MS in focus Issue One • 2002

MS in Focus Issue One • 2003

Issue 1 • 2003

● Special focus on dealing with fatigue

● Organising theme seminars

● Your questions answered

The Magazine of the Multiple Sclerosis International Federation
● Book and website reviews

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 MS in focus Issue 1 • 2003

Editorial Board
Executive Editor Nancy Holland, EdD, RN, MSCN, Vice
Multiple Sclerosis
President, Clinical Programs and Professional Resource Centre,
International Federation National Multiple Sclerosis Society USA.

Established in 1967, the Multiple Sclerosis Editor and Project Leader Michele Messmer Uccelli, BA,
International Federation links the work of Department of Social and Health Research, Italian Multiple
national MS societies worldwide. Sclerosis Society, Genoa, Italy.

We are committed to working together and Managing Editor Chloe Neild, BSc, MSc, Information and
with the international research community to Communications Manager, Multiple Sclerosis International
eliminate MS and its devastating effects. We Federation.
also speak out on a global level for those
affected by MS. Production Assistant Leila Terry, BA, Research Administrator,
Multiple Sclerosis International Federation.
Our priorities are:
• Stimulating global research MSIF Responsible Board Member Prof Dr Jürg Kesselring,
• Stimulating the active exchange of Chair of MSIF International Medical and Scientific Board, Head
information of the Department of Neurology, Rehabilitation Centre, Valens,
• Providing support for the development of Switzerland.
new and existing MS societies
Editorial Board Members
All of our work is carried out with the Guy Ganty, Head of the Speech and Language Pathology
Department, National Multiple Sclerosis Centre, Melsbroek,
complete involvement of people living with
Belgium.
MS.
Katrin Gross-Paju, PhD, Estonian Multiple Sclerosis Centre, West
Tallinn Central Hospital, Tallinn, Estonia.
Marco Heerings, RN, MA, MSCN, Nurse Practitioner, Groningen
University Hospital, Groningen, The Netherlands.
Designed and produced by
Kaye Hooper, BA, RN, RM, MPH, MSCN, Board of Directors,
International Organization of Multiple Sclerosis Nurses.
Cambridge Publishers Ltd
Martha King, Director of Publications, National Multiple Sclerosis
53/54 Sidney Street
Society, USA.
Cambridge
Elizabeth McDonald, MBBS, FAFRM, RACP, Medical Director,
CB2 3HX MS Society of Victoria, Australia.
Monica Nortvedt, RN, PhD, Department of Public Health and
01223 477411 Primary Health Care, University of Bergen, Norway.
[email protected]
Elsa Teilimo, RN, UN Linguist, Finnish Representative, Persons
www.campublishers.com with MS International Committee.

ISSN1478467X Copy Editor Emma Mason, BA, Essex, UK.

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 MS in focus Issue 1 • 2003

Letter from the Editor Contents

One of the goals of the Multiple Sclerosis International From the Editor 3
Federation is the dissemination of high quality information,
on all aspects of the disease, to people affected by MS Theme seminars 4
worldwide.
Fatigue: An introduction 6
With this in mind, it is with great pleasure that I present Managing day-to-day life 9
this first issue of MS in Focus, the official magazine of
MSIF. MS in Focus will be published on a bi-annual basis, Physiotherapy 12
each issue focusing on a particular theme, with the Nursing 14
content developed by an international mix of MS society
and healthcare professionals and people with MS. Pharmacological treatment 17
Questions and answers 18
Our aim is to bring the best of available information from
MS societies into a single magazine, along with articles Interview: Ian Gray 19
written by some of the most knowledgeable people in the
field. Each issue will feature an MS society programme Reviews 20
relevant to the current theme, in the hope of encouraging MSIF: An overview 22
the adaptation of successful programmes in other
countries. We encourage both professionals and people Calendar dates 24
with MS to write in with comments, which may then
Member Societies 24
appear in the ‘Letters to the Editor’ section. In addition,
each issue will include questions received from our The World of MS website 26
readership, as well as replies from experts.

We hope you will agree that the themes we have chosen

for MS in Focus are important to people living with MS
and that each has been comprehensively addressed. We
also hope MS in Focus becomes an information resource
for MS society and healthcare professionals, but
especially for people with MS. I look forward to receiving The next issue of MS in Focus will be on
your comments and questions. Bladder Management. Send questions
and letters to [email protected] or marked
for the attention of Michele Messmer
Michele Messmer Uccelli Uccelli at the Italian MS Society, Vico
Editor chiuso Paggi 3, Genoa, Italy 16128.

Editorial Statement
The content of MS in Focus is based on professional knowledge and experience. The editor and
authors endeavour to provide relevant and up-to-date information. Information provided through MS
in Focus is not intended to substitute for advice, prescription or recommendation from a physician or
other healthcare professional. For specific, personalised information, consult your healthcare
provider. MSIF does not approve, endorse or recommend specific products or services, but
provides information to assist people in making their own decisions.
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 MS in focus Issue 1 • 2003

Theme seminars I Girasoli is completely accessible and includes

many services and amenities including a
for people with MS swimming pool and health club where
physiotherapy sessions and demonstrations are
and their family provided.

carers Marketing the Programme

A brochure is inserted in the MS Society’s
By Michele Messmer Uccelli, magazine that describes the Theme Seminars and
BA, Department of Social and how a person can select the topic or topics in
which he or she is interested and reserve a place.
Health Research, Italian Multiple The objectives of each course and a full description
can also be found on the MS Society’s website.
Sclerosis Society, Genoa, Italy.
Rationale
The Italian MS Society wanted to provide special
topic seminars for people with MS and their
family carers in a way that could combine a
respite stay with education and information.

Objectives
• The objectives of the Theme Seminars are to
offer education and information on topics that I Girasoli, Tuscany, Italy
are important for people with MS and their
families, and which impact on their daily life and Programme structure
their quality of life. Depending on the topic, a seminar can last
• A second objective is to encourage couples and between two and five days. Expert speakers are
families to take advantage of the location where matched to each topic. In some cases, especially
the seminars are held as a respite from daily life. for lengthier seminars, the facilitators can be two
• Finally, the MS Society wanted to be able to or three experts from different disciplines.
guarantee a relatively worry-free stay in a Methods of instruction range from formal
completely accessible facility. presentation, to role-play, to small group work.
Each seminar also provides an opportunity for
Background participants to share their personal experiences
The Autonomy Project began in 2000. Focus with one another.
groups of people with MS decided the topics that
were most relevant to their lives and these topics Each seminar accepts a limited number of
became the Theme Seminars that are now participants, varying between 10 and 20.
offered throughout the year. The seminar Participants pay their travel expenses, and the
facilitators are experts on various topics relating rest of the expenses are covered by the MS
to MS and focus on providing information that is Society, including room, board and the cost of the
practical for the person with MS and his or her seminar itself.
family carer, as well as on stimulating interaction
and discussion among participants. ‘I think everyone should bring their partner
or spouse to the course because then
The site is named "I Girasoli" (The Sunflowers) they’ll learn just how disabling fatigue
and is located in Tuscany. The MS Society
can be for a person with MS.’ Luca
opened the facility for its first guests in July 2000.
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 MS in focus Issue 1 • 2003

‘I learned a few new strategies • Seminars that last for more than a day require a
for managing my fatigue that lot of participant interaction. This makes it
necessary to limit the number of participants for
I hadn’t thought of on my own.’
any one seminar.
Monica
Suggestions
• If possible, include any advertising materials
Outcomes/results (such as brochure or flyer) with the society
The Italian MS Society held 35 seminars in 2001- magazine to save on postage costs.
2002. All were quite successful, with the • If you decide to charge participants a fee and
favourites being Fatigue and Daily Living, have never offered this type of programme
Rehabilitation and Managing Stress. before, begin with a relatively low fee in the first
round of seminars and be flexible enough to
Expenses reduce or waive it for anyone who cannot
Expenses to be considered should include the afford to pay.
following: • If the MS Society has no holiday facility and no
• Brochures, flyers or other types of advertising resources for using a hotel, cut costs by
and postage organising the seminars at the local level
• Speaker expenses (branches) so people won’t require a hotel stay.
• Participant travel, room, board (or any • Whenever possible, utilise experts who work
combination of these) for the MS Society or who are affiliated with the
• Meeting room Society. (Don’t invite experts who require a
• Coffee breaks stipend!).
• Audio/visual equipment • Develop the daily schedule of the seminar with
several short breaks to help fight fatigue.
Limitations • Make beverages available throughout the
• A relatively limited number of MS societies have seminar.
a holiday home or similar facility at their • Ask participants to complete an evaluation form
disposal. at the end of each seminar, giving their
• If you consider using a hotel for this type of impressions of the seminar itself as well as of
activity it can be quite costly. the facility and the organisation.
• Even using your own facility has its costs (such • Use the evaluations for determining the most
as room, board, coffee breaks, speakers’ appreciated topics, in order to decide to repeat
expenses). those later the same year and which ones to
• Not all experts in the field can take the time to repeat next year.
participate in a seminar of this type, especially
when the topic requires more than one or two If your MS society or organisation is interested in
days. reproducing this programme in your country,
• The seminars require a great deal of further information is available from Dr Roberta
preparation on the part of the experts. Litta, email: [email protected]

Theme Seminars: • Architectural barriers

• Employment and legislation
• Adapting your car
• Managing stress
• Fatigue and everyday life • Employment: new opportunities • Role of good nutrition
• Living with MS • Social assistance: legislation and • Complementary therapies
• Disease modifying therapies rights • Wellness
• Communication problems • Using the Internet • Urinary problems
• Rehabilitation • Aids and adaptive appliances for • Sexuality and intimacy
• Occupational Therapy independence • Cognitive aspects

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 MS in focus Issue 1 • 2003

An introdu
MS in Focus Issue 1 is devoted
to the subject of fatigue. This
introduction is based on a fact
sheet written by the Multiple
Sclerosis Society of Great Britain
and Northern Ireland

FATIGUE and multiple sclerosis

Fatigue limits the lives of 85 per cent of people
with multiple sclerosis. It is important that fatigue
is taken seriously and its management is
considered carefully.

What is fatigue?
MS fatigue is different for everyone; for some it
causes overwhelming tiredness, whilst in others
it worsens symptoms such as visual disturbance,
difficulties with concentration, memory, mobility
and muscle spasms. Fatigue may make it more
difficult to deal with everyday activities.

Primary fatigue
Primary fatigue is experienced as a direct result
of damage to the central nervous system. The
body responds to this damage by slowing down
reactions and thus causing fatigue.

People with MS experience different types of

fatigue including:
• Lassitude: an overwhelming tiredness not
directly related to participation in activity or
exercise.
• ‘Short-circuiting’ fatigue: occurs in specific
muscle groups; for example, the hand after
writing for a short time.
• Heat sensitivity fatigue: a rise in body
temperature can cause fatigue. This kind of

Fatigue is one of the invisible symptoms of MS

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 MS in focus Issue 1 • 2003

ction to fatigue
fatigue can occur due to the seasonal changes society will be able to advise you on where to
in the weather but may also be triggered by find counselling, or may even offer such a
other things; for example, taking a hot bath or service itself.
eating hot meals.
Drug Treatments
Secondary fatigue Primary fatigue management will probably
Fatigue can be experienced as a result of other involve the use of drugs. It may take several
factors that are not necessarily directly related to attempts to find the most suitable drug and dose
your MS. These can include: for you. Because MS fatigue is caused by
• Sleep disturbance: this is often due to damage to the nerves, standard fatigue
symptoms that can be alleviated or lessened; medications are not effective.
for example, spasms, pain, urinary urgency at
night, depression or anxiety. It is common for someone with MS fatigue to be
• Infection: may cause a number of symptoms treated with drugs that are also used in the
that could bring on specific MS fatigue; for treatment of Parkinson’s disease, flu or
example, having a cold or flu may raise your narcolepsy (excessive daytime sleepiness). This
body temperature. is because they have been shown to have an
• Exertion: the increased effort required by the effect on MS fatigue, not because your doctor
body, if mobility or coordination is affected, can thinks you have any of these conditions. Drugs
cause fatigue. for fatigue include:
• Medication: there are many medications that • Amantadine: Side effects experienced may
may cause tiredness or drowsiness as a side include dizziness, headache and difficulty
effect. It is important to be aware of this. If you sleeping.
notice that there is a correlation between a • Modafinil: This is a new treatment still
change in fatigue levels and a change in undergoing clinical trials. Small-scale studies
medication, tell your general physician. have supported its use for MS fatigue. Side
• Depression: may be due to nerve damage or effects can include headaches, weakness and
because of the emotional impact of adjusting nausea.
to MS. There is further information in the article on
• Local environment: the lighting and page 17.
temperature within a work area is crucial, as
poor lighting increases visual effort and heat Non-drug treatments
frequently exacerbates fatigue. Changes to your daily routine can help manage
your fatigue. These changes are best achieved
Fatigue management with the support of occupational therapists,
Fatigue requires a coordinated approach that physiotherapists, your general physician,
involves active participation and involvement neurologist and MS nurse.
from family and colleagues, as well as health
professionals. You may feel that your personal Occupational therapy and physiotherapy
relationships are affected because people do The occupational therapist’s role is to adapt
not understand how fatigue affects you. If you tasks and incorporate strategies that allow daily
would like to talk about the difficulties you are activities to be carried out in an efficient, energy-
experiencing coping with fatigue, it may be worth effective way. There is further information in the
talking to a trained counsellor. Your national MS article on page 9.

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 MS in focus Issue 1 • 2003

Physiotherapists help strengthen, stretch and

relax muscles. This increases joint movements
and improves circulation. They can structure an
aerobic exercise programme for you.

There is more information about physiotherapy in

the article on page 12.

Areas to consider when examining your daily

routine should include:

Rest and relaxation

If there is regular pattern to your fatigue, it is
ideal to take the rest before it is at its worst, as
this enables the body to recuperate more quickly.
Many factors that cause secondary fatigue
can be controlled
Relaxation techniques are available on compact
discs or audiotape, and are an effective method
of complete relaxation. The relaxation method Gadgets such as food processors, remote
used must not require active contracting and controls and headset telephones also limit the
relaxing of muscles, as this can increase muscle effort required in completing activities. Key areas
spasm. where this can help are the kitchen and work
place.
Prioritisation of daily activities
If you make a list of your regular habits and Your national MS society may be able to
routines, some activities will be an obvious recommend sources of equipment and
priority. Others can be shared, altered or even adaptations in order to conserve energy.
eliminated.
Good posture and positioning
Some changes will require the cooperation of Sitting rather than standing is desirable in
others; it is important that everyone understands maintaining a good posture and saves energy
why the changes need to be made and the during lengthy tasks. It is important to consider
benefits they will have to you. your technique when handling or lifting objects.
This helps prevent injury and uses energy
Planning and adapting daily activities effectively.
Daily activities demand varying levels of physical
and mental effort. It is important to balance these Healthy balanced diet
tasks, rather than rushing to complete everything A low fat diet, avoiding heavy, hot meals, is
in one go. Activities are ideally planned around effective in limiting fatigue. Excessive alcohol
regular rest periods. It is best to complete and smoking can also have a negative impact on
essential tasks when fatigue is at its minimum, the level of fatigue you experience.
and also break tasks down into manageable
stages. Appropriate exercise
Gentle aerobic exercise is a positive approach to
Organisation managing fatigue. It promotes muscle efficiency
You can ensure energy efficiency and and strength, as well as increasing stamina. It is
effectiveness during a task, for example by important to consult a health professional before
keeping frequently used items within easy reach. starting any exercise regime.

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 MS in focus Issue 1 • 2003

Managing the
ordinary things
of everyday life

By Susan Forwell, Senior

Instructor, Division of
Occupational Therapy, and
Research Associate, MS Clinic,
Division of Neurology, University
of British Columbia, Vancouver,
Canada.
spontaneous choice’. They also say ‘my memory
FATIGUE and multiple sclerosis
gives up’, ‘I’m feeling guilty about it [fatigue]
Although fatigue is recognized to be the most because I look lazy’, and ‘people don’t believe that
common problem for those with MS and I can’t do something’. These testimonials
researchers are increasing their efforts to demonstrate that fatigue affects psychological,
understand this invisible symptom, there remains cognitive, social, and physical aspects of life for
the challenge of reducing the impact of fatigue persons with MS.
for each person in their everyday life.
Managing non-MS related fatigue
Fatigue can affect all kinds of everyday activities, To manage effectively and make a difference in
such as seeking and maintaining employment, everyday life, the potential causes of fatigue must
going grocery shopping, watching your child’s be assessed rigorously and identified.
soccer game, going out for dinner, taking a
shower or bath, vacuuming your home, going for There is the type of fatigue that is directly related
a walk, planning and making dinner, working at a to MS and is thought to occur because of the
computer, and doing the laundry. damage the disease causes to the protective
sheath around the nerve fibres (the myelin
Research has shown that fatigue can affect sheath). However, people with MS can suffer
adversely activities that are important and from fatigue that stems from other factors that
meaningful not only to the person with MS, but are not related directly to this damage.
also to their friends, family and social network. Table 1 provides a list of causes of non MS-
related fatigue that may be present in those with
People with MS report that when they are MS. Experiencing fatigue as a result of one or
fatigued they ‘can’t do fun things – only the more of these causes is very common among
necessities’ and that ‘it [fatigue] destroys people with MS.

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 MS in focus Issue 1 • 2003

routine, sleep routine, and attending to the

Managing MS related fatigue physical environment.
Fatigue directly related to MS is categorized into
primary MS fatigue, which is thought to be nerve The goal of these strategies is not to correct the
fibre fatigue, and secondary MS fatigue, which underlying mechanism of fatigue. Rather, the
can occur with the onset of disability. focus is to provide tangible strategies for
proactive decision-making, tailored to individual
Currently pharmaceutical agents and non- needs and energy patterns to enable participation
invasive strategies are used to treat MS-related in activities. In Table 2 there are some examples
fatigue. Occupational therapists recommend the and principles of each of these strategies.
following eight non-invasive techniques for
managing fatigue and enabling people with MS Research has shown that if people with chronic
to do the things they want: education about the illnesses such as MS take part in a community-
characteristics of MS-related fatigue, self- based, occupational therapy energy conservation
monitoring techniques, energy efficiency and programme, there is a positive effect on their
work simplification strategies, use of equipment, ability to manage fatigue and improve their
monitoring core body temperature, relaxation quality of life.

Table 1: Potential causes of non-MS related fatigue

Potential causes* Some examples* What to do

Infection • Colds, flu See your doctor to manage
• Bladder infections the infection.
Medications/substances • Side effects of some drugs See your doctor or
• Interaction between drugs pharmacist to review your
• Non-prescriptive drugs complete list of drugs and
• Non-traditional substances substances.
Sleep problems • Difficulty falling asleep See your doctor about
• Disturbed sleep due to frequent sleep problems. If severe,
urination, spasms, pain, sound or seek help from a sleep
movements of others specialist.
• Waking tired or with a headache
Depression • Feeling down, irritable See your doctor.
• Lacking interest in usually stimulating
people or topics
• Feeling inadequate or a failure
Deconditioning • Reduced physical condition of muscles, See your physio-therapist
heart, and lungs due to inactivity who understands MS.
Pain • Back pain See your doctor or other
• Pain due to arthritis specialists to manage the
• Headaches pain.
Stress • Difficulties in your workplace Seek assistance from a
• Family tension counsellor or social worker.
• Financial worries
• Issues related to MS
Breathing problem • Asthma, shortness of breath See your doctor.
* This is not an exhaustive list and there are other causes and examples of non MS-related fatigue. These examples
have been provided to assist description and demonstrate the diversity of fatigue.
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 MS in focus Issue 1 • 2003

Based on the principles and examples Table 2: Non-invasive strategies for MS related fatigue
outlined in Table 2, let’s return to three Strategy Examples and principles
everyday life activities (maintaining
employment, watching your child’s Education • Ignoring, pretending, or ‘fighting it’ does
soccer game, planning and making not promote performance or ability to do
dinner) noted at the beginning of this chosen activities
article. How might these strategies be • One needs to take control of fatigue,
implemented to reduce the fatigue and rather than the fatigue doing the
still enable you to participate in these controlling
important activities? Self-monitoring • Implementation of rest:activity ratio
techniques principles as determined for each
Notwithstanding the need to include situation and individual
individual assessment for specific Energy • Use conveniences such as elevators,
needs, examples of strategies for efficiency disabled parking
maintaining employment in the face of
strategies • Organise tasks to be done in parts, so it
MS-related fatigue might be to
is easy to stop and restart
consider a work assessment by an
Equipment • Use a chair in the shower to sit rather
occupational therapist to ensure your
work environment is ergonomically- than stand
friendly, the temperature is moderate • Walking aids to reduce energy needed to
(air-conditioning or other cooling walk
strategy), and rest breaks can be • Use environmental control units and
incorporated into the workday. remote controls
Body • Sensitivity to elevated body temperature
To ease attendance at a child’s soccer temperature increases fatigue experience, for
game, use prescribed walking aids to instance, after exercise or in hot
help cope with walking distances and environments
uneven terrain, avoid sitting in the sun, • Use cooling garments and reduce sun
use a cooling garment, and sit to watch exposure
the game. The final example, planning Relaxation • Use to rejuvenate the system, do not
and preparing dinner, is a task that
need sleep in all situations; technique
could be segmented to conserve
used depends on individual
energy as an initial fatigue
• There are contraindications to some
management strategy. Prepare dishes
in advance that can be used for a relaxation methods for some people with
couple of meals. Rest before preparing MS
the meal and get the family involved so Sleep routine • Sleep at night in different locations to
as to turn it into a social time and where you rest during the day
reduce the burden on you. • Pay attention to pre-sleep routine
Whatever the approach, it must be Environment • Keep commonly used items on the
understood that daily lives are easiest to reach shelves
increasingly more demanding. Coupled • Set up convenient places to rest where
with the complexity of fatigue in MS, you spend a lot of time, for instance at
one must expect that a comprehensive, work, home and school
multi-strategy approach will be
required in order to make an impact on Your occupational therapist will be able to discuss each of
managing your fatigue in your everyday these strategies with you in detail and help you to select the
life in the 21st century. best combination of strategies to meet your particular needs.

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 MS in focus Issue 1 • 2003

Physiotherapy: a partnership
By Jenny Freeman, Senior
Lecturer, Institute of Health,
Plymouth University and
Honorary Lecturer, Institute of
Neurology, London, UK.

FATIGUE and multiple sclerosis

Physiotherapy can benefit people with multiple

sclerosis, according to a gradually accumulating
body of scientific evidence. Physiotherapy has
also been suggested as an important component
of a comprehensive approach to helping people
with MS manage symptoms such as fatigue.

However, it encompasses an enormous range of

techniques and approaches and we are only just treatment that will make the most impact on the
beginning to scratch the surface in terms of person’s everyday life.
finding out what works best.
Specific treatment approaches vary among
Evidence suggests that some aspects of therapists depending on the resources available,
physiotherapy, such as aerobic and experience of the therapist, and personal
strengthening exercises, promote proper posture preference of both the therapist and the person
and walking, which can help to reduce fatigue. with MS. Treatment can be offered in a variety of
But there can be considerable variation between settings: as an inpatient or outpatient or within
people with MS at different stages of the the community. This flexible approach is essential
disease, and this means that they may not always since every person is unique, and their needs
respond to a particular intervention in the way ever-changing.
that studies suggest they should.
Short bursts of physiotherapy input alone will not
Therefore it is important that there is an active enable an MS person to achieve and maintain
partnership between the physiotherapist, other optimal physical fitness and function.
healthcare professionals, the person with MS Continuous, effective self-management is a vital
and their family to discover what works best for part of the physiotherapy approach in order to
that particular individual and to help them sustain minimise the impact of symptoms such as
the resulting improvements over time. This increased tone (spasticity), fatigue, weakness
requires a frank exchange of information, and pain. This requires an understanding of the
negotiation and co-operation, with everyone nature of the symptoms and the rationale behind
working together to establish the goals of the management approach, as well as the ability

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 MS in focus Issue 1 • 2003

approach

The primary aims of physiotherapy

are to:
• Provide a comprehensive assessment of
physical needs, focusing on posture and
movement
• Facilitate functional independence
• Encourage self-management
• Provide education on a range of issues
including aerobic exercise, moving and
handling, and how to avoid falls
• Prevent secondary complications, such as
pressure sores and the permanent
to apply appropriate strategies and techniques. shortening of muscle and tendon tissue
Such knowledge not only enables the person to • Optimise general physical fitness
have better control of their symptoms but also a
clearer idea of when to seek help. Education is a
key role of the physiotherapist. changes have been maintained, or have
continued to improve, in areas such as the speed
In line with this approach it is important that and efficiency of walking, level of fitness, range
physiotherapy exercises should not dominate of movement, and level of functional
one’s lifestyle but should be integrated into independence. Where things have deteriorated
everyday life. This can be achieved by: they determine whether this is because of
• Adopting postures which are comfortable and ongoing neurological deterioration or for other
maintain good alignment of muscles and joints, reasons.
for example when lying in bed or sitting in a
chair Such assessment is important because
• Using movement patterns which do not restrictions in health care resources mean that
promote asymmetry or increase tone and long-term ongoing input is difficult to justify if
spasms positive changes are not occurring, or if the
• Participation in aerobic forms of exercise improvements made are not maintained.
• Correct use of equipment.
Therefore, ongoing self-management in
‘Carryover’ is a word that physiotherapists often partnership with the physiotherapist is the
use to describe whether improvements gained cornerstone of any successful treatment
are sustained over time. They measure whether strategy.

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 MS in focus Issue 1 • 2003

By Marco Heerings, Nurse

Practitioner, Department of
Neurology, Groningen University
Hospital, Netherlands.
FATIGUE and multiple sclerosis
Over the past few decades people with MS have
tried various methods of alleviating fatigue, even
before it was known that MS fatigue stemmed
from a different cause than ‘normal’ fatigue.

As early as the 1960s it was common to advise

people with MS to bathe in cold water when they
felt fatigued, and for many this treatment did
seem to relieve the symptom and provide
renewed energy. Today we have cooling
garments to achieve the same goal without
requiring the person to get wet, dry off and dress
again every time he or she feels fatigued (a
process which itself requires a great deal of
energy). As the fields of medicine, physiotherapy
and occupational therapy have advanced, people
The role of
with MS now have many options available for
better identifying and managing fatigue. temperature may be the cause of fatigue, the
nurse’s primary goal would be to identify and
MS nurses have an important role in the treat the infection.
assessment and management of fatigue. They
may begin by asking key questions in order to As part of the assessment, it is important the MS
understand the details relating to the person’s nurse asks about the person’s sleep patterns.
symptom. In some cases nurses may use fatigue Typically this can be accomplished with a few
impact scales or questionnaires to measure the relevant questions posed by the nurse during
effect that physical, emotional and psychosocial regular visits. The nurse should ask whether the
factors may have on fatigue. Finding out which person with MS wakes during the night needing
factors are involved can help in determining the to urinate. If yes, how many times? The medical
best intervention and can help nurses in referring term for frequent urination during the night is
the individual to the most appropriate type of ‘nocturia’; it is a problem experienced by many
healthcare professional for further assessment people with MS and is a cause of secondary
and intervention. If the underlying cause of the fatigue. It is also helpful to ask whether the
fatigue is related to physical factors then person’s breathing is interrupted during sleep
physiotherapy and exercise may help to improve and if loud snoring occurs, perhaps pointing to
the person’s fitness. However, if the fatigue may sleep apnoea (interruption of breathing during
be related to depression then a referral for sleep due to temporary obstruction of the
counselling might be the most appropriate airway), which causes restless sleep resulting in
intervention. If an infection with increased body tiredness the following day.

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 MS in focus Issue 1 • 2003

Medications that can cause

fatigue (otherwise known as
lassitude, weariness, lethargy
and tiredness) *
Analgesics
Anticonvulsants
Antidepressants
Antihistamines
Antihypertensives
Anti-inflammatory
Antipsychotics
Asthma drugs
Carbonic anhydrase inhibitors
Cardiac drugs
Diabetic agents
Gastrointestinal agents
Genitourinary agents
Hormone replacement
Immune modulators
Muscle relaxants
Nicotine agents
Sedative hypnotics

the MS nurse Adapted from Physician’s Desk

Reference, 1998, Medical
Economics, Inc.

Another useful tool in assessing fatigue is a diary others more openly. The MS nurse can have an
kept by the person with MS to record the times important role in educating the individual and
and situations in which they experience the family members to understand and deal with
greatest fatigue, and also, perhaps even more fatigue better.
importantly, times and circumstances in which
fatigue is at its minimum. The MS nurse can help It is common for people with MS to take various
the person in getting started with a fatigue diary. medications at the same time. For this reason,
the nurse has a role in encouraging the person to
What can be done to alleviate fatigue? keep a list of all medications, including
An important strategy for learning how to deal complementary therapies, and to continually
with fatigue is talking with other people who update the information. There are many
experience the same symptom. Comparing self- medications taken for other MS symptoms that
management strategies is often of more help can cause or worsen fatigue and it is important
than suggestions from a healthcare professional. for the person to assess his or her medication list
at every meeting with the nurse and neurologist.
It is also important for the person with MS to
communicate openly about his or her fatigue Just because a person has been diagnosed with
with family and friends so that they understand MS does not exclude him or her from having
the problem and can be more helpful when other illnesses, so the medication list must
necessary. Knowing that fatigue is a real include all medications, not only those being
symptom of the disease helps people talk with taken for MS-related problems.

15
 MS in focus Issue 1 • 2003

Being realistic is important different strategies until the individual discovers

Successful fatigue management is never easy. what works best for him or her. The MS nurse can
There are many different strategies for dealing help in assessing fatigue, suggesting strategies,
with fatigue although not all of them are educating, making referrals to other healthcare
appropriate for every person with MS. It is professionals and in setting goals toward optimal
important to be patient and flexible in trying out fatigue management.

Fatigue Diary: Instructions

1. Assign a number from 1 to 10 (1 being very carried two bags of groceries up 15 stairs, walked
low and 10 being very high) for: 300 metres to the neighbour’s house).
• Your level of fatigue 3. List MS symptoms as they appear or worsen
• The value or importance of the activity you are during the day in the Comment column, including
doing (by comparing it to other activities you problems concentrating, visual problems,
would like to do during the course of the day) weakness, dragging foot, pain, numbness, etc.
• Satisfaction you feel with your performance of Include temperature of the environment when
the activity relevant.
2. Describe the physical work done in the Activity 4. Record information every hour that you are
column (eg stood to shower for 10 minutes, awake and write the times you were asleep.
For example:
Name: Date: Describe last night’s sleep:
12:00 Fatigue 7 Value 3 Satisfaction 2 Preparing lunch Blurred vision, very
standing 15 minutes warm in kitchen
Sample form:
Time Fatigue Value Satisfaction Activity Comment
06:00
07:00
08:00
09:00
10:00
11:00
12:00
13:00
14:00
15:00
16:00
17:00
18:00
19:00
20:00
21:00
22:00
23:00
Adapted from Activity Diary, Fatigue and Multiple Sclerosis, Multiple Sclerosis Council for Clinical
Practice Guidelines, Paralysed Veterans of America, 1998.

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 MS in focus Issue 1 • 2003

Pharmacological
treatment
of fatigue
By Elizabeth McDonald, Medical
Director, MS Society of Victoria,
Australia.

FATIGUE and multiple sclerosis Amantadine has been shown in studies to benefit
about one third of patients with MS. A positive
People with MS nominate fatigue as one of the benefit is usually seen within one week.
most common and disabling symptoms of their Amantadine is relatively safe, well tolerated and
disease. Studies indicate that as many as 95 per inexpensive. Its side effects are usually mild and
cent of individuals with MS experience fatigue. may include dreams, hallucinations, hyperactivity
Fatigue in MS, also known as lassitude, is defined and nausea.
as ‘a subjective lack of physical and/or mental
energy that is perceived by the individual or Modafinal
caregiver to interfere with usual and desired Modafinal is a wake-promoting agent used in the
activities’. This fatigue does not appear to be treatment of excessive daytime sleepiness.
related to the type of MS, disease severity or Recent studies using modafinal for MS fatigue
duration; and, to date, the underlying mechanism have shown positive benefits in about two-thirds
is poorly understood. of subjects after about two weeks of therapy. Its
use is recommended for those with moderate to
In this article, the treatment of primary MS severe fatigue or mild fatigue that has not
fatigue is considered. Other articles in this responded to amantadine. Modafinal is relatively
magazine discuss alternative causes of fatigue safe and well tolerated. Its side effects include
that can confuse and even compound the headache, nausea and weakness at higher
problem, such as existing medical conditions, the doses.
side effects of medications or sleep problems.
Pemoline
Recent studies have reinforced that there is a Pemoline is a central nervous system stimulant
definite role for the use of medications in the and has been used to treat MS fatigue, but
treatment of primary fatigue in MS, by way of studies have failed to show significant benefit
altering the brain chemistry. The newer agents using fatigue assessment scales. Pemoline is
focus on promoting normal wakefulness rather poorly tolerated in about 25 per cent of patients
than stimulating the central nervous system. and, as higher doses can cause liver damage,
careful monitoring by regular blood tests is
Amantadine required. It is not recommended as a first-line
Amantadine is an antiviral medication and it has treatment for MS fatigue.
been used in the treatment of MS fatigue since
the 1980s. Its method of action in reducing Other Medications
fatigue is not known. It is considered a first-line Aminopyridines (4-aminopyridine and 3,4-
treatment and is recommended for mild fatigue. aminopyridine) are drugs that improve

17
 MS in focus Issue 1 • 2003

Continued from page 17

nerve conduction in nerves

Questions and
with damage to their protective
myelin sheath (demyelination) FATIGUE and multiple sclerosis
and have shown some benefits
in MS fatigue related mainly to Q. At work I have difficulty in following through with my office
heat sensitivity. tasks because I’m easily distracted and have trouble
concentrating and remembering details, especially in the
Their use is not advocated as afternoon. My colleagues have commented that I seem like a
side effects include the risk of different person in the first part of the day. I’m sure this must
seizures, trigeminal neuralgia* somehow be related to my MS, but how can I manage these
and heart problems. problems before I risk losing my job?

Central Nervous System A. A first step in managing problems with concentration and
stimulants have a very limited memory is to understand whether they occur during a particular
role in the treatment of MS part of the day, or are present more or less all of the time. If it is
fatigue. Side effects include clear that concentration is more difficult in the afternoon, this is a
agitation, anxiety and high sign that the cause could be related to MS fatigue. Energy
blood pressure and the added conservation techniques and fatigue management strategies can
risk of addiction. help in managing these problems.

Antidepressants Q. I’m so exhausted all of the time that I feel very

There is little evidence to unmotivated to have sex with my partner. He feels
support the use of threatened that I’m no longer interested in him and I wonder
antidepressants in MS fatigue if I’m just being lazy. Is this related to my MS and is there
but they may be of benefit in anything I can do about it?
some individuals.
A. Sexual problems can often be related to other MS symptoms,
Summary such as fatigue. Energy conservation and fatigue management
Fatigue is a complex and are important in promoting sexual activity and enjoyment. For
common symptom of MS and some people, implementing strategies such as having sex when
recent advances in the one’s energy level is at its highest, napping before sex, and
treatment of fatigue are minimising positions that may increase fatigue, are sufficient for
proving beneficial. As our lessening the impact fatigue has on a sexual relationship. Others
understanding of the may require pharmacological intervention or a combination of
underlying mechanisms medication and self-management strategies.
increases, so will the potential
to develop more tailored and Q. When our MS society plans seminars and conferences
effective treatments. people with MS are not always satisfied with the
organisation because of how fatiguing an all-day meeting
can be for them. What are some practical tips for helping our
conference attendees enjoy a meeting while minimising
* Trigeminal neuralgia is a disorder of fatigue?
the sensory nerve of the face, in which
sudden episodes of excruciating A. When organising conferences, seminars and courses in which
stabbing pain occur in the cheek, lips, people with MS participate, it is important to choose a location
gums, chin or tongue. that is accessible, has an easy entry and exit, has toilet facilities

18
 MS in focus Issue 1 • 2003

answers
not far from the meeting room, a restaurant, elevators and so on.
It is very important that the meeting space has temperature
control, such as air conditioning. When air conditioning is not
available, electric fans can be helpful. The programme should
include several breaks throughout the meeting, with enough time
for going to the toilet and having a drink. Places to sit and to rest
glasses or plates should be available during breaks. Avoid buffet-
style meals! Arrange for volunteers to be available to help during
breaks and meals. Leave cold water and glasses in the back of
the room throughout the meeting.

Mr Ian Gray, President

of Persons with MS in Victoria, Australia, talks with
Dr Elizabeth McDonald about the fatigue he
experiences with his MS.

How long have you had MS? fatigued more easily with less exercise. It now
My diagnosis was confirmed in 1990, but looking appears to have stabilised.
back I know I had been fighting the disease for
some considerable time prior to this. How does fatigue impact on your lifestyle?
I have to use a wheelchair to preserve energy. I
How has MS affected you? can wake up feeling energetic and after a short
Initially my walking was affected. I noticed that I period of activity become fatigued. It takes me
began to stumble. Over the years the distance I much longer to complete tasks. I have to pace
could walk became less. I became extremely myself to do anything.
fatigued after relatively minor exertion and
noticed that my memory was not as reliable as Has your fatigue had an impact on your
before. I retired from work in April 1998. family and friends?
Yes, it restricts activity for everyone, but now we
The fatigue you experience – can you adapt and my family and friends are all
describe it? supportive.
The fatigue is like an overwhelming feeling of
unnatural tiredness that exacerbates all my MS Do you rest when tired or push on?
symptoms to the extent that I can no longer Sometimes I push on, particularly if I am doing
function. Rest returns me to normality. The time something I enjoy. For instance, when gardening
this takes depends on the ambient temperature. on my hands and knees, if I overdo things I can
get so fatigued that I cannot get up without help.
Has your fatigue changed since diagnosis? Then it takes a little longer to recover.
My fatigue has increased. Initially I hardly noticed
it; then with secondary progressive MS I became Ian, thank you for sharing your story with us.

19
 MS in focus Issue 1 • 2003

Book Reviews
300 Tips for Making Life with However, there are also many other
Multiple Sclerosis Easier tips that can only be put into practice
by Shelley Peterman Schwartz in the USA, where the author lives in
her own home.
Review by Elsa Teilimo, Finnish
Representative Persons with MS She is apparently well to do and many
International Committee. suggestions reflect her way and
This book has tips, advice and standard of living.
techniques to help people who
are seriously disabled with multiple What is not taken into consideration is
Demos Medical sclerosis (MS) find ways to the situation of people who do not
Publishing Inc, USA. manage an ordinary but challenging own their own homes and who are
1999. Price $16.95. day. subject to restrictions regarding
ISBN:1-888799-23-4 structural changes to their
Written by Shelley Peterman Schwartz, accommodations, which is common in
who has MS herself, the book deals many parts of the world.
with the different situations that arise
in everyday life, such as In addition, many of the useful
housekeeping, dressing, shopping and addresses in the last chapter list toll-
meal preparation. She has put an free telephone numbers that are only
enormous amount of work and accessible if calling within the USA. To
imagination into writing this easy-to- be more accessible for non-
read guide. Americans, it would have been helpful
to have website addresses as well as
There are some ingenious tips, such postal addresses.
as putting your medication bottle into
your slippers at bed-time so that you In summary, the book is easy to read
don’t forget to take your pill in the and provides helpful information,
morning, or using rubber bands although non-American readers may
around your drinking glass to give you find that many tips are not applicable
a better grip. in their own countries.

Multiple Sclerosis: The coverage of topics and manner of

Questions You Have – The presenting information make it a
Answers You Need (2nd Edition) valuable resource.
Edited by Rosalind C. Kalb.
Each of the 17 chapters, written by an
Review by Tom Houle, US expert in MS, addresses a specific
Representative, Persons with MS topic through a question/answer
International Committee. format.

Demos Medical This is a solid reference book that In addition, each chapter provides a
Publishing Inc, USA. should be made available to anyone list of follow-up readings, and six
2000. Price $39.95. with MS, carers, and others working in appendices at the end of the book
ISBN: 1-888799-43-9 the field of MS. Its comprehensive add to the wealth of information. Two

20
 MS in focus Issue 1 • 2003

areas lacking coverage are on issues for carers more advice and encouragement on how to
and on complementary and alternative translate those words into practical action.
medicines. While information is present on each
topic, separate chapters would have added to Lastly, it should be noted that this book was
their importance. written by North American specialists, and while
the medical and technical information may apply
Of necessity, authors occasionally use scientific universally, some topics of a social nature,
terms and more explanation of these terms such as insurance, psycho-social issues,
would be helpful for those with less technical employment and long term care, tend to be
knowledge. culturally specific and may have less value to non-
Western cultures.
In some chapters it would help if the author had
given additional emphasis to ways people with Notwithstanding these comments, there is much
MS could use the information. While the to recommend this guide for those seeking
information is sound, readers would profit from substantial knowledge about MS in one book.

Web site review

Jooly’s Joint: www.mswebpals.org
By Sandy Burnfield, Consultant in Child and
Family Psychiatry, Hampshire, UK.

When I went on-line in 1997, Jooly’s Joint (JJ)

was the only site for people with MS I could find. separate pages on key subjects. There are
Five years later it is still there and has matured pages with links designed for people with MS,
into one of the most useful international sites for people who live or care for us, as well as a
there is on the Net for people with MS, as well as newsdesk, bookstore, and a fun page where
family and friends. people can enter competitions, download a
screen saver or buy JJ T-shirts.
So what makes this such a cool site? I think it is
because it is managed and cared for by just one There are several other ways that JJ offers help
person – a young British woman, Julie Howell, and support to people who have MS, including a
who has MS herself. chat room, and a place for people to make
webpals or show each other their pictures.
Julie provides many and varied ways for people
to use the site, without becoming dominant or I spent some time in the chat room – this was
intrusive – on the contrary she keeps in the busy, international and supportive – messages
background and encourages others to explore were easy and quick to send to the group.
JJ in their own way and to share experiences of
MS together. This is not a site for wish-fulfilling fantasists or
those with a chip on their shoulder – thank
The JJ site is responsibly run, providing accurate goodness – there are too many of these sites
information and links to genuine evidence-based already!
websites where issues can be explored in more
depth. Jooly’s Joint is a friendly, informative, and
positive site for people involved with MS. Take a
The site is well laid out and easy to use with look for yourself at www.mswebpals.org

21
 MS in focus Issue 1 • 2003

MSIF: An overview
By Christine Purdy, CEO, MSIF
Sylvia Lawry, an extremely dynamic woman constitution. Now MSIF comprises 42 Member
entirely committed to eradicating multiple Societies, and its Secretariat is in regular
sclerosis, established the US MS Society in contact with societies in over 30 other countries.
1946 after her younger brother was diagnosed
with the disease. Then in 1948, with $25,000 The dual fundamental purposes behind
seed money she helped set up the Canadian MS establishing an international movement were to
Society. MS societies started forming share information and research and to stimulate
throughout Europe soon afterwards. the development of struggling national societies.
It is altogether fitting, therefore, that MSIF’s
Two decades later, in 1967, delegates from 17 major international research project is called The
national MS societies met in the House of Lords Sylvia Lawry Centre for Multiple Sclerosis
in the UK to hammer out the final details of a Research.
constitution and by-laws for a federation of
national societies to fight MS at an international MSIF is the Member Societies’ unified attack on
level. MS reaching beyond national and regional
boundaries. MS in Focus contributes to the
Shirley Temple Black was one of those original international sharing of information in this global
motivators and signatories to the new struggle.

Sylvia Lawry Centre for Multiple Sclerosis Research

By Leila Terry, Research Administrator, MSIF

The SLCMSR is MSIF’s key research project. markers for the disease. Compared to current
The project was set up, after stiff international methods, these markers will predict more reliably
competition, at the Institute of Statistics and how a person's MS will develop.
Medical Epidemiology, Technical University of
Munich, in February 2001. The SLCMSR has already collected and started
to pool 41 data sets (over 14,000 patients and
The Centre relies on the effective combination of nearly 55,000 patient years). All the major MS-
computer science, mathematics and medicine. related pharmaceutical companies have
Its ambitious aim is to speed up the development contributed.
of future MS therapies and in turn make them
less costly. The project, currently unparalleled in medical
research, is an excellent example of what can be
Using mathematical models based on a collection achieved when industry and academics work
of placebo data from clinical trials and natural together.
history data, the SLCMSR’s first objective is to
identify clinical and magnetic resonance imaging To find out more, visit www.slcmsr.org

22
 MS in focus Issue 1 • 2003

Persons with MS
International
Committee

An Introduction by the
Chair Susan Tilley
People with MS can become actively involved in Sue Tilley, Chair, Persons with MS International
the global MS movement and join MSIF’s Committee
various projects and programmes by being
elected to the Persons with MS International 2001, the Committee contributed to the
Committee (PwMSIC). The Committee ensures success of the Persons with MS day at the
MSIF can speak out with a global voice on Melbourne Conference in Australia. One of the
behalf of people with MS worldwide. most moving talks was given by the
Committee’s former chair, John Golding, and his
In Spring 2002, I was elected to be the wife, Elizabeth, who spoke intimately about
Committee’s new Chair. I am delighted to fill this changes they have made in their lives to deal
role and am really looking forward to meeting with John’s MS.
the challenges ahead. The Committee has the
opportunity to be involved with many exciting Following the success of the Persons with MS
projects, and to direct the future growth of Day in Australia, another is planned for the
MSIF to ensure that it truly meets the needs and MSIF 2003 International Conference ‘Gateway
aspirations of people affected by MS to Progress’ that is taking place in Berlin,
worldwide. Germany, 21-25 September 2003.

Amongst the key projects that the Committee To find out more about the PwMSIC and their
supports are the MSIF conferences. In October activities visit the MSIF website: www.msif.org

Introducing the International Medical and MSIF to key professional organisations such as
Scientific Board the World Health Organisation and the World
By Leila Terry, Research Administrator, MSIF. Federation of Neurology.

MSIF’s International Medical and Scientific Recently, four key IMSB members published
Board (IMSB) is an extraordinary group that Multiple Sclerosis: The Guide to Treatment and
brings together the expertise of almost 100 MS Management, which may now be viewed online
professionals. Their aim is to promote, support at www.msif.org.
and guide MSIF’s research, professional
education and information services. Indeed it ‘…this little book provides a rigorous,
was IMSB that led the way to establishing the comprehensive and very readable summary of
SLCMSR. treatments currently available for MS. I think
every library should have a copy, and I am
Each Member Society nominates up to two delighted that it is being made available on the
members, ensuring international scientific Internet.’ The International MS Journal, issue
contacts and credibility for MSIF. IMSB also links 9:3, 2002.

23
 MS in focus Issue 1 • 2003

MSIF 2003 International Conference

21-25 September 2003, Estrel Conference Centre, Berlin, Germany. Organised by Deutsche Multiple
Sklerose Gesellschaft (DMSG) and MSIF.
Contact: DMSG, Bundesverband e.V., Küsterstrasse 8, D-30519 Hannover, Germany.
Tel: +49 (0)511 968 340. Fax: +49 (0)511 968 3450. Email: [email protected].
Website: www.dmsg.de

MS Awareness Days/Weeks around the world

Australia MS Week: first week in June www.msaustralia.com.au
Belgium MS Week: second/third week in September www.ms-sep.be
Brazil MS Week: 26-30 August www.abem.org.br
Canada MS Month in May www.mssociety.ca
Czech Rep. MS Day: during June www.roska-czmss.cz
Denmark MS Day: 24 May 2003 www.scleroseforeningen.dk
Finland MS Week: 12-18 November www.ms-liitto.fi
Hungary MS Day: during September www.sm.alba.hu
Ireland MS Week: first week in May www.ms-society.ie
Italy MS Week: 17-25 May 2003 www.aism.it
Malta MS Week: first week of May No website
Netherlands MS Day: in second week of November www.msweb.nl
New Zealand MS Week: 18-24 September www.mssocietynz.co.nz
Norway MS Day: last Saturday in August www.ms.no
Poland MS Day: 6 December http://ptsr.idn.org.pl
Portugal MS Day: 8 December www.spem.org
Romania Second weekend in May http://msromania.bizland.com
South Africa MS Day: 6 July www.kznms.org.za
Spain MS Day: during December www.aedem.org
Turkey MS Week: third week of May No website
UK MS Week: 6-13 April 2003 www.mssociety.org.uk

24
 MS in focus Issue 1 • 2003

MSIF Member Societies Worldwide

Argentina Cyprus Iceland
Esclerosis Múltiple Argentina Cyprus Multiple Sclerosis MS Felag Islands
Tel: +54 1 4 831 6617 Association Tel: +354 568 8620
www.ema.org.ar Tel: +357 22 423644
India
Australia Czech Republic Multiple Sclerosis Society of
Multiple Sclerosis Australia Unie Roska ceská MS India
Tel: +61 2 9955 0700 spolecnots Tel: +91 22 444 2067
www.msaustralia.org.au Tel: +420 2 41728619
www.roska-czmss.cz Iran*
Austria Iranian MS Society
Österreichische Multiple Denmark Tel: +98 216490945 or
Sklerose Gesellschaft Scleroseforeningen +98 216951187-8
Tel: +43 1 40 400 3121 Tel: +45 36 46 36 46
www.ms-ges.or.at www.scleroseforeningen.dk Ireland
MS Society of Ireland Ltd
Belgium Finland Tel: +353 1 269 4599
Ligue Nationale Belge de la Suomen MS-liitto www.ms-society.ie
Sclerose en Plaques/ Tel: +358 2 439 2111
Nationale Belgische Multiple www.ms-liitto.fi Israel
Sclerose Liga Israel MS Society
Tel: +32 2 736 1638 France Tel: +972 3 560 9222
www.ms-sep.be Ligue Française contre la www.mssociety.org.il
Sclérose en Plaques
Brazil Tel: +33 1 53 98 98 80 Italy
Associação Brasileira de www.lfsep.com Associazione Italiana Sclerosi
Esclerose Múltipla Multipla
Tel: +55 11 5533 0582 Germany Tel: +39 010 27 131
www.abem.org.br Deutsche Multiple Sklerose www.aism.it
Gesellschaft
Canada Tel: +49 511 9 68 34 0 Japan
MS Society of www.dmsg.de Japan Multiple Sclerosis
Canada/Société canadienne Society
de la sclérose en plaques Greece Tel: +81 3 3847 3561
Tel: +1 416 922 6065 Greek MS Society
www.mssociety.ca or Tel: +30 1963 3383 Latvia*
www.scleroseenplaques.ca www.visit.to/mssociety Latvijas Multiplas Sklerozes
Asociacija
Chile* Hungary Tel: +371 7 351 792
Corporación Chilena contra la Hungarian MS Society
Esclerosis Múltiple Tel: +36 22 314 198 Luxembourg
Tel: +56 2 2765556 www.sm.alba.hu Ligue Luxembourgeoise de la
Sclérose en Plaques
Tel: +352 40 08 44
www.webplaza.pt.lu/public/mslux

25
 MS in focus Issue 1 • 2003

Malta* Romania* Turkey

Multiple Sclerosis Society of Uniunea Nationala a Turkiye Multipl Skleroz Derneg
Malta Organizatiilor de Multipla Tel: +90 212 275 2296
Tel: +356 418 066 Scleroza din România
Tel: +40 59 41 71 36 UK
Mexico* The Multiple Sclerosis Society
Esclerosis Múltiple México Slovakia* of Great Britain and Northern
Tel: +52 55 56 59 24 19 Slovensky Zväz Sclerosis Ireland
Multiplex Tel: +44 20 8438 0700
Netherlands Tel: +421 033 534 4581 www.mssociety.org.uk
Multiple Sclerose Vereniging www.stonline.sk/szsm
Nederland USA
Tel: +31 70 374 7777 Slovenia National Multiple Sclerosis
www.msweb.nl Zdruzenje Multiple Skleroze Society
Slovenije Tel: +1 212 986 3240
New Zealand Tel: +386 1 568 72 99 www.nationalmssociety.org
MS Society of New Zealand www.zdruzenje-ms.si
Inc. Zimbabwe
Tel: +64 4 499 4677 South Africa Multiple Sclerosis Society of
www.mssocietynz.co.nz South African National Zimbabwe
Multiple Sclerosis Society Tel: +263 4 740 472
Norway Tel: +27 11 673-9643
Multippel Sklerose www.kznms.org.za *Associate Member
Forbundet I Norge
Tel: +47 2296 3580 Spain
www.ms.no Asociación Española de
Esclerosis Múltiple
Poland Tel: +34 91 4481261
Polskie Towarzystwo www.aedem.org
Stwardnienia Rozsianego
Tel: +48 22 630 72 20 Sweden
http://ptsr.idn.org.pl Neurologiskt Handikappades
Riksforbund
Portugal Tel: +46 8 6777010
Sociedade Portuguisa de www.nhr.se
Esclerose Multipla
Tel: +351 21 837 6610 Switzerland
www.spem.org Schweizerische Multiple
Sklerose Gesellschaft
Tel: +41 1 466 69 99
www.multiplesklerose.ch

26
 The World of MS website
Visit the ‘World of MS’ website. Here you will find wide in the MS movement can subscribe to the
a great deal more than a broad compilation of MSIF magazine, MS in Focus
general knowledge on MS: • People with MS can share information with
• Researchers will find up-to-date listings and a others in similar situations through the ‘People
database of latest medical and scientific papers with MS’ pages that include life stories under
• Healthcare professionals will benefit from MS: ‘People Profiles’.
The Guide to Treatment and Management, a
comprehensive evaluation of frequently used The website is multilingual, with many sections in
treatments in the management of MS and its English, German, Spanish and French. Further
symptoms languages are also planned.
• People interested in what is happening world- www.msif.org
 MS in focus
Skyline House Tel: +44 (0)207 620 1911
200 Union Street Fax: +44(0)207 620 1922
London Email: [email protected]
SE1 0LX
UK MSIF is a non-profit charitable
organization 501(c)(3) IRC chartered in
the State of Delaware, USA, in 1967

Subscriptions
The Multiple Sclerosis International Federation
produces MS in focus twice a year. With an
international cross-cultural board, easily
accessible language and free subscription,
MS in focus is available to all those affected
by MS worldwide. To subscribe, log on to
www.msif.org

With many thanks

MSIF would like to thank Serono for their
unrestricted grant which made the production of
MS in focus possible

As a global leader in biotechnology, Serono understands and regulate inflammation. Inflammation in the brain
well its responsibility towards both present and future and spinal cord is a major cause of MS manifestations.
generations and is committed to bringing innovative and
effective treatment options to people suffering from Serono’s extensive clinical study programme in multiple
multiple sclerosis. sclerosis also helped the medical community understand
more about the disease itself.
To identify the optimal treatment strategy for MS, Serono
has conducted several clinical trials using interferon beta These insights are being applied to our research and
in different dosing schedules in relapsing-remitting MS, discovery efforts as we look for even better therapies and
early MS and secondary progressive MS. perhaps, one day, find a cure.

The role of interferon beta in the body is to help co-

ordinate the immune system in its fight against infection