In response to the lack of awareness in relation to MS-related cognitive impairment (see the results on the right of the current poll) we are participating in a new study to standardise the Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS) in the UK.
Background: As you may be aware 30-70% of MSers are affected by difficulties with their memories and other thinking skills. However, cognitive testing can be a lengthy process and is usually only available at specialist centres and even then not everyone gets them. As a result MSers may be unable to gain an understanding of their difficulties that could enable them to compensate. This study seeks to show BICAMS is a valid, briefer assessment tool that could be used by a variety of health care professionals, making it more widely available.
Who is organising the research? The research is being run by Alex Orchard, a trainee clinical psychologist, as part of her Doctoral Thesis and is sponsored by her University Royal Holloway, Egham, Surrey. The Royal London Hospital is the main participant recruitment site and Alex has asked us to see if you would like to take part. Taking part is entirely voluntary. Your choice to participate or not will have no impact on your NHS care at The Royal London Hospital or with any other healthcare professionals.
Contact: Alexandra.Orchard.2010@live.rhul.ac.uk
Aims: The project aims to validate a cognitive assessment tool for MSers living in the UK.
Background: As you may be aware 30-70% of MSers are affected by difficulties with their memories and other thinking skills. However, cognitive testing can be a lengthy process and is usually only available at specialist centres and even then not everyone gets them. As a result MSers may be unable to gain an understanding of their difficulties that could enable them to compensate. This study seeks to show BICAMS is a valid, briefer assessment tool that could be used by a variety of health care professionals, making it more widely available.
Who is organising the research? The research is being run by Alex Orchard, a trainee clinical psychologist, as part of her Doctoral Thesis and is sponsored by her University Royal Holloway, Egham, Surrey. The Royal London Hospital is the main participant recruitment site and Alex has asked us to see if you would like to take part. Taking part is entirely voluntary. Your choice to participate or not will have no impact on your NHS care at The Royal London Hospital or with any other healthcare professionals.
What is involved: If you decide to take part you will meet with Alex to complete various tests, which measure your attention, memory, language, visuo-spatial and problem solving skills. Participation takes about 2 hours and can be done at your home or Royal Holloway, which ever is more convenient. You may find some of the tests easy and others more challenging but most people find them enjoyable.
How to get involved? If you are interested in taking part please contact the neurology team at the Royal London informing them that you want to be screened for this study. More in depth information sheets are available on request. Please note that should you change your mind you can withdraw at any time without giving a reason.
Contact: Alexandra.Orchard.2010@live.rhul.ac.uk
Thank you!
Is there a link to contact the neurology team or Alex? Cheers!
What's the point of being tested unless there's a treatment? This is another issue to scare the pants off people with the disease – "in addition to your mobility problems, you've got cognitive problems.." Until you guys can get some effective treatments in placee, I'd rather not know.
alexandra.orchard@nhs.net
I don't agree with the previous anonymous comment. Knowing early about any cognitive impairments I have means my family and I can be prepared and seek help in compensating for some of the problems. I'm contacting Alexandra !
IMO we will probably find the same process responsible for loss of cognitive function in Alzheimer's are probably operating in MS.It follows the same strategies that MAY be helpful in delaying Alzheimer onset MAY also be helpful in delaying cognitive decline in MS. Where interventions are cheap, absolutely safe, use only traditional foods or are basic common sense lifestyle interventions, there can be no rational reason to discourage people from taking these matters into their own hands. We know Vitamin D & magnesium deficiency are both associated with Mild cognitive impairment that typically precedes AD. It's simply common sense to keep 25(OH)D at the natural level humans living naked outdoor achieve vit d equilibrium & human milk vit d replete.Pale skinned humans had an evolutionary advantage enabling survival away from the equator. The ability to create and store Vitamin D may well have been that crucial factor. We only have significant stored reserves of Vitamin D in tissue around 125~175nmol/l.At the end of a good summer most UK adults only have 75nmol/l, about half that living naked outdoors would naturally achieve. Restoring that natural evolutionary advantage is simply common sense. We have a recommended daily amount for magnesium intake. We should make sure our daily food intake more than meets the RDA for our age/sex. The "medical food" Souvenaide now being touted for AD patients is based on choline, uridine and omega 3 DHA. These are easily sourced from liver egg yolks kidney Krill Oily fish/fish oil, Chris Masterjohn has good information on choline. Several of the AD drugs try to preserve choline in the brain by preventing it's breakdown. But it makes more sense to make sure you don't run short in the first place. It's not like liver is expensive.Another medical food for AD is AXONA which is based on Medium Chain Triglycerides. The idea is to upply ketones as an alternative fuel source to protect neurones when glucose metabolism is dysfunctional. We can all swap to coconut oil or use MCT oil. We can reduce carbohydrate intake to around 50g daily that is generally sufficient to enable fat burning rather than fat storage. There's some recent research showing AD incidence is related to ceramide levels, Higher inflammatory ceramides more/earlier AD onset. We know magnesium/vitamin D deficiency promote ceramide formation. We also know higher adiponectin levels degrade ceramide so it makes sense to ensure we have regular sources of curcumin, resveratrol, green tea, vitamin d, magnesium, melatonin omega 3 DHA. Common sense should be sufficient for most people to understand eating foods that promote inflammation is not a sensible idea for anyone, least of those most vulnerable to brain damage. The idea that MS like diabetes/Alzheimer's is a result of metabolic dysfunction is worth considering and no one can dispute that eating only real foods (as opposed to industrially ultra-processed junk foods) as close as possible to those available to early humans probably gives our DNA the raw materials to function best with.
Here is an example where using a traditional food item (drinking green tea through the day)supplies EGCG (Epigallocatechin gallate) that crosses blood-brain barrier, provides antioxidant support and lowers damaging levels of brain inflammation.Green tea consumption and the risk of incident functional disability in elderly Japanese: the Ohsaki Cohort 2006 StudyIt is very easy when you have a progressive chronic condition to assume all of the progressive decline, either physical or mental is the result of the underlying condition and not to some extent the natural consequence of ageing. Changing to drinking Green Tea through the day instead of your usual beverage isn't a big deal and will by generally reducing inflammatory status, help other strategies, such as correcting vitamin D/Magnesium/omega 3 insufficiency states. Apart from the anti-oxidants Green Tea and Vitamin D we should also consider Melatonin and MS Natural ageing means year on year our ability to produce Vitamin D3 and Melatonin declines. There are things we can do to improve the natural production of both but in the same way it's only a few pence daily to keep optimal vitamin D3 levels it's almost equally as cheap to keep melatonin levels reasonable. f.lux: software to make your life better is free and easy to use. Sleep hygiene is relatively easy to keep bedroom totally dark. But if all else fails it's cheap enough to use a time-release melatonin supplement from the USA. I used to have to get up in the night to pee which was a bit of a nuisance as I have to self-catheterise. Melatonin not only reduces urine output but also relaxes bladder wall increasing capacity. So problem solved. The effect of Melatonin on Depression,Anxiety, Cognitive Function and Sleep Disturbances Although this study is in relation to breast cancer Melatonin affects everyone and a lack of bright light daytime outdoor exposure and darkness at night will reduce everyone's melatonin level. So what they say here In other settings, some studies have shown that melatonin can attenuate cognitive dysfunction, and this mechanism together with the general improvement of sleep could be beneficial on cognitive disturbances in this specific group of patients. The point is that we don't have to wait for further research to find out how we benefit from a good night's sleep. For less than £10 you can buy a years supply of 1mg, 3mg, 5mg time release melatonin and see what a difference it makes to you. It's actually a very good iron chelator so some of it's action will be by stopping iron oxidation. If your not on meds becoming a blood donor is a good way of offloading iron overload for free. You can become a blood donor under 66 yrs old and then continue donating every 12 weeks(male) 16 weeks (female) It's postmenopausal women and all men that are most vulnerable to iron behaving badly.
WISH I LIVED THERE…..