Study shows that drug slows brain shrinkage in multiple sclerosis

Source UAB News: Results from a clinical trial of more than 250 participants with progressive multiple sclerosis revealed that ibudilast was better than a placebo in slowing down brain shrinkage.

The study also showed that the main side effects of ibudilast were gastrointestinal and headaches. The study was supported by the National Institute of Neurological Disorders and Stroke, part of the National Institutes of Health, and was published in the New England Journal of Medicine.

Robert J. Fox, M.D., a neurologist at Cleveland Clinic in Ohio, led a team of researchers across 28 clinical sites, including a team from the University of Alabama at Birmingham, in a brain imaging study to investigate whether ibudilast was better than placebo in reducing the progression of brain atrophy, or shrinkage, in patients with progressive multiple sclerosis.  Read on.

People with primary progressive MS need ocrelizumab now

Source MS Society: Ocrelizumab should be available on the NHS for everyone with primary progressive MS who could benefit. We call on NHS England, the National Institute of Health and Care Excellence (NICE) and Roche to work together to secure a deal to make that happen.

Raise your voice and help the MS Society tell NICE and NHS England: give people with primary progressive MS access to ocrelizumab.  Sign their petition

MS Annual Quiz Night, Friday 12th October

MS Annual Quiz Night, Friday 12th October, The Barn (Didcot Conservative Club), 7 for 7.30 start, £7 per person, up to 8 in a team.  Please advertise to your friends, put on your facebook post etc.

Please please can members donate some raffle prizes, especially drink, chocolates, biscuits etc.

Many thanks,

 

Click here for full details poster

Volunteers sought for help with University of Sheffield Research Study Design of an app to help with fatigue in MS

Do you or your partner have MS? Would you like to help design an app to help people with MS manage fatigue? The University of Sheffield has asked for volunteers to help with their research study. They asked a group of people with MS, and a group of healthcare professionals, about what they thought the contents and appearance of a fatigue management app should be. They would like to know how far you agree or disagree with the things they said. You can take part in this research if you are: over 18 years of age someone living with MS, or experiencing MS-like symptoms regardless of whether or not you have received a diagnosis you have a partner who has MS you are a professional who works with people with MS For further information contact Dr. Peter Cudd (Senior Researcher) at p.cudd@sheffield.ac.uk or Dr Abigail Millings (Lecturer in Psychology) at a.millings@sheffield.ac.uk

Novel sub type of Multiple Sclerosis

Source Science Daily: Cleveland Clinic researchers have discovered a new subtype of multiple sclerosis (MS), providing a better understanding of the individualized nature of the disease.

MS has long been characterized as a disease of the brain’s white matter, where immune cells destroy myelin — the fatty protective covering on nerve cells. The destruction of myelin (called demyelination) was believed to be responsible for nerve cell (neuron) death that leads to irreversible disability in patients with MS. Read on.

Do you have disability equipment that is no longer needed?

We all have or know someone with that bit of equipment stored in the house, the garage or shed, that’s no longer needed.

If you or a relative have community equipment that is no longer needed please call NRS on 0844 893 6960 (Monday-Friday 8.30am-4.30pm) to arrange for it to be collected FREE.

Not returning equipment costs social services and the NHS thousands of pounds every year -this money could be used to make sure other residents get the help they need. Find out more about NRS Healthcare here.

Other brain diseases reveal clues to primary progressive MS

Source MS Research Australia: Brain disease genes linked to primary progressive MS risk. 

Despite many genes being found that contribute to the risk of developing MS, so far research has not identified genes that are specific for the risk of developing the primary progressive form of MS. Now, a new international study has shown that rare changes to genes that cause other brain diseases may also play a role in primary progressive MS.  Read on.

What is SymTrac™

Source Novartis: SymTrac™ is a free app available on iPhone and Android that helps people with Multiple Sclerosis (MS) track general wellbeing and symptoms over time. The data recorded can be viewed in easy-to-read charts and shared with MS specialist teams to enhance consultation time and support decision making. SymTrac™ is the first MS app to have been approved on the NHS Health Apps Library.

Designed by people with MS for people with MS, SymTrac™ allows users to make the most of their vital consultation time by providing an objective picture of how their MS has been since their last appointment.  Find out more here.