February 2012 Open door

Information service news New publication A new edition of At work with MS: managing life and work is now available. The book considers some of the ways in which MS might affect work, what adjustments can be made for a successful working life and the protection from discrimination under the Equality Act. The book also includes tips and advice from people with MS. The new edition encourages people to unpick the problems they are experiencing and develop action plans to tackle each issue.

Order your free copy from the MS Trust or read, order or download from www.mstrust.org.uk/pubs

Information Service We believe that people with MS should have the opportunity to be actively involved in the management of their condition. The Information Service can help you get the information you need to achieve this.

Our focus is on health information. Recently the most frequently asked questions have included information on new treatments such as fingolimod and fampridine, how to contact MS nurses around the country, questions from people recently diagnosed or still going through the diagnostic process, and issues to do with employment.

We will gather reliable, independent information to help you decide how to approach issues that concern you and to have informed discussions with your health professionals. If we are unable to find an answer ourselves, we will try to direct you to other people better able to help.

Inside this issue...

February 2012

Welcome to the first edition of Open Door in 2012

Multiple Sclerosis Trust Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 F 01462 476710 E info@mstrust.org.uk www.mstrust.org.uk Registered charity no. 1088353

16

www.mstrust.org.uk

6

Dating

8

“it takes just three words to tell someone they have MS and a lifetime for them to find out what that means.”

People with MS never forget what it was like when they received their diagnosis.

Some avoid the subject altogether, but many go away and try to find out everything they can. In the past there was very little available. Now you can press a few keys and get to 15 million references on a single Google search.

That is where we come in, translating all this information into something meaningful - whether that’s being on the end of the phone, on the web, here in our regular newsletter Open Door or in our publications.

Having good information to help you make the right decisions, at the beginning of a journey with MS is really important and we want to make sure that we are delivering what is needed at that time.

To do this, we need your help. If you have been diagnosed with MS in the last five years please have a look at our latest project on page 2. If you would like to help, do contact Ros. We look forward to hearing your views.

This copy of Open Door also contains our publications leaflet, which is a reminder of all that our information service currently offers. Please pass it on to anyone who may find it useful.

How a new drug is developed

12

MS Awareness Week - 30 April to 6 May - is an ideal opportunity to increase the understanding of MS. We have enclosed a poster of our plans for that week and we would be grateful if you could display it locally. Do contact us if you would like to get involved.

Thank you for all your support and very best wishes for 2012.

Also inside:

Publications The publication leaflet enclosed in this issue of Open Door gives information on the range of books, factsheets and DVDs available from the MS Trust.

All of these items can also be read, ordered or downloaded from www.mstrust.org.uk/pubs

Diet

Pam Macfarlane Chief Executive

Have you been diagnosed with MS in the last five years?

Newly diagnosed research

2

News

3

Research news

4

Writing

10

We are looking for your help.

Fundraising

14

See page 2

Info service

16

www.mstrust.org.uk

Freephone: 0800 032 3839

I didn't even know to ask

News

Meeting the information needs of people with MS

Have you been diagnosed with MS in the last five years?

We are looking for your help.

MS Trust conference

NICE appraisal of fingolimod

The MS Trust’s Annual Conference took place in Warwickshire in November.

A diagnosis of MS will almost always prompt many questions about the future and how the condition will affect everyday life. Access to clear and accurate information is important for everyone, but people are individuals, and they differ in the kinds of information they need, where they get it and what form the information takes. While knowing about multiple sclerosis and its treatment is crucially important, many people may also want to know more than just the medical facts. Family and friends will have their own information needs too.

The information needed may change as the condition does and may differ according to the type of MS.

The conference is the largest event in the UK for health professionals working with people with MS and attracted over 300 nurses, therapists and allied health professionals.

Running education events such as the conference is a vital part of the work of the MS Trust to improve services for people with MS.

In December, NICE issued a second draft recommendation that fingolimod (Gilenya) should not be made available on the NHS.

The MS Trust is starting a new project focussing on people who are newly diagnosed with MS that’s about 2,500 people each year. To get the project started, we have commissioned a team of three independent and experienced researchers, Ros Levenson, Mercy Jeyasingham and Sarah Smith, to help us better understand the information needs and preferences of people who are newly diagnosed with MS.

To help with our research we are looking for people affected by MS - those who have been diagnosed with MS in the past five years and also their families, friends and carers.

There are a number of ways for you to take part: ■ telephone interviews ■ group discussions, as sharing views often sparks off new ideas ■ face to face interviews If you would like to be involved, we would like to hear from you. We will send you more information about the project and details of how you can take part. To make sure we are including as wide a range of people as possible, we will also ask you to tell us a little bit about yourself (for example, your age and gender and the type of MS that you have). All personal information will be kept confidential.

If you would like to find out more, please contact Ros Levenson by 2 March on 0208 989 0607 or ros@roslevenson.demon.co.uk for more information.

The programme featured an array of high quality presentations, posters and seminars covering topics as diverse as cognition, palliative care, complex nutritional needs and dizziness. The conference also allowed people from all over the country to share thoughts, ideas and experiences that can help them improve the services they provide.

Speakers included Professor Helen Tremlett, from University of British Columbia Hospital, who presented an overview of a study that has followed people with MS since the 1980s and which provides valuable information about how the condition develops over time.

Dr Eli Silber of King’s College Hospital in London looked at advances in potential therapies for relapsing MS, the need to balance clinical benefit with potential risks and where emerging drugs would fit in with current treatments. He also discussed the current lack of treatments for progressive MS. Professor David Miller (pictured) from the Institute of Neurology in London discussed the advances in diagnosing MS and how developments in MRI are producing more detailed scans, which may provide faster and more accurate diagnosis.

picture: Aaron Hockley

2

www.mstrust.org.uk

In the closing session, Sarah Joiner, patron of the MS Trust, gave an insightful account of her 30 years experience of living with MS, touching on the insensitivity of her diagnosis, the need for people to fight for what they need so they can stay in work and her admiration for the practical support and advice provided by MS nurses and therapists.

Following consultation on the original draft recommendation, issued in August 2011, NICE had been working with Novartis, the manufacturer of fingolimod, to develop a patient access scheme that would make the drug more cost effective.

Consultation on the second draft recommendation closed in January. NICE will be meeting again in February with a final decision expected in April.

Watch the MS Trust website for news.

Fingolimod is licensed for people experiencing more than one relapse a year or for whom treatment with the existing disease modifying drugs has not been effective.

Clinical need not cost Evidence has been appearing that some NHS bodies have restricted access to disease modifying drugs or switched treatment on cost grounds. To counter this, in December the Department of Health published a letter reminding NHS bodies of their continuing obligation under the Risk-sharing Scheme to provide treatment to eligible people with MS. Any decision to stop or alter treatment can only be based on clinical reasons, not on the cost of the treatments to the NHS. The Risk-sharing Scheme was set up in 2002 to make the drugs - beta interferon (Avonex, Betaferon, Rebif) and glatiramer acetate (Copaxone) - available on the NHS to people who meet the prescribing criteria. The three disease modifying drugs licensed since 2002 natalizumab (Tysabri), beta interferon 1b (Extavia) and fingolimod (Gilenya) - are not covered by the Scheme.

MS Trust publications ■ Disease modifying drug therapies ■ Fingolimod (Gilenya) factsheet Order from the address on the back page or visit www.mstrust.org.uk/pubs

Freephone: 0800 032 3839

3

I didn't even know to ask

News

Meeting the information needs of people with MS

Have you been diagnosed with MS in the last five years?

We are looking for your help.

MS Trust conference

NICE appraisal of fingolimod

The MS Trust’s Annual Conference took place in Warwickshire in November.

A diagnosis of MS will almost always prompt many questions about the future and how the condition will affect everyday life. Access to clear and accurate information is important for everyone, but people are individuals, and they differ in the kinds of information they need, where they get it and what form the information takes. While knowing about multiple sclerosis and its treatment is crucially important, many people may also want to know more than just the medical facts. Family and friends will have their own information needs too.

The information needed may change as the condition does and may differ according to the type of MS.

The conference is the largest event in the UK for health professionals working with people with MS and attracted over 300 nurses, therapists and allied health professionals.

Running education events such as the conference is a vital part of the work of the MS Trust to improve services for people with MS.

In December, NICE issued a second draft recommendation that fingolimod (Gilenya) should not be made available on the NHS.

The MS Trust is starting a new project focussing on people who are newly diagnosed with MS that’s about 2,500 people each year. To get the project started, we have commissioned a team of three independent and experienced researchers, Ros Levenson, Mercy Jeyasingham and Sarah Smith, to help us better understand the information needs and preferences of people who are newly diagnosed with MS.

To help with our research we are looking for people affected by MS - those who have been diagnosed with MS in the past five years and also their families, friends and carers.

There are a number of ways for you to take part: ■ telephone interviews ■ group discussions, as sharing views often sparks off new ideas ■ face to face interviews If you would like to be involved, we would like to hear from you. We will send you more information about the project and details of how you can take part. To make sure we are including as wide a range of people as possible, we will also ask you to tell us a little bit about yourself (for example, your age and gender and the type of MS that you have). All personal information will be kept confidential.

If you would like to find out more, please contact Ros Levenson by 2 March on 0208 989 0607 or ros@roslevenson.demon.co.uk for more information.

The programme featured an array of high quality presentations, posters and seminars covering topics as diverse as cognition, palliative care, complex nutritional needs and dizziness. The conference also allowed people from all over the country to share thoughts, ideas and experiences that can help them improve the services they provide.

Speakers included Professor Helen Tremlett, from University of British Columbia Hospital, who presented an overview of a study that has followed people with MS since the 1980s and which provides valuable information about how the condition develops over time.

Dr Eli Silber of King’s College Hospital in London looked at advances in potential therapies for relapsing MS, the need to balance clinical benefit with potential risks and where emerging drugs would fit in with current treatments. He also discussed the current lack of treatments for progressive MS. Professor David Miller (pictured) from the Institute of Neurology in London discussed the advances in diagnosing MS and how developments in MRI are producing more detailed scans, which may provide faster and more accurate diagnosis.

picture: Aaron Hockley

2

www.mstrust.org.uk

In the closing session, Sarah Joiner, patron of the MS Trust, gave an insightful account of her 30 years experience of living with MS, touching on the insensitivity of her diagnosis, the need for people to fight for what they need so they can stay in work and her admiration for the practical support and advice provided by MS nurses and therapists.

Following consultation on the original draft recommendation, issued in August 2011, NICE had been working with Novartis, the manufacturer of fingolimod, to develop a patient access scheme that would make the drug more cost effective.

Consultation on the second draft recommendation closed in January. NICE will be meeting again in February with a final decision expected in April.

Watch the MS Trust website for news.

Fingolimod is licensed for people experiencing more than one relapse a year or for whom treatment with the existing disease modifying drugs has not been effective.

Clinical need not cost Evidence has been appearing that some NHS bodies have restricted access to disease modifying drugs or switched treatment on cost grounds. To counter this, in December the Department of Health published a letter reminding NHS bodies of their continuing obligation under the Risk-sharing Scheme to provide treatment to eligible people with MS. Any decision to stop or alter treatment can only be based on clinical reasons, not on the cost of the treatments to the NHS. The Risk-sharing Scheme was set up in 2002 to make the drugs - beta interferon (Avonex, Betaferon, Rebif) and glatiramer acetate (Copaxone) - available on the NHS to people who meet the prescribing criteria. The three disease modifying drugs licensed since 2002 natalizumab (Tysabri), beta interferon 1b (Extavia) and fingolimod (Gilenya) - are not covered by the Scheme.

MS Trust publications ■ Disease modifying drug therapies ■ Fingolimod (Gilenya) factsheet Order from the address on the back page or visit www.mstrust.org.uk/pubs

Freephone: 0800 032 3839

3

Sense of smell can be affected

Research news

This project looked at whether sense of smell was affected and also whether it was more or less affected in people with different types of MS. 153 people with MS and 165 healthy controls took a multiple choice ‘scratch and sniff’ test. They were given one test strip at a time to scratch with a pencil. For each one, they were asked to identify the smell from a list of four.

Promising new treatments on the horizon A number of phase III clinical trials reported results in October 2011 at ECTRIMS, an important international meeting held in Amsterdam. Some of the most promising are reported here.

Teriflunomide (Aubagio) Teriflunomide is an oral disease modifying treatment.

The TEMSO trial tested two different doses in 1,088 people with relapsing forms of MS over two years compared with placebo. Participants were 18-55 years of age, with an Expanded Disability Status Scale (EDSS) of 5.5 or less, and had at least one relapse in the previous year or at least two relapses in the preceding two years.

Teriflunomide significantly reduced relapse rates on the lower dose (36%) and the higher dose (59%) and slowed disability progression (at the higher dose). MRI evidence of disease activity was also reduced.

Participants in an earlier small trial had taken teriflunomide for up to nine years. Disease activity remained low and the drug was well tolerated.

A new phase III study, TOPIC, is already underway to test teriflunomide in early MS or CIS (clinically isolated syndrome). Teriflunomide is also being tested as an add-on to beta interferon therapy in the TERACLES trial to see whether both drugs taken together have more effect than either does on its own.

The licensing process for Europe should begin in the first quarter of 2012.

O’Connor P, et al.

Randomized trial of oral teriflunomide for relapsing multiple sclerosis.

Teriflunomide and BG-12 are both taken by mouth so they would be easier than injecting for many people. If applications for licensing are approved and the drugs can be funded by the NHS, they will provide extra options for people with relapsing remitting MS. The MS Trust book Disease modifying drug therapy can help people decide which of the currently available drug therapies is best for them.

A new edition will be available in 2012.

It will also be available to download or read online.

Botox for tremor A small placebo-controlled study with 25 people looked at the effect of botulinum toxin A (Botox) on tremor after injections into the affected arm muscles.

About three quarters of participants had secondary progressive MS. On average, they had experienced MS symptoms for 17 years and tremors for six years.

The amount of tremor was tested at the beginning of the study and then six and 12 weeks after the injections. Botox treatment allowed many people to perform activities, such as writing and drinking from open cups, which the tremors had made difficult or impossible previously.

The main side effect was weakness in the injected arm but this did not last long.

Tremor is the name given to rhythmical involuntary movement (shakes) during purposeful movements such as reaching forward to pick up a cup.

The New England Journal of Medicine 2011;365(14):1293-1303.

BG-12 (Panaclar) BG-12, also known as dimethyl fumarate, is another oral disease modifying treatment. Data from the DEFINE trial of 1,237 people with relapsing remitting MS showed that the drug reduced the risk of relapse compared with placebo by 49% in people who took the drug twice a day and 50% in people who took it three times a day.

4

MRI scans showed that, after two years, people receiving BG-12 had significantly fewer brain lesions compared with placebo. Side effects were generally minor and included flushing, headache, diarrhoea and fatigue.

An article in the November 2011 edition of Open Door, available at www.mstrust.org.uk/opendoor, suggested helpful ways to deal with tremor and also orthoses (appliances) that are available to help with tremor now. Botox may be a treatment in the future if research on a larger number of people is also successful.

www.mstrust.org.uk

About 3% of healthy people and 3% of people with relapsing remitting MS had difficulty identifying the smells. This compared with about 12% of people with primary progressive MS and 69% of people with secondary progressive MS. The difference still existed after taking into account other factors such as cognitive difficulties and was not related to how long someone had MS or how severely they were affected.

Silva AM, et al.

Olfactory dysfunction in multiple sclerosis: association with secondary progression.

Multiple Sclerosis Journal 2011 Oct 21. [Epub ahead of print]

If the sense of smell is affected, this can affect other aspects of life, for example, food is less attractive if you cannot smell it and this can lead to weight loss.

Ability to walk and feelings of fatigue vary over the day Many people with MS feel more exhausted in the afternoon and evening than in the morning.

This research compared the ability of someone to walk, using standard tests over six minutes or over ten metres, in the morning, at midday and in the afternoon. They found that there was no difference in the ability to walk at these different times of day.

However, the participants reported feeling more tired at midday and in the afternoon than they did in the morning.

This was not related to how much their MS affected their ability to walk as measured by their EDSS score.

The researchers concluded that the ability to walk does not change over the day but the feelings of fatigue do change.

Feys P, et al.

Effect of time of day on walking capacity and self-reported fatigue in persons with multiple sclerosis: a multi-center trial.

Multiple Sclerosis Journal 2011 Oct 3. [Epub ahead of print]

Fatigue is one of the commonest symptoms of MS and can have a major impact on people’s lives.

MS fatigue cannot be worked through and other MS symptoms, especially difficulties with memory and concentration, may get worse when someone is fatigued. As an ‘invisible’ symptom of MS, fatigue is sometimes misunderstood.

The MS Trust book Living with fatigue can help you understand and manage fatigue.

Flu vaccines do not make MS worse This study looked at whether vaccination against the flu virus (either the seasonal virus or the H1N1 ‘swine flu’ virus) was safe.

picture: El Alvi

Only five out of 49 people reported side effects from the vaccine, such as fever or flu-like symptoms, and no-one needed hospitalisation. Nobody developed new neurological symptoms. The researchers concluded that people with MS and their health professionals should be reassured that vaccination against flu is safe.

Auriel E, et al.

Seasonal and H1N1v influenza vaccines in MS: safety and compliance.

Journal of the Neurological Sciences 2011 Nov 4. [Epub ahead of print]

As infection with a virus can make MS symptoms worse, people with MS are included in the list of those eligible for the annual flu vaccination. The NICE Guideline states that there is no reason why people with MS should not have all the required vaccinations both in the UK and for travelling abroad. They believe that it is better to be protected than run the risk of contracting the diseases, many of which are serious and life threatening.

Exceptions are: ■ People who are experiencing a debilitating relapse.

■ People on therapies that suppress the immune system, such as mitoxantrone, azathioprine, methotrexate, cyclophosphamide or steroids.

It is important that your doctor is aware of all the medications that you are taking when discussing possible vaccination.

MS Trust publications ■ Disease modifying drug therapies ■ Living with fatigue Order from the address on the back page or visit www.mstrust.org.uk/pubs Back issues of Open Door can be read at www.mstrust.org.uk/opendoor

Freephone: 0800 032 3839

5

Sense of smell can be affected

Research news

This project looked at whether sense of smell was affected and also whether it was more or less affected in people with different types of MS. 153 people with MS and 165 healthy controls took a multiple choice ‘scratch and sniff’ test. They were given one test strip at a time to scratch with a pencil. For each one, they were asked to identify the smell from a list of four.

Promising new treatments on the horizon A number of phase III clinical trials reported results in October 2011 at ECTRIMS, an important international meeting held in Amsterdam. Some of the most promising are reported here.

Teriflunomide (Aubagio) Teriflunomide is an oral disease modifying treatment.

The TEMSO trial tested two different doses in 1,088 people with relapsing forms of MS over two years compared with placebo. Participants were 18-55 years of age, with an Expanded Disability Status Scale (EDSS) of 5.5 or less, and had at least one relapse in the previous year or at least two relapses in the preceding two years.

Teriflunomide significantly reduced relapse rates on the lower dose (36%) and the higher dose (59%) and slowed disability progression (at the higher dose). MRI evidence of disease activity was also reduced.

Participants in an earlier small trial had taken teriflunomide for up to nine years. Disease activity remained low and the drug was well tolerated.

A new phase III study, TOPIC, is already underway to test teriflunomide in early MS or CIS (clinically isolated syndrome). Teriflunomide is also being tested as an add-on to beta interferon therapy in the TERACLES trial to see whether both drugs taken together have more effect than either does on its own.

The licensing process for Europe should begin in the first quarter of 2012.

O’Connor P, et al.

Randomized trial of oral teriflunomide for relapsing multiple sclerosis.

Teriflunomide and BG-12 are both taken by mouth so they would be easier than injecting for many people. If applications for licensing are approved and the drugs can be funded by the NHS, they will provide extra options for people with relapsing remitting MS. The MS Trust book Disease modifying drug therapy can help people decide which of the currently available drug therapies is best for them.

A new edition will be available in 2012.

It will also be available to download or read online.

Botox for tremor A small placebo-controlled study with 25 people looked at the effect of botulinum toxin A (Botox) on tremor after injections into the affected arm muscles.

About three quarters of participants had secondary progressive MS. On average, they had experienced MS symptoms for 17 years and tremors for six years.

The amount of tremor was tested at the beginning of the study and then six and 12 weeks after the injections. Botox treatment allowed many people to perform activities, such as writing and drinking from open cups, which the tremors had made difficult or impossible previously.

The main side effect was weakness in the injected arm but this did not last long.

Tremor is the name given to rhythmical involuntary movement (shakes) during purposeful movements such as reaching forward to pick up a cup.

The New England Journal of Medicine 2011;365(14):1293-1303.

BG-12 (Panaclar) BG-12, also known as dimethyl fumarate, is another oral disease modifying treatment. Data from the DEFINE trial of 1,237 people with relapsing remitting MS showed that the drug reduced the risk of relapse compared with placebo by 49% in people who took the drug twice a day and 50% in people who took it three times a day.

4

MRI scans showed that, after two years, people receiving BG-12 had significantly fewer brain lesions compared with placebo. Side effects were generally minor and included flushing, headache, diarrhoea and fatigue.

An article in the November 2011 edition of Open Door, available at www.mstrust.org.uk/opendoor, suggested helpful ways to deal with tremor and also orthoses (appliances) that are available to help with tremor now. Botox may be a treatment in the future if research on a larger number of people is also successful.

www.mstrust.org.uk

About 3% of healthy people and 3% of people with relapsing remitting MS had difficulty identifying the smells. This compared with about 12% of people with primary progressive MS and 69% of people with secondary progressive MS. The difference still existed after taking into account other factors such as cognitive difficulties and was not related to how long someone had MS or how severely they were affected.

Silva AM, et al.

Olfactory dysfunction in multiple sclerosis: association with secondary progression.

Multiple Sclerosis Journal 2011 Oct 21. [Epub ahead of print]

If the sense of smell is affected, this can affect other aspects of life, for example, food is less attractive if you cannot smell it and this can lead to weight loss.

Ability to walk and feelings of fatigue vary over the day Many people with MS feel more exhausted in the afternoon and evening than in the morning.

This research compared the ability of someone to walk, using standard tests over six minutes or over ten metres, in the morning, at midday and in the afternoon. They found that there was no difference in the ability to walk at these different times of day.

However, the participants reported feeling more tired at midday and in the afternoon than they did in the morning.

This was not related to how much their MS affected their ability to walk as measured by their EDSS score.

The researchers concluded that the ability to walk does not change over the day but the feelings of fatigue do change.

Feys P, et al.

Effect of time of day on walking capacity and self-reported fatigue in persons with multiple sclerosis: a multi-center trial.

Multiple Sclerosis Journal 2011 Oct 3. [Epub ahead of print]

Fatigue is one of the commonest symptoms of MS and can have a major impact on people’s lives.

MS fatigue cannot be worked through and other MS symptoms, especially difficulties with memory and concentration, may get worse when someone is fatigued. As an ‘invisible’ symptom of MS, fatigue is sometimes misunderstood.

The MS Trust book Living with fatigue can help you understand and manage fatigue.

Flu vaccines do not make MS worse This study looked at whether vaccination against the flu virus (either the seasonal virus or the H1N1 ‘swine flu’ virus) was safe.

picture: El Alvi

Only five out of 49 people reported side effects from the vaccine, such as fever or flu-like symptoms, and no-one needed hospitalisation. Nobody developed new neurological symptoms. The researchers concluded that people with MS and their health professionals should be reassured that vaccination against flu is safe.

Auriel E, et al.

Seasonal and H1N1v influenza vaccines in MS: safety and compliance.

Journal of the Neurological Sciences 2011 Nov 4. [Epub ahead of print]

As infection with a virus can make MS symptoms worse, people with MS are included in the list of those eligible for the annual flu vaccination. The NICE Guideline states that there is no reason why people with MS should not have all the required vaccinations both in the UK and for travelling abroad. They believe that it is better to be protected than run the risk of contracting the diseases, many of which are serious and life threatening.

Exceptions are: ■ People who are experiencing a debilitating relapse.

■ People on therapies that suppress the immune system, such as mitoxantrone, azathioprine, methotrexate, cyclophosphamide or steroids.

It is important that your doctor is aware of all the medications that you are taking when discussing possible vaccination.

MS Trust publications ■ Disease modifying drug therapies ■ Living with fatigue Order from the address on the back page or visit www.mstrust.org.uk/pubs Back issues of Open Door can be read at www.mstrust.org.uk/opendoor

Freephone: 0800 032 3839

5

picture: Chris Phillips

Your food, your diet

Should we take a fresh approach?

Anne Payne, dietitian, Plymouth University The past ten years have seen many papers published that support 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.

The influence of nutrition on both the risk and progression of MS Vitamin D There has been an explosion of interest in the role of vitamin D in the last ten years. Despite its name, vitamin D is actually a hormone that performs many roles in the body. We have long known that it acts together with calcium to keep bones healthy and we now know that it is also involved in the regulation of T cell-mediated immunity, hence a possible reason why it may influence autoimmune conditions such as MS.

picture: Joan Nova

The risk of MS is greater in higher latitudes with less sunshine than closer to the equator. Many theories have been considered to explain this, including the role of vitamin D. While an active form of vitamin D can be obtained in small amounts from the diet, most of us rely on the conversion of vitamin D, from an inactive to an active form, by the action of sunlight on our skin. This requires only 15-20 minutes exposure on our hands and face on most days during the summer months.

Research suggests that low circulating levels of vitamin D in the population may increase risk of MS. This is particularly associated with low levels of vitamin D in pregnant women and an increased risk of MS in their children. This suggests that vitamin D supplements for young women may be an effective future strategy to reduce risk of MS, but this is still very much a subject of on-going research1.

Low levels of vitamin D have repeatedly been shown in studies of people with MS and supplementation is an intriguing topic of research.

At present there is no consensus on whether vitamin D would be an effective treatment to reduce the rate or severity of MS relapses and caution is advised in the use of cod liver oil as it can adversely interact with other medications. While the Cochrane Collaboration - an independent body that reviews the published research about drugs and treatments - has advised that there is inadequate evidence to support use2, NICE (the National Institute for Health and Clinical Excellence) is soon to begin updating its clinical guidance on MS and will undoubtedly consider any new evidence on the role of vitamin D.

Dietary fat and type of fat There is still debate on whether dietary fat influences both the risk of developing MS in the first place and the rate and severity of relapses once it is established. The interpretation of nutritional research is very complicated. Research on fat intake may be confounded by other nutrients in the diet or other environmental variants. Changing one nutrient in a diet always causes parallel changes in other nutrient levels and that could affect results.

6

www.mstrust.org.uk

People who adhere to a very low fat diet in longterm studies may also be different in their disease pattern from those who don’t manage to cope with a strict regime. They may also differ in their health choices, such as whether they take vitamin supplements. While many scientists and many people with MS do believe that there is good evidence to show that people with MS would benefit from a diet low in animal fat, there are just as many who feel that this is not proven. The jury remains out and unfortunately as this type of research is very difficult to do, we are unlikely to resolve this for a very long time.

Studies suggest that over 50% of people with relapsing remitting MS are overweight or obese, which is similar to levels in most populations3. The majority of people with MS would therefore benefit from a low fat diet, using small amounts of vegetable oils in preference to animal fats to reduce the risk of obesity and heart disease, especially if activity levels are also low.

Where weight loss is a problem, an appropriate choice of food with a higher fat content needs to be included in the diet and guidance from a dietitian may be helpful.

The use of supplements of omega-3 (eg fish oil) and omega-6 (eg linoleic acid from sources such as sunflower and safflower oil) has remained popular over the past decade. While a re-evaluation of earlier research by NICE in 2003 encouraged their use4, a Cochrane review of 2007 concluded that there was presently no evidence of benefit5. Both omega-3 oils and omega-6 oils influence the inflammatory response in MS in complex ways that remain poorly understood, so further research in this field would be very welcome.

The dietary intake of people with MS A number of relatively small studies have examined dietary intake in MS. Around 60% of subjects reported taking fish oil supplements and similar proportion took multivitamins3,6,7. People were taking a wide variety of vitamin and herbal supplements, such as cranberry juice, ginkgo biloba, ginseng, St John’s wort, evening primrose oil and valerian.

restricted menu patterns. Although individuals can choose their preferred diet, to date there is no credible research to support the use of any of these regimes, though this of course may change in future years.

Dietary advice So where does this leave us regarding dietary advice for people with MS? In essence our approach today remains that of encouraging healthy eating principles: a varied diet based on lean meats, wholegrain cereals and low fat dairy products with a good variety of fresh fruit and vegetables. Eating should be a pleasure, so enjoy your food. It’s your food, your diet and your choice.

There is better awareness today among health professionals that people with MS care about their diet and use food choice as a self-management tool.

As such, diet should be recognised as an important part of holistic care and it would be ideal if everyone had the support to identify a personal nutrition care plan. Evidence suggests that this remains a luxury for most. To address this we really need to continue to work towards providing evidence, through further research, that diet therapy has a positive influence on well-being in MS. References 1.

Pierrot-Deseilligny C, Souberbielle J-C. Is hypovitaminosis D one of the environmental risk factors for MS. Brain 2010;133(7):1869-1888.

2.

Jagannath VA, et al. Vitamin D for the management of multiple sclerosis.

Cochrane Database of Systematic Reviews, 2010;12:CD008422.

3.

Goodman S, Gulick EE. Dietary practices of people with multiple sclerosis.

International Journal of MS Care 2008;10(2);47-57.

4.

National Institute for Clinical Excellence. Multiple sclerosis - Management of multiple sclerosis in primary and secondary care. NICE Clinical Guideline 8.

London:NICE;2003.

5.

Farinotti M, et al. Dietary interventions for multiple sclerosis. Cochrane Database of Systematic Reviews 2007;1:CD004192.

6.

Leong EM, et al. Complementary and alternative medicine and dietary interventions in multiple sclerosis: what is being used in South Australia and why?

Complementary Therapies in Medicine 2009;17(4):216-223.

7.

Bennewith H, et al. Supplement use and comparative differences in nutritional status amongst patients with multiple sclerosis. Proceedings of the Nutrition Society 2006:65:52A.

8.

Anastasi J, et al. Herbal supplements: talking with your patients. Journal for Nurse Practitioners 2011;7(1):29-35.

There is a growing concern for the risks associated with taking multiple preparations, especially if taken together with prescribed medication. Herbal supplements such as ginkgo biloba, St John’s wort and ginseng are known to interact with common medications and may reduce their effectiveness or worsen side effects8. It’s important that you let your doctor know of any vitamin or herbal preparation you take.

picture: Phillip Winn

A scan of the internet shows an array of special MS diets that usually involve taking a wide range of dietary supplements to compensate for very

Freephone: 0800 032 3839

7

picture: Chris Phillips

Your food, your diet

Should we take a fresh approach?

Anne Payne, dietitian, Plymouth University The past ten years have seen many papers published that support 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.

The influence of nutrition on both the risk and progression of MS Vitamin D There has been an explosion of interest in the role of vitamin D in the last ten years. Despite its name, vitamin D is actually a hormone that performs many roles in the body. We have long known that it acts together with calcium to keep bones healthy and we now know that it is also involved in the regulation of T cell-mediated immunity, hence a possible reason why it may influence autoimmune conditions such as MS.

picture: Joan Nova

The risk of MS is greater in higher latitudes with less sunshine than closer to the equator. Many theories have been considered to explain this, including the role of vitamin D. While an active form of vitamin D can be obtained in small amounts from the diet, most of us rely on the conversion of vitamin D, from an inactive to an active form, by the action of sunlight on our skin. This requires only 15-20 minutes exposure on our hands and face on most days during the summer months.

Research suggests that low circulating levels of vitamin D in the population may increase risk of MS. This is particularly associated with low levels of vitamin D in pregnant women and an increased risk of MS in their children. This suggests that vitamin D supplements for young women may be an effective future strategy to reduce risk of MS, but this is still very much a subject of on-going research1.

Low levels of vitamin D have repeatedly been shown in studies of people with MS and supplementation is an intriguing topic of research.

At present there is no consensus on whether vitamin D would be an effective treatment to reduce the rate or severity of MS relapses and caution is advised in the use of cod liver oil as it can adversely interact with other medications. While the Cochrane Collaboration - an independent body that reviews the published research about drugs and treatments - has advised that there is inadequate evidence to support use2, NICE (the National Institute for Health and Clinical Excellence) is soon to begin updating its clinical guidance on MS and will undoubtedly consider any new evidence on the role of vitamin D.

Dietary fat and type of fat There is still debate on whether dietary fat influences both the risk of developing MS in the first place and the rate and severity of relapses once it is established. The interpretation of nutritional research is very complicated. Research on fat intake may be confounded by other nutrients in the diet or other environmental variants. Changing one nutrient in a diet always causes parallel changes in other nutrient levels and that could affect results.

6

www.mstrust.org.uk

People who adhere to a very low fat diet in longterm studies may also be different in their disease pattern from those who don’t manage to cope with a strict regime. They may also differ in their health choices, such as whether they take vitamin supplements. While many scientists and many people with MS do believe that there is good evidence to show that people with MS would benefit from a diet low in animal fat, there are just as many who feel that this is not proven. The jury remains out and unfortunately as this type of research is very difficult to do, we are unlikely to resolve this for a very long time.

Studies suggest that over 50% of people with relapsing remitting MS are overweight or obese, which is similar to levels in most populations3. The majority of people with MS would therefore benefit from a low fat diet, using small amounts of vegetable oils in preference to animal fats to reduce the risk of obesity and heart disease, especially if activity levels are also low.

Where weight loss is a problem, an appropriate choice of food with a higher fat content needs to be included in the diet and guidance from a dietitian may be helpful.

The use of supplements of omega-3 (eg fish oil) and omega-6 (eg linoleic acid from sources such as sunflower and safflower oil) has remained popular over the past decade. While a re-evaluation of earlier research by NICE in 2003 encouraged their use4, a Cochrane review of 2007 concluded that there was presently no evidence of benefit5. Both omega-3 oils and omega-6 oils influence the inflammatory response in MS in complex ways that remain poorly understood, so further research in this field would be very welcome.

The dietary intake of people with MS A number of relatively small studies have examined dietary intake in MS. Around 60% of subjects reported taking fish oil supplements and similar proportion took multivitamins3,6,7. People were taking a wide variety of vitamin and herbal supplements, such as cranberry juice, ginkgo biloba, ginseng, St John’s wort, evening primrose oil and valerian.

restricted menu patterns. Although individuals can choose their preferred diet, to date there is no credible research to support the use of any of these regimes, though this of course may change in future years.

Dietary advice So where does this leave us regarding dietary advice for people with MS? In essence our approach today remains that of encouraging healthy eating principles: a varied diet based on lean meats, wholegrain cereals and low fat dairy products with a good variety of fresh fruit and vegetables. Eating should be a pleasure, so enjoy your food. It’s your food, your diet and your choice.

There is better awareness today among health professionals that people with MS care about their diet and use food choice as a self-management tool.

As such, diet should be recognised as an important part of holistic care and it would be ideal if everyone had the support to identify a personal nutrition care plan. Evidence suggests that this remains a luxury for most. To address this we really need to continue to work towards providing evidence, through further research, that diet therapy has a positive influence on well-being in MS. References 1.

Pierrot-Deseilligny C, Souberbielle J-C. Is hypovitaminosis D one of the environmental risk factors for MS. Brain 2010;133(7):1869-1888.

2.

Jagannath VA, et al. Vitamin D for the management of multiple sclerosis.

Cochrane Database of Systematic Reviews, 2010;12:CD008422.

3.

Goodman S, Gulick EE. Dietary practices of people with multiple sclerosis.

International Journal of MS Care 2008;10(2);47-57.

4.

National Institute for Clinical Excellence. Multiple sclerosis - Management of multiple sclerosis in primary and secondary care. NICE Clinical Guideline 8.

London:NICE;2003.

5.

Farinotti M, et al. Dietary interventions for multiple sclerosis. Cochrane Database of Systematic Reviews 2007;1:CD004192.

6.

Leong EM, et al. Complementary and alternative medicine and dietary interventions in multiple sclerosis: what is being used in South Australia and why?

Complementary Therapies in Medicine 2009;17(4):216-223.

7.

Bennewith H, et al. Supplement use and comparative differences in nutritional status amongst patients with multiple sclerosis. Proceedings of the Nutrition Society 2006:65:52A.

8.

Anastasi J, et al. Herbal supplements: talking with your patients. Journal for Nurse Practitioners 2011;7(1):29-35.

There is a growing concern for the risks associated with taking multiple preparations, especially if taken together with prescribed medication. Herbal supplements such as ginkgo biloba, St John’s wort and ginseng are known to interact with common medications and may reduce their effectiveness or worsen side effects8. It’s important that you let your doctor know of any vitamin or herbal preparation you take.

picture: Phillip Winn

A scan of the internet shows an array of special MS diets that usually involve taking a wide range of dietary supplements to compensate for very

Freephone: 0800 032 3839

7

picture: Caro Wallis

Dating

mention MS in the personal information. I posed the question on Twitter and got a mixed reaction, as expected. Some MSers felt being honest was necessary and others thought leaving it out initially was wise, but be upfront about it later. I decided the latter would be my approach but did say I am in a wheelchair, and included an arty picture of it. After all, I have other qualities that I’m sure will appeal to other people - I am me, not a consequence of MS of course.

picture: Suze

For enabledalready, there were a few straight forward questions and a photograph.

Kevin Ward (@kevbevw) An interesting conversation started on Twitter. How do disabled folks date? The big question was about how to appeal to a potential partner. This article looks to shed some light on the options.

This leads me to dating sites. There are numerous sites available now. Some are free whilst others you have to pay a subscription. Or do you go with a disabled website?

I have secondary progressive MS. 2010 saw me turn 40, my marriage end, divorce and give up working.

My life is very different to what it used to be and there’s no escaping the fact I have MS.

Which? did a review of dating websites (www.tinyurl.com/which-online-dating), which includes prices of the subscription (at the time of their review). I decided to try both a pay-for dating website (www.eharmony.co.uk) and pay-for disabled site (www.enabledalready.com - this site has subsequently closed following the retirement of the owners, but www.whispers4u.co.uk is similar).

I went for a paid subscription as I wanted to be taken seriously. Mind you, my expectations for both were still low.

The two points of view were ■ It’s all about who you are. MS shouldn’t detract a potential partner from wanting to get to know the real you.

■ There’s no getting away from MS. The real you is shrouded by visual cues, such as my wheelchair, let alone the hidden symptoms. With the greatest will in the world, finding someone who is prepared to get to know you with all your symptoms sounds a big ask.

So, you find yourself single...

I thought about ‘getting out there’, such as going to pubs. I decided this was impractical due to fatigue and simply getting around in a manual wheelchair (that energy pot will only go so far).

Both sites are free to register. For eHarmony that means assessing yourself, answering personal questions and how you want to appear to others, including uploading a photograph or two. I liked their approach as it forced me, for once in my life, to stop and think about what I wanted in a relationship. The big question was whether to

Socialising with friends and meeting others at work is a great option if these are realistic for you. I met my previous partner at work but having stopped working, I would have to think of other ways. The majority of my friends aren’t local to me so this was also unrealistic.

I’m not afraid to ask ladies out. Last year saw me ask a young lady at the local therapy centre out and a support worker. Neither worked out but it did wonders for self belief and confidence.

There are personal ad columns in papers and magazines. I discounted these straight away as they feel very ‘yesterday’. With the growth of the internet and the online community, there are online personal ads (such as www.lovecity.com, www.ad-mart.co.uk/personals/).

I felt these weren’t ‘me’ so avoided them.

As I mentioned, Twitter is XhyraGraf a great way to meet other picture: people online.

8

www.mstrust.org.uk

picture: epSos.de

For both, ‘browsing’ is free. However, a subscription is needed to start talking to anyone. I’m used to the online community so talking to complete strangers whilst odd - is second nature to me these days. You do have to be ready for radio silence though so a thick skin is essential.

Enabledalready was a much smaller website with fewer users. I chatted to several ladies on there (none with MS). Nothing further happened but it was fun to chat and meet other like-minded people. eHarmony has worked for me though. I met a young lady. We emailed for a few weeks, chatted on the phone and finally met up. MS is no big deal to her (it’s probably a bigger deal for me) and she likes me for who I am. She has her own issues of course but that’s a relief as we can work together and start our journey knowing neither of us is perfect.

My conclusion: Never say never. Get out there and enjoy yourself.

As part of this article, I asked on Twitter if anyone had experience of dating sites. I got a response from Glyn (@glynjamyn): “I had been single for a year, and thought a dating website could be worth a try. I firstly registered on a couple of ‘disability dating’ sites, but got nothing. I then registered with Guardian Soulmates, and struck up good conversations with several young women. This surprised me, as I had been very open about being a wheelchair-using MSer - but apparently people are not half as afraid of the MS as I had thought! They each had their own quirks, as do we all: one had recently been diagnosed herself, another suffered from depression, another was doing a disability studies PhD and finally, the mother of another had MS. I met with the latter woman and we had a great afternoon out.

I have no confidence in ‘disability dating’ websites.

From my experience I do not think people with MS should ‘ghettoise’ themselves to such. There are plenty of intelligent, caring people out there with their own crosses to bear, who may be very interested in someone whether or not that have MS, but who may not think to visit such a website. And for myself, I have fallen very happily in love with a beautiful, amazing girl.”

MS Trust have books on MS and sexuality which cover different aspects of relationships. Two quotes from the book for women with MS: “It took me a while to pluck up the courage to try dating websites, and I met a few frogs before I found some princes! I decided that, for me, free websites weren’t always a good idea - paying up front to be included implies a greater degree of commitment, making me feel more comfortable that someone else had the same motives as me. I’m always cautious, trust my gut reactions and take the time to get to know someone through the website, then by exchanging emails, before arranging to meet. Apart from anything else, when we meet faceto-face we have plenty to talk about.”

“My advice would be to think about how you want to appear in your profile and what sort of relationship you’re looking for. Get a good friend to look at what you’ve written. I tried to be honest but you can’t expect the same from others! I prefer a relatively early face-to-face meeting as I feel nothing can beat it; it can be very disappointing to find that you just don’t gel with someone you felt compatible with after emailing for an extended period.”

MS Trust publications ■ Talking about MS factsheet ■ Sexuality and MS: a guide for women ■ Sex and MS: a guide for men Order from the address on the back page or visit www.mstrust.org.uk/pubs

Freephone: 0800 032 3839

9

picture: Caro Wallis

Dating

mention MS in the personal information. I posed the question on Twitter and got a mixed reaction, as expected. Some MSers felt being honest was necessary and others thought leaving it out initially was wise, but be upfront about it later. I decided the latter would be my approach but did say I am in a wheelchair, and included an arty picture of it. After all, I have other qualities that I’m sure will appeal to other people - I am me, not a consequence of MS of course.

picture: Suze

For enabledalready, there were a few straight forward questions and a photograph.

Kevin Ward (@kevbevw) An interesting conversation started on Twitter. How do disabled folks date? The big question was about how to appeal to a potential partner. This article looks to shed some light on the options.

This leads me to dating sites. There are numerous sites available now. Some are free whilst others you have to pay a subscription. Or do you go with a disabled website?

I have secondary progressive MS. 2010 saw me turn 40, my marriage end, divorce and give up working.

My life is very different to what it used to be and there’s no escaping the fact I have MS.

Which? did a review of dating websites (www.tinyurl.com/which-online-dating), which includes prices of the subscription (at the time of their review). I decided to try both a pay-for dating website (www.eharmony.co.uk) and pay-for disabled site (www.enabledalready.com - this site has subsequently closed following the retirement of the owners, but www.whispers4u.co.uk is similar).

I went for a paid subscription as I wanted to be taken seriously. Mind you, my expectations for both were still low.

The two points of view were ■ It’s all about who you are. MS shouldn’t detract a potential partner from wanting to get to know the real you.

■ There’s no getting away from MS. The real you is shrouded by visual cues, such as my wheelchair, let alone the hidden symptoms. With the greatest will in the world, finding someone who is prepared to get to know you with all your symptoms sounds a big ask.

So, you find yourself single...

I thought about ‘getting out there’, such as going to pubs. I decided this was impractical due to fatigue and simply getting around in a manual wheelchair (that energy pot will only go so far).

Both sites are free to register. For eHarmony that means assessing yourself, answering personal questions and how you want to appear to others, including uploading a photograph or two. I liked their approach as it forced me, for once in my life, to stop and think about what I wanted in a relationship. The big question was whether to

Socialising with friends and meeting others at work is a great option if these are realistic for you. I met my previous partner at work but having stopped working, I would have to think of other ways. The majority of my friends aren’t local to me so this was also unrealistic.

I’m not afraid to ask ladies out. Last year saw me ask a young lady at the local therapy centre out and a support worker. Neither worked out but it did wonders for self belief and confidence.

There are personal ad columns in papers and magazines. I discounted these straight away as they feel very ‘yesterday’. With the growth of the internet and the online community, there are online personal ads (such as www.lovecity.com, www.ad-mart.co.uk/personals/).

I felt these weren’t ‘me’ so avoided them.

As I mentioned, Twitter is XhyraGraf a great way to meet other picture: people online.

8

www.mstrust.org.uk

picture: epSos.de

For both, ‘browsing’ is free. However, a subscription is needed to start talking to anyone. I’m used to the online community so talking to complete strangers whilst odd - is second nature to me these days. You do have to be ready for radio silence though so a thick skin is essential.

Enabledalready was a much smaller website with fewer users. I chatted to several ladies on there (none with MS). Nothing further happened but it was fun to chat and meet other like-minded people. eHarmony has worked for me though. I met a young lady. We emailed for a few weeks, chatted on the phone and finally met up. MS is no big deal to her (it’s probably a bigger deal for me) and she likes me for who I am. She has her own issues of course but that’s a relief as we can work together and start our journey knowing neither of us is perfect.

My conclusion: Never say never. Get out there and enjoy yourself.

As part of this article, I asked on Twitter if anyone had experience of dating sites. I got a response from Glyn (@glynjamyn): “I had been single for a year, and thought a dating website could be worth a try. I firstly registered on a couple of ‘disability dating’ sites, but got nothing. I then registered with Guardian Soulmates, and struck up good conversations with several young women. This surprised me, as I had been very open about being a wheelchair-using MSer - but apparently people are not half as afraid of the MS as I had thought! They each had their own quirks, as do we all: one had recently been diagnosed herself, another suffered from depression, another was doing a disability studies PhD and finally, the mother of another had MS. I met with the latter woman and we had a great afternoon out.

I have no confidence in ‘disability dating’ websites.

From my experience I do not think people with MS should ‘ghettoise’ themselves to such. There are plenty of intelligent, caring people out there with their own crosses to bear, who may be very interested in someone whether or not that have MS, but who may not think to visit such a website. And for myself, I have fallen very happily in love with a beautiful, amazing girl.”

MS Trust have books on MS and sexuality which cover different aspects of relationships. Two quotes from the book for women with MS: “It took me a while to pluck up the courage to try dating websites, and I met a few frogs before I found some princes! I decided that, for me, free websites weren’t always a good idea - paying up front to be included implies a greater degree of commitment, making me feel more comfortable that someone else had the same motives as me. I’m always cautious, trust my gut reactions and take the time to get to know someone through the website, then by exchanging emails, before arranging to meet. Apart from anything else, when we meet faceto-face we have plenty to talk about.”

“My advice would be to think about how you want to appear in your profile and what sort of relationship you’re looking for. Get a good friend to look at what you’ve written. I tried to be honest but you can’t expect the same from others! I prefer a relatively early face-to-face meeting as I feel nothing can beat it; it can be very disappointing to find that you just don’t gel with someone you felt compatible with after emailing for an extended period.”

MS Trust publications ■ Talking about MS factsheet ■ Sexuality and MS: a guide for women ■ Sex and MS: a guide for men Order from the address on the back page or visit www.mstrust.org.uk/pubs

Freephone: 0800 032 3839

9

demon in it), about someone unexpectedly losing the use of their legs.

Rock bottom and back

Since then I have been published 25 (and counting) times and in June 2011, I had my first book published. Induction is the first part of my disability-inspired superhero series written under my pen name of M. Leon Smith.

picture: Liam Dunn

Marcus Smith With the 20/20 clarity of hindsight, I can tell you that I had my first MS relapse in 2002 but, in the blurrier real world, I was diagnosed in the summer of 2009.

In mid-June I began to limp, my GP put it down to a pulled muscle and the fact I was grossly overweight.

I was sent away with paracetamol and ibuprofen; he refused to send me to a neurologist, as had been suggested by a consultant at a local medical walkin centre.

Becoming an MS patient (I refuse to use the term ‘sufferer’) has opened doors of opportunity I probably wouldn’t have had the time or inclination to explore had this disease not come into my life. In only two years I have gone from rock bottom to the top of the world.

As bad days go, 3 July 2009 was one of the worst for me. I got out of bed and fell. I blamed laminate flooring and being half asleep. I got up and fell again. And again. And again. After six or so falls I decided to stay down and phoned my dad for help.

At 35 years old I was not exactly happy about having to run (no pun intended) to daddy for rescue but I had no option.

brain rather than lower spine. A day or so later I was told, with an apologetic what-can-we-do shrug, that yes, I had MS. I felt surprisingly calm, despite being told I had the same condition that killed my aunt and that I knew would lead to a lifetime of uncertainty and hardship.

Of course, I hadn’t considered the possibility of becoming a wheelchair user, the bladder problems or even the smaller things like not being able to roll over in bed. The enormity of the situation didn’t hit me until later. After three weeks in hospital, I was transferred to a rehabilitation unit to begin my life again.

A couple of years earlier I’d had a temporary job in medical records at the same hospital, so it was with mixed emotions I began rehab. I knew how good they were and had seen firsthand some of the miracles that they had performed. I looked forward to seeing my former co-workers but I also didn’t want to be seen in such a state. Looking back, this was the first of the negative thoughts that I had due to the MS. I knew I was broken, was likely to remain that way, and I didn’t want people to see me.

At the time I was a publican, running a local bar and living in the flat above. I didn’t know but I had just lost it all. Homeless, jobless and disabled all in one go. My dad helped get me downstairs where an ambulance was called. I ended up in Newcastle General Hospital A&E and went through a barrage of tests. The doctor on duty was very thorough but clearly confused. When no obvious medical cause was found, she transferred me to a surgical ward.

Shifting barrels in the cellar, and my weight, seemed to make it obvious that I had damaged my spine.

The first MRI I had revealed that this wasn’t the case and I finally ended up in front of a neurologist.

It was on the neurology ward that I brought up the possibility of MS. The condition is prevalent in my family and I’m the fifth member with it. Once the family tree had been looked over, the diagnostic tests for MS began. I was zapped with electricity and stabbed with needles. Then a lumbar puncture, which thankfully was entirely painless and sideeffect free, and then another MRI focussing on my

10

www.mstrust.org.uk

I began physio, received my first wheelchair (a horrible thing that was set up and weighted for a double amputee to push - every inch felt like I was pushing up Everest), started with my occupational therapists and, most importantly at that time, my counsellor.

At first, I really didn’t want to be there. I’d had my entire life torn from me and, although they were only there to help, I’m ashamed to say that the staff at the rehab took the brunt of my bad temper. Having spoken to them since, they say I wasn’t bad at all but I still feel guilty about it.

As well as the problems with my legs, I was suffering from sensory loss in my hands. The best way to describe the feeling (or lack thereof) is to liken it to wearing thick, woollen gloves. I was aware of pressure but texture or temperature and any sort of fine control was gone. I couldn’t even pick up pens or coins. My occupational therapists advised that I had to use my hands continuously to get the sensation back, to re-train my brain to recognise what was happening at the ends of arms.

The feeling I get when I see my books or writings on Amazon, under my name, with artwork that has been created especially for me is a feeling without compare.

All too often, I speak to fellow MS patients and they focus on all they have lost, all they cannot do.

I always counter this negativity with “focus on what you can do”. You can dwell on all the negativity or you can get positive and take control.

If your mobility is impaired, then fight for physiotherapy and an occupational therapist. More importantly, do as you’re told. They have the training and expertise, so open your ears. If you have your mobility, then get fit. I weighed 26 stones when I hit the wheelchair and yes, pushing that much weight is just as hard as it sounds. Take your medication but not blindly. Find out what each tablet or injection does and why you are taking it at one point I had a regimen of over 70 tablets a week. I’m now down to half that amount. Get involved with your treatment but take expert advice. Keep in mind that having MS does not mean your life is over: I can prove that sometimes it’s just beginning.

It was with that advice, and an eye on future employment opportunities, that I asked for a keyboard to plug into my laptop. Typing, which had once been so easy, had become an exercise in futility. A keyboard duly appeared.

After only a day or so I realised that I needed something to type. Repeatedly entering the alphabet or ‘the quick brown fox...’ was incredibly boring so I started to write short stories. There were two reasons for this - firstly as rehab and secondly to exorcise the thoughts that were tearing me apart.

I was still in rehab when I submitted my first piece for publication. It was rejected but the email I received was so supportive and encouraging that I felt that I hadn’t wasted my time. I began to take writing fairly seriously and, when I left rehab in December 2009, it was how I filled most of the time in my newly adapted bungalow.

picture: Nathan T Baker

My second story, Scared, was accepted for publication. This meant a great deal to me as it was largely autobiographical (if you ignore the malicious

Find out more about Marcus and his writing at www.mleonsmith.com

Freephone: 0800 032 3839

11

demon in it), about someone unexpectedly losing the use of their legs.

Rock bottom and back

Since then I have been published 25 (and counting) times and in June 2011, I had my first book published. Induction is the first part of my disability-inspired superhero series written under my pen name of M. Leon Smith.

picture: Liam Dunn

Marcus Smith With the 20/20 clarity of hindsight, I can tell you that I had my first MS relapse in 2002 but, in the blurrier real world, I was diagnosed in the summer of 2009.

In mid-June I began to limp, my GP put it down to a pulled muscle and the fact I was grossly overweight.

I was sent away with paracetamol and ibuprofen; he refused to send me to a neurologist, as had been suggested by a consultant at a local medical walkin centre.

Becoming an MS patient (I refuse to use the term ‘sufferer’) has opened doors of opportunity I probably wouldn’t have had the time or inclination to explore had this disease not come into my life. In only two years I have gone from rock bottom to the top of the world.

As bad days go, 3 July 2009 was one of the worst for me. I got out of bed and fell. I blamed laminate flooring and being half asleep. I got up and fell again. And again. And again. After six or so falls I decided to stay down and phoned my dad for help.

At 35 years old I was not exactly happy about having to run (no pun intended) to daddy for rescue but I had no option.

brain rather than lower spine. A day or so later I was told, with an apologetic what-can-we-do shrug, that yes, I had MS. I felt surprisingly calm, despite being told I had the same condition that killed my aunt and that I knew would lead to a lifetime of uncertainty and hardship.

Of course, I hadn’t considered the possibility of becoming a wheelchair user, the bladder problems or even the smaller things like not being able to roll over in bed. The enormity of the situation didn’t hit me until later. After three weeks in hospital, I was transferred to a rehabilitation unit to begin my life again.

A couple of years earlier I’d had a temporary job in medical records at the same hospital, so it was with mixed emotions I began rehab. I knew how good they were and had seen firsthand some of the miracles that they had performed. I looked forward to seeing my former co-workers but I also didn’t want to be seen in such a state. Looking back, this was the first of the negative thoughts that I had due to the MS. I knew I was broken, was likely to remain that way, and I didn’t want people to see me.

At the time I was a publican, running a local bar and living in the flat above. I didn’t know but I had just lost it all. Homeless, jobless and disabled all in one go. My dad helped get me downstairs where an ambulance was called. I ended up in Newcastle General Hospital A&E and went through a barrage of tests. The doctor on duty was very thorough but clearly confused. When no obvious medical cause was found, she transferred me to a surgical ward.

Shifting barrels in the cellar, and my weight, seemed to make it obvious that I had damaged my spine.

The first MRI I had revealed that this wasn’t the case and I finally ended up in front of a neurologist.

It was on the neurology ward that I brought up the possibility of MS. The condition is prevalent in my family and I’m the fifth member with it. Once the family tree had been looked over, the diagnostic tests for MS began. I was zapped with electricity and stabbed with needles. Then a lumbar puncture, which thankfully was entirely painless and sideeffect free, and then another MRI focussing on my

10

www.mstrust.org.uk

I began physio, received my first wheelchair (a horrible thing that was set up and weighted for a double amputee to push - every inch felt like I was pushing up Everest), started with my occupational therapists and, most importantly at that time, my counsellor.

At first, I really didn’t want to be there. I’d had my entire life torn from me and, although they were only there to help, I’m ashamed to say that the staff at the rehab took the brunt of my bad temper. Having spoken to them since, they say I wasn’t bad at all but I still feel guilty about it.

As well as the problems with my legs, I was suffering from sensory loss in my hands. The best way to describe the feeling (or lack thereof) is to liken it to wearing thick, woollen gloves. I was aware of pressure but texture or temperature and any sort of fine control was gone. I couldn’t even pick up pens or coins. My occupational therapists advised that I had to use my hands continuously to get the sensation back, to re-train my brain to recognise what was happening at the ends of arms.

The feeling I get when I see my books or writings on Amazon, under my name, with artwork that has been created especially for me is a feeling without compare.

All too often, I speak to fellow MS patients and they focus on all they have lost, all they cannot do.

I always counter this negativity with “focus on what you can do”. You can dwell on all the negativity or you can get positive and take control.

If your mobility is impaired, then fight for physiotherapy and an occupational therapist. More importantly, do as you’re told. They have the training and expertise, so open your ears. If you have your mobility, then get fit. I weighed 26 stones when I hit the wheelchair and yes, pushing that much weight is just as hard as it sounds. Take your medication but not blindly. Find out what each tablet or injection does and why you are taking it at one point I had a regimen of over 70 tablets a week. I’m now down to half that amount. Get involved with your treatment but take expert advice. Keep in mind that having MS does not mean your life is over: I can prove that sometimes it’s just beginning.

It was with that advice, and an eye on future employment opportunities, that I asked for a keyboard to plug into my laptop. Typing, which had once been so easy, had become an exercise in futility. A keyboard duly appeared.

After only a day or so I realised that I needed something to type. Repeatedly entering the alphabet or ‘the quick brown fox...’ was incredibly boring so I started to write short stories. There were two reasons for this - firstly as rehab and secondly to exorcise the thoughts that were tearing me apart.

I was still in rehab when I submitted my first piece for publication. It was rejected but the email I received was so supportive and encouraging that I felt that I hadn’t wasted my time. I began to take writing fairly seriously and, when I left rehab in December 2009, it was how I filled most of the time in my newly adapted bungalow.

picture: Nathan T Baker

My second story, Scared, was accepted for publication. This meant a great deal to me as it was largely autobiographical (if you ignore the malicious

Find out more about Marcus and his writing at www.mleonsmith.com

Freephone: 0800 032 3839

11

picture: [F]oxymoron

From test tube to medicine cabinet

How a new drug is developed The development of new drugs is a long and difficult process. Only one or two compounds in 10,000 tested actually make it through to being licensed treatments. A potential new medicine may be rejected at any point in the development process on safety, effectiveness or quality grounds. Overall, it may take 10-15 years for a new compound to get from the test tube to the medicine cabinet.

Discovery picture: Lilian Nathania A fundamental first step to discovering new drugs is knowledge of the biology of a disease. This involves understanding how cell and biological processes work in health as well as what goes wrong in disease. This will reveal potential targets that a drug could act on. Increasingly, research scientists have been able to understand the shape of biological molecules at the atomic level, and to use that knowledge to design potential new drugs.

Studies in cells and animals are crucial first steps and should not be undervalued. However, many drugs that show promising results in cells in laboratories don’t work in animals, and many drugs that show promising results in animals don’t work in humans. The attention grabbing headlines that promise a ‘cure’ or ‘breakthrough’ are often reporting animal studies. While these studies will be adding valuable data to the body of knowledge about a condition, it’s likely to be many years before this can be translated into a treatment.

Many thousands of new chemical compounds are created and tested to identify those that have potential. There is a very high drop out rate at this stage; fewer than 1 in 1,000 of all the compounds that are made ever progress to testing in humans.

A new drug that shows potential will be put through a battery of laboratory and animal tests before being given a clinical trials authorisation that allows it to be tested in humans.

12

Licensing

In general use, new treatment areas may emerge or different categories of patients may be defined. In order to promote these new treatment areas, a pharmaceutical company will need to conduct further clinical trials and present new data to the regulatory authorities in order to extend the current licence.

Data from all of these phases is presented to the regulatory authorities (in the UK this is the MHRA Medicines and Healthcare products Regulatory Agency or the EMA - European Medicines Agency). If the Naming of drugs authorities are satisfied that the new medicine is effective, safe and meets manufacturing quality Drug names usually start as a string of letters and standards, a marketing authorisation or licence is issued. numbers, a name used to identify it in the laboratory.

Phase I The first step in testing a new drug is to determine the safety of single doses in a small number of healthy volunteers. This stage helps researchers understand some aspects of how it works and establishes the likely dose required.

Phase II If the treatment proves to be safe, studies begin to determine the effectiveness of the drug in people with the condition to be treated. These studies may last several months or years and involve larger numbers of people, perhaps one or two hundred.

The study may be: ■ controlled - the drug is compared with the standard treatment or placebo (dummy treatment), ■ double-blind - neither the investigators nor the participants know which treatment they are receiving, and ■ randomised - participants will be randomly allocated to receive active treatment or placebo.

In the case of relapsing remitting MS, phase II studies typically measure the number of lesions seen in MRI scans at the beginning and end of six months of treatment.

Phase III If a drug shows effectiveness, a larger study is conducted in hundreds of people. These clinical trials may be conducted at different locations (multi-centre) and across several countries and may last several years. These studies allow researchers to more accurately assess the potential of the new drug in a wider range of people and compare it to existing treatments Phase III studies in relapsing remitting MS generally run for two years and compare the number of relapses in people taking the new drug with those taking the standard treatment or placebo.

www.mstrust.org.uk

As the drug advances through testing, it gets a generic, or non-proprietary, name which must be approved by the World Health Organization. The name often reflects the Once a new medicine has been licensed, there may drug’s chemical class and use. A group of medicines that have similar actions often have similar sounding generic still be one final hurdle. Set up in 1999 to help eliminate postcode lottery prescribing in England and names. For example, penicillin, ampicillin, amoxicillin and Wales, NICE (National Institute for Health and Clinical flucloxacillin are in one group of antibiotics.

Excellence) appraises certain new medicines and will The brand name, or proprietary name, is chosen by look at issues such as cost effectiveness of the new the manufacturer, usually on the basis that it can be treatment. In Scotland, appraisal is carried out by recognised, pronounced and remembered by health the SMC (Scottish Medicines Consortium). professionals and members of the public. The brand name must be unique to protect the trademark and not sound or look too much like any other drug name to Post-marketing surveillance and avoid medical errors.

NHS appraisal

Yellow Card Scheme

Once the newly licensed medicine is in general use, it will be carefully monitored for safety. All medicines have a patient information leaflet (PIL), which gives instructions on how the medicine should be used and on its side effects. Rare side effects, for example those occurring in 1 in 10,000 people, may only become apparent once a medicine is in general use.

What’s in the pipeline for MS? To keep you up to date with the progress of new drugs through clinical trials, the research pages of the MS Trust website list the principal new treatments under investigation. For each of these new treatments, we summarise the latest results from clinical trials which have completed and give details of clinical trials which are currently underway.

In the UK, the Yellow Card Scheme is used by doctors and members of the public to report unwanted side effects of a medicine to the MHRA. If Relapsing remitting MS a suspected side effect is confirmed, depending on ■ ATX-MS-1467 its severity, the PIL may be amended, extra warnings ■ Alemtuzumab may be issued or the medicine may be withdrawn.

■ BG-12 For more on the Yellow Card scheme, visit ■ Daclizumab

www.mstrust.org.uk/atoz/yellow.jsp

■ Ocrelizumab

New uses of a medicine

■ Teriflunomide

Clinical trials will continue after a medicine has been granted a licence. These trials aim to:

Secondary progressive MS

■ find new treatment uses

■ Masitinib

■ compare the new medicine with other treatments

■ Natalizumab

■ determine effectiveness in a much wider range of patients

Primary progressive MS

■ assess long-term benefits and safety A licence is granted for a specific use and in a particular group of people. However, once a medicine has been approved for one purpose, doctors are free to prescribe it for any other purpose that in their professional judgment is both safe and effective - this is described as off-label use.

■ Natalizumab ■ Fingolimod ■ Masitinib ■ Ocrelizumab For more information on each of these, visit www.mstrust.org.uk/did/

Freephone: 0800 032 3839

13

picture: [F]oxymoron

From test tube to medicine cabinet

How a new drug is developed The development of new drugs is a long and difficult process. Only one or two compounds in 10,000 tested actually make it through to being licensed treatments. A potential new medicine may be rejected at any point in the development process on safety, effectiveness or quality grounds. Overall, it may take 10-15 years for a new compound to get from the test tube to the medicine cabinet.

Discovery picture: Lilian Nathania A fundamental first step to discovering new drugs is knowledge of the biology of a disease. This involves understanding how cell and biological processes work in health as well as what goes wrong in disease. This will reveal potential targets that a drug could act on. Increasingly, research scientists have been able to understand the shape of biological molecules at the atomic level, and to use that knowledge to design potential new drugs.

Studies in cells and animals are crucial first steps and should not be undervalued. However, many drugs that show promising results in cells in laboratories don’t work in animals, and many drugs that show promising results in animals don’t work in humans. The attention grabbing headlines that promise a ‘cure’ or ‘breakthrough’ are often reporting animal studies. While these studies will be adding valuable data to the body of knowledge about a condition, it’s likely to be many years before this can be translated into a treatment.

Many thousands of new chemical compounds are created and tested to identify those that have potential. There is a very high drop out rate at this stage; fewer than 1 in 1,000 of all the compounds that are made ever progress to testing in humans.

A new drug that shows potential will be put through a battery of laboratory and animal tests before being given a clinical trials authorisation that allows it to be tested in humans.

12

Licensing

In general use, new treatment areas may emerge or different categories of patients may be defined. In order to promote these new treatment areas, a pharmaceutical company will need to conduct further clinical trials and present new data to the regulatory authorities in order to extend the current licence.

Data from all of these phases is presented to the regulatory authorities (in the UK this is the MHRA Medicines and Healthcare products Regulatory Agency or the EMA - European Medicines Agency). If the Naming of drugs authorities are satisfied that the new medicine is effective, safe and meets manufacturing quality Drug names usually start as a string of letters and standards, a marketing authorisation or licence is issued. numbers, a name used to identify it in the laboratory.

Phase I The first step in testing a new drug is to determine the safety of single doses in a small number of healthy volunteers. This stage helps researchers understand some aspects of how it works and establishes the likely dose required.

Phase II If the treatment proves to be safe, studies begin to determine the effectiveness of the drug in people with the condition to be treated. These studies may last several months or years and involve larger numbers of people, perhaps one or two hundred.

The study may be: ■ controlled - the drug is compared with the standard treatment or placebo (dummy treatment), ■ double-blind - neither the investigators nor the participants know which treatment they are receiving, and ■ randomised - participants will be randomly allocated to receive active treatment or placebo.

In the case of relapsing remitting MS, phase II studies typically measure the number of lesions seen in MRI scans at the beginning and end of six months of treatment.

Phase III If a drug shows effectiveness, a larger study is conducted in hundreds of people. These clinical trials may be conducted at different locations (multi-centre) and across several countries and may last several years. These studies allow researchers to more accurately assess the potential of the new drug in a wider range of people and compare it to existing treatments Phase III studies in relapsing remitting MS generally run for two years and compare the number of relapses in people taking the new drug with those taking the standard treatment or placebo.

www.mstrust.org.uk

As the drug advances through testing, it gets a generic, or non-proprietary, name which must be approved by the World Health Organization. The name often reflects the Once a new medicine has been licensed, there may drug’s chemical class and use. A group of medicines that have similar actions often have similar sounding generic still be one final hurdle. Set up in 1999 to help eliminate postcode lottery prescribing in England and names. For example, penicillin, ampicillin, amoxicillin and Wales, NICE (National Institute for Health and Clinical flucloxacillin are in one group of antibiotics.

Excellence) appraises certain new medicines and will The brand name, or proprietary name, is chosen by look at issues such as cost effectiveness of the new the manufacturer, usually on the basis that it can be treatment. In Scotland, appraisal is carried out by recognised, pronounced and remembered by health the SMC (Scottish Medicines Consortium). professionals and members of the public. The brand name must be unique to protect the trademark and not sound or look too much like any other drug name to Post-marketing surveillance and avoid medical errors.

NHS appraisal

Yellow Card Scheme

Once the newly licensed medicine is in general use, it will be carefully monitored for safety. All medicines have a patient information leaflet (PIL), which gives instructions on how the medicine should be used and on its side effects. Rare side effects, for example those occurring in 1 in 10,000 people, may only become apparent once a medicine is in general use.

What’s in the pipeline for MS? To keep you up to date with the progress of new drugs through clinical trials, the research pages of the MS Trust website list the principal new treatments under investigation. For each of these new treatments, we summarise the latest results from clinical trials which have completed and give details of clinical trials which are currently underway.

In the UK, the Yellow Card Scheme is used by doctors and members of the public to report unwanted side effects of a medicine to the MHRA. If Relapsing remitting MS a suspected side effect is confirmed, depending on ■ ATX-MS-1467 its severity, the PIL may be amended, extra warnings ■ Alemtuzumab may be issued or the medicine may be withdrawn.

■ BG-12 For more on the Yellow Card scheme, visit ■ Daclizumab

www.mstrust.org.uk/atoz/yellow.jsp

■ Ocrelizumab

New uses of a medicine

■ Teriflunomide

Clinical trials will continue after a medicine has been granted a licence. These trials aim to:

Secondary progressive MS

■ find new treatment uses

■ Masitinib

■ compare the new medicine with other treatments

■ Natalizumab

■ determine effectiveness in a much wider range of patients

Primary progressive MS

■ assess long-term benefits and safety A licence is granted for a specific use and in a particular group of people. However, once a medicine has been approved for one purpose, doctors are free to prescribe it for any other purpose that in their professional judgment is both safe and effective - this is described as off-label use.

■ Natalizumab ■ Fingolimod ■ Masitinib ■ Ocrelizumab For more information on each of these, visit www.mstrust.org.uk/did/

Freephone: 0800 032 3839

13

Supporting the MS Trust

Skydiving

Cycling

Over 150 people took part in a skydive for the MS Trust last year; could you be one of them in 2012?

3 Countries in 3 Days...

France, Belgium, Holland!

Could it be your garden for MS in 2012?

Are you ready to turn things BLUE? Be Bold in Blue is back and this year it will be bigger and better!

During MS Awareness Week 2012 (30 April - 6 May) we are asking everyone to ‘Be Bold in Blue’ to raise money for the MS Trust.

Registration fee: £55 Minimum sponsorship: £790

MS Circuit Challenge at Goodwood Our third event at Goodwood will take place on Sunday 27 May 2012. We hope you can come along and join in the fun; there will be plenty to entertain you and your family on the day.

20 lap cycle race - 9.30am to 1pm Every year enthusiastic supporters hold coffee mornings and lunches; games and raffles; jam, chutney and cupcake sales; barbecues and cocktail parties and all sorts of other events in their gardens to raise funds for the MS Trust. In the last three years these garden parties have raised a fabulous £20,000 to help our work. Just look at what Daniel (pictured) raised last year selling cakes!

For some it is becoming a regular part of their annual calendar - a chance to catch up with old friends and make some new ones.

So while you are shivering in the cold frosts or the grey drizzle of February and making plans for enjoying your garden in the summer, why not also plan an event to support the MS Trust’s work? Or if you can’t do it yourself, could you ask your friends and family, or your local garden club to help us?

Toolstream Ltd fundraising in 2011

14

If you think you can help or would like to find out more, please contact us or visit www.mstrust.org.uk/mygarden

www.mstrust.org.uk

“The actual fall took about 5 minutes, and it was honestly the best, most adrenaline-filled 5 minutes of my entire life, made better by knowing I was raising money for such a good cause. Thanks to the help of friends and family I raised £2,126.50 for the MS Trust, and can’t wait to get back in a plane and jump again!”

We will be holding three group parachuting days this year as well as our annual Jump in June event.

To find out more, please get in touch or visit www.mstrust.org.uk/jump

Running

www.mstrust.org.uk/3countries

Whatever you do, big or small, the money you raise really will make a difference as you will be ensuring we can continue to provide our services and support people with MS.

www.msawarenessweek.org.uk

“My mum was diagnosed with MS at 16, and so when I saw the opportunity to raise money for a cause so close to me as well as having the experience of a lifetime, I knew there was no turning back. Sure enough, a few weeks later it was finally my turn to go up in the plane and jump the 13,000 feet.

Join our brand new 3 Countries Cycle Challenge for the opportunity to cycle one of the most scenic and beautiful routes around Flanders from 12 to 14 October 2012, whilst raising funds to support people living with MS. This cycling adventure takes you 197 miles across the scenic flat countryside, through the borders of France, Belgium and Holland.

Contact us today for an event pack.

You really can turn anything Blue. It can be as simple as baking some blueberry muffins and selling them at work or dressing up in blue for a day. It could also be as big as a blue themed dinner party, gala ball or even dying your hair blue!

Why not become a ‘Blue Ambassador’ and help us to spread the word? The more people who know about this exciting fundraising campaign, the more money we can raise. Ask friends and family if they can take part, ask local schools to sign up, put up posters in your local area. Any help you can offer really would be much appreciated.

Helen Stokes (pictured) took part in a jump last June

One for the serious cyclist - cycle 47.6 miles around the famous motor circuit! Great prizes will be on offer to the winners of various categories. £17.50 for advance registrations, £20 on the day.

Family Fun Event - 1.30 to 3.30pm

Thank you to everyone that took part in a running event for the MS Trust in 2011. Coming up this year, we have guaranteed places available in the following runs:

DIFC 5k & 10k Super Hero Run London: May 2012 Registration fee: £20 Minimum sponsorship: £100

ASICS British 10k London Run: 8 July 2012 Registration fee: £15

Complete the 2.38 mile circuit ‘by any means’ - walking, cycling, on roller skates, in fancy dress - and the flat motor circuit is ideal for wheelchair users. The event is open to all ages and abilities and is about having fun!

Just £5 per person or £10 per family! There will be prizes for the best entries and a medal for all participants.

For more information and to register, please visit www.mstrust.org.uk/goodwood

Minimum sponsorship: £99 (or £500 for a team of six)

Bupa Great North Run (half marathon): 16 September 2012 Registration fee: £48 Minimum sponsorship: £295 www.mstrust.org.uk/runningclub

Our work could not continue without the dedication and support of our fundraisers, donors and volunteers.

If you would like to get involved with any of our activities or make a donation towards our work, please contact us on 01462 476707 or email fundraising@mstrust.org.uk

Freephone: 0800 032 3839

15

Supporting the MS Trust

Skydiving

Cycling

Over 150 people took part in a skydive for the MS Trust last year; could you be one of them in 2012?

3 Countries in 3 Days...

France, Belgium, Holland!

Could it be your garden for MS in 2012?

Are you ready to turn things BLUE? Be Bold in Blue is back and this year it will be bigger and better!

During MS Awareness Week 2012 (30 April - 6 May) we are asking everyone to ‘Be Bold in Blue’ to raise money for the MS Trust.

Registration fee: £55 Minimum sponsorship: £790

MS Circuit Challenge at Goodwood Our third event at Goodwood will take place on Sunday 27 May 2012. We hope you can come along and join in the fun; there will be plenty to entertain you and your family on the day.

20 lap cycle race - 9.30am to 1pm Every year enthusiastic supporters hold coffee mornings and lunches; games and raffles; jam, chutney and cupcake sales; barbecues and cocktail parties and all sorts of other events in their gardens to raise funds for the MS Trust. In the last three years these garden parties have raised a fabulous £20,000 to help our work. Just look at what Daniel (pictured) raised last year selling cakes!

For some it is becoming a regular part of their annual calendar - a chance to catch up with old friends and make some new ones.

So while you are shivering in the cold frosts or the grey drizzle of February and making plans for enjoying your garden in the summer, why not also plan an event to support the MS Trust’s work? Or if you can’t do it yourself, could you ask your friends and family, or your local garden club to help us?

Toolstream Ltd fundraising in 2011

14

If you think you can help or would like to find out more, please contact us or visit www.mstrust.org.uk/mygarden

www.mstrust.org.uk

“The actual fall took about 5 minutes, and it was honestly the best, most adrenaline-filled 5 minutes of my entire life, made better by knowing I was raising money for such a good cause. Thanks to the help of friends and family I raised £2,126.50 for the MS Trust, and can’t wait to get back in a plane and jump again!”

We will be holding three group parachuting days this year as well as our annual Jump in June event.

To find out more, please get in touch or visit www.mstrust.org.uk/jump

Running

www.mstrust.org.uk/3countries

Whatever you do, big or small, the money you raise really will make a difference as you will be ensuring we can continue to provide our services and support people with MS.

www.msawarenessweek.org.uk

“My mum was diagnosed with MS at 16, and so when I saw the opportunity to raise money for a cause so close to me as well as having the experience of a lifetime, I knew there was no turning back. Sure enough, a few weeks later it was finally my turn to go up in the plane and jump the 13,000 feet.

Join our brand new 3 Countries Cycle Challenge for the opportunity to cycle one of the most scenic and beautiful routes around Flanders from 12 to 14 October 2012, whilst raising funds to support people living with MS. This cycling adventure takes you 197 miles across the scenic flat countryside, through the borders of France, Belgium and Holland.

Contact us today for an event pack.

You really can turn anything Blue. It can be as simple as baking some blueberry muffins and selling them at work or dressing up in blue for a day. It could also be as big as a blue themed dinner party, gala ball or even dying your hair blue!

Why not become a ‘Blue Ambassador’ and help us to spread the word? The more people who know about this exciting fundraising campaign, the more money we can raise. Ask friends and family if they can take part, ask local schools to sign up, put up posters in your local area. Any help you can offer really would be much appreciated.

Helen Stokes (pictured) took part in a jump last June

One for the serious cyclist - cycle 47.6 miles around the famous motor circuit! Great prizes will be on offer to the winners of various categories. £17.50 for advance registrations, £20 on the day.

Family Fun Event - 1.30 to 3.30pm

Thank you to everyone that took part in a running event for the MS Trust in 2011. Coming up this year, we have guaranteed places available in the following runs:

DIFC 5k & 10k Super Hero Run London: May 2012 Registration fee: £20 Minimum sponsorship: £100

ASICS British 10k London Run: 8 July 2012 Registration fee: £15

Complete the 2.38 mile circuit ‘by any means’ - walking, cycling, on roller skates, in fancy dress - and the flat motor circuit is ideal for wheelchair users. The event is open to all ages and abilities and is about having fun!

Just £5 per person or £10 per family! There will be prizes for the best entries and a medal for all participants.

For more information and to register, please visit www.mstrust.org.uk/goodwood

Minimum sponsorship: £99 (or £500 for a team of six)

Bupa Great North Run (half marathon): 16 September 2012 Registration fee: £48 Minimum sponsorship: £295 www.mstrust.org.uk/runningclub

Our work could not continue without the dedication and support of our fundraisers, donors and volunteers.

If you would like to get involved with any of our activities or make a donation towards our work, please contact us on 01462 476707 or email fundraising@mstrust.org.uk

Freephone: 0800 032 3839

15

Information service news New publication A new edition of At work with MS: managing life and work is now available. The book considers some of the ways in which MS might affect work, what adjustments can be made for a successful working life and the protection from discrimination under the Equality Act. The book also includes tips and advice from people with MS. The new edition encourages people to unpick the problems they are experiencing and develop action plans to tackle each issue.

Order your free copy from the MS Trust or read, order or download from www.mstrust.org.uk/pubs

Information Service We believe that people with MS should have the opportunity to be actively involved in the management of their condition. The Information Service can help you get the information you need to achieve this.

Our focus is on health information. Recently the most frequently asked questions have included information on new treatments such as fingolimod and fampridine, how to contact MS nurses around the country, questions from people recently diagnosed or still going through the diagnostic process, and issues to do with employment.

We will gather reliable, independent information to help you decide how to approach issues that concern you and to have informed discussions with your health professionals. If we are unable to find an answer ourselves, we will try to direct you to other people better able to help.

Inside this issue...

February 2012

Welcome to the first edition of Open Door in 2012

Multiple Sclerosis Trust Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 F 01462 476710 E info@mstrust.org.uk www.mstrust.org.uk Registered charity no. 1088353

16

www.mstrust.org.uk

6

Dating

8

“it takes just three words to tell someone they have MS and a lifetime for them to find out what that means.”

People with MS never forget what it was like when they received their diagnosis.

Some avoid the subject altogether, but many go away and try to find out everything they can. In the past there was very little available. Now you can press a few keys and get to 15 million references on a single Google search.

That is where we come in, translating all this information into something meaningful - whether that’s being on the end of the phone, on the web, here in our regular newsletter Open Door or in our publications.

Having good information to help you make the right decisions, at the beginning of a journey with MS is really important and we want to make sure that we are delivering what is needed at that time.

To do this, we need your help. If you have been diagnosed with MS in the last five years please have a look at our latest project on page 2. If you would like to help, do contact Ros. We look forward to hearing your views.

This copy of Open Door also contains our publications leaflet, which is a reminder of all that our information service currently offers. Please pass it on to anyone who may find it useful.

How a new drug is developed

12

MS Awareness Week - 30 April to 6 May - is an ideal opportunity to increase the understanding of MS. We have enclosed a poster of our plans for that week and we would be grateful if you could display it locally. Do contact us if you would like to get involved.

Thank you for all your support and very best wishes for 2012.

Also inside:

Publications The publication leaflet enclosed in this issue of Open Door gives information on the range of books, factsheets and DVDs available from the MS Trust.

All of these items can also be read, ordered or downloaded from www.mstrust.org.uk/pubs

Diet

Pam Macfarlane Chief Executive

Have you been diagnosed with MS in the last five years?

Newly diagnosed research

2

News

3

Research news

4

Writing

10

We are looking for your help.

Fundraising

14

See page 2

Info service

16

www.mstrust.org.uk

Freephone: 0800 032 3839