Dr. Bill Code from Canada spoke at last year’s MS National Conference

Dr. Bill Code from Canada spoke at last year’s MS National Conference.  He was diagnosed with MS 22 years ago and as an anesthesiologist, his response had been to extensively research all he could about ways in which to live with MS.  Dr Code has has now produced a brilliantly researched book – Solving the Brain Puzzle – looking at how to approach MS from an integrated approach.  The book considers among other things:

  • the effects of Diet and the links between the Gut and the Brain, 
  • the range of interventions from Oxygen Therapy through Physiotherapy and Massage Therapies,
  • the importance of exercise and sleep

It is written for those with some form on Neurological condition, not just MS and is written for the Lap Person – though there is plenty of medical language.  Many of you will also be pleased to note that Bill includes references to all his research so that each note or recommendation comes with a reference to the supporting research.
If you would like to borrow the copy we have at the centre, please speak to Sue.

Brain ageing has been reversed for the first time – offering hope of cure for Alzheimer’s disease & multiple sclerosis

Source The London Economic: The groundbreaking feat was achieved by destroying a protein that stiffens the organ – much like muscles and joints.

Brain ageing has been reversed for the first time, offering hope of a cure for Alzheimer’s disease and multiple sclerosis, say British scientists.

The groundbreaking feat was achieved by destroying a protein that stiffens the organ – much like muscles and joints.

Just like bones it ‘creaks’ as we get older – impairing the function of stem cells that generate neurons.

Using the brains of rodents, lab tests showed they could be rejuvenated by focusing on oligodendrocyte precursor cells (OPCs).

This is a type of stem cell needed to repair myelin – the fatty insulating material that coats nerve fibres.

In multiple sclerosis this is damaged. The loss of OPCs is also linked to dementia and Parkinson’s disease. Their function even declines with age in healthy people.

The findings published in Nature shed fresh light on the ageing process, report the Cambridge University team. Read on.

Lack of residential care for younger people with disability

Source ITV: Nina, 46, is housed in an old people’s home.

he’s just 46 years old. But Nina Thair has been housed in an old people’s home in Sussex. She has multiple sclerosis – and her local council says there is nowhere else suitable for her.

Nina’s problem – the council’s problem – is that the lack of money for social care, means that residential places are in short supply.

And with nowhere for the needs of younger disabled people in Brighton, the council says this is the only option. John Ryall reports. Watch here.

NICE rejects Sativex in draft guidance on cannabis-based medicinal products

Source MS Trust: Draft guidance published today on August 8 does not recommend Sativex as a treatment for MS spasticity because it is not a cost-effective treatment.

In November 2018, the legal status of cannabis was amended to allow specialist clinicians to legally prescribe cannabis-derived medicinal products to patients with an exceptional clinical need.

To support this change, NICE (National Institute for Health and Care Excellence) has reviewed evidence for the benefits and costs of cannabis-based medicinal products and drawn up guidance for health professionals and the public.   

The draft guideline(link is external) acknowledges that, for people with MS, Sativex can be an effective treatment for MS spasticity which has not responded to other therapies.  However, Sativex is not recommended because, at its current list price, it is not considered to be cost-effective.  The calculations used to reach this decision indicated that Sativex would be cost-effective if the list price was reduced from £375 to £188 per pack.  Read on. 

The MS Trust have launched a new pack to help teachers and pupils raise awareness of MS and dispel some common myths and misunderstandings

Source MS Trust: MS Trust supporter Jenna Chudasama teaches at a secondary school in Leicester and recently used the pack to deliver an assembly to students about her own MS experience. “I hope that I inspired others to live their life to the full, no matter what challenges they are faced with,” Jenna tells us.

I was grateful to be given the chance to deliver assemblies at Sir Jonathan North College, the school that I teach at, to explain what it is like to live with an invisible condition.

It was a daunting experience at first as I did not know how my students would react. And, to be honest, I remember questioning my decision when, despite showing a small group of students an MRI scan and explaining how lesions work, someone still said that I looked fine and healthy. However, I was eventually able to help my students understand a little more about the condition by simplifying the terminology, using a lot of my personal experience and the experience of people in the public eye, such as the athlete Kadeena Cox. Interestingly, some of my older students came to tell me that they know someone in their family or a family friend that also lives with the condition and I hope that I was able to offer additional support to them.  Read on. 

Grant from MS Society, Parkinson’s UK to Establish Digital Brain Bank

Source Parkinson’s News Today: The Multiple Sclerosis (MS) and Parkinson’s Tissue Bank at Imperial College London, is the largest repository of brain and spinal cord tissue samples in Europe.

Now, the MS Society and Parkinson’s UK has announced a £3 million grant (about $3.6 million) to support its transition into a digital brain bank powered by a virtual reality platform, which will provide new tools for researchers around the world with the ultimate goal of stopping Parkinson’s and other neurological diseases.

These new technologies will be used to create high-definition pictures of brain tissue donated by people with Parkinson’s and multiple sclerosis (MS) after their death.

The Tissue Bank, established in 2009, originated from The UK Multiple Sclerosis Tissue Bank and the UK Parkinson’s Disease Society Tissue Bank, both located at the Imperial College in London. Over the years, this repository has collected samples from patients with MS and Parkinson’s disease, as well as healthy donors. Their collection has a large number of well-documented clinical cases that have been used in more than 700 research projects. Read on. 

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.