The All Wales Medicines Strategy Group (AWMSG) are seeking the views of multiple sclerosis (MS) patients and carers about new medicines it will consider recommending for use in NHS Wales, such as fingolimod (Gilenya), to treat MS in paediatric patients.
They would like you to share with them what it is like to live with MS or to care for someone who has it, and by contributing you will provide invaluable information about patient and carer needs.
In addition, they will be asking clinical experts to give their views and the medical facts. All of this information combined will give a really good insight into the real effects MS has on patients and carers and help inform the drug approval process. You are not expected to have all the answers, but anything you can share will be incredibly helpful.
If you would like to share your experience download the questionnaire to complete and send it to the address below by the 18 March 2019:
All Wales Therapeutics & Toxicology Centre
University Hospital Llandough
Penlan Road, Llandough
Vale of Glamorgan
Alternatively you can fill out the questionnaire here. All information shared with AWMSG will be kept confidential.
AWMSG is meeting on 15 May 2019. At the meeting the group’s lay member will summarise all comments from patients and carers, and patient organisations. Only AWTTC and committee members will read the completed questionnaires.
If you would like more information, or help with completing the questionnaire, please call 02920 716900 or email AWTTC@wales.nhs.uk.
What you might not know is that Scott has been living with multiple sclerosis (MS) for 13 years and after recently seeing a worsening in his condition applied and has been accepted for Haematopoietic stem cell transplantation (HSCT) treatment in London.
Scott has had a coveted career as an aircraft engineer in the Royal Air Force and was diagnosed with MS in 2006. With an MRI scan his neurologist identified that he has significant lesions to confirm he has MS.
He tried the disease modifying therapies approach and gave beta interferons a try, but they didn’t agree with him. So he decided to take the no-drug route for 13 years before his MS became more active in recent years.
Like many people’s HSCT stories, Scott didn’t know anything about the treatment until his wife found information online. He has since been accepted for HSCT treatment in London and wants to raise awareness and share his experience exclusively with MS-UK and its followers. This is the first of a number of vlogs Scott will be sharing with us, so please do follow his journey with us.
Scott thought it was important to express that he is no way an expert and MS affects everyone differently, but hopes that sharing his story will give everyone an idea of what’s involved in the process and what to expect. Please do share your thoughts and comments with Scott via our social media pages and his own @goggle_beard.
Caution: Please be aware that some of the language used in this video may cause offence.
1. Does the company have publically accessible, easy to understand lab reports?
Companies such as Endoca selling quality products will be proud of their lab reports, and will want their customers and the general public to have easy access to information regarding what is in their products. Do a quick search of the company website, or reach out to their customer services team who should be able to point you in the right direction. You want to see cannabinoids listed, as well as terpenes and evidence of absent chemicals and pesticides.
2. Are the products organic and whole plant?
If the products are certified organic, you will see the logo on the website. Some companies will grow organically but may not have a certification, which isn’t ideal but even without certification, a quick glance over their lab reports should show the testing for, and subsequently negative levels of a variety of chemicals or toxins.
Research and anecdotal reports support the claim that whole plant CBD extracts are more therapeutically potent than isolated CBD extracts alone. Make sure the lab reports of your products show terpene and other trace cannabinoid levels, otherwise you may be buying an isolated CBD product, which means the company is using only the CBD molecule in a carrier oil and no other beneficial plant molecules.
3. Is the CBD amount of the product clearly labelled and verifiable?
As the industry is yet to be standardised, bottle sizes and CBD levels are all dependant on the company, so it’s hard to truly know if the product you’re using is good value for money. Endoca have created this CBD calculator, which helps you work out the monetary amount per milligram of CBD, which is important when trying to decide between products.
4. Are there clear quality standards in place?
Without clear quality standards there is no guarantee of safety in the product you are purchasing so make sure you ask the company for proof of the quality standards they have in place. Ask if the products are Good Manufacturing Practice (GMP) certified (when products are of pharmaceutical quality) and for any other certifications they hold that show their product is safe for consumption.
5. Is their website content clear and informative and do they have many online reviews?
As CBD is a new industry for many people, there is an abundance of misinformation online, including information that you can find on many CBD company websites. Unfortunately, it’s very easy to buy CBD in bulk and rebrand it as your own, so if the company you’re buying from provides limited information, or is not clear in giving you all the tools you need to make an informed decision or purchase, steer clear. Also, finding online sources of product reviews is vital to hearing about the experiences of others using the same products.
You can read more about cannabis in our Cannabis and MS Choices leaflet online.
Fatigue is one of the most common symptoms of multiple sclerosis (MS) and it can often feel overwhelming during the cold and dark winter months. However, with the help of the MS community, we’ve gathered together a few tips and techniques that may help you through!
Firstly, though it may seem counter-intuitive, moderate exercise has been shown to improve resistance to fatigue. Now, we are by no means suggesting that you run a marathon, but a small amount of regular walking, swimming, or yoga, among many other options, could make a positive difference in the longer term. For more information on exercise, please see our Choices leaflet.
Looking after your mental wellbeing is also important. Activities like meditation, mindfulness and relaxation, as well as just being aware of the need to factor in time for rest, are tips that the MS community have shared with us in relation to managing symptoms. This self-aware approach is particularly useful when it comes to fatigue because taking the time to plan activities and daily patterns, as well as breaking down tasks into manageable chunks, can really make things less daunting on a day-to-day basis.
It may seem like a bit of cliché, but we can hardly talk about the usefulness of exercise without also talking about healthy eating. It is well known that eating a balanced diet helps people to maintain good health and feel their best, while poor diet can lead to fatigue. This is no less true when it comes to MS. Supplements, including B12, Co-enzyme Q10, Vitamin D and Omega 3, can also contribute to reducing fatigue, though we suggest speaking to your GP or neurologist before taking anything new. For more information, please see our Choices leaflets on Diet and nutrition and Vitamin D.
Other therapies that some people with MS have found to be helpful include acupuncture, oxygen therapy, and Action Potential Simulation (APS) therapy. Oxygen therapy is widely used across the UK in the many MS therapy centres and those who regularly attend sessions have found that it can greatly improve fatigue levels. To find your nearest therapy centre, use our website.
You can read and download all of our Choices leaflets on our website.
It feels a little that people with multiple sclerosis (MS) are stuck between a rock and hard place when it comes to the weather. After the extremely hot summer we’ve just experienced, many people had issues with the heat, and now winter is just around the corner bringing problems and anxieties of its own.
MS symptoms can be exacerbated as the temperature drops. It is not known exactly why the cold has a negative effect on people with MS symptoms. Some of the symptoms that can be exacerbated by the cold weather are:
One additional issue may be the shorter days and not being exposed to as much direct sunlight, therefore not getting as much natural vitamin D as in summer months. The lack of sunlight, the shortening of the days and the difficulties getting out and about can also be contributing factors towards negative mental health with potentially worsening anxiety and depression.
Like many other aspects of living with MS, a little planning and forethought can go a long way when coping with activities in the winter.
If you want to chat about any aspects of living with multiple sclerosis, the MS-UK Helpline team are here to help. Just call us on 0800 783 0518, email us or use our live web chat service to get in touch.
I am thrilled to share a sneak peak into the latest issue of New Pathways magazine, which is out now!
Our cover star this issue is MSer and HR Specialist Rebecca Armstrong, who discusses being your own boss and taking a step into self-employment on page 16.
On page 24-25, wellness coach and Director of Work.Live.Thrive Zoe Flint discusses how relaxation can help boost your immune and central nervous systems. This feature all about mindfulness for MS shares Zoe's insights and her top 5 things to get your started.
Also, MSer and Feature Writer Ian Cook reveals his first-hand experience of becoming a carer. Ian says, 'It may sound strange to say this but I believe being disabled is, in many ways, the perfect qualification to care for another disabled person.' Read the full article on page 12, and don't forget to check out his 'revisited' article on page 42 all about Shopmobility.
Fats have once again been dominating the news of late, so we asked MSer and Nutritional Science Researcher Sharon Peck to reveal the truth and explain what we really need to know on page 19. We also take a look at the natural remedies lurking in the back of your kitchen cupboard that could help relieve MS symptoms on page 18.
If you would like to see something specific in New Pathways please email me and let me know your thoughts or feedback.
Editor, New Pathways
This issue of New Pathways magazine is jam packed full of a variety of news, features and real life stories. Start your read by catching up on all the latest developments in MS on pages 4-10. Then why not discover nine anti-inflammatory foods that could benefit your diet and MS on page 34.
Next we take a look at how a condition that predominantly affects women, actually impacts men on page 12. And on pages 30 and 32 MSer and feature writer Ian Cook revisits Access to Work and gives electric wheelchairs a spin.
Stem cells research and personal stories are still dominating the news, so we thought we would produce an update on this ever popular treatment option on page 24.
Also in this issue, MSer and HR Specialist Rebecca Armstrong explains how to get the best out of occupational health on page 16, we take a look at the therapeutic benefits of horse therapy on page 18, and Rosalind Barton reveals the highlights of her surprisingly accessible trip to Singapore.
Editor, New Pathways
Now that I’ve got your attention I should apologise to Professor John Paul Leach, consultant neurologist at the University of Glasgow because the headline of this story isn’t entirely true. Unfortunately, all he is guilty of is doing his job and have a hypothesis for something we all want for multiple sclerosis (MS) – a cure.
Professor Leach has hypothesised that MS is caused by three-hits, strictly in order, in genetically susceptible persons. His three-tiered hypothesis is as follows:
A clinic-epidemiological model of MS as a rare late complication of two sequential infections (with the temporal sequence of infections being important)
A proposal that the first event is helminthic infection with Enterobius Vermicularis (threadworm), and the second is Epstein Barr Virus infection
A proposal for a testable biological mechanism, involving T-Cell exhaustion for Epstein Barr virus protein LMP2A.
The professor and his team believe that this model satisfies some of the as-yet unexplained features of MS epidemiology, is consistent with the clinical and neuropathological features of the disease and is potentially testable by experiment.
Put simply it is thought that MS develops when a susceptible person contracts two separate common infections, threadworm and the Epstein Barr Virus, which cause the body to attack itself. Doctor’s now believe that if this in fact is the case, a vaccine for one of the conditions, such as the Epstein Barr Virus could be created to prevent future people developing the condition.
Some of the main news outlets have sensationalised this story. Yes this is an exciting hypothesis, but if we will have to sit back and let the experts conducted experiments and clinical trials before we find out if this is truly an option for the future.
Professor Leach’s hypothesis was published in the journal Multiple Sclerosis & Related Disorders.
Blog by Sarah-Jane, Editor of New Pathways Magazine
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...
Most people with MS recognise the expertise of their doctors and nurses, but somehow feel that there doesn’t seem to be enough time to cover all the things that matter to them and sometimes important things get missed. A group of people with MS and healthcare professionals are working together to improve clinic visits.
The group is called MS in the 21st Century. Many countries are represented and we learn from each other. We meet up a few times a year. We work to improve MS health care by understanding each other’s priorities and modelling partnership between people with MS and health professionals.
We have recently published a paper in a scientific journal which includes authors who have MS and also authors who are health professionals. This is a ground breaking project. The authors have discussed the priorities they have in an MS clinic visit and agreed a list of unmet needs from the viewpoints of both people with MS and health professionals. We have developed the paper jointly. As well as highlighting our different perspectives, we have also made practical recommendations. Our aim is to bridge the gaps between what people with MS and health professionals expect and provide.
We hope that the publication of this paper will be a key step towards ensuring that MS care addresses the expectations, priorities and needs of people with MS. It is vital that we work together to support people with MS to be fully engaged in managing their own condition. The paper emphasises the perspective of people with MS and how essential their involvement is in high-quality MS care.
From my own work as a neuropsychologist, I am particularly concerned to increase understanding of the psychological impact of MS, including cognition, mental health and wellbeing. We need to increase awareness of how these impacts can be recognised and successfully addressed.
Birgit Bauer, another author and a person with MS says, ‘As a person with MS, I cannot overstate the significance of this publication. I am hopeful patients everywhere and their healthcare teams will recognise the need for better communication and partnership with the ultimate goal of more effective and personalised care.’
"Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: a combined perspective from the MS in the 21st Century Steering Group" is published in the peer reviewed journal, Multiple Sclerosis and Related Disorders (MSARD), and is freely available online now. DOI: 10.1016/j.msard.2017.11.013
If you are a person with MS, or are close to someone who has MS, and you are interested to help Professor Dawn Langdon’s team in their work on psychological aspects of MS, please email firstname.lastname@example.org.