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Professor’s hypothesis for MS cure gives people false hope

Posted on: July 25 2018

sarah-jane-300.jpgNow that I’ve got your attention I should apologise to Professor John Paul Leach, consultant neurologist at the University of Glasgow because the headline of this story isn’t entirely true. Unfortunately, all he is guilty of is doing his job and have a hypothesis for something we all want for multiple sclerosis (MS) – a cure.

Professor Leach has hypothesised that MS is caused by three-hits, strictly in order, in genetically susceptible persons. His three-tiered hypothesis is as follows:

  1. A clinic-epidemiological model of MS as a rare late complication of two sequential infections (with the temporal sequence of infections being important)

  2. A proposal that the first event is helminthic infection with Enterobius Vermicularis (threadworm), and the second is Epstein Barr Virus infection

  3. A proposal for a testable biological mechanism, involving T-Cell exhaustion for Epstein Barr virus protein LMP2A.

The professor and his team believe that this model satisfies some of the as-yet unexplained features of MS epidemiology, is consistent with the clinical and neuropathological features of the disease and is potentially testable by experiment.

Put simply it is thought that MS develops when a susceptible person contracts two separate common infections, threadworm and the Epstein Barr Virus, which cause the body to attack itself. Doctor’s now believe that if this in fact is the case, a vaccine for one of the conditions, such as the Epstein Barr Virus could be created to prevent future people developing the condition. 

Some of the main news outlets have sensationalised this story. Yes this is an exciting hypothesis, but if we will have to sit back and let the experts conducted experiments and clinical trials before we find out if this is truly an option for the future.

Professor Leach’s hypothesis was published in the journal Multiple Sclerosis & Related Disorders.

Blog by Sarah-Jane, Editor of New Pathways Magazine
 

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New film from Shift.MS exposes the hidden symptoms of MS

Posted on: July 18 2018

New Pathways editor, Sarah-Jane Lampe, reviews Shift.MS's latest film 'Hidden'

On the 15 July I had the pleasure of attending the preview of Shift.MS’s latest multiple sclerosis (MS) film, Hidden. I knew from the title that it was going to focus on the hidden symptoms of MS and I wondered with intrigue how that might be portrayed. I will admit that I watched the trailer for the film before attending the premiere and was a little shocked by how scary it appeared to be, but I went with an open mind and was not disappointed.

The film itself tells the story of a young woman called Keisha, played by actress Saskia Horton, who is unknowingly experiencing the hidden symptoms of MS. Told by her doctor that her symptoms are nothing to worry about, she goes about her daily life and we, the audience, see the different symptoms she is experiencing. The symptoms are illustrated very cleverly with the use of effects, doppelgangers and the popularised street dance called krumping. This form of dancing is characterised by free, expressive, exaggerated, and highly energetic movement, perfectly suited to what was set to be a battle with MS.

The character lashes out at her doppelganger expressing frustration and anger through the selected method of dance. We see her struggle with fatigue and coordination issues, such as opening a door or pushing a button in a lift, tasks that what would seem simple to the outside world.

It is only when the young son of another character already diagnosed with MS called Kirstie, played by Amber Doyle, notices Keisha struggling and asks his mum to speak with her. It is only then that Keisha begins to understand what is happening to her and is able to tame her doppelganger. 

The film was funded by pharmaceutical company Roche and it was obvious from the outset that the production team had spent a lot of time, money and effort on it. The production has an artistic feel and is very slick.

The film’s director, Dan Henshaw had come up with the concept for the film, which originally had a much more gothic feel than the finished product. I was actually pleased about this when I heard because throughout history disability has been portrayed quite negatively with that stereotypical gothic look and feel. I think Shift.MS has Cathy John, a script consultant, who was involved in the process and happens to have MS, to thank for the softening of the original idea. It came across well in the final edit.

Once I’d seen the film, the trailer no longer seemed scary and I felt like I understood the reasons behind its shock and awe approach. The story of Keisha and her undiagnosed symptoms is, unfortunately, a common one and many people will relate to her. My only criticism is that I wanted to see more of Keisha living well with MS and I wasn’t very sure how she managed to tame her MS doppelganger. Making sense of what is happening and understanding your symptoms is one of the first steps, but did she go back to her GP, did she take a disease modifying drug, did she try a complementary therapy? How did she ‘tame the beast’?

I’d be interested to hear your thoughts, so feel free to email me at newpathways@ms-uk.org 

 

BBC Look East hosts NHS70 debate live...

Posted on: July 12 2018

BBC Look East presenter Susie with LMay.jpgOur very own Laura May reports back from the BBC Look East panel debate about the future of the NHS...

Last week, I went along to a live BBC Look East television panel debate all about the future of our National Health Service, to mark the 70th anniversary of the NHS.

Hosted at the new Anglia Ruskin School of Medicine in Chelmsford, the event was broadcast live on BBC Look East on BBC1 in the East of England at 6.30pm. Radio Essex were also live from the lecture theatre.

The debate, which was led by presenter Susie Fowler-Watt, posed questions about the future of the NHS. The primary focus was on funding, as may be expected, but from the debate there was no clear answer to the funding gap that now faces the NHS. Some treatments, deemed ‘cosmetic’, were seen as a possible area to cut costs, while Susie also called into question the number of management staff involved in the running of the NHS, rather than medical professionals.

Something all of the panel and audience seemed proud of was the cornerstone of our health system – the NHS was launched on the premise that treatment would be ‘free’ at the point of entry, paid for overall by taxes. There seemed to be a strong feeling that this should continue, but no knowledge of how to keep the service this way for the future.

It was a great experience to watch ‘live’ broadcasting, and I came away from the event proud of our NHS and how it supports people across the country every single day. I am, however, concerned that it will be those that cannot afford treatment who will suffer if we begin to charge a fee for healthcare. But for now, the NHS remains free at the point of entry.

If you would like to information about NHS services in your area, please get in touch with the MS-UK Helpline. You can call us on 0800 783 0518, email us or use our live web chat service.

Paralympic athlete announces accessible clothing design collaboration with fashion brand ASOS

Posted on: July 06 2018

Chloe Ball-Hopkins - ASOS 1.jpgChloe Ball-Hopkins, GB Paralympic athlete, has announced on Twitter that she has been working with the fashion label ASOS to produce a range of clothing specifically designed for people with disabilities.

Announcing the news on Twitter yesterday, Chloe said: 'So over the last several months I have been working with @ASOS to create a fashionable, yet practical waterproof all in one! Not just for people like me in a chair but for anyone. It's about making fashion accessible!'

She was quickly inundated with positive reactions from her followers, with many thanking her for her efforts.

One follower said: 'Thank you so much! I love it so much! We need more people like you!'

Helen Eccles said: 'Brilliant! This is the most positive tweet to have appeared in my feed all week. We need more fashion companies to embrace accessibility (in its widest sense) to meet the needs of all their customers.'

The jumpsuit, which is part of ASOS’s DESIGN range costs £50.00. However, it is no ordinary jumpsuit. It’s been adapted to be wheelchair friendly, with the jacket and trousers zipping together, and a hem which is little longer at the back to stops it from riding up. It is also fully waterproof, including the zips and has adjustable cuffs and sleeve lengths. Not only is its tie-dye design fashionable and reflect festival style, it has a soft jersey lining which offers comfort and warmth too.

Accessible clothing ranges are few and far between and they aren’t always as fashion forward as many of the high-street ranges available for able bodied people.

Chloe said she thought the zip around the waist top and bottom would make it easier to get in and out of and the cuffed ankles allow for shorter people and wellies. The top also has a waterproof pocket for a phone or medical stuff. 'The key is its fashion that’s accessible, not for [the] disabled,' she added.

NHS at 70 and the next 70 years...

Posted on: July 05 2018

Hello,Photo of Laura May from MS-UK

This evening I have been invited to attend a live television panel debate about the future of the NHS, as the country marks the 70th anniversary of the National Health Service. 

Back in 1948, the NHS was launched on the premise that treatment would be ‘free’ at the point of entry, paid for overall by taxes. The new service saw 97% of the public register with their local doctor and this meant the policy makers of the day saw the NHS as a glorious success. (1)

So, this evening I will be sitting the in audience as BBC Look East broadcast their live debate from 6.30pm. They will be exploring questions about the cost of the NHS, its future and what it may look like in the future. I am interested to hear what some people think the answers may be...perhaps higher taxes, charges for certain treatments, privatisation?

I would like to know what you think and how you imagine the NHS in the future? Please join our discussion on Facebook at www.facebook.com/MultipleSclerosisUK and let me know your thoughts.

I will write a follow up blog after this evening and let you know where you can watch the debate and what topics crop up, but until then I say ‘Happy Birthday!’ to the NHS!

Laura

Laura May, Marketing Manager

(1) BBC, A brief history of the NHS

Local man smashes London Marathon target after revealing MS diagnosis

Posted on: June 15 2018

A Colchester man who recently revealed his diagnosis of multiple sclerosis (MS) has made history by raising the £2,000 needed to run the 2019 Virgin Money London Marathon for MS-UK in just four days, smashing the charity’s record.

Since opening up on his blog about his MS and his struggles with mental health, Tom Cutts, 26, has attracted 107 supporters to his JustGiving page and raised a stunning £2,330*, cementing his place in next year’s prestigious race in less than 96 hours.

The former Wivenhoe Town footballer was diagnosed with MS in October 2017 after feeling pain in his chest, head and stomach. Since then he has admitted to falling into depression as he struggled to come to terms with a future living with the incurable neurological condition.

Mr Cutts said: “At first I thought it [the pains] could be to do with the usual stress of work but even with medication these pains never subsided.

“Getting that diagnosis sent thoughts spiraling throughout my mind. The first once was ‘what is multiple sclerosis?’ I’d only ever heard the word one or twice in my life but never knew what it meant.

“My diagnosis has caused me to fall into depression, my anxiety levels have skyrocketed and at times so have my stress levels. Coming out of depression takes time, there’s no one-click solution.”

When asked about how he felt about raising the money in record time, he continued: “The response I have received on my sponsorship page has left me speechless.

“To hit my target in less than 96 hours and to raise over £2000 that quickly doesn’t feel real. Recording MS-UK’s quickest time to hit this mark has made me feel privileged to have so many great people in my life who have allowed me to achieve this. It has been one of the most amazing experiences I’ve ever had.

“Since announcing my diagnosis to the public on Friday evening I’ve received so many messages of support from friends and people around the world that it has been hard to manage all these conversations at once.

“As well as raising money for MS-UK, my aim is to raise awareness of both MS and mental health, which are both very personal to me.

“Sharing my experiences of MS and opening up about my depression was important to me as even though I am going through a hard time in my life and struggling inside, if I am able to help just one person then my blog is a success.

“I hope to help people realise that they are not alone with these battles in life. People keep telling me that I am inspirational but to me I’m just being myself!”

You can visit Tom’s JustGiving page www.justgiving.com/fundraising/tomcuttsmsuk or read his blog www.mscontroltomajortom.com

 

*Figures as of 13 June 2018

Hello! I'm Callum Winterford, the new Marketing Officer at MS-UK

Posted on: May 02 2018

Picture of Callum Winterford, Marketing Officer at MS-UKIntroductions can be awkward. There are no rules to meeting someone new. Do you shake hands? Do you go in for a hug? What if you go in for a hug and they open up for a handshake and you end up doing some kind of weird, welcome dance that is neither one nor the other? Then you have to smile and laugh and pretend that the last few seconds never happened, making sure to maintain as little meaningful eye contact as possible. My palms are clammy just thinking about it.

That’s why digital introductions are so great. You can grab a keyboard and mouse and dive straight in.

My name is Callum Winterford and I’m the new Marketing Officer at MS-UK. I’ll be the charity’s new face on Facebook and twit on Twitter, spending time sharing news stories and blog posts, responding to your questions, and engaging with our amazing community. I will also be taking over the reins of the MS-UK blog, so if you fancy writing a few words for us you can drop me an email at callum@ms-uk.org.

I’m really looking forward to being a part of the MS-UK family and getting to know our supporters. Here’s hoping that 2018 is the purplest year yet!

Last chance to take our annual survey!

Posted on: April 30 2018

Today is the last chance to take our annual survey online!

Every year we run our annual 'Getting to know you' survey, asking you to tell us a bit about yourself.

We do this so that we can make sure we are always providing services that really meet your needs, and so that we ensure we are reaching as many different people as possible that want multiple sclerosis information (MS) or support.

In the survey we'll be asking questions all about you - from how old you are to what MS-UK services you may have used in the past. Everything is completely anonymous, and we won't be asking you for any contact details at all.

Complete the survey now.

You can take the survey online up until 5pm today - thank you for your help!

Virgin Money London Marathon opened by the #SpiritofLondon winners

Posted on: April 19 2018

Wednesday 18 April saw the opening of the Virgin Money London Marathon Expo, the event that kicks of the marathon and where this year’s runners register to receive their official running number for Sunday’s big event.

This year’s expo was opened by the Spirit of London winners Matthew Rees and David Wyeth. Swansea Harrier Matthew famously helped David, whose legs began to buckle beneath him due to exhaustion, down The Mall to the finish line in last year’s race. It was that very moment that encapsulated the unique spirit of the Virgin Money London Marathon and inspired the theme for 2018.

Matthew and David are the first winners of the new Spirit of London award, followed by former boxer Michael Watson, who completed the 2003 London Marathon 12 years after suffering severe brain injuries in a world title fight against Chris Eubank. Watson spent 40 days in a coma and six years in a wheelchair before taking part in the marathon in April 2003.

This year MS-UK has 109 runners running to raise money for the charity so it can continue to support anyone affected by MS. On opening day the MS-UK fundraising team saw a record number of runners attend, ready to get their numbers and excited to run on Sunday.

Reminding runners to make sure they come along and sign up, MS-UK Fundraising Manager, Jill Purcell, said: “Runners can visit the Virgin Money London Marathon Expo from Wednesday 18 April to Saturday 21 April to register for their running numbers. We’ve seen a record number of runners attend on the first day alone and are looking forward to seeing each and every one of you.

“Every year I’m brought to tears by our runner’s stories. Everyone’s reason for running is different, but the one thing they all have in common is that we are all working hard to support people with MS. I’m incredibly proud of all our runners. I’ve seen and heard how much training and hard work they have put into their preparation and I have no doubts that they’ve got this!”

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?

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