ECTRIMS 2016 - picture of Tower Bridge in London
23 September 2016

MS in the media - ECTRIMS 2016

Reports of studies presented at the ECTRIMS meeting that took place from 14-17 September 2016.  Reports include research into disease modifying drugs for relapsing and progressive MS, stem cells and lifestyle factors in MS.

MS in the media logo (a pile of newspapers)
23 September 2016

MS in the media

  • MS at the Paralympics
  • Gene research for progressive MS questioned
  • Natural history of people on disease modifying drugs
  • MPs support call for medical cannabis
  • Film about footballer with MS released on DVD
  • Older people with MS
  • Ageing with MS
  • Progressive MS research funding
  • Guidelines on more than one long-term condition
  • ECTRIMS round up
MS in the media logo (pile of newspapers)
09 September 2016

MS in the media

  • How heat affects people with MS
  • Paralympians with MS
  • Negative attitudes to people with MS
  • Tamoxifen may help myelin repair
  • Genes don't suggest course of MS
MS in the media logo (pile of newspapers)
02 September 2016

MS in the media

  • The effect of childhood MS on parents
  • Review of the medical understanding of childhood MS
  • Explaining MS
  • Please offer me a seat
  • How lifestyle factors affect MS
  • Photography project focuses on MS
  • Low white blood cell count and MS
MS in the media logo (pile of newspapers)
26 August 2016

MS in the media

  • Genes and vitamin D
  • Siponimod trial in secondary progressive MS
  • Amiselimod trial results
MS in the media logo (pile of newspapers)
19 August 2016

MS in the media

  • Wales lagging behind in access to treatment
  • High blood pressure may be associated with MS progression
  • Neurological Alliance report on neurology and primary care
  • Benefits changes and eligibility for Motability
  • Camping with MS
Images of Crystal's jewellery
16 August 2016

Making jewellery to fight MS

Crystal tells us about her experience of living with MS and how it has led her to rekindle a love for jewellery making.

MS in the media logo
12 August 2016

MS in the media

  • Using mobility scooter for days out
  • New technique for stem cell transplants
  • Benefits of early treatment
Wooden doll lying back with exhaustion
11 August 2016

Invisible symptoms: the unseen side of MS

Many MS symptoms seem invisible to other people. This blog explores some of the reasons for this and suggests what you could do to raise awareness.

Image showing different types of MS health services
09 August 2016

How can we design services that work better for people with advanced MS?

As part of our MS Forward View project, we recently convened a meeting of MS specialists, carers and people with MS to look at different models of MS care and work out what are the most important factors to consider when designing services.

Kadeena Cox, para-athlete
09 August 2016

Grit and determination

Since being diagnosed with MS in 2014, Kadeena Cox has become a successful para-athlete, competing on the track and also on bike, and is part of Team GB going to the Paralympics in Rio in September

Getting the endorphins going- Judy and husband with bikes
09 August 2016

Getting the endorphins going

Judy Beveridge is 45 and has secondary progressive MS, which makes it hard to stay as active as she would like. But discovering tandem cycling last year has given her a whole new way to stay fit and get out in the country

Light in the darkness
09 August 2016

Light in the darkness

When Mel Hopper was diagnosed with MS in 2008, she felt like she had ‘stumbled into darkness’. But when she discovered blogs and forums for people living with long-term health conditions she found the personal support that helped her find a way out. Earlier this year she started her own blog at http://www.manylemons.com - here she explains why

Eight friends from London took part in a 300 mile cycle to Paris in May
09 August 2016

Eurostars!

Eight friends from London took part in a 300 mile cycle to Paris in May and have raised more than £16,000 in honour of their friend who has MS. Edward Quigley tells us about his experience of being part of the PeloTonyAdaMS London to Paris team

15 minutes with MS Trust supporter Tim Sorrell
09 August 2016

15 minutes with MS Trust supporter Tim Sorrell

Tim Sorrell is a Planning Manager living in Nottingham. Since being diagnosed with MS he has twice run the London Marathon, with his wife Caitlin, in support of the MS Trust. He tells us why he runs and why he believes it’s important to support our work

MS in the media logo (pile of newspapers)
05 August 2016

MS in the media

  • Gut microbes and MS
  • Financial, personal and work related impact of MS
  • Relapses following second or subsequent pregnancies
  • TENS for MS spasticity
  • Poetry and MS
  • Assistance dog
  • Coping with life's changes
Daisy at the top of the tower
04 August 2016

Why I abseiled 400ft for MS Trust

Daisy Doncaster, MS Forward View project coordinator, tells us about her abseil down the tallest permanent abseil tower in the world.

 Stephanie Millward experienced her first symptoms at the age of 16 and was diagnosed with MS when she was 18.
03 August 2016

Childhood MS: Stephanie’s story

Stephanie Millward talks about her diagnosis with multiple sclerosis (MS) aged 18, dealing with her symptoms then her career as a Paralympic athlete

Amelia* was diagnosed with MS two years ago when she was 14. *Names have been changed
01 August 2016

Childhood MS: Amelia’s story

Amelia talks about her diagnosis with multiple sclerosis (MS) two years ago at the age of 14 and how she has become more positive and optimistic for the future

MS in the media logo (pile of newspapers)
29 July 2016

MS in the media

  • Disease modifying drugs may help people with "benign" MS
  • Stephanie Millward talks about the impact of MS
  • Stem cells
  • Anecdotal success and research evidence
  • Financial management with MS
  • Communicating prognosis
  • Disabled dressage rider asked to pay extra for using additional equipment
  • Study highlights progressive decline for people with MS

 

donut and mug of coffee
25 July 2016

Swallowing hard: dysphagia and MS

Jane from the Information Team blogs about swallowing difficulties in MS and tips and tricks that may help you

MS in the media logo (pile of newspapers)
22 July 2016

MS in the media

  • Developing drugs for progressive MS
  • Magician on living with MS
  • Vitamin D recommendation for general population
elephant looking forgetful
19 July 2016

Thanks for the memory: forgetting things and MS

Jane from the Information Team blogs about memory difficulties in MS, how they can affect many aspects of everyday life and tips and tricks that may help

15 July 2016

MS in the media

  • Disease modifying drugs and cognition
  • New measure for person-centred care
Trudi in front of the aeroplane
14 July 2016

Pushing my boundaries: skydiving for the MS Trust

Trudi tells us about her sponsored skydive from 10,000 feet and why she wanted to raise money for the MS Trust.

Woman wearing hat and scarf
13 July 2016

Chilled out: cold sensitivity and MS

Jane from the Information Team blogs about why some people with MS find that their symptoms get worse when they are cold and what can help

12 July 2016

Butlins for people with MS?

Being diagnosed with MS is the beginning of a long, unpredicatable journey. In Denmark, people are offered a two-week residential course on adjusting to their new life with MS. Tim Wardman went on one and reports back on what he learned.

MS in the media logo
08 July 2016

MS in the media

  • Overweight people more likely to develop MS
  • Gut bacteria differ in people with MS
  • Integrated care transforms lives of disabled people
  • Lifestyle based approach to MS
  • Zinbryta (daclizumab) licensed
  • Effect of MS on carers
  • Cause of depression as MS symptom
Lois on the day of her skydive
01 July 2016

My skydive was just the beginning

Lois has developed a taste for fundraising after raising £600 through a sponsored skydive to support her mum who has MS.

Sam, Penny and Grace
01 July 2016

Tap dancing to raise awareness of MS

Penny O'Connor tells us how she raised funds and awareness through her tap dancing classes.

Exhausted man trying to sleep in bed
30 June 2016

Hot and bothered: how heat makes MS symptoms worse

Jane from the Information Team blogs about why many people with MS find that their symptoms get worse when they are hot. 

24 June 2016

MS in the media

  • Commissioning community services
  • Progressive MS Alliance meeting
  • New genes associated with MS
  • Caroline Wyatt on her diagnosis
  • Rituximab
20 June 2016

Family prepares to cycle to Paris for MS Trust

Jack Graves tells us how his mum's MS diagnosis has inspired his family and their friends to get on their bikes.

17 June 2016

MS in the media

  • Awareness of MS
  • Sleep and cognition
  • People affected by MS - Caroline Wyatt
  • People affected by MS - Stephanie Millward
  • Cerebral microbleeds
  • Vitamin D
Stem cells
10 June 2016

MS stem cell therapy in the NHS: time for a roadmap

You may have seen the news today about the results of a trial in Canada on stem cell therapy. Amy Bowen from the MS Trust explains how it gets to the nub of the issues surrounding stem cell therapy for MS and why it's time for a roadmap for making the treatment safe and widely available on the NHS

Friends having a My Garden Party
10 June 2016

A whole new world for me

Sarah was still getting to grips with her own MS diagnosis when she decided to throw a garden party to raise awareness and funds.  

Pile of newspapers MS in the media
10 June 2016

MS in the media

  • Older people with MS
  • Opicinumab (anti-lingo-1) trail disappointing
  • Stem cell trial shows long-term benefits
Pia Reynolds
08 June 2016

Representing people with MS in the UK

Pia Reynolds, advisory group lay member for the MS Trust’s project MS Forward View, explains what it’s like to represent people with MS in this innovative project.

Consortium of Multiple Sclerosis Centers MS in the media
07 June 2016

MS in the media - CMSC 2016

Reports of studies presented at the CMSC (Consortium of Multiple Sclerosis Centers) meeting that took place from 1-4 June 2016.  Reports include research into  drugs for MS, better understanding of symptoms and lifestyle factors.

newspapers MS in the media
03 June 2016

MS in the media

  • Fasting-mimicking diet studied
  • More proactive care for sexual dysfunction encouraged
  • Golfer with MS
  • Gene linked to rare form of MS
Overall health matters Amy Bowen
03 June 2016

Overall health matters in MS

Amy Bowen, the MS Trust's Director of Service Development, reports from the CMSC conference on two talks about the importance of lifestyle issues and MS

newspapers MS in the media
27 May 2016

MS in the media

  • Vitamin D in Orkney
  • The effect of MS on employment
  • Invisible symptoms of MS
  • Young carers blog
  • Fasting-mimicking diet
  • A bicycle with MS
Rock and Lodestone
26 May 2016

Rock and Lodestone: my poetry book

Glenda Kerney Brown has released a book of poems to raise funds for the MS Trust. Here she tells us about living with MS and her new book.

Jenny Shackleton getting married
24 May 2016

Why Jenny lost pounds to raise pounds

Jenny Shackleton may be afraid of heights, but that hasn't stopped her from signing up for a sponsored skydive. But in order to do the jump, she first had to take on another challenge.

Newspapers MS in the media
20 May 2016

MS in the media

  • Neurological Alliance unhappy with government response to report
  • Relapses and disease modifying drugs
  • Progressive MS treatments review
  • Vitamin D levels in Orkney
  • Gut bacteria in children with MS
  • Viruses and onset of MS
  • Pregabalin and birth defects
  • Inequalities in multiple sclerosis care
  • Potential treatment for PML
newspapers MS in the media
13 May 2016

MS in the media

  • Long-term use of disease modifying drugs
  • Symptoms during relapses and progression
  • The potential of ocrelizumab
  • AAN meeting round up
  • Diet and inflammation in the brain
  • Cancer risk and MS
  • Mitoxantrone and cancer risk
  • Carers and the Care Act
  • Palliative care services patchy
Art works Helen French
10 May 2016

A refreshing way to buy art

Helen French tells us why she loves to support the MS Trust's Secret Art Show.

Debbie and Joe
09 May 2016

The really Great North Run!

Debbie Worthington tells us about her experience of taking part in the Great North Run for the first time in 2015.

Taking control
06 May 2016

Taking control

Life can be unpredictable, and having a long-term health condition brings with it even more uncertainties. As an ex-palliative nurse, and as someone living with a neurological condition herself, Diane Shenton knows this more than most. Here she explains how she found reassurance in taking control and proactively planning for her future

06 May 2016

How can palliative care help?

People with MS aren’t always aware that palliative care might be available for them. Research by Marie Curie last year concluded that people with MS are missing out on care that can make a real difference to their quality of life because there is limited understanding from both health professionals and the public of what palliative care can offer, who can benefit and when the time is right time to access it.

Megan Cass - Small idea that grew
06 May 2016

A small idea that grew

For the past six years, MS Trust supporters have been opening their gardens and holding outdoor events to raise funds as part of our summer My Garden Party campaign. 12-year-old Megan Cass tells us about the garden party she held to support families like hers that are affected by MS, and why she’ll be doing the same again this summer.

15 minutes with Amy Mackelden
06 May 2016

15 minutes with MS Trust volunteer Amy Mackelden

Amy Mackelden writes plays, poetry and pop criticism. Her most recent book is Adele: the other side, published by Eyewear Press. She was diagnosed with MS in 2014 and this year volunteered to join the advisory group of our MS Forward View project. Here she explains why she got involved and what inspires her

newspapers MS in the media
06 May 2016

MS in the media

  • Zinbryta (daclizumab) nears approval in Europe
  • Ocrelizumab and progressive MS
  • Too much sitting is bad for you
  • Yoga or aquatic exercise help MS symptoms
  • CCSVI symptoms not unique to MS
  • Gilenya (fingolimod) rebound risk
  • Suicide rates higher in MS
Gilly and Steph
05 May 2016

How can occupational therapists help people with MS?

Occupational therapists (OTs) can help people overcome everyday difficulties and stay independent for longer. However MS specialist OTs are still rare in the UK. We spoke to Gilly Burdon, an MS specialist OT working for Wye Valley NHS Trust in Hereford, about her work, the difference she makes, and how she’s supported by the MS Trust

Why I'm cycling London to Paris Gilly
05 May 2016

Why I'm cycling London to Paris for the MS Trust

Gilly Burdon, an MS specialist occupational therapist, tells us why she is cycling London to Paris for the MS Trust.

Steph- Occupational therapy
05 May 2016

How can occupational therapists help people with MS? - Steph's story

Steph is a music and performing arts manager at an FE college. She was diagnosed with MS in 2008. Here she talks about how Gilly Burdon, an MS specialist occupational therapist, helped her.

Katie Occupation therapy
05 May 2016

How can occupational therapists help people with MS? - Katie's story

Katie was diagnosed with MS in 2008. Here she tells us how Gilly Burdon, an MS specialist occupational therapist helped her.

Mags Lewis
05 May 2016

Making our voices heard

Mags Lewis was diagnosed with MS in 1994. After a career as a manager in the NHS, she’s now the Green Party disability spokesperson, and hopes to stand as the party’s candidate for Leicester at the next general election. She tells Open Door why she thinks it’s important for people with MS to get involved and make a difference.

newspapers MS in the media
29 April 2016

MS in the media

  • Engaging with MS services
  • Vitamin D review
  • Tysabri and progression study
  • Review of current research
  • Monitoring MS with mobile devices
  • MS affects moral cognition
Justin cycling
28 April 2016

Cycling from North Wales to Southern France

Having loved cycling since childhood, Justin Kendell was devastated when he found himself unable to ride due to symptoms of MS. Now he is back on his bike and planning a ride of over 1,300 miles to raise funds for the MS Trust.

Nurse and patient
27 April 2016

How can we make MS care fair for people with progressive MS?

MS Forward View is our project working with NHS experts, MS teams and people living with MS to shape fairer specialist services. Daisy Doncaster, the project co-ordinator, explains how we exactly we intend to make a difference, particularly for people with progressive MS

Hayley Budge Orkney
27 April 2016

Hayley's winning jewellery design

Hayley Budge from Orkney tells us about her winning Tulip necklace design, which has inspired a jewellery collection that is on sale now to raise funds for the MS Trust.

American Academy of Neurology (AAN)
22 April 2016

MS in the media - AAN 2016

Reports of studies presented at the American Academy of Neurology meeting that took place from 15-21 April 2016.  Reports include researchinto disease modifying drugs for relapsing MS, approaches to repair of nerves and risk factors for MS.

newspapers MS in the media
22 April 2016

MS in the media

  • AAN 2016
  • Sexual problems for men with MS
  • Genome study launched
Secret Art Show sale
15 April 2016

A buyer's guide to the Secret Art Show

A handy guide to buying the art you want in the 2016 Secret Art Show. Get in quick when sales open at 9am on Monday!

newspapers MS in the media
15 April 2016

MS in the media

  • Medical cannabis arguments
  • MS Therapy Centre visit
  • The interaction of pain, depression and fatigue
  • MS. A song cycle
  • Small trial hints at possibility of nerve repair
  • Identifying factors that increase MS risk
  • Footballer with MS
  • Punching sharks on the nose
newspapers ms in the media
08 April 2016

MS in the media

  • DMDs and brain atrophy
  • Do Paralympians encourage or deter exercise?
  • Beta interferon in children
  • Myelitis and MS
  • Most PIP appeals are successful
  • Switching to rituximab or Gilenya from Tysabri
  • The effect of other health conditions
Old school sign
01 April 2016

Childhood MS – could you help us?

We’d like to hear from people with all different experiences of childhood MS.

Newspapers MS in the media
01 April 2016

MS in the media

  • Rosacea and MS risk
  • Finding new life in wheelchair tennis
  • Holidaymakers needed
  • MS in families studied
  • Finding positives
newspapers MS in the media
24 March 2016

MS in the media

  • World Congress on Controversies in Neurology (CONy)
  • Benefit changes withdrawn
  • Gadolinium safety review
  • Ibudilast fast track status
newspapers MS in the media
18 March 2016

MS in the media

  • The Budget and benefit changes
  • Beta interferon and pregnancy
  • Review of ACTRIMS neurology conference
  • MS in East London
newspapers MS in the media
11 March 2016

MS in the media

  • Vitamin D in pregnancy
  • More than one autoimmune condition and progression risk
  • Small study of antidiabetic drugs
  • Brain training may improve thinking
  • Athlete with MS
  • MS and other health conditions

 

What is the role of charities in supporting public services
07 March 2016

What role should charities play in supporting public services?

Should the task of improving MS services be solely the responsibility of the NHS? Amy Bowen, Director of Service Development at the MS Trust, explains why we believe it’s vital for the MS Trust to work in co-operation with MS teams to ensure people living with MS receive the best possible care

newspapers MS in the media
04 March 2016

MS in the media

  • Recommendations for Tysabri and PML
  • Neurological services in Scotland
  • Pregnancy and risk of progression
  • Virtual reality and balance
  • Rituximab trial unsuccessful for SPMS
  • Coffee and risk of MS
01 March 2016

Rising to the challenge: how the MS Trust plans to push neurology services up the agenda

The publication of the Public Accounts Committee’s report on services for people with neurological conditions throws down the gauntlet to the Department of Health and NHS England. 

Amy Mackelden- Sharing views of MS services
29 February 2016

Why you should join me in sharing your views on MS services

Sometimes, as a person with MS, it can feel as though your voice isn’t being heard. This is why I was so keen to become a lay member of the MS Trust’s MS Forward View project advisory group. Any opportunity to share my opinions about and experiences of MS services, I grab, because so much of the time my opinion doesn’t seem to matter.

newspapers MS in the media
26 February 2016

MS in the media

  • Rowing from home
  • Delays in MS services
  • Lessons for fingolimod for progressive MS trial
  • Neurological services criticised
  • Medicinal cannabis campaign
newspapers MS in the media
19 February 2016

MS in the media

  • EMA guidance on PML
  • Ocrelizumab approval process in the US
  • Ozanimod trial results
  • Disease modifying drugs and progression
  • Investigating the effect of other conditions on MS
newspapers MS in the media
12 February 2016

MS in the media

  • Vitamin D and onset of MS
  • Measuring disease activity
  • Gender differences in MS
  • Trial to predict how MS will develop
  • Woman with MS on bed blocking
  • Sense of taste
  • Smoking and nicotine
  • Christian Jessen's MS connection
  • Campaign launched to legalise medicinal cannabis
Atlantic Lions
12 February 2016

Thanks and congratulations to the Atlantic Lions and The Pride

The MS Trust's Director of Fundraising and Marketing, Jo Sopala, writes about the Atlantic Lions' incredible journey taking on the ocean and taking on MS.

David and Jackie Middleton
12 February 2016

15 minutes with MS Trust supporters Jackie & David Middleton

MS Trust supporter Jackie Middleton and her son David who is rowing the Atlantic for the MS Trust tell us what inspired them to raise funds and why they think it's so important to support our work.

Julian 100k cycle
11 February 2016

Facing tough challenges: Julian's story

Julian was only 20 when he first experienced symptoms that turned out to be MS. Five years on, he shares his story.

Plane in field
11 February 2016

A different perspective

At the age of 62 and living with MS, Judi Hall decided she wanted to seize every opportunity for adventure. This prompted her to sign up for a sponsored skydive as part of our Jump in June campaign last summer. In this article she tells us all about her jump and the inspiration behind it.

Dr Jonathan O’Riordan
11 February 2016

Dr Jonathan O’Riordan, consultant neurologist and Director of the Tayside and North Fife regional MS service

In 1999 NHS Tayside decided to appoint a neurologist with a specialist interest in MS. And at the same time they appointed a MS specialist nurse. I was appointed along with Shona Flucker, and that was when the MS unit as such developed.

Let's make MS care fair logo and team
09 February 2016

Let’s make MS care fair!

MS care is changing. Last year saw a new consensus on treatment for people with relapsing remitting MS. This recommends that people with relapsing remitting MS receive treatment with a disease modifying drug (DMD) as close as possible to diagnosis. It also recommends that treatment should be closely monitored, and, if there are still signs of disease activity, a switch to a different, more effective treatment should be considered.

The Tayside MS team, based at Ninewells Hospital in Dundee
09 February 2016

Finding innovative ways of helping everyone with MS

The Tayside MS team, based at Ninewells Hospital in Dundee, were the inaugural winners of our QuDos award for multidisciplinary team of the year. The MS nurses have also worked closely with the MS Trust over the past two years as part of our GEMSS project, collecting data about their service. We think their service offers a great model for effective and equitable MS care, so we went up to Dundee to find out more about the team and how they make a difference for people with MS

MS specialist nurses Christine Whatley and Shona Flucker
09 February 2016

MS specialist nurses Christine Whatley and Shona Flucker

We went up to Ninewells Hospital in Dundee to find out more about MS specialist nurses Christine Whatley and Shona Flucker and how they make a difference for people with MS.

MS specialist physiotherapist Carol Greig with Julie
09 February 2016

MS specialist physiotherapist Carol Greig

When you’re working with MS it’s hard. You can’t just think about someone’s mobility or balance, you have to be a lot more holistic. I think working in the multidisciplinary team, you learn a lot more about MS. You can link up with the occupational therapy for fatigue management, you can link up with newly diagnosed courses.

Aqua therapy
09 February 2016

How can aqua therapy help people with MS?

The winner of the evidence in practice award at our QuDos awards last November was the MS Aqua Research Team, comprising academics from the University of Brighton and physiotherapists at the Burrswood Hospital in Kent. We spoke to the team about their work and what it means for people with MS

Gary Middleton
08 February 2016

Day 51: for Gary

With under 100 miles to go until the finish line of the Talisker Whisky Atlantic Challenge, David blogs about his uncle Gary who was the inspiration behind the challenge. 

Atlantic Lions writing on boat- It's psychological warfare
07 February 2016

Day 49: final week frustrations

After another storm hits the Atlantic Lions, their estimated arrival date in Antigua is pushed back again.

newspapers MS in the media
05 February 2016

MS in the media

  • Fingolimod for PPMS trial unsuccessful
  • Arthritis treatment and MS risk
  • The difficulty of claiming benefits
  • Step training study
  • Company pulls out of female hormone treatment
  • Work and MS
  • Tysabri v fingolimod
  • Indicators of risk of primary progressive MS
Atlantic Lions on the ocean
04 February 2016

Day 47: however...

Comparing the unpredicatbility of the ocean with the unpredicatability of MS, the Atlantic Lions reflect on the last 47 days rowing across the Atlantic Ocean. 

Relapse word cloud
03 February 2016

Can you help us improve our webpages on managing relapses?

We've been revising the information about relapses on our website to make it more comprehensive.   This is an important topic and we'd really like to have your input.

Swimming in the Atlantic Ocean
01 February 2016

Day 43: into the flying fifties and the final stretch

Atlantic Lion Joe blogs about the final stretch of the Talisker Whiskey Atlantic Challenge as they move ever closer to Antigua. After 43 days of continuous ocean rowing the boys have to come up with new ways to keep themselves entertained. 

newspapers MS in the media
29 January 2016

MS in the media

  • Phenytoin trial results
  • Risk of relapse when switching treatment
  • Stem cell therapy review
  • Tysabri and risk of PML
  • Young carer
29 January 2016

Could you help design a smartphone app to help people with MS and their carers?

A group of students from the Design Academy are looking at ways to support carers by designing an smartphone app.

Ginty trekking in the Scottish Highlands
26 January 2016

Mind over matter: trekking the Scottish Highlands

Ginty Telfer-Wilkes has always loved trekking in the Highlands of Scotland and she's determined not to stop now that she has MS. She also has an offer for anyone who wishes to do the same.

Sunset over the Atlantic Ocean
26 January 2016

Day 37: less than 1000 miles to go

The Atlantic Lions have now been rowing continuously for over 37 days. Five weeks of ocean rowing has taken its toll on the boys and in this blog Dr Matt gives us a medical update. 

newspapers MS in the media
22 January 2016

MS in the media

  • Stem cells therapy on Panorama
  • Respite services in Edinburgh
  • The potential of stem cells
  • Oestrogen supplement trial results
  • Consultation on further changes to benefits
magnifying glass
20 January 2016

Could stem cell therapy work for progressive MS?

In short, yes it could. The recent Panorama programme focussed on people with relapsing MS, but many people are asking whether people with progressive MS could be helped too.

In this blog, Jane from the Information Team looks at some of the research so far, what’s possible now and where we might expect to see further progress in the future.

Atlantic Lions with fishing catch
19 January 2016

Day 30: fish are friends not food...

The Atlantic Lions celebrate passing the halfway point on their journey across the Atlantic Ocean by blogging about their latest fishing ventures.

newspapers MS in the media
15 January 2016

MS in the media

  • Grand designer with MS
  • Fingolimod in real life study reflects trial results
Drink more for MS
14 January 2016

Drink more for MS!

In this blog, Jane from the Information Team at the MS Trust looks at the benefits of drinking more if you have MS.

Diagram showing how the para-anchor works on the Atlantic Lions' boat
11 January 2016

Day 23: 'If it was easy, it would just be the way'

With the storm about to hit, Atlantic Lion Joe blogs about how they can avoid being pushed backward towards the Canaries. 

10 January 2016

Day 21: a day in the life of an ocean rower

Atlantic Lion Matt blogs about a typical day on board their rowing boat Tiny Dancer. 

newspapers MS in the media
08 January 2016

MS in the media

  • Laquinimod study concerns
  • Vitamin D and inflammation
Weather chart of the Atlantic crossing
07 January 2016

Day 18: storms on the way

Some difficult times lay ahead for our Atlantic Lions who are rowing towards a significant storm.

The boys have been warned and options have been discussed, but it is likely to mean para-anchor and an unpleasant few days.

Glass of water over flowing bladder or bowel problems, you're not alone
07 January 2016

Bladder or bowel problems? You're not alone

People are too embarrassed to talk about bladder or bowel problems with health professionals and don’t know what help is available, this is the finding of new guidance from NHS England that aims to improve continence services. 

Atlantic Lions passing David Mountains
03 January 2016

Day 14: entering the second week of continuous rowing

The Atlantic Lions have now spent a total of two weeks rowing continuously across the Atlantic Ocean. As they move further west they are treated to more frequent wildlife visitors which helps to keep the boys motivated.

Portuguese flag with Atlantic Lions logo
31 December 2015

Day 11: Happy New Year from the Atlantic Lions

After 11 days at sea the Atlantic Lions are settling into the routine of life on board the boat. With some suprise visitors on day 10, spirits are high. 

newspapers MS in the media
31 December 2015

MS in the media

  • NHS choir
  • Fampridine and walking speed
  • Work and MS symptoms
  • Talking to children about MS
  • Vitamin D study
Multiple Sclerosis Trust logo
30 December 2015

The MS Trust in 2015

2015 has been another busy year for the MS Trust.  Highlights include:

  • MS Decisions launched
  • Information about secondary progressive MS
  • Evidence for MS specialist services published
  • Launch of the new look MS Trust website
  • NICE quality standard for MS
  • Supporting health professionals
  • Your support for us
First day rowing for the Atlantic Lions
29 December 2015

Day 9: power shortage in the middle of the Atlantic

Things are looking up for the Atlantic Lions who have now spent a total of 9 days at sea. But despite the weather getting better, the Lions are now facing problems with their power supplies.

Christmas Day for the Atlantic Lions
25 December 2015

Day 6: dreaming of a blue Christmas

Many miles away from their families, girlfriends and roast dinners, things were looking tough for our brave Lions on Christmas day. 

newspapers MS in the media
24 December 2015

MS in the media

  • Success rate in MS drug trials
  • Review of the year
  • Biggest 'game changer' of 2015
  • Care home ratings
  • Stem cell therapy
Dolphin in Atlantic Ocean
22 December 2015

Day 3: first blog from the Atlantic

72 hours and 160 nautical miles into the Talisker Whiskey Atlantic Challenge and the Atlantic Lions share with us their first blog from the Atlantic Ocean. 

Atlantic Lions at the start of the Talisker Whiskey Atlantic Challenge
20 December 2015

And they're off!

Watch this fantastic footage from the Talisker Whiskey Atlantic Challenge start line featuring the Atlantic Lions who are rowing for the MS Trust. 

newspapers MS in the media
18 December 2015

MS in the media

  • Brain cell death and nanoparticles
  • Making the most of your life with MS in 2016 and beyond
  • Sense of smell
  • Woman dies after ruling to stop feeding
newspapers MS in the media
11 December 2015

MS in the media

  • Vitamin D and myelin production
  • Rehabilitation research reviewed
  • John Kurtzke
  • National MS Society review of research 2015
Wheelchair on beach
08 December 2015

How I'm helping wheelchair users travel the world

Susie Twydell explains why she has set up Wheelchair World a new site to help wheelchair users plan ahead and get the most from their adventures

Syd's Christmas Card designs
07 December 2015

Designs on a marathon

Syd Hausmann tells us why she was inspired to take up running to support the MS Trust and how she's using her design skills to raise funds this Christmas.

newspapers MS in the media
04 December 2015

MS in the media

  • Songs about MS
  • Oestrogen supplement trial results
  • Biotin and optic neuritis
  • Coping with Christmas
  • Disability and society
Is stem cell therapy right for my MS
02 December 2015

Is stem cell therapy right for my MS?

There is an increasing interest in stem cell therapy for multiple sclerosis. Perhaps you are debating whether it could be a treatment option for you either now or in the future?

In this blog, Jane from the Information Team at the MS Trust, looks at some of the issues surrounding this largely experimental treatment.

newspapers MS in the media
26 November 2015

MS in the media

  • Social care crisis
  • Artists with MS
  • Spending Review
  • Reporting medically unfit drivers
newspapers MS in the media
20 November 2015

MS in the media

  • Tecfidera and PML
  • Chocolate and fatigue
  • The impact of benefit changes
  • End of life judgement
19 November 2015

Could you help us make up a big team of MS Trust Santas?

MS Trust Web Editor Helena writes about why she is taking part in the 2015 Santa run for the MS Trust, and why you should join in too!

 

13 November 2015

MS in the media

  • Drug repurposing bill runs out of time
  • Diet and MS - Association of UK Dietitians policy statement
  • Vitamin D and atrophy
  • Cancer drug fund in Wales
13 November 2015

How the MS Trust's conference will help me help people with MS

First-time attendee, physio Harriet Simpson tells us us what she got out of this year's MS Trust conference, and how she thinks it will make a difference to her work

06 November 2015

MS Decisions: Getting the balance right

Neurologist Dr Paul Molyneux and MS specialist nurse Ruth Stross both sat on the editorial panel for MS Decisions. Here they explain why they got involved and how they believe it will help them help people with MS.

06 November 2015

MS in the media

  • Risk of psychiatric disorders
  • Off Patent Drugs bill
05 November 2015

15 minutes with MS Trust Director of Information and Engagement Linden Muirhead

Linden Muirhead is the MS Trust’s Director of Information and Engagement. Over the past year she’s been managing the redevelopment of our website, which relaunched in September. Here she explains exactly how the new site will work even better and allow us to make more of a difference for people living with MS.

05 November 2015

Vive La France!

The MS Trust has a fantastic opportunity to raise funds next year as we have been named the official charity partner for the special Tour de France edition London to Paris cycle ride! We are looking for 50 cyclists to join our team and raise sponsorship to help us support people with MS.

05 November 2015

Trigeminal neuralgia

Trigeminal neuralgia is a type of severe nerve pain which can be a symptom of MS. Professor Joanna Zakrzewska, a specialist in facial pain at the Eastman Dental Hospital in London, explains what causes it and how it can be treated.

05 November 2015

How can speech and language therapists help?

Over 40 per cent of people living with MS report experiencing problems with speech. Melissa Loucas, a speech and language therapist based in Reading, explains what help is available.

05 November 2015

MS Decisions: Clear, impartial and easy to use

Anna is 29 and was diagnosed with relapsing remitting MS in 2012. She has been taking Avonex, but is now reconsidering her options. She volunteered to test drive the new MS Decisions and was very impressed.

05 November 2015

MS Decisions: Getting involved

Karen McTaggart and David Harrison were both diagnosed with MS in 2014, and volunteered to help us review MS Decisions. Here they tell us why they got involved and how they helped.

04 November 2015

Introducing MS Decisions

We’ve worked closely with people with MS, MS nurses and neurologists to develop the new MS Decisions. The site now features a guide to making your decision, full details about all of the drugs, a list of common questions, as well the decision aid.

30 October 2015

MS in the media

24-30 October 2015

  • EMA guidance on Tecfidera
  • People affected by MS - Dave Myers
  • Photographs of MS
  • HIV drug for MS
  • Accurately measuring fitness
  • Drug repurposing bill
Health professionals on phone- Nice quality
28 October 2015

Will the NICE quality standard on multiple sclerosis be fit for purpose?

Amanda Croft

NICE is developing the new quality standard for MS which identifies priority areas for improving NHS MS services. Amanda Croft, the MS Trust Policy Officer, explains why we have some concerns and what we're doing about it

Pile of newspapers
23 October 2015

MS in the media

  • Tysabri trial for SPMS is negative
  • ECTRIMS round up
  • The cost of MS
  • Athlete with MS
Amy doing the British 10K for the MS Trust
21 October 2015

My British 10K Run for Becki

My name is Amy and I have registered to take part in the 2016 British 10K Run in London because one of my closest friends, Becki, has MS. 

20 October 2015

MS in the media

  • Vitamin D, memory and cognition
19 October 2015

MS in the media

  • Mental visual imaging training
15 October 2015

MS in the media

  • ECTRIMS reports
  • Aubagio and brain tissue loss
  • Generic version of glatiramer acetate is effective
12 October 2015

MS in the media

  • Diagnosis, invisible symptoms and telling other people
11 October 2015

Choosing a disease modifying drug: Jo's story

Jo Fielder, who has rapidly evolving relapsing remitting MS, shares her personal experience around choosing a disease modifying drug in this series of videos.

11 October 2015

Administering disease modifying drugs

MS specialist nurse Debbie McMillan demonstrates how to administer some of the disease modifying drugs.

11 October 2015

Q&A with MS nurse Nicki Abel: Disease modifying drugs

MS specialist nurse Nicki Abel answers some of your questions about choosing a disease modifying drug.

09 October 2015

MS in the media

  • Ocrelizumab effective in all types of MS
  • Daclizumab study results
  • Gilenya (fingolimod) long-term benefits
  • Aubagio (teriflunomide) real world study
  • Sativex in clinical practice
  • Stopping smoking reduces brain atrophy
  • Suicide and self harm risks higher in MS
08 October 2015

MS in the media

  • Tecfidera (dimethyl fumarate) follow up
  • Lemtrada (alemtuzumab) five year follow up
  • Tysabri (natalizumab) longer dosing
  • Gilenya (fingolimod) shows no benefit in primary progressive MS
  • Vitamin D levels and race
  • Sun exposure and low weight delay MS onset
  • Stem cell communication
07 October 2015

MS in the media

  • Woman of the Year award for woman with MS
  • Aubagio and atrophy
  • New MS centre in Stoke
07 October 2015

A new focus on brain health

Amy Bowen, our Director of Service Development, reports from ECTRIMS 2015 on what is widely expected to be the most significant MS conference for many years

05 October 2015

MS in the media

  • Smoking and the risk of developing MS
02 October 2015

MS in the media

  • Cladribine risk reappraised
30 September 2015

Getting the early treatment debate into perspective

Today, the MS Society publishes a consensus report on early treatment for people with relapsing remitting MS. Amy Bowen, MS Trust Director of Service Development, explains what this means for people with MS and what we're doing about it.

30 September 2015

MS in the media

  • Early treatment urged for relapsing MS
  • Dalfampridine for vision
  • Living with MS
  • Athlete with MS
29 September 2015

Finding the disease modifying drug that's right for me

Rosanna Cook shares her experiences around choosing a disease modifying drug: "Don't rush into anything, take time to weigh up the pros and cons and don’t ever feel like you are alone, there are people who can and want to help."

29 September 2015

Welcome to the new MS Trust website

As we reveal a major redevelopment of our website, MS Trust's Director of Information and Engagement Linden Muirhead explains why we believe it will help us help even more people living with MS, and why we want your feedback.

28 September 2015

Choosing my disease modifying drug

Kate Milne, who was diagnosed with MS in 2012, blogs about choosing a disease modifying drug: "I think anybody else facing this decision needs to look at what is important for them."

28 September 2015

MS in the media

  • Ocrelizumab for progressive MS trail results
25 September 2015

MS in the media

  • Olympic hopeful with MS
  • Potential PML vaccine being developed
  • Measuring progression in trials
23 September 2015

MS in the media

  • NICE social care guidelines published
  • New progressive MS research grants
  • Disease modifying drugs review
  • What affects quality of life in MS?
14 September 2015

The Scottish MS Register: Is the number of people newly diagnosed with MS in Scotland lower than previously thought?

Last week the Scottish MS Register published its five-year report on incidence of MS in Scotland. Geraldine Mynors, Programme Manager of our GEMSS project, reports on some surprising findings.

14 September 2015

MS in the media

  • Effects of benefit changes on health
11 September 2015

MS in the media

  • Melatonin and seasonal fluctuations
  • Cladribine submitted for a licence
07 September 2015

MS Trust takes part in Remember a Charity Week 2015, encouraging people to leave a charitable gift in their will

This week the MS Trust is joining 140 other charities in support of this year’s Remember A Charity Week. Across the country charities will be promoting the importance of leaving a legacy so that their vital work can continue. Research shows that although over a third of the population say they’d happily leave a charitable gift in their Will once family and friends had been provided for, only 7% actually do.

Two of the Atlantic Lions sitting on the boat at sunset
18 August 2015

Atlantic Lions Maiden Voyage

This weekend had long been in our diaries as the first ‘proper outing’. We have been out as a crew together on the river, but never more than a couple of hours at a time and although Matt and Charlie had already spent a night on the boat, that was well within the protection of Christchurch harbour!

Josh with his parents covered in blue powder
17 August 2015

Josh's Colour Run for MS

6 year old Josh took part in The Colour Run along with his dad Jamie and his aunty Emma. As Emma tells us, his family were very proud.

12 August 2015

Could you help people with relapsing MS make the treatment choice that’s right for them?

This autumn the MS Trust is launching a new, fully updated version of MS Decisions.

MS Decisions is the independent, interactive resource that helps you learn about MS disease modifying drugs, weigh up your treatment options, get more from your discussions with your MS team and make the choice that works for you.

10 August 2015

I think the proactive approach is very reassuring

Dr Belinda Weller is a consultant neurologist in Edinburgh. She tells us how she first came across the idea of early, proactive treatment, and the difference it’s made to how she works with people with MS

Vicky Edwards
10 August 2015

Where there’s a will…

When Vicky Edwards was buying her first property it made her realise how important it was to make a will. As well as ensuring her loved ones were provided for in the event of her death, it was also an opportunity for Vicky to support her favourite charity

10 August 2015

Putting MS specialists at the heart of MS care

Geraldine Mynors reports on progress in our campaign to make sure everyone affected by MS can access the best possible specialist case

10 August 2015

Considering the risks

When Ema was diagnosed, injectable MS drugs seemed to be keeping symptoms under control. But a severe relapse made her consider more powerful treatments

10 August 2015

“If you have MS, you can drive change”

Professor Gavin Giovannoni is Chair of Neurology at Barts and The London School of Medicine and Dentistry and is widely credited with popularising the idea of early treatment and treating to target NEDA in MS

10 August 2015

A new era in MS care?

In the past, people diagnosed with MS were sometimes told to ‘wait and see’ how their MS developed before making decisions about whether to consider disease modifying drugs. But the new MS treatment guidelines published by the Association of British Neurologists in June recommend that people with MS should begin treatment as early as possible.

Weighted wrist band
10 August 2015

Dealing with ataxia and tremor

Ataxia is the medical term that describes a lack of muscle coordination anywhere in the body. Typically, it can lead to tremors in the arms, legs, head, trunk or eyes and can even affect speech and swallowing. Currently there are no drugs that will get rid of the shaking or tremor that is caused by ataxia.

10 August 2015

A spring in your step

Foot drop, or dropped foot, is a symptom which affects many people with MS. It’s caused by weakness in the ankle or disruption in the nerve pathway between the legs and the brain, which can cause trips and falls. However, it can be treated by using a functional electrical stimulation device, which discharges a small electrical pulse to your nerve to help your foot lift correctly

10 August 2015

“Doing nothing carries the biggest risk, in my view”

Eleanor was recently diagnosed with MS and, after conducting personal research and consulting with her health professionals, opted for Lemtrada as her first treatment. She explains how she came to her decision

10 August 2015

Why we’re launching a new project to ensure more people can access the best possible MS care

MS Forward View aims to define the development and improvement of MS specialist care

Chris Orfeur cycling
01 August 2015

Race Across the West: my American cycle race for MS

Chris Orfeur took on a gruelling 860 mile cycle race from California to Colorado and raised over £6,300 for the MS Trust.

30 July 2015

Making Sense of MS helped 14-year-old Amy deal with diagnosis: we need your help to reach even more people

If you’re a subscriber you’ll have seen that the new issue of our free newsletter Open Door, out this week, leads on our new resource Making Sense of MS.

29 July 2015

Life doesn’t stop with MS: Everest by motorbike

In September 2015 Tony King from Dorset, who was diagnosed with MS in 2010, will be taking part in a motorcycle tour over the Tibetan plateau. He hopes to achieve a lifelong dream by riding to Everest Base Camp. 

Jump in June
29 July 2015

Calling all MS health professionals: enter or nominate colleagues for the 2015 QuDos in MS awards!

There are just six weeks left to enter and make your nominations for the first ever QuDos in MS awards – the awards that highlight innovation and excellence in MS services.

29 July 2015

MS Awareness Week is 28 April–4 May. How will you get involved?

If you receive our newsletter Open Door you’ll know that this year is the twenty-first anniversary of the MS Trust. (If you don’t receive Open Door youcan  read back issues and sign up for free here!). Having looked back at the big achievement in MS care and support since we were founded in 1993, for this MS Awareness Week, which runs from 28 April–4 May we want to make sure the next 21 years see even more progress.

29 July 2015

Ten years with MS and running 500km

Debbie Worthington tells us how taking on a challenge to run 500km this year with her husband in aid of the MS Trust has helped her come to terms with her own MS diagnosis. 

29 July 2015

What is the MS hug?

The MS hug sounds quite nice – if you haven’t experienced it! Jane from the MS Trust information team explains what it is and how you can deal with it

29 July 2015

NHS England and continence – at last, the potential for some real improvements…

In a recent blog, Director for Patients with Long-term Conditions at NHS England, launched a new initiative to improve bladder and bowel care for the millions of people across the UK who experience bladder and bowel problems.

29 July 2015

5 minutes with Bernadette Porter

Bernadette Porter is MS Consultant Nurse at the National Hospital for Neurology and Neurosurgery. This summer she was awarded an honorary MBE for services to nursing in the Queen’s birthday honours. A couple of weeks ago we had a chat with Bernadette about her work and her honour and an edited version appears in the latest edition of our newsletter Open Door. Here we publish the full version of our conversation.

29 July 2015

Thank you to the Free Wheelers!

Congratulations to MS Trust fundraising superstar Kenny Smith! Over the last 12 years, through countless marathons, treks and bike rides, Kenny has raised over £30,000 for the MS Trust. Five years ago he dreamed up the annual MS Circuit Challenge at Goodwood, which this year is on course to raise over £15,000. And last weekend he and a crew of dedicated friends pedalled over 23 miles in a Robin Reliant and raised another £1000! Below Kenny tells about the day.

20 July 2015

London Marathon race report

Carolyn Kovash came all the way from the USA to take part in the London Marathon on behalf of the MS Trust. Below is her race day report.

20 July 2015

Running for my brother

In 2011 I watched my son, and then in 2012 my daughter, complete the Great North Run for the first time. I stupidly cried out "I am going to do this next year!"

Alice B with pom poms
17 July 2015

Sponsored swim for MS Awareness Week

Inspired by a client with MS, fitness instructor and comedian Alice B took part in a sponsored swim during MS Awareness Week

Photo of Kathleen with a cross-stitched card of the Isle of Wight
14 July 2015

The Kathleen Painter IOW Memorial Challenge

Long term MS Trust fundraiser Kenny Smith wanted to do something amazing in memory of his sister Kathleen. Here is his story.

Lorna Humpreys skydiving
13 July 2015

An impossible dream: Lorna's skydive

Lorna Humphreys had dreamed of doing a skydive but she never believed it would be possible due to her secondary progressive MS.

Group from Elmfield House
05 July 2015

Elmfield's Three Peaks Challenge

A group of 17 and 18 year old boys from Elmfield house in Harrow School scaled the three highest peaks in the UK and raised almost £6,500.

A My Garden Party
02 July 2015

Village garden party

Helen Amos and her husband opened their garden to raise funds for the MS Trust and invited neighbours from their Northamptonshire village

01 July 2015

Peru trek 2007 - Ruth Cooper

Ruth Cooper trekked in Peru with her partner Clem and 16 other MS Trust trekkers in September 2007. She kept a blog for her friends and family to read, which she's kindly allowed us to share below.

01 July 2015

Cycling the 3 Cities

Mel Plehov was the first person to take part in the 3 Cities Cycle Ride (from London to Brussels via Amsterdam) in support of the MS Trust. We asked her why she had chosen to support us in this way.

01 July 2015

Our seven year journey - living with MS and supporting MS Trust

Rick Halsall has raised almost £70,000 for the MS Trust since 2008 by taking part in various events across the globe. Here he tells us more about his experiences and about his motivation for fundraising.

01 July 2015

Veteran cyclist takes on third London to Paris challenge

Philip Stringer will be cycling the 300 miles from London to Paris in August/September 2011 for the third time at the age of 75! Philip has already raised over £5,000 for the MS Trust and says hopes to raise more this year for a cause that means so much to him and his family.

01 July 2015

Raising sponsorship - a personal approach

Mike Laver has completed six Monster Ski challenges and has raised in excess of £30,000 for The MS Trust. He shares his fundraising secrets here.

01 July 2015

Trekking the Great Wall of China

Mags Tyekiff and her daughter Polly Tyekiff (pictured right) took part in our China Trek from 5 to 14 September 2013, raising just over £8,000 to help us support people with MS. Mags, who has MS herself, shares her daily diary below.

01 July 2015

Garden City Bikers cycle from London to Brussels

Father and daughter Keith and Hannah Entwisle from Letchworth Garden City took part in the 3 Cities Cycle Ride in May 2013, in support of the Multiple Sclerosis Trust.

01 July 2015

"I have MS but I can do it!'"

Richard Gleadhill decided to take part in the 2008 London to Paris cycle ride after reading about it in our Open Door newsletter.

Hayley and friend on Iceland trek
01 July 2015

Hayley's Iceland Trek

23 year old Hayley Budge and her friend Sarah Jessen, both from Orkney, took part in our  Iceland Trek in July 2014 after Hayley was diagnosed with MS. Here she tells us all about trekking through Iceland's magical landscape.

01 July 2015

Kenny's Kilimanjaro Trek

My amazing journey to the summit of the highest free standing mountain in the world!

25 June 2015

SweetTree goes blue for MS Awareness Week

The team at SweetTree Home Care Services was Bold in Blue when they decided to help raise money and awareness for the MS Trust.

25 June 2015

Team Grimace cycle the South Downs Way

Marie Rennie contacted the MS Trust's fundraising team in March to let us know that her husband's mountain biking team, Team Grimace, had chosen to support the MS Trust with their annual ride for 2009.

25 June 2015

Teva takes on the Etape du Dales

A team of 24 cyclists from the pharmaceutical company Teva took part in the Etape du Dales and raised more than £3,500 for the MS Trust.

25 June 2015

Virtual PA Services take on the Gladi8tor

Five colleagues from Virtual PA Services in Colchester took on the Gladi8tor challenge, an 8 mile obstacle race through Thetford Forest, and raised more than £3,000 to help people with MS.

25 June 2015

£1,000 raised in Burpham

Arundel rock band The Alternatives and Burpham Village Committee have donated £1,000 to the Multiple Sclerosis Trust. The cheque was collected by MS nurses Lisa Black from Worthing and Katrina Orchard from Chichester on behalf of the MS Trust.

25 June 2015

Kenny Smith's 3 Cities Diary

Kenny Smith is a longstanding supporter of the MS Trust, having amongst other things completed numerous London Marathons, trekked in the Sahara Desert and founded the MS Circuit Challenge at Goodwood. Here he tells us about his latest challenge, cycling from London to Brussels via Amsterdam in August 2014 along with his daughter Amy.

Stephanie Cowles and friend
25 June 2015

100 miles in 100 days

Stefanie Cowles tells us about the challenge she set herself to run 100 miles in 100 days in aid of the MS Trust.

25 June 2015

Alexander's London to Brighton Bike Ride

Alexander Damms took part in the London to Brighton Bike Ride in support of his sister who has MS. He tells us about it.

25 June 2015

Cycling across Australia for the MS Trust

William White has just completed an east to west cycle across Australia and has raised more than £2,100 for the MS Trust. He tells us more about the ride here

25 June 2015

Newcastle to Edinburgh cycle ride

Richard Scott from Grimsby cycled with a group of friends from Newcastle to Edinburgh in April 2014. Here he tells us about the challenge and their reasons behind it.

25 June 2015

Rainbow Reindeer Rally

Jennifer Cooper's Rainbow group raised £180 by holding a sponsored obstacle race as part of our Reindeer Rally campaign.

24 June 2015

I have MS therefore I am: on MS, philosophy and finding hope

Eve Darwood is a philosophy teacher at a secondary school in Lincolnshire. Last year she was diagnosed with MS. In this blog post she explains how her job, helping young people make sense of the world, has affected how she makes sense of MS (and vice versa).

Di Baker skydiving team
23 June 2015

The ultimate adrenaline encounter

Mother and daughter Di and Bessie Baker took part in a sponsored skydive to raise funds to help people with MS.

Illustration of woman dancing in the rain
23 June 2015

Dancing in the Rain: poetry and MS

Christine Moran found that writing poetry helped her come to terms with her MS diagnosis. She's recently had a book of poems published and is donating all the profits to the MS Trust.

17 June 2015

Medicinal cannabis, Sativex and treatments for spasticity in MS

Earlier this week our Director of Service Development, Amy Bowen, was asked by a national paper to comment on the issue of medicinal cannabis in MS, and in particular Sativex, a drug used to treat muscle spasticity. When published, Amy’s interview was edited down to a couple of lines in a larger article. Here she explores some of the difficult issues around cannabis use in MS in more depth

Judi Hall skydiving
16 June 2015

A different perspective: my skydive

At the age of 62 and living with MS, Judi Hall decided she wanted to seize every opportunity for adventure. Here she tells us all about her sponsored skydive.

04 June 2015

Why I absolutely love volunteering for the MS Trust!

Liz Thompson is one of the MS Trust's most passionate supporters (and a cake baker!). One of the ways she supports the work of the MS Trust is by volunteering every year at her local Cards For Good Causes shop. We asked her what motivates her to volunteer, and what she gets out of working in the shop.

27 May 2015

Why diagnosing MS isn’t always quick or straightforward

The media has highlighted the results of a survey published today by the MS Society about being diagnosed with multiple sclerosis. The survey raises issues about the challenges of being diagnosed with MS and the delays and mis-diagnoses that some people experience. It reflects many of the themes that came out in the MS Trust’s recent research into the experience of being diagnosed with MS.

27 May 2015

Why diagnosing MS isn't always quick or straightforward

The media has highlighted the results of a survey published today by the MS Society about being diagnosed with multiple sclerosis. The survey raises issues about the challenges of being diagnosed with MS and the delays and mis-diagnoses that some people experience. It reflects many of the themes that came out in the MS Trust’s recent research into the experience of being diagnosed with MS.

Line of girls in prom dresses
25 May 2015

Prom fashion fundraiser

Skye McCallum organised a Prom Fashion Show at her school and involved local businesses to raise funds for the MS Trust.

Group of ladies waiting to go on the plane
22 May 2015

My Big (out of the) Blue Jump

MS Trust Fundraising Officer Jess Wright tells us about the Big Blue Jump which took place during MS Awareness Week and her own impromptu parachute jump.

11 May 2015

Thank you for making our work possible

Did you know that we received £1.1 million last year from people like you raising funds and donating?  That's equivalent to what we spent in the same year providing information, campaigning on the things that matter to people living with MS and funding research to improve services, treatment and support.

11 May 2015

Improving support for people transitioning to SPMS

Finding that the pattern of your MS is changing from relapsing remitting to secondary progressive can be a distressing experience. Many people report that it feels like being diagnosed with MS all over again. How can we improve the support available to people going through transition? Two years ago we commissioned a team of researchers at Cardiff University to explore people’s experiences and look at ways support could be improved. Dr Freya Davies explains what they found out.

11 May 2015

“I think it’s a golden time for progressive MS research…”

Dr Jeremy Chataway is a consultant neurologist at the National Hospital for Neurology and Neurosurgery in London and has been involved in MS research for many years, most recently into the effects of simvastatin on progressive MS. He’s now leading on the MS-SMART trial, looking at the effects of three drugs which are already used for other conditions on people with secondary progressive MS. The trial is recruiting throughout 2015.

11 May 2015

The new focus on progressive MS

There have recently been encouraging developments in understanding and treating progressive MS. In this issue of Open Door we report on MS Trust research into the experience of transition between relapsing and secondary progressive MS and hear from Dr Jeremy Chataway on his research into the effects of three drugs on people with secondary progressive MS. To introduce the feature, Professor Alan Thompson, who is co-chair of team that coordinates the International Progressive MS Alliance’s research programme, explains how the focus has changed.

11 May 2015

15 minutes with MS Trust Research Manager Tracy Nicholson

Tracy Nicholson is the Research Manager at the MS Trust. She was diagnosed with MS in 2000. To celebrate their 50th birthdays, she and her friend Katrina decided to do a cycle, trek and kayak adventure in North Vietnam to raise funds for the MS Trust.

11 May 2015

Your best shot?

The issue of vaccinations and multiple sclerosis raises a number of questions for people with MS. Are the treatments safe? Do they work in MS? Are they affected by other treatments? Here we look at some of the more frequently asked questions.

11 May 2015

Be kind to your mind

Improving and maintaining your mental wellbeing - a consultant neuropsychologist with a special interest in MS, introduces practical steps you can take.

Thank you from all who work at the MS Trust
01 May 2015

A big MS Awareness thank you from the MS Trust​

​We’re now coming to the end of MS Awareness Week and we’d like to say a huge THANK YOU to everyone who’s been involved!

01 May 2015

Anti-LINGO-1, biotin and phenytoin results reported at AAN 2015

The 67th annual meeting of the American Academy of Neurology took place in Washington, April 18-25. Pre-meeting media announcements created high expectations for several presentations at the meeting, particularly treatments which may promote remyelination and neuroprotection and potentially slow the build-up of disability.

28 April 2015

Thank you for joining our campaign and raising awareness of MS!

We’re only one day into MS Awareness Week and already we can record it’s been a great success. Last week we set ourselves a target of reaching 1,000 sign ups to our Heart of MS Care campaign by the end of this week. As of this morning we can report that over 1,100 of you have joined us - so you’ve helped us beat our target, with four days to spare!

22 April 2015

What difference can MS specialist services make for people affected by MS?

MS Awareness Week begins next week on Monday 27 April. This year we are working to highlight the importance of MS services – the MS nurses, physiotherapists, occupational therapists and other health professionals with specialist expertise in MS. But what exactly does a good MS service look like, and what difference can it make for people affected by MS? To find out we visited the Rehabilitation Unit in Richmond, southwest London.

Lucy running
22 April 2015

Why it's important for health professionals to fundraise

MS Nurse Lucy ran a marathon for the MS Trust to raise funds for the work we do to support healthcare professionals. Here she tells us why she feels it's so important.

22 April 2015

MS nurses – the good, the busy and the gaps in services

At the MS Trust we believe that everyone with MS should have access to an MS nurse. MS specialist nurses provide clinical advice and support on most aspects of MS. They often act to co-ordinate services for people with MS, referring someone on to a doctor, therapist, or other appropriate services. Many people with MS consider them to be a lifeline but, sadly, we know this is not the case for everyone.

02 April 2015

The inspiration behind my boxing challenge

After meeting and falling in love with his partner Tarina who has MS nine years ago, John Post wanted to give something back for the support they have received over the years. He has signed up for a sponsored Zero to Hero White Collar Boxing challenge and has 10 weeks to get fit, learn to box and then perform in a full contact event in an arena. Here he tells us more about the inspiration behind his challenge.

20 March 2015

Monster Ski in Chamonix: a truly humbling experience

Snowboarder Ben Rogers and his friend Phil Draper signed up for our 2015 Monster Ski challenge because they believe that ‘life’s a game to be played, life’s a challenge to be met and life’s an opportunity to be captured’. Here Ben shares his experience of snowboarding 90,000 vertical feet in Chamonix to raise funds to support people living with MS.

11 March 2015

Recognising, accepting and adapting – how I manage my journey on Strictly

MS awareness campaigner, Trishna Bharadia, who is featuring in the new BBC series People’s Strictly for Comic Relief, tells us about what it is like taking part of a big production like this when you have MS.

06 March 2015

How do you raise awareness of multiple sclerosis, when MS varies so much from person to person?

Helena Jidborg Alexander who works in our MS Trust Web team and is a person with MS ponders the question of raising awareness of MS

04 March 2015

John Shuttleworth answers the MS Trust’s questions

We’re delighted that Sheffield-based singer-organist John Shuttleworth is hosting a special performance in aid of the MS Trust at the London Palladium on 28 June, with special guests Chas and Dave, Toyah, Martyn Ware, Gordon Giltrap, and others to be announced. John very kindly took some time out from his busy schedule to answer a few of our questions.

04 March 2015

Jiving and managing MS symptoms – on the People’s Strictly

Being asked to be a participant in the first ever People’s Strictly (Come Dancing) has got to be an amazing thing for any Strictly fan. This is what happened to six lucky people recently. One of them was Trishna Bharadia who was diagnosed with MS seven years ago.

23 February 2015

5 reasons why we need MS specialists at the heart of MS care

  • MS specialists understand how MS affects everyone differently
    On average, a GP in England is likely to see around three people with MS. On average an MS specialist nurse cares for over 300 people with MS, while physiotherapists and occupational therapists with special expertise have vast clinical experience and knowledge of MS. 
23 February 2015

15 minutes with MS campaigner Emma Rogan

Emma Rogan was diagnosed with MS in 2007 and since then has worked tirelessly to raise awareness of the issues that affect people with MS. In 2012 she entered the Vodafone World of Difference competition and worked with MS Ireland on advocacy, policy and information. She now works for the European MS Platform, and is leading their Believe and Achieve campaign, creating paid internship opportunities for young people with MS through partnerships with businesses across Europe

23 February 2015

Stem cells and MS: where are we now?

We’ve all heard stories about miracle cures for MS; these days they often involve stem cells. Neil Scolding is the Burden Professor and Director of the Bristol Institute of Clinical Neurosciences, and he has a special interest in MS and cell therapy.

23 February 2015

Why are we campaigning for specialist MS care?

There are over 100,000 people living with MS in the UK today. But MS Trust research shows that there is a shortage of MS specialist nurses and an urgent need to raise the profile of the physiotherapists and occupational therapists with special expertise in MS. Amy Bowen, Director of Service Development at the MS Trust, explains why we’re working to put MS specialists at the heart of MS care and why we need your support

20 February 2015

Introducing the Heart of MS Care campaign

At the MS Trust, we believe that people living with MS deserve the best possible care. That’s why we’re launching a new campaign to make sure everyone affected by MS can get access to MS specialists (that is, specialist nurses, as well as physiotherapists, occupational therapists and other health professionals with expertise in MS).

Food and fatigue
10 February 2015

Food and Fatigue

Cooking and fatigue doesn’t always go hand in hand, finding both time and energy to cook isn’t easy. Tim  writes a blog tackling the subject of cooking when your fatigue is bad.

31 December 2014

The many and varied experiences of living with MS

Amy Bowen, Director of Service Development at the MS Trust, considers whether one person can ever fully represent the variety of MS experiences

19 December 2014

Can you help us develop a website for people choosing a disease modifying drug?

Since it was launched in 2004, many people have used MS Decisions to help them choose between the self-injected drugs for relapsing remitting MS. We’re just starting on a project to redevelop the website to include the wider range of drugs now available.

03 December 2014

MS Trust supports Disability Benefits Consortium on Fitness to Work assessments

We know that the government’s changes to work-related benefits are hitting people with MS hard. As you may know, as a small charity the MS Trust restricts the government policy work we do specifically to health issues. We believe that everyone with MS is entitled to a full life, even if we don’t have the capacity to work in all areas. 

28 November 2014

"It's OK if it's a shock to you" - people share their experiences of diagnosis with MS

Whether it was a shock or largely expected, being diagnosed with MS can leave you in a bit of a whirl. Some new videos explore this.

26 November 2014

Hong Kong Moontrekker

In October 2014, Ed Bracken ran the Hong Kong Moontrekker with three friends and raised nearly £4,000 for the MS Trust.

26 November 2014

Potential change for the NHS in Wales

New care standards have been unveiled by the Welsh Government, to improve standards of care throughout the NHS. They’ve gained more urgency after care scandals were reported at the Princess of Wales hospital in Bridgend and Glan Clywd hospital in Rhyl. The new, improved standards of care are collated into a Health Standards Framework, which is based around 7 quality themes.

24 November 2014

Fundraiser Chris prepares to cycle from California to Colorado

Inspired by his mother who has MS, Chris Orfeur has decided to take part in a mammoth cycling challenge across the rugged American West to raise funds for the MS Trust. Here he tells us more about taking on the Race Across the West.

14 November 2014

The Reindeer Rally Run and more fundraising ideas

Are you a teacher, Brown Owl, Scout Leader or parent? We are looking for schools or groups to get involved this winter in the MS Trust’s first Reindeer Rally.

13 November 2014

“My mummy’s got wheels!”: managing MS while bringing up my four-year-old son

In the last issue of Open Door we featured an article about caring for a newborn baby when you have MS. This issue we hear from the BBC journalist Elizabeth Quigley, about how she finds managing her MS while bringing up her four-year-old son, Matthew.

13 November 2014

The Great North Run: “The most positive experience imaginable”

Andy Porter from Chester has run the Great North Run six times in aid of the MS Trust, raising more than £7,600 to help people with MS. Here he reflects back on his fond memories of the world’s greatest half marathon.

13 November 2014

15 minutes with… TV journalist Stephanie Scawen

Last year the Al Jazeera TV journalist Stephanie Scawen presented MS and Me, a film about coming to terms with her MS and investigating the significance of the latest MS research. This year she was keynote speaker at the MS Trust Annual Conference, our event for MS healthcare professionals

13 November 2014

“Engage real hope now…”: Jeffrey Gingold on the benefits of cognitive rehabilitation

Jeffrey Gingold on the benefits of cognitive rehabilitation.

11 November 2014

Staying smart: research into MS and memory

About half of all people with MS have problems at some time with aspects of memory, attention span or concentration. However, there is more and more evidence that cognitive rehabilitation – such as brain-training exercises – can make a real difference in helping you deal with these problems. Dawn Langdon, Professor of Neuropsychology at Royal Holloway, University of London, looks at promising research into MS and memory.

Atlantic Lions standing on bridge
10 November 2014

Why we’re rowing across the Atlantic for the MS Trust

Why do we want to cross an entire ocean in a small rowing boat? Three reasons really. First, the sense of adventure that only the high seas can bring. Second, the challenge in pushing the human body to the endurance limits. But third, and most important, to make a real difference to a charity so close to our hearts.

08 November 2014

What did we want to see in the NICE guideline?

Amy Bowen, the MS Trust’s Director of Service Development, explains what’s missing from the NICE Clinical Guideline.

28 October 2014

How people living with MS helped shape Making Sense of MS

Making Sense of MS was only possible thanks to people living with MS. You filled in surveys, took part in focus groups and interviews, responded to blogs, reviewed the work in progress and raised the funds that have made the whole thing possible. You even helped us come up with a name for the whole thing!

27 October 2014

Making Sense of MS: how we developed our new resource

Jane from the MS Trust information team explains how, with the help of people with MS and health professionals, we developed Making Sense of MS.

Holding MS Trust publications
27 October 2014

MS Trust publishes Making Sense of MS, a new resource for people newly diagnosed with MS

The new resource will help people get to ask the questions that matter most to them and take all the time they want to understand the answers

21 October 2014

“I didn’t receive any information about MS when I was diagnosed. Nothing.” – Leonie’s story

Yesterday we reported on our survey which found that only 12 per cent of people with MS felt they got all the information they needed when they were diagnosed. The impact of this information gap can be profound. Many people who took part in our survey told us that they felt they had to do their own research on the internet. What they found was often overwhelming, sometimes misleading and certainly not tailored for them.

20 October 2014

MS Trust survey highlights the impact of lack of information when people are diagnosed with MS

Earlier this year the MS Trust carried out new research into the effects of information on people’s experience of MS diagnosis. We surveyed 500 people living with MS and asked them whether they had been given information when they were diagnosed, and how this had affected their adjustment to living with MS.

24 September 2014

Working towards care of the whole person: investing in mental health

Alice Hamilton, the MS Trust’s Policy Officer, looks at a new report on public mental health services and considers what It might mean for people with MS.

12 September 2014

Three talking points from day two of the Boston MS conference

In her third post from MS Boston 2014, Amy Bowen reports on the highlights from day two.
11 September 2014

Three things I learned from day one of the Boston MS conference

In the second of her posts from MS Boston 2014, MS Trust Director of Service Development, Amy Bowen, reports on the hot topics from Day One.

26 August 2014

Ben’s Five in Five fundraiser

On 30 August, Ben Naughton (pictured right) will be taking on his first of five events to raise money for the MS Trust. Starting with the Rubicon Half Iron Man, Ben will complete five events in just five weeks! He is also taking on the Coniston Chill Swim (5.25 miles), Marathon Row at Cross Fit HG3, London to Paris cycle ride and finishing with the Berlin Marathon on 28 September. Here Ben tells us why he is taking on these incredible challenges.

12 August 2014

My summer at the MS Trust: learning from people with MS

As a medical student just finishing my second year, this was all I knew about MS before my summer holiday began.​

The long summer holidays of student life can be a blessing and a curse – the first few weeks may be heaven, but boredom is likely to ensue if the student has nothing to do. Fortunately my University runs a scheme which allows students to work for a charity for four weeks over the summer; the charity I chose to help was the MS Trust.

11 August 2014

​Kaz Laljee on going to the football

"I probably go to the match more now than I did before I had MS. And I enjoy it even more too!”

11 August 2014

“Being mindful allows you to focus your attention on the present…”

Everyone has good days and bad days but no mood lasts for ever. In Graham’s book, Feel Good, he looks at techniques for improving your mood and coping with whatever comes your way.

11 August 2014

Tim Sorrell on going to Glastonbury

As I write I’m preparing for Glastonbury 2014. This will be my twelfth time at the most famous music festival in the world. As a 19-year-old student in 1993, bumbling along to something I’d barely heard of with a ticket I’d bought the week before, I had no idea what I was getting myself into. 

11 August 2014

Two in a million

Graham and Nicki Law got married in 1997. Since then they’ve discovered that they are one of only a handful of couples in the UK where both partners have MS. Here they share their story and explain how they’ve found that mindfulness can help them deal with their symptoms and support each other.

11 August 2014

15 minutes with MS blogger Amelia Southard

Amelia Southard is a writer and blogger who lives in Devon. She was diagnosed with MS in 2002. Earlier this year she took part in the MS Trust Continence Question Time, a series of short videos looking at some common MS bowel and bladder problems.

11 August 2014

Having a baby

In the May issue of Open Door we covered pregnancy and MS. In this issue we look at some of the questions mums with MS ask about childbirth and caring for a newborn baby.

11 August 2014

Fiona Jarvis on finding stylish and accessible bars and restaurants

When I was first diagnosed, the most frustrating thing was that I could no longer wear high heels. I was also worried I may no longer be able to drive my lovely classic car. Fortunately I was still ok to drive but the heels went to the back of the wardrobe.

11 August 2014

Steve Woodward on going to gigs

There really isn’t anything better than live performance. Many of us are in our 20s-30s when we get our diagnosis, and, speaking personally, I was right in the sweet spot of my musical fanaticism. I’m 40 now and I was diagnosed with MS around 10 years ago. I’ve continued to attend gigs, and occasionally play in them too. Like many things which people with any form of disability do, they invariably require a certain level of planning. I’m also more selective about the gigs I go to, but I think that’s mostly to do with having a three-yearold daughter rather than a decrease in mobility.

07 August 2014

With a little help from our friends

We’re constantly inspired by the amazing work of our community fundraisers. Now some of you are joining together to make supporting the MS Trust even more fun, more social and more effective. Donna from our fundraising team introduces the new Friends of the MS Trust groups.

07 August 2014

Do people with MS report all their relapses?

This study looked at how often people reported their relapses and what effect their relapses had on their health, work and relationships.

10 July 2014

Have you got 56 questions about MS? Ask the Information Team

Living with MS can generate lots of questions.

Being diagnosed generates the first batch.

23 June 2014

Spread the word about MS bowel and bladder resources this World Continence Week!

Today is the start of World Continence Week 2014, the annual global campaign to raise awareness about incontinence issues.

12 June 2014

Reflections on the Great North Run

Andy Porter from Chester has run the Great North Run five times in aid of the MS Trust, raising more than £5,700 to help people with MS. He reflects back on his fond memories of the world’s greatest half marathon.

04 June 2014

Life after work: how did you manage the change?

Here at the MS Trust we are currently busy preparing the next issue of our quarterly newsletter, Open Door. The new issue, due out in August, has a feature on the changing world of work, exploring the various employment options open to you when you are diagnosed with MS.

30 May 2014

Why I support the MS Trust’s Secret Art Show

We’re already getting excited about our next Secret Art Show with over 600 fantastic pieces of art to tempt you. Here Katy Dynes, one of our regular contributors, tells us why she supports the Secret Art Show.

28 May 2014

World MS Day 2014: what’s your MS wish?

Today is World MS Day, the only global awareness raising campaign for MS. Every year, people with MS and MS organisations around the world come together to share information about MS and to raise awareness on how it affects the lives of more than two million people around the world.

16 May 2014

Magnetic imagery

Rod McLaren is a writer and artist who was diagnosed with MS last year. Ahead of this year’s MS Trust Secret Art Show, Rod considers the challenges of depicting an ‘invisible disease’.

16 May 2014

How a physio could help you

The MS Therapy Centre in Norwich, like many therapy centres around the UK, offers a range of rehab services that could support you to continue living a full, active life. Wendy Hendrie works at the centre as an MS Specialist Physiotherapist. Here she explains exactly what practical support she can offer and the difference it can make.

16 May 2014

A magical experience

Karen Walker took part in a skydive for the MS Trust in December last year along with a group of her friends who all have MS. Here she tells us how they went from meeting on an MS course in Sheffield to climbing 13,000ft together in a light aircraft!

16 May 2014

MS and pregnancy

MS is most often diagnosed between the ages of 20 and 40, when many people may be thinking of having a family. In this article Janice from the MS Trust information team explains what you might have to think about if you have MS and you’re considering having a baby.

16 May 2014

Tips for managing MS bladder problems

Around 75 per cent of people with MS experience bladder problems and these can have a big impact on your everyday life. However it is often possible to treat these and simple management strategies can make a real difference.

Illustration of rehabilitation team
16 May 2014

Practical answers to everyday problems

Rehab professionals can help you work out ways of dealing with some of the common problems MS can cause and support you to draw up practical goals for living the way you want to. On these pages some of the UK’s leading experts talk about how MS rehab has changed over the years and how it can help you today

Illustration of rehabilitation team
16 May 2014

Rehab in MS: what could it mean for you?

This June the MS Trust is bringing RIMS, Europe’s largest conference on MS rehabilitation, to the UK for the first time. We hope this will be a big step towards better rehab services for everyone affected by MS. But what exactly is MS rehab? In this special feature we speak to health professionals and people with MS to find out how it could work for you.

16 May 2014

MS and rehab: Who can help?

MS rehab services vary depending on where you live. If you have an MS nurse, they are often the best people to ask what’s available locally. If you have an MS therapy centre near you they might also be able to help you find a physiotherapist or other rehab professionals. You might need a referral from your GP to access some of these services.
16 May 2014

Results from the Department of Health Risk-sharing Scheme

As this edition of Open Door hits your doormat the preliminary results of the Department of Health Risk-sharing Scheme (RSS) will have been presented at the Association of British Neurologists meeting, and by the next edition we hope the full results will have been published in the Lancet or BMJ.

16 May 2014

How rehab helped me...

I am 67 years old and I have had MS for over 30 years. I live with my husband who is nearly 80. Thankfully he is fit and well and between us we manage most things. He does the cooking and housework but I help with the dusting. I have been in a wheelchair for many years but can stand on a turning aid, with my husband’s help, to go to the toilet or get into bed or the car. However, my standing had been getting much worse and moving me from one place to another was getting very difficult for my husband.

16 May 2014

MS and rehab: Who can help?

MS rehab services vary depending on where you live. If you have an MS nurse, they are often the best people to ask what’s available locally. If you have an MS therapy centre near you they might also be able to help you find a physiotherapist or other rehab professionals. You might need a referral from your GP to access some of these services.

14 May 2014

Ed's London marathon poem

Deputy Headteacher Ed Godfrey took part in the 2014 London Marathon and raised £2,000 to support the work of the MS Trust. He was also inspired to write a poem for a school assembly, where he shares the real experience of running a marathon!

12 May 2014

My zip slide from the Tyne Bridge

MS Trust Fundraising Officer Donna Barton accompanied a group of daring supporters taking part in a sponsored zip slide over the River Tyne on Saturday. Despite her fear of heights, Donna conquered the challenge and she tells us all about it below. 

08 May 2014

The ups and downs of being a teenager with MS

Gemma Berryman was diagnosed with MS when she was just 16 years old. Six years on, she has decided not to let her condition stop her following her dreams and she hopes to inspire other young people with MS by sharing her story here.

02 May 2014

My MS Super Team 2014: the winners!

The voting has closed, the nominations have been counted and we can now announce that the winners of our My MS Super Team awards 2014 are Lesley Catterall and Denise Middleton, MS specialists based in Milton Keynes, and theWessex MS Therapy Centre in Warminster.

11 April 2014

RideLondon-Surrey 100 as a lone rider

John Nicholson took part in the first ever RideLondon-Surrey 100 event last year. John shares his top tips for anyone considering taking part cycling events.

28 February 2014

Risk of developing MS - do oral contraceptives play a role?

Reports of preliminary findings from a study due to be presented at the American Academy of Neurology meeting in April suggests that the contraceptive pill may be a risk factor for developing MS.

20 February 2014

How we’ve helped secure the future of services for people with MS in Northumberland

  • Our GEMSS programme helps safeguard the role of an MS nurse at Northumbria NHS Trust
  • The programme enters its second phase with ten new teams from around the UK
20 February 2014

Going boldly through the blue

When Liz Hilland from Country Durham found out she had multiple sclerosis in 1999 she knew very little about it and feared it was an end to the life she knew. Since then she become involved in raising funds and awareness to help others understand more about MS and show that life goes on after diagnosis. Last year she took part in a zip slide from the Tyne Bridge as part of our Be Bold in Blue campaign.

20 February 2014

The power of personal contact

Jill Lovell has lived with MS for over 30 years and has been involved in the work of the MS Trust since the early days. Here she looks back on some of the big changes of the last 21 years.

20 February 2014

MS Trust fundraiser Anne Thompson

Over the last 10 years Anne Thompson, whose son has MS, has been one of the MS Trust’s most dedicated fundraisers. All in all she’s raised almost £15,000 – that’s enough to pay for the writing and printing of our new guides to managing MS bowel and bladder problems.

20 February 2014

It used to be “diagnose and adios”

Nicki Ward-Abel has been an MS nurse since 1997. Here she remembers how the MS Trust helped transform MS nurse training for the benefit of everyone affected by MS.

20 February 2014

Why we’re working with Parkinson’s and epilepsy charities to safeguard specialist nurses

At the MS Trust we believe that everyone with MS should have access to an MS specialist nurse. We believe that MS specialist nurses are the best people to help you manage the whole range of health issues around MS.

20 February 2014

“A positive approach to multiple sclerosis”

That was the headline on the very first issue of our newsletter Open Door. Simon, who joined our information team in 2000, reports on how our service has developed in response to changing needs over the years.

18 February 2014

Lovely bones

People with MS have a greater risk of developing thinning of the bones (osteoporosis). As there are often no symptoms, it may only be discovered when you break a bone in a minor accident. MS nurses Pauline Shaw and Debbie Quinn put together these tips for keeping your skeleton healthy and strong.

18 February 2014

Helping kids understand MS

Getting a handle on MS can be hard enough when you live with it yourself. But it can often be just as tricky for children and young people to understand why their mum or dad is too tired to play or why they might have to help out more at home.

05 February 2014

Why the youngest woman in this year’s London Marathon is running for the MS Trust

Georgina Goddard is the youngest member of our 2014 London Marathon team. She’s also the youngest of all the women running this year! Here she tells us why she chose to run for the MS Trust. 

31 January 2014

Is MS hereditary or not?

I wish I could give a simple answer to this question but I can’t. Strictly speaking, the answer is “No, it’s not inherited” but it isn’t quite that simple. This is the way the science goes.

22 January 2014

Disability and health employment strategy: the discussion so far

The statistics for being in any kind of employment if you are disabled are grim. The government knows this and has decided, rather late in the day, to accompany its plan of reducing the benefits bill for all disabled people with some ideas to improve opportunities for getting into and staying in, work. 

05 November 2013

How should we talk about disability and MS?

  • What counts as disability in MS?
  • How should we discuss the possibility of disability, especially with people who are newly diagnosed?
  • Is “disability” the right word to use?

These are difficult questions and I find my thoughts going round in circles.

04 October 2013

Toilet Taboo - sharing tips for looking after your bowels

Bowel problems are common in MS but they can be difficult to talk about, so people don’t always share positive experiences.

We’d really like your help – if you’ve found ways of managing bowel problems that have really worked for you, we’d like to share them more widely in a publication we are working on.

26 September 2013

How do you keep track of your MS?

Here at the MS Trust we’re currently working on information designed to help people with MS manage their day-to-day symptoms. The first booklets in the series will look at common bladder or bowel problems and suggest practical ways you can work together with your health professionals to deal with them simply and effectively.

24 September 2013

MS in the family

For the next issue of our newsletter, Open Door, we’re going to be focusing on MS in the family. MS is typically diagnosed when people are in their twenties and thirties – that is, when many people are thinking about settling down and starting families. 

21 August 2013

Food for thought

With a glittering career as a chef, restaurant owner and lecturer, Jonathan Reen was in the prime of his life. Then, at the age of 46, he was diagnosed with primary progressive MS. For six months, as his symptoms got worse, he had to give up the work he loved. But now, after a period of readjustment, he’s set up Urban Chefs, a new business offering cooking lessons to people in their own homes. Here he explains how his lifelong passion for food has kept him going through the ups and downs.

14 August 2013

How do you get the right help when you've only just been diagnosed with MS?

Telling your nearest and dearest that you’ve just been diagnosed with MS can be tough. People’s reactions will vary from being stunned into a very long silence to wanting to wrap you in cotton wool and do everything for you.

10 August 2013

How do you explain MS in a nutshell?

Explaining MS to people can be really difficult at the best of times. Explaining MS to people when you are newly diagnosed is even harder.

25 July 2013

Steve and Cat's Kilimanjaro tips

We spoke to Steve and Cat, who trekked Kilimajaro in 2008, for their advice on preparing for the challenge

25 July 2013

Kenny Smith's training tips for Kili

Kenny Smith, one of our most loyal supporters, is currently busy training and fundraising in preparation for his Kilimanjaro trek in October 2013. Here he shares some of his training tips.

06 June 2013

Great cycling at the Goodwood Motor Circuit

This was my second year taking part in the MS Trust’s cycle race at Goodwood and I knocked 20 mins off my time – 2hrs 15mins to beat next year then! I support the event for several reasons and it has been great fun to attend with my family and friends. My younger brother suffers with secondary progressive MS so I like to try and do something for an MS charity each year. 

02 June 2013

No chickening out: my skydive for the MS Trust

Rachel Coffey-Brittain has raised more than £1,100 for the MS Trust by taking part in a sponsored skydive as part of our Jump in June campaign. As our skydiving month draws to a close, Rachel tells us about her experience and how her own MS diagnosis led her to try something new.

17 May 2013

How NOT to talk about MS

Diane Evans on the inappropriate and unthinking ways that some people talk to a person with multiple sclerosis and why it’s best to stop, look and listen before holding forth on MS

14 May 2013

A brush with fate: why Brian Palmer is contributing to the MS Trust’s Secret Art Show

Fate tapped me on the shoulder in a room at the National Gallery in London’s Trafalgar Square.

It was the room where the Titians are, and, even if it sounds like Pseuds Corner in Private Eye, I was analyzing Titian’s late masterpiece “Diana and Actaon”.

03 May 2013

Bold in Blue: raising funds to help the MS Trust safeguard the future of MS nurses

Although Friday is the end of the working week, MS Awareness Week continues right through to Sunday 5 May – and Bold In Blue events will continue right through the month and beyond. So there is still plenty of time to to get involved and make a difference!

29 April 2013

Jackie and Laurence Llewelyn-Bowen kick off MS Awareness Week on ITV

We’re very grateful to our patrons Jackie and Laurence Llewelyn-Bowen who appeared on ITV’s Lorraine show this morning, talking about MS Awareness Week. Both Jackie and Laurence’s mothers were diagnosed with MS, so they have a real understanding of  the day-to-day reality of the condition.

Tim Siggs holding up his medal
10 April 2013

My triathlon experience

I'd always wanted to do a triathlon, but being diagnosed with MS makes you wonder, is it something I can do? It made me question many things about my life and what the future has in store.

03 April 2013

Tingling, crawling, burning or prickling in the skin.

People with MS often experience strange sensations in the skin. They can be really hard to describe and feel downright weird.

Describe fatigue to others
05 March 2013

Describing fatigue to others

What is it like to have fatigue (it is really awful) and how can we explain fatigue to others who have never experienced it? (almost impossible)

27 February 2013

Super Nurse nominee to pedal to Paris

An MS Nurse from Sheffield who is in training for a sponsored cycle from London to Paris, has been nominated for our Super Nurse Award. This award recognises nurses who make a real difference for people with multiple sclerosis. 

13 February 2013

Vitamin D update

Vitamin D (vitamin D3) is created in the skin when exposed to ultraviolet B radiation in sunlight. In the UK, between May and September, about 20 to 30 minutes a day spent outdoors in direct sunshine in the middle of the day will meet vitamin D needs for most fair skinned people. Factors such as darker skin, the use of sunscreen, levels of pollution and the unpredictability of the British summer can all lower availability and between October and April, the level of ultraviolet is too low for vitamin D to be made.

04 February 2013

What a great day! How research open days make a difference to understanding MS

Many people are intensely interested in what is happening in MS research. On Saturday, I was lucky enough to go to a Research Day held by Barts and The London School of Medicine and Dentistry, with UCL Partners, to hear what research they are doing and what it might mean for people with MS. This research group includes some of the top researchers in MS in the UK and they are keen to get people involved. The audience were mostly people with MS, their friends and family.

25 January 2013

Is MS a terminal illness?

Why multiple sclerosis is classed as a life long condition and not as a terminal illness.

23 January 2013

Watch your step!

This is a guest Blog from Steve Woodward about how to tackle the snowy weather.

07 December 2012

Which research should we update you on?

The MS Trust has an email alert which highlights research in MS published in the preceding week. How do we choose what to include? And are we getting it right?

09 November 2012

Living well with MS: a role for psychology?

A team in Surrey set up a psychology service offering CBT and MBCT, approaches that research has shown canhelp people adapt to and cope with living with MS. A psychologist, an MS nurse and a neuropsychologist describe these two approaches and include some of the comments made by clients who took part.

Neuropathic pain - the 'invisible illness'
09 August 2012

Neuropathic pain - the 'invisible illness'

Neuropathic or nerve pain is an invisible but debilitating symptom of multiple sclerosis.  A pain consultant writes about how this can be managed

19 July 2012

Gallop: A groundbreaking short film for MS

The thing we were always keen to achieve with Gallop is that it should be different to the video material already out there for MSers.  If shift.ms were to make a film then it we wanted to bring something different to the table that would resonate with our community and raise awareness of the challenges of the early days/years of living with MS.

06 July 2012

Tightrope

Are you healthy? Pretty much? Imagine you’re standing, there, wherever you are just now – living room, office, street – and someone runs over and gives you a shove. Of course, you’re shocked. Sure, your arm might hurt a bit where they pushed you. But basically, you’re OK. Your feet are firmly planted on solid ground.
But it’s different for me and other like me: people with dreadful, crippling fatigue caused by a long term illness such as MS, CFS/ME, lupus, cancer etc.

29 June 2012

It’s a family affair – for the families of people with MS

Having a family member diagnosed with any long-term medical condition, not just multiple sclerosis, can be difficult.

26 June 2012

Going through changes

Even though most people with MS don’t come from a family or lifestyle as high profile as the Osbournes, there are aspects of Jack Osbourne’s diagnosis that will be familiar to many.

10 May 2012

Epidemiology and the natural history of MS

Professor Helen Tremlett, looks at epidemiology (a study of disease in people) and the natural history of MS

13 February 2012

In development, licensed and approved; the confusing world of MS Drugs

In my day to day work I spend a lot of time of Facebook and Twitter, I post news articles and pick up on questions people might have for the MS Trust. I notice a lot of people (including myself) get very confused about drugs that are in development for MS. You see a news item about something like Sativex getting a licence, which will excite a lot of people thinking this entitles them to be able to have the treatment, but when they try to get it, they get turned down as the drug is not yet approved by the NHS. 

09 February 2012

Your food, your diet

Recent years have seen much interest in the role of diet to help people with MS with problems such as eating difficulties, weight loss and constipation. It is now accepted that diet also has a preventative role to play, minimising risk for conditions secondary to disability, such as obesity and heart disease, and helping to promote general health and well-being.  Dietitian Anne Payne looks at some of the issues.

09 February 2012

Dating with MS

An interesting conversation started on Twitter. How do disabled folks date? The big question was about how to appeal to a potential partner. Kevin Ward sheds some light on the options.

29 November 2011

On 'Coming Out'

After disclosing my MS in a pretty unabashed fashion in a national broadsheet (The Independent) last November  I thought I was done with ‘coming out’ about my disease.  Then this summer a BBC researcher got in touch about a series for Radio 4 and wondered whether I’d be interested in telling my story for their series.

10 November 2011

Intrathecal baclofen - who for and when?

Intrathecal baclofen (ITB) is an invasive treatment for spasticity and spasms. It used to be thought of as a last resort but more recently both health professionals and people with MS are realising it can help to keep people mobile and well without the side effects often experienced by oral medications. Dr Val Stevenson discusses the treatment and Carmel Mackey, who uses a baclofen pump, talks about how it has affected her life

10 November 2011

Management of spasticity and spasms in multiple sclerosis with a baclofen pump

05 May 2011

Mindfulness training for people with multiple sclerosis and carers

Mindfulness involves learning to bring our full attention to our experience moment by moment in a kind and non-judgemental way so that we can be aware of what is really happening in our bodies, our minds and emotions and our environment.  Vanessa Hope considers how the approach might help people with MS.

07 April 2011

MS Trust is delighted to be awarded the Information Standard quality mark

The Information Standard was devised by the Department of Health to allow people to judge what information is accurate, based on good evidence, up-to-date and unbiased?  MS Trust  publications and website pages carry this mark.

06 May 2010

The bank that gives hope

Dr George Gveric writes about the work of the UK Multiple Sclerosis Tissue Bank, which was set up to fulfil wishes of those who wanted to help MS research by donating brain and spinal cord tissue, and to provide a resource for scientists investigating various aspects of MS

01 November 2009

Disability Law Service

People with MS may face a range of legal problems as a consequence of having multiple sclerosis and it can sometimes be difficult to know whether they have any legal rights they can assert to resolve these problems. This is where the Disability Law Service can come in.

10 August 2009

Living with progressive MS in the family

Report of research exploring experiences of supporting a family member with progressive MS and the transition to respite or long-stay care.

05 February 2009

Managing stress in multiple sclerosis

Stress is a common and sometimes unavoidable part of life, but it may be possible to control stress by changing the situation in order to limit the stressful elements or by learning to change how you react to stressful events.  Psychologist Dr Gail Kinman looks at causes of stress and ways to manage it.

David Elliot and friend on the Great Wall of China
01 June 2007

From the end of the World to the end of the Wall

My story is all too familiar, six years ago I was happily married with one little girl and another baby girl due any day. Then I was diagnosed with something called MS.

Shadows
01 May 2007

MS and relationships

A diagnosis of MS may affect how you feel about yourself and how you relate to your partner. Catherine Allen of Relate discusses ways of maintaining a fulfilling intimacy within the relationship

01 November 2006

Janet's diary- Peru trek 2006

At last, after all the months of preparation we finally met all of our fellow trekkers at Heathrow, together with Sally and Charlotte from Skyline and the doctors on the trek - Graham and Marc - and set off on the first leg of our journey to New York's JFK airport.

Lady riding a horse
06 May 2006

Hippotherapy - a new movement experience

Physiotherapist Lesley Furnell from Revive MS Support writes about how using horseriding to create movement can be helpful for people with multiple sclerosis.

10 November 2005

Complementary and alternative medicine and MS

An MS nurse looks at the use of complementary and alternative medicine (CAMS) is managing multiple sclerosis