Make sure people with MS can access FES

Posted by & filed under MS News.

The MS Society need your help to ensure that Functional Electrical Stimulation (FES) is consistently funded and prescribed for people with MS across the UK.

FES is a treatment used to stimulate movement in weakened or paralysed muscles. It has been proven to improve the lives of many people with MS, making walking easier and reducing the effects of foot drop.  This allows people to more easily take part in daily living and social activities as well as feeling more confident and independent.  Despite this, FES is not being funded consistently across the UK.

How you can help

Click here to write to your local health body to ask if they are providing this potentially life-changing therapy. The MS Society are holding a webinar for healthcare professionals later this month to ensure that they understand the benefits of FES. When you send your email to your local health body, they will be sent details of the webinar so they can sign up to attend.

FES at the Centre

We are able to offer FES assessments for foot drop and if suitable short-term loan of an FES machine for our members to trial at home. If appropriate we are then able to refer on to the NHS Specialist Functional Electrical Stimulation service based at Salisbury Hospital. If someone would like an FES assessment please speak to your Physiotherapist or email anwen@bmstc.org. There is also more information on our FES website page

Fancy a trip on a boat?

Posted by & filed under Events.

Wallingford Accessible Boat Club are a charity that are enabling disabled and elderly people to get out on the River Thames.  Start point currently Benson Marina.  2hr trip.  No cost involved though donations appreciated.  Takes 6 passengers dependent on number and size/weight of wheelchair including carers.  I thought it would nice to arrange a trip for some of our MS members.  If you are interested, let Sue know and we will try and organise something……….

Enable Magazine: Presenting the May/June issue

Posted by & filed under Information.

Presenting Enable Magazine
May-June issue

The UK’s leading disability and lifestyle title

Introducing the May-June issue of Enable Magazine.
We’re so excited to share this issue with you and your network.

id:image002.png@01D6B2CA.E7708FE0

This issue, we’re marking Carers Week by highlighting four unpaid carers’ unique experiences. Caring can come in many different forms including becoming a foster carer: we learn about the path to fostering with a parent. Also inside, disabled voices share everything from the best accessible beauty products to the power of finding your true self. A parent and a young woman discuss the long-term effects of meningitis, and we go behind the scenes of a project that could change the future of Alzheimer’s research.

Plus, we’re helping you get ready for summer with activity and holiday inspiration, and two parents share their tips on preparing for a trip with an autistic child. As the cost of living increases we spotlight ways to save money and help you get informed about pensions, before speaking with a volunteer about transferable skills and answering your employment questions with founder of Evenbreak, Jane Hatton.

Council tax reductions for disabled people

Posted by & filed under Information.

If you meet certain conditions, you can get a reduction of one council tax band on your bill each year. For example, a Band D property will be charged Band C. Look on your council website for more information.

VAT on some building works and adaptations for disabled people

Certain types of building works and adaptations eg wetrooms are zero rated. The contractor should be aware of this but may need reminding.

CEA card

The CEA Card is a national card scheme developed for UK cinemas by the UK Cinema Association (UKCA). The Card enables a disabled cinema guest to receive a complimentary ticket for someone to go with them when they visit a participating cinema. It costs £6 pa. Their website is www.ceacard.co.uk

Dr Terry Wahls: Improving MS with Diet

Posted by & filed under Information.

Multiple sclerosis (MS), is an auto-immune condition affecting more than 1 million Americans.And like other autoimmune conditions, it it’s becoming more prevalent.The role of genetics in MS is not significant.Lifestyle choices however may play important roles in regulating the immune system, and therefore should certainly be looked at as it relates to this and other autoimmune conditions.My guest today, Dr. Terry Wahls, is herself a multiple sclerosis patient.On the podcast she describes how aggressive her multiple sclerosis became, how she herself did not seem to realize any dramatic improvement from pharmaceutical intervention, and how she ultimately discovered the important role of nutrition in terms of regulating her immune system and as such, the disease course of her multiple sclerosis situation…
Watch Now

Zoom details for AGM on 9th June at 3pm.

Posted by & filed under Centre News.

ANNUAL GENERAL MEETING 

Due to the unusual circumstances again this year and social distance measures the AGM will take place via a zoom* meeting on:

Thursday 9th June, 3pm

The code is 718 389 8662

Password: OMSTC (uppercase)

*If you need to know how to access Zoom, contact Sue, if you do not have a speaker or microphone on your PC, you can use your phone.

Nominations and seconders are requested for a max of 10 Committee members.  They must be emailed to Sue at ms.therapy@btconnect BEFORE the meeting.

(Nominations can only be accepted for paid up members and can only be made by paid up members.)

The Officers of the Company will be elected from the Committee Members

They will consist of :   a Chair, a Treasurer and a Secretary

If you are unable to attend the meeting to vote you may appoint a proxy to vote for you. 

New drug approved for relapsing remitting MS in England and Wales

Posted by & filed under MS News.

Vumerity (diroximel fumarate) approved for relapsing remitting MS in England and Wales

The MS Trust have recently reported that Vumerity (diroximel fumarate) has been approved by NICE (National Institute for Health and Care Excellence) for people with active relapsing remitting multiple sclerosis.

NICE has recommended that Vumerity can be prescribed as a twice daily tablet for people with relapsing remitting MS who are having relapses or have MRI evidence of MS activity.

This is excellent news. Vumerity is as effective as Tecfidera but has fewer stomach problems, meaning you can take it with a meal or on an empty stomach. An effective treatment that fits into your daily routines means you can live a life with MS that is not defined by MS.

For full details on this news, visit the MS Trust website by clicking here.

MS Society’s ‘Extra Costs of MS’ survey

Posted by & filed under MS News.

The MS Society has launched a survey for people in the UK who have MS, or who live with someone who does, to find out about the extra costs of MS.

The increasing cost of living is putting pressure on people across the UK and MS can cause living costs to mount up even further. The MS Society want to understand more about these costs and how they impact on people’s lives and will use the results of this survey to inform a UK-wide campaign this autumn. 

Your responses will be anonymous unless you agree to help with more research and provide contact details at the end of the survey.

You can fill the survey out online at mssoc.uk/3uZLDSa

If you would prefer to complete this survey on paper or by telephone, please contact evidence@mssociety.org.uk or call 020 3873 6942

Behind the headlines: Could an immunotherapy treatment for the Epstein-Barr virus (EBV) treat MS?

Posted by & filed under MS News.

A new immunotherapy treatment in a trial for progressive MS hit the headlines recently. News reports say it could reverse or stabilise the progression of MS by targeting the Epstein-Barr virus (EBV). We looked behind the headlines to find out more.

The trial was already underway when a study provided the strongest evidence yet that EBV may play a key role in causing the development of MS. The experimental immunotherapy, called ATA188, involves transplantation of immune cells from donors without MS who have EBV, into people with MS. But these aren’t just any immune cells. They patrol the body specifically for EBV-infected cells and destroy them.

During the trial, 24 people had the treatment for one year at varying doses and their level of disability was measured using the Expanded Disability Status Scale (EDSS). This mostly focuses on walking ability, but also measures other things like balance, eyesight and memory.

Early data from the trial showed that after 12 months on the trial, 5 people had worsening of their EDSS, 7 had an improvement, and 13 had no change.

This is a very early trial and final results haven’t been reviewed by other scientists yet so it’s too soon to conclude that the treatment could have a positive effect on someone’s MS.

Researchers are trying to find out what EBV does in the body that could lead to the development of MS. Recent research suggests proteins on EBV-infected cells and some proteins in our nervous system look very similar. So the immune system could attack both by mistake in people with MS.

A larger trial is now being conducted, which will initially recruit 80 people with progressive MS in the US and Australia over the next 5 years. So it could provide stronger evidence on ATA188.

For more on this story, visit the MS Society website at https://mssoc.uk/3OFYT6i