MS Nurse visit

No appointments have yet been booked for Sue Barnden.  She is at the centre all day on Thursday 26th September, and you can book a 45 mins slot.  This is the first time she has been twice in one year, I do hope we can make her visit worthwhile.  Please contact the centre for appointments.

Research request from Kings College London

Source Kings College London: “I am a third-year psychology student at King’s College London, currently assisting a PhD student, Jowinn Chew (cc’d in this email), on her research supervised by Dr Colette Hirsch and Prof Rona Moss-Morris from the Health Psychology Department. The research is focusing on identifying the cognitive mechanisms which underpin and maintain anxiety surrounding illness uncertainty within MS.

At the moment we are in the process of developing a new cognitive bias modification for interpretation(CBM-I) intervention specifically for MS population, and I am wondering if you would be willing to pass on my information to any people with MS who would be willing to help us/ put up a poster regarding this research (attached in this email).

We use PPI (Patient and Public Involvement) in research to help us understand the views, needs, and priorities of patients. This involvement can ensure that the research is as useful, accessible and meaningful as possible, as well as acting in the best interests of affected patients. For more information, please also refer to the attached information sheet in this email.

In regards to the current research, this may involve 1) Reviewing some learning materials for developing our new intervention; 2) Telling us more about their specific MS symptoms through short interviews; 3) Testing out another similar online learning platform for Parkinson’s disease and giving us feedback on how we could improve in creating a similar learning platform solely for MS.

Interested? Have more questions? 
Email  Jowinn or Milton
Phone 07793 089786 / 0745 6134518

Early MS scans ‘can predict long-term prognosis’

Source BBC: Scans carried out when someone is first diagnosed with multiple sclerosis can predict their long-term prognosis, research has shown.

Magnetic resonance imaging (MRI) scans are already a key part of the diagnosis and management of MS.

But a 15-year study of people with clinically isolated syndrome (CIS), who can go on to develop MS, suggests they can also predict future disability.

The MS Society said more information would help patients’ treatment choices.

The organisation, which funded the study in the journal Brain, added that knowing more about their condition would also reduce uncertainty for patients.  Read on.

MS: Drugs trial hope for multiple sclerosis patients

Source BBC:  Welsh patients are taking part in a drugs trial aimed at slowing late-stage multiple sclerosis progression.

Experts are looking at how effective a drug is after a smaller study found it may slow down neuronal degeneration.

Euryl James, of Llangennith, Gower, said she got involved as a breakthrough could be life-changing.

A total of 1,000 patients in 20 UK centres are involved in the study, including 25 in Swansea’s Morriston Hospital and others in Cardiff.

MS is a neurological disorder affecting movement and causes other problems.

Morriston Hospital neurologist Dr Owen Pearson said: “The study aims to find out whether this treatment will slow the death of nerves and therefore slow the progression of the disease.”

The first study, which examined MRI data, showed neuronal degeneration – or the rate of “brain shrinkage” – reduced by 40% in those taking statins – a medicine used to lower cholesterol – compared with those on a placebo.  Read on.

EMA warns that Gilenya must not be taken during pregnancy.

Source MS Trust: The European Medicines Agency (EMA) has recommended that Gilenya (fingolimod) must not be taken by pregnant women or women of childbearing age who are not using effective contraception.

A review of Gilenya and pregnancy was carried out by the EMA’s safety committee following reports which suggested that babies born to mothers taking Gilenya during pregnancy have a greater risk of birth defects compared with the general population.  Read on.

100 club winners for July

100 club winners for July:

1st – Linda Tierney

2nd – Sue Doran

3rd – Steve Lewis

Sharing a prize fund of: £77.50

You got to be in it to win it!!  Speak to Sue for an application form, only £5 a month!

Phase 1 Trial of T20K, Plant Protein-derived Therapy for MS, Doses 1st Group of Healthy Men

Source Multiple Sclerosis News Today: A first group of healthy volunteers in a Phase 1 trial assessing the safety and tolerability of T20K, Cyxone‘s plant protein-derived candidate for the treatment of multiple sclerosis(MS), has been dosed in a study taking place in The Netherlands, the company announced.

T20K is an investigational prophylactic (preventive) therapy, possibly intended for all MS forms. The eight male volunteers that make up a group are being given one or two infused doses of the potential treatment and their blood analyzed.  Read on.

Phase 3 Trial of Ibudilast Planned for SPMS Patients with Inactive Disease, MediciNova Says

Source Medical News Toady: A Phase 3 trial is planned to confirm the safety and efficacy of oral ibudilast (MN-166) in treating people with secondary progressive multiple sclerosis (SPMS) without relapses or those whose disease is not active, MediciNova announced.

Data from this single Phase 3 study may be used to request marketing approval for ibudilast with the U.S. Food and Drug Administration (FDA), the company said in a press release.

Ibudilast, a first-in-class small molecule, works to suppress three cytokines (small signalling proteins) that promote inflammation: IL-1ß, TNF-a, and IL-6. It may also increase the activity of the anti-inflammatory cytokine IL-10, and help block the signals of toll-like receptor 4 (TLR4) that is involved in inflammation. All these activities are thought to contribute to ibudilast’s ability to ease neuroinflammation.  Read on.

Scientists have discovered that a specific brain cell known as a ‘projection neuron’ has a central role to play in the brain changes seen in multiple sclerosis (MS).

Source Science Daily: The research shows that projection neurons are damaged by the body’s own immune cells and that this damage could underpin the brain shrinkage and cognitive changes associated with MS. These new findings provide a platform for specific new MS therapies that target damaged brain cells to be developed.

Scientists have discovered that a specific brain cell is known as a ‘projection neuron’ has a central role to play in the brain changes seen in multiple sclerosis (MS). The research, published today in Nature, shows that projection neurons are damaged by the body’s own immune cells and that this damage could underpin the brain shrinkage and cognitive changes associated with MS. These new findings provide a platform for specific new MS therapies that target damaged brain cells to be developed.  Read on. 

Scientists Identify Differences Between Relapsing/Remitting and Progressive Multiple Sclerosis

Source BioSpace: Multiple sclerosis (MS) is an often-disabling disease of the central nervous system caused by damage to the myelin coating around the nerves. 

The disease is quite variable but falls into two broad types, relapsing-remitting MS (RRMS), in which patients often go into clinical remission, and progression MS, which does not have remission periods, but is marked by continued deterioration. RRMS affects about 85% of MS patients, although about half of RRMS patients eventually develop progressive disease.

Researchers with City University of New York and the Icahn School of Medicine at Mount Sinai have identified specific biological differences between the two types of diseases, which has the potential to lead to new therapeutic approaches and diagnostic testing. They published their research in BRAIN, A Journal of Neurology.  Read on.