Living with multiple sclerosis (MS) is a unique experience for everyone, including the range of symptoms someone might have and or the treatments that are available to them. Medicinal cannabis is a treatment that people up and down the UK need access to, and not just those living with MS.
It was legalised for medical purposes in 2018, but unfortunately, it’s renowned for being difficult to access. This has improved over time, and we’ll be running through some of the changes in access to medicinal cannabis, which are explained in detail in our latest edition of the Cannabis and MS Choices booklet that you can read and download for free.
Despite the government legalising medicinal cannabis, getting access to affordable private prescriptions is a hurdle for many, since getting it on the NHS is also quite tricky. The methods in which medicinal cannabis can be obtained in the UK include cannabis flowers, which would be taken via a vaporiser or tinctures administered under the tongue, similarly to high-street CBD oils. Sativex is an oral cannabis-based spray that can be accessed in the UK, with detailed information inside the Cannabis and MS Choices booklet.
A new study is underway in the UK with 20,000 patients to have a further look at the benefits and clinical effects. Project Twenty21 is being led by Professor David Nutt, who also runs the organisation Drug Science, to lead studies without political or commercial influence. The study comes in response to the National Institute for Health and Care Excellence (NICE) saying that there is not enough evidence to prescribe medicinal cannabis on the NHS.
Some people living with MS may benefit from CBD products available to buy on the high street. These are made using cannabinoids and do not contain THC – the psychoactive element of cannabis – and is found in hemp. The primary use of CBD is for pain relief and is available in topical creams or as tinctures that can be put under the tongue or mixed in food and drink.
For more detailed information on the use of medicinal cannabis and CBD for MS symptoms, download our latest edition of the MS and Cannabis Choices booklet. Don’t forget, if you have questions about MS, treatments, or need emotional support, you can contact our helpline Monday to Friday, 10am to 4pm via webchat, email firstname.lastname@example.org or call 0800 783 0518.
The burden of fatigue
81% of people living with multiple sclerosis (MS) experience fatigue (1). In an interview study with people with MS, one woman described fatigue as, “‘it puts my body in a situation where I feel like I’m shutting down. Like I’m just stuck in concrete and can’t move” (2). This type of fatigue is different to normal tiredness and isn’t usually relieved by sleep or rest (3).
Fatigue can have a big impact on people’s lives. Research shows that fatigue in MS is associated with:
Developing treatments to help manage fatigue is important not only to alleviate the symptom but to improve overall quality of life. In collaboration with people with MS, families and healthcare professionals, the MS society has identified fatigue as a top research priority (5).
The Flexible Brain Training (FLEX) project is an online program developed by researchers at King’s College London and people with MS. FLEX is designed to help people with MS manage the impact of fatigue on their lives though a type of brain training.
What is flexible brain training and how might it help?
Evidence shows that fatigue affects areas of our brain which are involved in processing information (6). For example, you might notice when you’re fatigued it’s difficult to focus or take in new information. To get around this our brains make mental short-cuts, for example skim reading.
By continually using these short-cuts our brain gets used to following the same path and the short-cuts can become automatic. These automatic short-cuts can result in our brains becoming less flexible over time. So, rather than taking in new information and adapting to environmental cues, our brain relies on the same old paths it is used to taking.
The FLEX project is series of self-guided, online sessions over a period of 3 weeks, designed to increase brain flexibility through repeated practice.
The FLEX project will assess whether we can
We are now testing the FLEX program to see if it is helpful for people with MS.
We are recruiting people with MS who experience fatigue to take part. Participation involves
To find out more please register your interest on the study website: www.flexproject.co.uk
The heat is on for new cooling drug, says Feature Writer and MSer Ian Cook.
If you suffer from heat sensitivity you will know it can be a big summer holiday spoiler and although other multiple sclerosis (MS) symptoms often get talked about, heat sensitivity doesn’t get the coverage it deserves. As a sufferer I find this fact surprising because the link between heat and MS has been known about for 130 years. Back in 1890 Wilhelm Uhthoff, a German neuro-ophthalmologist, noticed that some of his MS patients’ visual problems got worse after exercising and getting hot. This later became known as Uhthoff’s phenomenon.
Then, in the 20th century the diagnosis of MS involved something called the ‘hot bath test’ where patients were lowered into a bath of hot water to see if their condition worsened when they got hot. If it did they would be diagnosed with MS.
More recently, in the early years of the 21st century, researchers tried to identify the exact mechanism through which heat sensitivity has an effect in MS. The first thing looked at was the fact that MSers overheat because we lose our ability to sweat as MS progresses. Normally adults can sweat between two and four litres per hour or 10–14 litres per day and sweat cools the skin as it vaporises in a process known as ‘evaporative cooling’. But in MS things don’t work so well. Research carried out in 2009 at Oulu University Hospital in Finland looked at sweating in 29 MS patients and compared these patients to 15 people unaffected by MS. The research found that MS patients sweated markedly less than people without the condition. After just 10 minutes of heating, sweating was significantly lower in the forehead, feet and legs of MS patients than in those of those who didn’t have MS, meaning MSers were overheating as they were unable to benefit from evaporative cooling.
Sweating in simple terms is a two-way process. Temperature receptors in the skin send messages through the nervous system to a part of the brain known as the hypothalamus where heat-sensitive nerve cells are located. These cells in return send messages to millions of sweat glands in the skin to
release sweat causing evaporative cooling. For a message to travel between the hypothalamus and the sweat glands the nervous system must carry these messages efficiently.
One of the key chemical elements involved in this process of efficient communication is sodium. As axons in the central nervous system heat up, the amount of sodium moving into the nerve increases in a process known as sodium loading. However in MS this process goes into overdrive and excessive
sodium makes it harder for messages to be sent efficiently up and down nerves to and from the sweat glands. This results in less sweating and overheating.
Dr Mark Baker of Queen Mary, University of London is currently researching ‘sodium loading’ in axons. Dr Baker is looking for a drug or drugs that could target MS heat sensitivity by reducing the amount of sodium travelling into nerve cells when the temperature increases, allowing messages to muscles to be sent more securely and therefore better communication with the sweat glands and more sweating.
One drug that is believed could have this effect is bumetanide. This drug is already used to reduce extra fluid in the body (oedema) caused by conditions such as heart failure, liver disease, and kidney disease so we know it’s safe to use. It is thought bumetanide might be effective in tackling heat
sensitivity because it reduces the amount of sodium entering cells. Dr Baker has been leading research into this area but says that bumetanide comes with major problems. It is poor at getting into the brain and nervous system and thus poor for accessing damaged axons. A side effect of bumetanide is
increased urination – something that would be unwelcome by many of us MSers who suffer urinary problems. Dr Baker says these facts are leading him to look for other drugs.
“We need to investigate other compounds that have much better brain penetration and we have plans to do this. We also think there may be another molecular mechanism causing sodium loading that is not affected by bumetanide and this is one of the things we are working on.
“Exploring this avenue may allow better pharmacological control of temperature-dependent symptoms, and in the longer term could provide a route to neuroprotection. So right far down the line neuroprotection is a massively exciting idea that means we may be able to protect axons and neurons from the worst effects of neuro-inflammatory disease and slow progression by reducing the energy expenditure in axons as well.”
Although it is early days in Dr Baker’s research, it is hoped that continuing work on heat sensitivity could lead to other drugs which would not have the side effects of bumetanide and may even have a neuroprotective role too. Until that day happens, MSers will remain reliant on the tried and trusted techniques for keeping cool such as fans, jackets or sprays. I, for one, will be hoping that it’s not too hot this summer, and I will of course also be using a fan, a spray and possibly other cooling aids in case, like last year, we have another long hot summer/ Meanwhile, the heat is on in the search for a new cooling drug.
This article originally featured in issue 122 of New Pathways magazine. For the latest treatment, symptom information and real-life stories, subscribe to New Pathways by clicking here.
To commemorate Random Acts of Kindness Day 2021, we have designed a pack of postcards to help spread kindness far and wide.
In 2019, we began to research the issues of loneliness and isolation in the multiple sclerosis (MS) community. We found that 71 per cent of people affected by MS in the UK experience these issues, or have done in the past.
Our findings from this research also told us that the MS community believes in the power of kindness and friendship, and we should be sharing this message widely. So, whenever we have a chance to do this, we will!
There are many organisations in the world promoting kindness. Here are some we have found - do let us know if you think of any more we can add, just contact us with your suggestions...
MS-UK’s Head of Services, Diana Crowe reflects upon its latest report which gives valuable insight into the loneliness and isolation people living with multiple sclerosis can experience
Much of my time last year was spent exploring how people affected by multiple sclerosis (MS) experience loneliness and isolation and my findings are shared in our report that we have published this week. I don’t wish to repeat in this blog what is said in the report but rather reflect on my experiences whilst working on this project.
When I first started to scope out the work I realised that I needed to squirrel myself away at home one day a week to give me the time and space to research and read all of the amazing reports that had already been published and understand the landscape. This was a luxury to have this time (before we were all forced to work at home – thank you COVID-19!) but I soon discovered the irony of working on a project that was making me feel a little lonely and isolated from my colleagues.
As a community-led organisation, the next step was to reach out to the MS community to hear about their lived experiences. I always love this part of my job because it keeps me grounded and drives the passion that I have to really make a difference. We started by conducting an online survey which gave us a really good starting point and enabled us to drill down further into the challenges and barriers that the MS community were facing.
In the late summer, my colleague and I travelled the country on one plane, many trains and automobiles! We were so grateful to the MS Therapy Centres across the UK that opened their doors to us and enabled us to facilitate focus groups. The dynamics were different in each group – one was very emotional as people shared their experiences and tissues were needed and in others, we heard how some people used humour to deal with the challenges they faced. For example, someone pulled up their trouser leg to reveal a catheter bag and exclaimed ‘this is not a fashion accessory you know!’ We conducted telephone interviews with those we could not meet face to face and it was such a privilege to take this time and listen. Many cups of tea and cakes later we had a rich insight that has shaped the next steps you see in this report.
It has been a long time in the making and we had every intention of launching this report back in March but then we were all forced into isolation (thanks again COVID-19!) and we have all faced so many challenges both personally and professionally and it certainly did not seem appropriate at that moment.
However, this week is Loneliness Awareness Week and we felt this was the right time to share our work. This report and the recommendations within, build upon the work we are already doing and gives us a platform to develop new initiatives. This is just the beginning of what I hope will be an ongoing conversation and I encourage organisations to get in touch to talk about how we can build partnerships, learn from each other and keep this conversation alive. Only by working together can we tackle loneliness and isolation in the MS community.
We catch up with former Gogglebox star Scott McCormick after he underwent HSCT treatment
On my second day in Hammersmith Hospital, my treatment began.
I had 1.5 litres of chemo drugs, followed by the 1.5 litre anti-thymocyte globulin (ATG) chaser. The ATG was far harder than the chemo – that much I will say. I had a lot of water retention that concerned the doctors. I was carrying 5kg more than usual, which meant I was holding five litres of excess fluid from the chemo and ATG infusions over the previous four days.
Immune system destroyed
At this point, my bloods were frequently checked. I was neutropenic [having a very low level of neutrophils, which are white blood cells that fight infection], with absolutely no immune system what so ever. This meant any everyday bug or virus now had the potential to really go to town on me.
This was not helped by the chemo and ATG making all the thin membranes in my body – from my gums to my rear exit – very thin, sore and swollen.
Preparing for HSCT
Here are some things I’d like to pass on to anyone due to undergo HSCT:
I was so glad that chemo smell only lasted for a week or so. The memory of it will be with me for a long time, I think. It even put me off the deodorant I was using, as I was associating it with the smells. It was a cheap one I will never use again, as I had given this some thought before I went in for the HSCT. Everything was cheap and disposable, so I could bin it after I left hospital.
At the point where I was neutropenic, I had been told by Nader, one of the brilliant nurses looking after me, that if I ever started to feel warm, I should tell someone immediately. Everyone gets a nasty infection at this stage.
So, as predicted, a couple of days after having no immunity at all, I sure enough felt warm, so I informed Nader who promptly checked my temperature and confirmed what was suspected.
He disappeared for a couple of minutes after telling me to go back to my bed. He came back with another two nurses and a tray full of strong intravenous antibiotics, and plugged them into me, with a bag being pumped into each arm simultaneously.
As this came to an end, I was asked to move off the bed, as things can become a bit soft in the bowels. As I stood, I can only describe what happened as a tap being turned on from the back end. I had no control what so ever and made a right mess.
I was told that this will happen to every person at this stage with the strong antibiotics. This made me feel a bit better, but it was so weird not having any control. I still had, before the antibiotics, some level of control of my bowels, even though my multiple sclerosis (MS) had been slowly eroding my sense of feeling and control of all things down there for some time.
So, be aware, this will be something all HSCT recipients will go through.
The treatment actually wasn't anywhere near as bad as I thought it was it going to be. Bearing in mind that the first day at Hammersmith hospital I was told to expect the worst I could imagine, and then some. I guess I can imagine some pretty dire situations, because neither the chemo nor the ATG took me there, although the ATG felt far worse than the chemo drugs.
I was told by a friend’s wife, who knows how to put things into context for a squaddie, that chemo is like Domestos bleach to the body. That’s why they put in a peripherally inserted central catheter (PICC) line to the heart. The heavy thick artery walls are robust enough to take the chemo.
The chemo would take two to three hours to administer. The ATG took between 12 hours to 16 hours to administer the same volume of fluid. This does suggest the ATG is so very powerful, and the body can only take it slowly without it harming the individual.
If you are going to have HSCT treatment, a positive mental attitude will see you through it. You must remember you are in a country of 61 million people, and you are in one of the finest hospitals on the planet, with some of the best people, undergoing a well-rehearsed procedure. You will have passed through the strict entrance requirements to even be there in the first place. You are within reaching distance of a place where MS can no longer hurt you.
Fast forward six months, and I’ve had tests which have confirmed my HSCT treatment worked. I’ll try and explain this with the following analogy. I am a car, and MS is a thug that has smashed me up a bit. The thug has been taken away by the HSCT, but the car remains damaged. This is the simplest way I can explain it. The only downside is that the car might not fully repair itself, if at all. I have my fingers crossed, though. A positive mental attitude should keep me going, and I will have another MRI next October to check my MS has not returned.
For me in the short term, I will chip away to try to get strength back. I used to be a hands-on aircraft engineer, and there was nothing I couldn't do. I want it all back, and I want it yesterday.
Visit www.youtube.com/channel/UCMK3P_VOUfDtKU-JWkoeArg to follow Scott’s HSCT journey.
HSCT stands for hematopoietic stem cell transplantation. It was first used to treat cancer, but is now used as a therapy for autoimmune diseases such as multiple sclerosis (MS).
The aim of HSCT treatment in MS is to ‘reset’ the immune system to stop it attacking the body.
You may have seen it in the news because some high profile celebrities with MS have had the treatment, including Hollywood actress Selma Blair.
What happens in HSCT treatment?
First, chemotherapy is given to the patient via an infusion in the vein to stimulate the production of stem cells in the body. This usually takes up to 10 days. The extra stem cells are then harvested from the blood and stored.
The patient then spends some time in hospital while they are given powerful chemotherapy which kills off much of their immune system. The stored stem cells are then reintroduced to the patient’s body. At this point, due to having a much weakened immune system, they are at very high risk of infection and cannot leave the hospital, are kept in isolation, and are often given antibiotics.
The hospital stay can last for a long time while the immune system is rebuilding itself – anywhere from between 10 to 160 days. Within three to six months, the immune system should gradually rebuild itself.
Who is eligible?
You can get HSCT on the NHS, but only if you meet very specific criteria.
Generally, current evidence says that the treatment works best for those who are under 45 and have relapsing MS, have had it less than 10 years, and have an Expanded Disability Status Scale of 5.5 or less.
There must be signs that the condition is active, meaning there must have been two relapses within the last 12 months, despite the person having taken disease-modifying treatment.
If you are looking for more information or support surrounding HSCT, there are plenty of Facebook communities that may be able to help...
Alternatively, you can call the MS-UK Helpline free on 0800 783 0518.
Cathy Howard updates us on the next stage of the statins trial
I was up early again, which was just as well because parking was an absolute nightmare at the station! When we got to UCL Queens Square Institute of Neurology my appointment hadn’t been logged on their computer, so John and I had to wait for about an hour and a half to allow for my records to be released and my prescription to be authorised and filled at the pharmacy. We consoled ourselves with lunch and coffee at a local Italian restaurant.
Once the appointment resumed the lovely nurse Sarah looked after me again. She took the remainder of my original prescribed statin/placebo and replaced it with 2 new bottles and a six-month diary. She took blood and my blood pressure, and Dr Tom Williams noted some headaches and nausea I’d experienced during the first month. He also checked my lungs and heart. As long as these blood tests are ok, I can start to take two tablets per day increasing from one. I was able to collect a CD-Rom with my MRI scan on. So excited as it’s been a long time since I last had one done.
As long as my GP is happy, I can have my next lot of blood tests, at the end of November or the start of December at my local surgery. A few days afterwards I’ll get a phone call at home from one of the research team to ask me a few questions. I’ll let you know how it all goes.
Healthcare services have been failing people with neurological conditions like multiple sclerosis (MS) for far too long. That’s a fact. The number of people living with neurological conditions in England is rising and will continue to increase. But, for a number of years now, neurology has not been a national priority for the NHS. Research shows that those living with progressive neurological conditions are experiencing delays in diagnosis and treatment, fragmented and uncoordinated services, limited availability of neuro-specialist rehab and reablement and a lack of psycho–social support.
This inequality is simply not fair.
The NHS RightCare Toolkit for Progressive Neurological Conditions has been developed to help change that and ensure people living with brain and nerve conditions like MS, Parkinson’s and Motor Neurone Disease (MND) get the care and support they need and deserve.
Seven charities (MS Trust, MS Society, Parkinson’s UK, MND Association, Sue Ryder, MSA Trust and PSP Association) joined forces with NHS experts to produce the toolkit. The hope is that Clinical Commissioning Groups (CCGs) will take full advantage of this unique opportunity; that they will use the practical, clear and innovative guidance the toolkit provides to tackle some of the big challenges people with these conditions face and ultimately improve healthcare services for this group, now and in the future.
If implemented in the right way, the numbers speak for themselves: up to 2,500 emergency admissions to hospital a year could be avoided for patients with these conditions as a result, with up to £10 million freed up to fund improved services.
So what does this mean for people with MS? The toolkit outlines four priorities that need addressing in MS care: improving the efficiency of disease modifying drug management, better use of data and technology to free up the valuable time of MS specialists, holistic support for people with advanced MS, and more MS specialists from different areas working together to provide joined-up care.
MS health professionals do an incredible job with the resources at their disposal and we know that many services are already delivering high quality care - the toolkit has real-life examples of best practice from across the country. But we want to help all areas reach the same high standard and make this best practice a reality for all. We will work closely with the other charities involved to support efforts to see the toolkit implemented effectively, with the shared aim of improving care for everyone living with a progressive neurological condition in England.
This blog has kindly been written by the MS Trust. To find out more about them visit the MS Trust website or if you’re living with MS and would like to share your experiences of healthcare, please get in touch with the MS Trust at email@example.com.
Hi, I’m Cathy Howard, I’m 51 and have secondary progressive multiple sclerosis (MS). I was originally diagnosed with relapsing remitting MS in 1998 at the age of 30 and I later took ill-health retirement from work in early 2015.
I use two sticks to walk short distances, or a wheelchair or scooter if I’m going out. I applied for the Simvastatin trial as I was conscious that apart from some fundraising for MS Society and MS-UK over the years, I’ve never really done a great deal for others with multiple sclerosis (MS).
The MS-STAT2 trial is a double-blind study, which means that I don’t know whether I’ll be taking Simvastatin or a placebo, and neither do the Drs who administer and regulate it. To be honest, although it would be a bonus to me if I took the drug and it worked, I’ll be happy just participating. I will be sharing my experience of participating in the trial through regular blog posts on the MS-UK blog, so watch this space!
Today is my screening day appointment (19 August 2019). I got up ridiculously early because my husband John was stressed about us getting the train with booked assistance for me in my wheelchair. Bleary-eyed we head out to the station. I was eager for my first coffee of the day.
The train was on time and we got to UCL Queen Square Institute of Neurology in London about 45 minutes early. Dr Tom Williams, MS Clinical Research Fellow, came to meet us and escorted us through the rabbit warren of corridors to the trial room. Here I had my second cup of coffee and I’m started to feel awake.
Tom introduced Dr Nevin John, MS Medical Clinical Research Fellow, who is also part of the study. Nevin advised me about the trial, what to expect and possible side effects of statins. He asked me questions, completed forms based on my replies, and requested for me initial consent forms. There is so much paperwork and record-keeping involved!
I then had a basic physical examination, including blood pressure and blood oxygen levels, and my heart and breathing listened too. My height and weight were checked and I had various vials of blood taken for testing.
I also agreed to take part in a brain oxygen study and mSteps smartphone analysis. I was wired up to the brain oxygen study machine and computer and baseline readings were taken. Then I had three separate minutes to say as many words as I can that start with a selected letter. Not as easy as you may think! From the problems I had, I expect I’ve got very little oxygen reaching my brain!
An app is being developed to accurately record walking distance and speed etc. I had a mobile phone with the app on it strapped to my arm and was asked to walk short distances. This also served for the walking part of the MS-STAT2 screening process.
All in all, it was a very interesting appointment. I was completely exhausted by the time I got home but felt like I’d actually done something productive and I’m smiling as I write this! This is it for now, but I’ll update you all on the next part of my journey very soon!