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.
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
In the task, you will be presented with fifty short descriptions of different scenarios. This will be split into ten blocks of five, with a rating task after each block.
Using a 4-point scale, the researchers would like you to rate how similar in meaning each sentence is to the description that you read with that title. The ratings will be used to inform the materials for tasks, and it’s completely anonymous.
You can do the task online using this link: https://kcliop.eu.qualtrics.com/jfe/form/SV_5cAkSnZHlxPZ1nT
Chew’s research is focusing on identifying the cognitive mechanisms which underpin and maintain anxiety surrounding illness uncertainty within MS. Jowinn Chew is supervised by Dr Colette Hirsch and Prof Rona Moss-Morris.
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
This year, MS-UK will be coming to the end of our current Strategy, and right now we're exploring what we should focus on in the next three years. But we need your help to get it right, and make sure that the wider MS community is included every step of the way!
Please take our short survey today and let us know what barriers you face to feeling happier and healthier in your life with MS. Perhaps you feel there is a vital MS service missing? Maybe you believe MS-UK could raise awareness of multiple sclerosis among the general public? We'd like to know your opinions, and use your voice to shape our work in the next three years.
Your voice matters. Thank you for sharing it with MS-UK!
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.
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.
More than two million people worldwide live with MS, of which 2-3 times more are women than men, and the condition is the leading cause of neurological disability among young adults. So what is their prognosis?
'We don’t really know what an individual’s prognosis will be when we first diagnose the disease,' relates Dr. Adi Vaknin, Senior Neurologist at Hadassah Hospital Ein Kerem. 'That is because there is so much heterogeneity in outcomes.'
While 15% - 20% of MS patients do very well, 50% - 70% need strong medicines to live a quality life. It is this uncertainty that has led Dr. Vaknin to start a biobank to study clinical outcomes for newly diagnosed patients. By identifying a set of proteins (biomarkers) within an individual’s peripheral blood, Dr. Vaknin and her research team have been able to predict, for example, a patient’s response to interferon, a common treatment for MS.
The past 15 years have seen the development of some very effective MS medications. Currently, Dr. Vaknin reports, there are 10 medications available, but their effectiveness varies from person to person. 'There is also a limited time window to start treatment. If you miss that window, some of the medicines are not very effective.' she says. There are, however, 2 new medications on the market specifically designed to treat progressive MS.
One common thread in MS is the degeneration of myelin, the sheath that protects the nerve fibres. Dr. Vaknin is researching the ability of certain proteins, found in the fluid surrounding the brain, to renew damaged myelin. Being able to rebuild myelin in MS patients is only in the research stage, although she estimates that 'it will happen in the next five years.'
In the meantime, what advice does Dr. Vaknin have for those who are living with MS? She recommends 2,000 units per day of Vitamin D, particularly found to be effective in preventing the occurrence of the disease in any offspring. Dr. Vaknin also suggests exercise, a healthy diet and no smoking. She adds living a less stressful life to the list, but acknowledges that this 'is not so easy to do.'
Download MS-UK’s Disease Modifying Therapies Choices leaflet for more information about all available MS drugs.
Employment is a major challenge for many people with multiple sclerosis (MS) and 50% are unemployed across Europe, even at Expanded Disability Scale Score (EDSS) 3. It is likely that “invisible symptoms” are the reason for this and one of these invisible difficulties can be with memory and concentration – cognition.
Dawn Langdon, Professor of Neuropsychology at Royal Holloway, University of London and her research team are asking for your help. They are recruiting for a study which will investigate how planning, organisation and memory (together called executive skills) affect work performance.
Traditionally, cognitive function is assessed in clinics with paper-and-pencil tasks. Her team are evaluating a non-immersive virtual reality task, which is set in an office. The Jansari Assessment of Executive Function (JEF) has successfully measured executive function in other clinical groups and this is the first study with people with MS.
The study is recruiting 53 people with MS from a number of UK MS charities and 53 matched healthy control participants. Each will complete a set of questionnaires measuring fatigue, mood, cognition, work performance and coping, as well as the JEF. This will require a scheduled interview in central London, which will take a maximum of two hours.
This study will investigate three things: whether the JEF is sensitive to executive function difficulties in the MS population, whether the JEF is more closely related to work place performance in comparison to traditional pen-and-paper neuropsychological tests, and whether the JEF scores are related to coping styles.
The Principal Investigator is Laura Clemens, a graduate psychologist who is currently training to become a clinical psychologist at Royal Holloway, University of London. She is supervised by Dawn Langdon, who is a clinical neuropsychologist and Professor of Neuropsychology at the same institution. The study has ethical approval from the Royal Holloway Ethics’ Committee.
If you would like more information, please contact Dawn Langdon on 01784 443956 or email email@example.com.