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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!

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?

‘I’m f#*king well going to beat it!’

Posted on: November 23 2017

mark-lewis-3.jpg
Mark Lewis

Media lawyer, Mark Lewis, shares his experience of living with MS in the Channel 4 documentary, ‘In search of a miracle cure’. He visits Jerusalem to receive experimental stem cell treatment as part of a trial that could alleviate his symptoms and slow the progression of his multiple sclerosis (MS).

 

The documentary reflects various aspects of living with MS, including the changes it can bring to one’s lifestyle and the emotional turmoil it can cause. Mark’s perception of his MS is that it is something that he can either win or lose, and he is clear that he is going to win.

How do you view your MS? Do you feel that it is a battle that you’re aiming to win day after day, or is this something that is part of you that you don’t need to fight? Perhaps your MS is benign and does not influence your life? There is no single MS experience and each person might find that their emotional responses vary over time.

There are times when your MS might feel overwhelming and you might be frustrated at not being able to control what is happening to your body. MS can also be exacerbated by stress and lead to life-changing decisions such as giving up work. People sometimes struggle to cope with the reactions of their friends and families. Our counselling service can offer you support.

MS-UK Counselling is a specialised service for people with MS. All our counsellors are BACP registered or accredited and have training in working with people with MS. Our sessions are delivered over the telephone so counselling is easily accessible to everyone. Please see www.ms-uk.org/counselling for further information.

Channel 4 to air Britain’s top super lawyer Mark Lewis, taking part in MS stem cell trial

Posted on: November 22 2017

mark-lewis-3.jpgMark Lewis is the famous lawyer who took down one of the world’s most powerful media moguls, Rupert Murdoch. The show, titled ‘The Search for a Miracle Cure’ is set to air on Thursday 23 November at 10pm.

Filmed over the course of a year with exclusive access, film makers follows the progress of high-profile media, libel and privacy lawyer Mark Lewis as he embarks on revolutionary stem cell trials for multiple sclerosis (MS).

At the age of 25 Mark was diagnosed with MS. There is currently no cure and over the last few years Mark’s condition has worsened.

Now 50, Mark first came to the public’s attention as the lawyer who represented Milly Dowler’s family, and more than 180 hacking victims in the News of the World phone hacking trial – a victory that was followed by the demise of the newspaper. However, stress worsens the symptoms of MS and Mark’s high-profile law career and battle with the tabloids has put his MS on fast forward.

mark-lewis-2.jpgThis summer, Mark began a journey into the unknown when he became Patient 31 of 48 in a revolutionary clinical trial, conducted at Hadassah University Medical Center in Jerusalem by Dr Karussis. The trial is working towards finding a way to halt MS in a bid to help Mark and the estimated 2.5 million people with MS worldwide. Its cutting edge science with huge promise and researchers hope findings could positively impact other neurological conditions such as Alzheimer’s and Parkinson’s disease, and for those who have survived stroke.

mark-lewis-1.jpgMark believes this journey to Jerusalem is his last chance as he says, ‘My life is like an egg timer that the sand’s dripping through and the sand’s nearly finished. I want the Doctors to turn it round for me as I know that if someone doesn’t flip it round, that sand is slipping out.’

 

Here at MS-UK we’re hopeful yet cautious when people talk of ‘miracle cures’. We’ve read the positive results published so far for this trial and will be sure to tune in to hear Mark’s experience. We would also love to hear your thoughts, simply email newpathways@ms-uk.org.

HSCT: One year on

Posted on: April 26 2017

As Samreena Kamran from Birmingham celebrates her one year anniversary since having HSCT treatment in London, she candidly reveals what life has been like since...

sameera-3.jpgThe moment I found out I had been accepted to have HSCT (Hematopoietic stem cell transplantation) treatment was surreal because I knew that things where about to finally change, even though I still didn’t fully understand what the treatment would involve. All I truly knew was that if I didn’t have chemotherapy I wasn’t going to find the cure I was looking for.

Now I’m one year on from having that treatment and I’m living my life. Since having it people have asked me, what are the negatives of having HSCT in the UK? To be honest I don’t think there were any negatives. I look at the whole experience as a positive and the only negative really is that no one can say for sure what date you might go in and actually start your treatment, they can only give you a rough idea. It’s all to do with the availability of beds. Things happen, they change and people who are more seriously ill take priority over you because although you have MS, it’s not a life threatening illness.

One of the most popular questions I’ve been asked is did my treatment go smoothly? Well the answer is probably not. I’m not known to do things smoothly. I became ill shortly after returning home and developed sepsis, for which I had to be hospitalised and treated. I just had to put my trust in the professionals.

I’m not going to lie, the last year has been tough. I was walking better with my crutches back in 2013 when I first discovered HSCT but I was told by my neurologist that it wasn’t for me. Because I waited two years before finding out more and perusing treatment, more damage was done. It does bother me that I’m still not walking, but my physio says nothing will ever be good enough for me, I guess I’m tough on myself. However, that’s also what keeps me going, I will walk. My physio gave me a picture of a quote, which sums up my situation right now. It says: ‘Strive for progress, not perfection’. When he gave it to me he said, we’ve just got you walking up the steps, give yourself time.

I’ve also been left with some stiffness and spasticity, which the professionals are treating for me. However, I do believe that this can hopefully be improved over time because the brain is able to rebuild its neurons. I’m using my mobility scooter a lot at the moment because I’m trying to give my body time to recover from the treatment and all of the drugs. I believe, as with anything else in life, there needs to be a positive mind-set, and that’s why I believe things will get better.

There have also been lots of good subtle improvements that have happened along the way, but the best thing is that my MRI scans now show no more disease activity or lesions. My MS is stable. It’s so nice to know and hear I’m not going to get any worse. I used to worry about my care and what home I would go into because I was declining so rapidly, and now that’s not going to happen. Now I can plan and live my life.

I would definitely recommend HSCT to anyone with MS. I think my situation and progress so far shows that the sooner you have this treatment the better.

To read more real life stories from other MS patients, download issue 96 and 102 of New Pathways magazine.

New Pathways is out now...and you can get a free trial pack!

Posted on: April 08 2016

And so it’s finally here – all warm and smelling of fresh print…

I talk, of course, of the new issue of New Pathways.

We thought long and hard about what to cover in this, our 96th, issue – but at the end of the day there really was only one topic to cover.

Stem cell treatments.

Since BBC’s Panorama programme lit the fuse and then ran away, we’ve been talking constantly about the subject. And not just in the MS-UK office – our Helpline teamhave been fielding questions as people try to find more information.

Well, that’s what we’ve given you.

With personal tales from three people who have intimate knowledge of the subject – being treated both at home and abroad – we have tried to give you as balanced and informed a view as we can.

We’ve also had to expand our letters pages to shoe-horn in all the comments and responses we had to the article about the BBC programme in the last issue.

It seems people were as happy as I was about the coverage.

With that in mind, I have been chasing the BBC for a comment about the programme and am assured it will be with me any day now.

If not sooner.

It’s a shame it couldn’t get to me before the magazine went to print, but hey – you can’t rush these things.

We’ve also decided to take another look at LDN (low dose naltrexone ).

Once the new treatment on the block, it seems to have been forgotten in recent times so we chat to the people who know what it is and those who have benefited from its use.

Want more?

Well of course!

Stephanie Millward has been busy training for Rio, Fleur’s got suggestions for convenient veg gardening and Charlie had to break out of hospital just to see his daughter’s band play.

It really is quite the issue.

But hey, don’t take my word for it – why not try it for yourself?

Email Abby@ms-uk.org and ask for a free trial pack and we’ll send you the latest issue. For free.

(Hopefully, you’ll like it enough to subscribe…)

Right, on with the next one.

Kahn

Editor, New Pathways

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