very excited to have the opportunity to work for MS-UK and I am looking forward to speaking to our amazing fundraisers and getting to know them all.
Out of work I am a huge animal lover and spend a lot of my spare time with dogs. It was a privilege to start here during The Big Purple Dog Walk - I loved seeing the pictures of all the dogs taking part and getting to speak to their owners and find out all about them and what challenges they had set themselves. Dogs really do bring so much joy to our lives!
I am truly grateful to be working for such a great charity and helping people to raise awareness and funds to ensure we continue to be there and make a difference to people’s lives. It makes going to work that much more enjoyable and rewarding!
Everybody here is incredible and I already feel welcome and part of the team!
I was first diagnosed with Relapsing-remitting multiple sclerosis (RRMS) in 2007 having had my first is MS episode in 2006. In 2017 I discovered MS-UK through their Wellness Centre in Colchester and it was a revelation to me. It put me on the road to accepting and living with my MS positively, which really improved my mental health hugely. I was suddenly able to access so many helpful services, information, complementary therapies. The Social Group and positive support, as well as meeting other MSers and wonderful people who understand MS in all its guises have become firm friends. This new support network became very important to me in keeping me positive, and when the first coronavirus lockdown came and we weren’t able to meet any more, Vicky, Dean and Alan did some fantastic work to help keep us all as fit and well as possible while staying connected.
As well as Alan’s excellent twice-weekly online exercise classes, Vicky set up regular online group catch-ups for us which have been great in keeping our spirits up, especially through the long lockdowns. She’s now developing these into Peer Pods as part of MS-UK's new Peer Support Service and I’ve volunteered to host my one fortnightly on Tuesday afternoons from 3pm. It’s all about keeping connected and having a good old chat, share experiences, ask questions or just listen and get to know everyone. So grab a tea, coffee or your favourite drink and join me anytime between 3pm and 4pm on alternate Tuesdays. Hope to see you there!
My name is Andrea Chapa and I’m running the 2021 London Marathon for MS-UK. I hail from across the pond, but my story began in 2014 when I was studying abroad in Australia. Very early on during my summer term, I ended up at the hospital due to severe eye pain and partial blindness. I had an MRI done and some other tests when the doctors found spots in my brain. I still remember feeling alone and frozen in panic as I heard the doctor say ‘multiple sclerosis’ for the first time. The doctor said there wasn't enough evidence to fully diagnose but warned me that I could have more symptoms come up. But when? There was no way to know...
The following year sent me into a whirlwind of emotions and I was constantly living with the thought of MS creeping up around the corner. A year later it arrived. I had just graduated from college and moved to Los Angeles to start my career when I woke up with the room spinning. Vertigo paired with my history of optic neuritis gave me the diagnosis. I have multiple sclerosis.
I didn't know what that meant at first. Like many people I went online and saw and read things I wish I hadn't. Wheelchairs, canes, loss of motor function, mystery symptoms, shorter lifespan... I was scared and felt lost. It’s a feeling that I do not wish on anyone, but what got me out of it was the immense support from my family and loved ones. After that, I started reaching out to other people in my position and we shared advice, stories, sadness, and hope.
In 2018, I decided to do something that, to me, felt absolutely impossible. I wanted to run the six World Major Marathons before I turned 30. I was never an active person, even before MS, but I knew I needed to take control of my life. That year I ran New York Marathon and raised over $7,000 for the MS Society. I ran the Berlin Marathon in 2019 and was set to run the Chicago one in 2020 before the pandemic cancelled that.
This year, I’m taking on the London Marathon and I’ll have a partner to run with me! My girlfriend, Marette has been by my side since my diagnosis and has helped me immensely. I convinced her to take on London (our favourite city!) with me and we are both proud to be raising money for this amazing organisation. I truly believe that MS is not something one should have to face on their own and I feel honoured to represent an organization that is there to help out.