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Today #TeamPurple take on the marathon!

Posted on: April 22 2018

Photo of runner message for marathonIt's a beautiful day in the capital, and our amazing #TeamPurple runners are getting ready to take on the Virgin Money London Marathon in aid of MS-UK.

They will be joining so many other dedicated charity supporters this morning, and at last count the event had raised collectively over £20,000,000 for charities!

So, why have our runners decided to get involved? Vic, from Essex, remembers watching her Dad run when she was a child. Now she's running in his footsteps, as he no longer can. Sue and Ellie-Rose are a mother and daughter team taking on the mighty 26.2 miles together. The Boland family are all in it together and have flown over from the USA to run today. So many reasons, but each one has been touched in some way by multiple sclerosis (MS).

All week we have been at the Expo event, meeting our runners and wishing them lots of luck.

Have a look at the messages of support, positivity and determination that they wrote on the MS-UK #TeamPurple runners wall in our Facebook album today!

For everyone running on 22 April 2018, whoever you're running for, good luck.

We'll be cheering you all on every step of the way!

You can follow MS-UK on Twitter to see marathon day live updates!

Download our MS Awareness Week resources!

Posted on: April 16 2018

Hello,

This time next week MS-UK will be celebrating MS Awareness Week, and you can join us!

This year we are spreading the word about our newest national service, MS-UK Counselling. I would love you to get involved by downloading our Twitter and Facebook graphics...by adding them to your profiles you will be helping us reach even more people affected by multiple sclerosis who may benefit from counselling. 

Right click on these images and select 'Save image as...' to download them to your computer:

Facebook cover

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Twitter header

Twitter cover MSAW - supporters_0.png

Throughout the week of 23 – 29 April we will also be posting on our Facebook and Twitter channels so do like and follow us to keep updated.

Thank you for your help!

Amy

CEO

MS Awareness Week is coming!

Posted on: April 09 2018

Hello,Photo of Amy Woolf, CEO at MS-UK

April is always an exciting month for us here at MS-UK as we mark MS Awareness Week, and 2018 is no different! 

This year we are celebrating our newest national service, MS-UK Counselling. We launched the pilot of this service in October 2017 and since then have delivered over 150 telephone counselling sessions to people with a diagnosis of multiple sclerosis. But we want to help even more people!

At MS-UK, we believe that it’s good to talk. However, we know that there can still be a stigma around accessing counselling, and we want to break down these barriers so people diagnosed with multiple sclerosis can get the support they need. 

So, this MS Awareness Week I ask you to help us spread the message that it’s good to talk! Throughout the week of 23 – 27 April we will be posting on Facebook and Twitter all about MS-UK Counselling, and it would be great if you could help us spread the word by retweeting or sharing our posts. Thank you!

Keep an eye on our blog for updates as we near the big week...

Best wishes,

Amy

CEO

New Pathways issue 108 is out now!

Posted on: April 06 2018

Hi everyone,Front cover of New Pathways

I am pleased to say New Pathways issue 108 is now landing on doormats across the country! As always we have a packed issue, full of all the latest multiple sclerosis (MS) news and research, including drug updates and the latest cannabis study findings. 

As the sunshine begins to make an appearance, we get topical with lots on vitamin D. MSer Ian Cook puts vitamin D tablets and sprays to the test (see page 30) and Kahn Johnson reveals what happened when his vitamin D levels became toxic on page 16. 

Also in this issue, MS Nurse Miranda Olding discusses sexual dsyfunction and what can be done to help (page 14) and we have the big interview with the star of Channel 4 programme 'The Search for a Miracle Cure' Mark Lewis (page 24). 

I hope you enjoy reading this issue, and please do email me your comments and letters to newpathways@ms-uk.org.

Best wishes,

Sarah-Jane

Editor, New Pathways

P.S. Don't forget New Pathways is available to read on the go. Download the My MS-UK app from the App store on your phone or tablet device today!

Guest blog: Working together to improve MS healthcare: including the voice of people with MS

Posted on: March 30 2018

Dawn Langdon, Professor of Neuropsychology at Royal Holloway, University of London, and Co-Chair of MS in the 21st Century reveals how you can help...

Most people with MS recognise the expertise of their doctors and nurses, but somehow feel that there doesn’t seem to be enough time to cover all the things that matter to them and sometimes important things get missed. A group of people with MS and healthcare professionals are working together to improve clinic visits.

The group is called MS in the 21st Century. Many countries are represented and we learn from each other. We meet up a few times a year. We work to improve MS health care by understanding each other’s priorities and modelling partnership between people with MS and health professionals.Photo of Dawn Langdon

We have recently published a paper in a scientific journal which includes authors who have MS and also authors who are health professionals. This is a ground breaking project. The authors have discussed the priorities they have in an MS clinic visit and agreed a list of unmet needs from the viewpoints of both people with MS and health professionals. We have developed the paper jointly. As well as highlighting our different perspectives, we have also made practical recommendations. Our aim is to bridge the gaps between what people with MS and health professionals expect and provide.

We hope that the publication of this paper will be a key step towards ensuring that MS care addresses the expectations, priorities and needs of people with MS. It is vital that we work together to support people with MS to be fully engaged in managing their own condition. The paper emphasises the perspective of people with MS and how essential their involvement is in high-quality MS care.

From my own work as a neuropsychologist, I am particularly concerned to increase understanding of the psychological impact of MS, including cognition, mental health and wellbeing. We need to increase awareness of how these impacts can be recognised and successfully addressed.

Birgit Bauer, another author and a person with MS says, ‘As a person with MS, I cannot overstate the significance of this publication. I am hopeful patients everywhere and their healthcare teams will recognise the need for better communication and partnership with the ultimate goal of more effective and personalised care.’

"Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: a combined perspective from the MS in the 21st Century Steering Group" is published in the peer reviewed journal, Multiple Sclerosis and Related Disorders (MSARD), and is freely available online now. DOI: 10.1016/j.msard.2017.11.013

Want to get involved?

If you are a person with MS, or are close to someone who has MS, and you are interested to help Professor Dawn Langdon’s team in their work on psychological aspects of MS, please email d.langdon@rhul.ac.uk.

HSCT the truth

Posted on: March 29 2018

On 19 March, BBC Breakfast featured a short piece on a HSCT trial with relapsing remitting multiple sclerosis (RRMS) patients taking place in Sheffield. It provoked a strong reaction from the MS community and a lot of questions, so we’ve tried to answer some of them…SJL.png

What is it and how does it work?
A variety of clinics and hospitals across the world, including Sheffield and London are trialling and practicing HSCT treatment.

This particular Hematopoietic stem cell transplantation (HSCT) trial, which has been taking place in Sheffield, America, Sweden and Brazil, involves the patient having stem cells extracted from their bone marrow. Next they are given chemotherapy treatment, which strips back their immune system to almost that of a baby and then the healthy stem cells are transplanted back into their body.

The trial was set up to test the efficacy of HSCT treatment versus FDA approved MS drugs, such as interferon, glatiramer acetate, mitoxantrone, natalizumab, fingolimod, or tecfidera.

The findings
Just over 100 patients have taken part in the trial, in hospitals in Chicago, Sheffield, Uppsala in Sweden and Sao Paulo in Brazil.

Scientists conducting the research claim they have made a significant breakthrough with this type of treatment in patients with highly active relapsing remitting multiple sclerosis (RRMS).

Patients received either HSCT or drug treatment. After one year, only one relapse occurred among the stem cell group compared with 39 in the drug group.

After an average follow-up of three years, the transplants had failed in three out of 52 patients (6%), compared with 30 of 50 (60%) in the control group.

Those in the transplant group experienced a reduction in disability, whereas symptoms worsened in the drug group.

The interim results were released at the annual meeting of the European Society for Bone and Marrow Transplantation in Lisbon.

Click here to read the study’s abstract - Hematopoietic Stem Cell Therapy for Patients With Inflammatory Multiple Sclerosis Failing Alternate Approved Therapy: A Randomized Study.

What is the inclusion criteria?
Participants have to be aged 18-55 and have a clinically defined MS diagnosis using the revised McDonald criteria.

Their Expanded Disability Status Score (EDSS) should be 2.0 to 6.0.

The must show inflammatory disease despite treatment with standard disease modifying therapy, including at least six months of interferon or copaxone.

Inflammatory disease is defined based on both MRI (gadolinium enhancing lesions) and clinical activity (acute relapses *treated with IV or oral high dose corticosteroids and prescribed by a neurologist). Minimum disease activity required for failure is defined as: a) two or more *steroid treated clinical relapses with documented new objective signs on neurological examination documented by a neurologist within the year prior to the study, or b) one *steroid treated clinical relapse within the year prior to study and evidence on MRI of active inflammation (i.e., gadolinium enhancement) within the last 12 months on an occasion separate from the clinical relapse (three months before or after the clinical relapse).

A steroid treated relapse will include a relapse that was severe enough to justify treatment but due to patient intolerance of steroids, or a history of non-response to steroids, they were offered but not used.

More information about inclusion and exclusion criteria can be found here.

Can I get on the trial?

Unfortunately you cannot. This is because although the trial is still active they are not recruiting.

Will it really be available on the NHS within a few months?
Dr Susan Kohlhaas, director of research at the MS Society, said the stem cell transplant HSCT "will soon be recognised as an established treatment in England”, but will it?
While this is a phase III trial testing the efficacy of the HSCT, which will be incredibly significant when it comes to gaining licensing approval, the treatment has only been formally assessed for use in the NHS within clinical trials.

There will also be a few more hoops to jump through, such as gaining approval from NICE (The National Institute for Health and Care Excellence). Although NICE does now have a fast track criteria, which enables certain drugs and treatments with the right evidence to pass through the system much quicker than we have seen in the past. Cost will almost definitely be a deciding factor. HSCT comes with a price tag of £30,000, but there are already some approved DMTs with a similar costing available to patients, so this could help justify the expenditure, especially if the treatment can halt the MS for a long period of time. We should also be mindful that a higher price point can often lead to drugs and treatments being allocated to minorities with strict criteria, rather than being rolled out for everyone.

When does the trial end?
The trial is still ongoing and its estimated end date is December 2018.

Is it really a “game changer”?
Well, it’s a great step forward for people with RRMS and it does mean there is a potential highly-successful treatment that could halt MS in its tracks on the horizon.
However, HSCT treatment in secondary and primary progressive patients doesn’t tend to be as effective and you tend to see less improvement in disability because the nerve damage by this point has become permanent.

There are still a number of questions we do not have the answer to, such as how long does the treatment last?

But maybe the biggest questions of all is if MS is genetic, the person will still have the same gene and what’s to stop the gene being triggered again and the MS returning if we do not know the true cause?

Disability Rights Handbook out now

Posted on: March 14 2018

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Ryan Jones

Hi everyone,

We just wanted to let you know about this important source of information that our MS-UK Helpline team regularly uses to support the multiple sclerosis (MS) community.

The Disability Rights Handbook is a guide to benefits and services for anyone with a disability, their families, carers and advisers. It contains a wealth of information relating to the benefits system, as well as social care services and help for carers.  This guide will be relevant to many people living with MS.

Clients who use the MS-UK Helpline have let us know how valuable the information provided by our advisors is and, since a lot of that information can be found in the Disability Rights Handbook, we wanted to share it with you. If you would like to buy your own copy, you can do so on the Disability Rights UK website store.

We wanted to let you know this was available to pre-order as last year’s handbook sold out in quite quickly!

As always, though, our MS advisors are available to listen to you, talk things through with you and keep giving you as much helpful information and support as possible.

Best wishes,

Ryan

Ryan Jones

MS Advisor

MS-UK Easter opening hours

Posted on: March 09 2018

Hello everyone,

blog11.jpgJust to let you that due to the bank holidays, we will be closed over Easter…

Friday 30 March

MS-UK and Josephs Court will be closed.

Saturday 31 March

Josephs Court, our wellness centre based in Essex, will be open 9am to 3pm.

Monday 02 April

MS-UK and Josephs Court will be closed.

We will reopen on Tuesday 03 April and the MS-UK Helpline will be available from 9am either via live web chat or via telephone on 0800 783 0518. If you would like information about multiple sclerosis (MS) please do visit the MS-UK website.

For those celebrating, Happy Easter!

Best wishes,

The MS-UK team

Participants wanted – investigating the role of self-perceptions in adjustment to MS

Posted on: March 08 2018

A team in the Department of Psychology at the University of Sheffield are investigating the role of self-perceptions in adjustment to multiple sclerosis (MS).

researchshout-out.jpgThey are inviting people to take part. Some of the topics discussed in the questionnaires include current experiences of stress, the impact of MS on various areas of life, your self-perceptions, and perceived ability to cope with the difficulties associated with MS.

The study consists of two parts; Each part should take no longer than 20 minutes to complete. After the second questionnaire, participants will be entered into a prize draw to win a £50 (or equivalent currency) Amazon voucher.

The results of the study will be written up and submitted as a doctoral thesis as part of the Clinical Psychology Doctorate (DClinPsy) at the University of Sheffield. Additionally, the study will be submitted for publication in a scientific journal. Information regarding individual participants will not be included and participants will not be identifiable from any reports or publications of the study.

The study was reviewed and approved by the University of Sheffield Research Ethics Committee. Some of the topics discussed in the questionnaire may be distressing as they ask about current and past experiences and feelings. Contact information for listening and support services will be provided at the end of the study.

If you are interested in taking part, you can find out more about the study online.

Primary progressive multiple sclerosis patient set to end his life is saved by another MSer

Posted on: February 15 2018

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Sarah-Jane, Editor of New Pathways magazine

Yesterday evening, BBC One’s The One Show aired the story of one MSers decision to end his life at Dignitas in Switzerland.

 

Colin Campbell, 57, from Scotland was diagnosed with primary progressive multiple sclerosis (PPMS) in 1995. In the knowledge that his MS would get progressively worse he had decided that “another winter would be unbearable”. He had chosen 15 June as the day he was going to die. He didn’t want to be alive and more disabled than he is now. His story even made it onto a local Scottish news channel. Little did he know that just half a mile down the road from where he was living a stranger was watching - another MSer Rhona Tynan. She had watched his story and decided that she “couldn’t let this man go ahead and do this without trying”, so she phoned up the TV station and got in touch with Colin. She asked him to come and see her and how she was coping.

“I just wanted to see if I could help him see if things could be better,” she said.

Colin did go and see Rhona and they formed an unexpected friendship. After spending two “enjoyable” days together and after discussing things with her Colin decided to cancel his 15 June appointment in Switzerland. Seven months later, Colin discussed how meeting Rhona had changed his life. He said: “My flat had become a prison. I couldn’t get out, there were two flights of stairs. You lose the will to live.

“No one had explained to me what options there were,” he explained. “If Rhona hadn’t have contacted me that would have been it for me on the 15 June. It would have been all over,” he added.

Rhona said: “It became very clear to me that Colin didn’t have the correct support for quality of life.” “I know a scooter gave me quality of life because it allowed me to get out and about. Colin didn’t have one and he didn’t know how to go about getting one.” So they decided to have a day out together trying out and testing some scooters. But getting a scooter was just the beginning. He also found out that he was entitled to a ground floor accommodation and 24-hour assisted living. Inspired by her relationship with Colin, Rhona has now set up a networking group for other people who have found themselves in a similar situation. Rhona has also recently been to Mexico for stem cell treatment and is seeing positive results. She talks about her improvements on the show and has most recently managed to walk 50 steps while holding her husband’s hand, something she wasn’t able to do before the treatment. If you missed the show, which aired at 7pm on 14 Feb 2018, and would like to watch the full interview visit the BBC iPlayer and scroll through to 32:40 minutes. If you would like to read more about assisted dying, subscribe to New Pathways magazine issue 107 and read a great piece written by Journalist and progressive MSer Ian Cook, as he discusses your right to die. New Pathways is a magazine for people living with MS. The much loved title has been running for 25 years and is a great source of information and support for many MSers. To subscribe click here, or call 01206 226500.

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