Asian MS Newsletter

ISSUE 1, 2016

.A Message From The Editor

Where on earth is this year
going? Time is flying by and
were already more than half way
through 2016! Lots of things
have been happening in the
world of MS, with stem cell
therapy hitting the headlines
again. You can find out more,
and also what the latest research
is for MS later in this newsletter.
Sometimes it can be difficult to talk about certain MS
symptoms and we at Asian MS would like to make sure
youre fully informed and able to approach your
healthcare team, even when you may find things a bit
embarrassing. Thats why weve decided to cover bladder
issues in this edition. Lets make wee something we
CAN talk about!

HIGHLIGHTS OF THIS ISSUE.......

All the usual useful numbers and

contacts
Lets talk about wee: Bladder
issues in MS

Carers week round-up

Stop MS appeal could you be a
Stop MS pioneer?

The Ms. Songbook Cycle

singing to help people with MS

Fundraising for Asian MS

News and Happenings
including an MS research day, the
MS Awards and MS Life.

Tea with Dee Dee chats with Ila

Finally, the deadline for submissions for the next

newsletter is 19th August 2016. Please email submissions
to asianms@mssociety.org.uk or contact me via
Facebook, details below!

and Ramesh Gangotra

~Trishna x

clinical trials

MS in the News
The latest research studies and

www.facebook.com/trishnabharadia2015
@TrishnaBharadia

Page 1

Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales
(07451571)

Asian MS is a national support group for Asians

with MS, their carers, friends and family. We seek to
increase awareness and dispel ignorance of MS in
the Asian community, as well as put fun and dignity
into the lives of Asians with MS and their carers. We
also raise money for people affected by MS within
the Asian community. We produce online and
printed information in various languages and offer
an interpreting service.

Rani Kaur - Support Officer & Acting Chair

Trishna Bharadia - Newsletter Editor
Abul Kamali - Website Officer
Ila Gangotra Committee Member

USEFUL INFORMATION & QUICK LINKS

General and Membership Enquiries:
asianms@mssociety.org.uk

MS Therapy Centres:
http://www.msntc.org.uk/

Asian MS Website: http://www.mssociety.org.uk/mssupport/support-groups/asian-ms

Shift.ms (an online community for younger

MSers): http://www.shift.ms/index.php

Asian MS newsletters online:

http://www.scribd.com/AsianMS_SupportGroup

MS Research Blog: http://multiple-sclerosisresearch.blogspot.com

MS Society Website: http://www.mssociety.org.uk

Carers Trust: http://www.carers.org/

MS Register: http://www.ukmsregister.org
Map of UK public toilets:
http://greatbritishpublictoiletmap.rca.ac.uk/

TELEPHONE SUPPORT
The MS Helpline is available to give free and
confidential information and support to
anyone affected by MS from 9am-9pm,
Monday-Friday. The helpline number is
freephone 0808 800 8000. Please specify if
you would like to speak with someone from
Asian MS and you will be directed to one of
our support officers.

PUBLICATIONS
For a list of all the MS Societys key publications
showing the latest editions and revisions, and to
order, visit the website: http://oscos2.bmcics.com/mss2/public/index.php
There are also publications available in many of
the Asian languages including Bengali, Hindi,
Gujerati, Punjabi, Farsi and Urdu.

http://twitter.com/AsianswithMS
http://www.facebook.com/AsiansWithMS
Page 2

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(07451571)

LETS TALK ABOUT.. WEE (i.e. bladder issues)

Talking about toilet issues
can be difficult,
embarrassing and can cause
many people anxiety.
However, Asian MS is keen
to ensure that its members
are fully aware and informed of the bladder
problems that can occur with MS and what types
of treatments are available, as well as some
useful links and nuggets of information that may
be of help. If you are experiencing bladder
issues, do have a conversation with your
healthcare team to see how best it can be
managed.

There may also be problems with the ability to hold

on. This is called urgency and if severe can result in
urgency incontinence.
When there are emptying problems, the bladder
muscles do not coordinate, which means urine flow
can be interrupted and poor. That may lead to the
bladder not emptying completely. If this happens, you
might not be able to feel it. However, if you need to
visit the toilet again a short time later and around the
same amount of urine is being passed, it may be a
sign that there are issues with your bladder emptying
properly. If urine is left in the bladder (known as the
residual), it can stimulate more bladder contractions
and add to frequency and urgency problems.

Two main types of bladder problems can occur in

MS emptying and storage. Doctors are unsure
as to why some people experience one but not
the other, or why some experience both. Its
important that urinary tract infections (UTIs) are
ruled out, as symptoms can be very similar to
MS-related bladder issues.

MANAGING BLADDER PROBLEMS

There are many ways that bladder problems can be
managed and its important that you work with your
healthcare team to find what is the most suitable for
you. Almost every part of the UK offers specialist
continence clinics on the NHS, to which most people
can self-refer. These clinics can offer information and
WHAT CAN HAPPEN?
confidential advice. To find your nearest service,
When everything is working correctly, the bladder contact the Bladder & Bowel Foundation:
becomes full and a warning system between that www.bladderandbowelfoundation.org
and your brain tells you that you need to go to
the toilet. Usually, someone can hold it until
There are a number of drug treatments available for
they reach a toilet. The bladder muscles must
managing bladder problems, depending on what the
then work in coordination when emptying and
issue is. Anti-cholinergenic drugs can be used for
storing i.e. one relaxes while the other contracts. treating an overactive bladder, for example.
When there are storage problems, the nerve
pathways in the spine are interrupted, which
means just a small amount of urine in the bladder
can result in it contracting. This leads to frequent
urination
Page 3

The most effective solution for incomplete bladder

emptying is intermittent self-catheterisation. This is
where a catheter (a thin plastic tube) is inserted into
the urinary opening to drain the bladder. Most people
will do this two to four times a day.

Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales
(07451571)

Other treatments available include Botulinum toxin

(Botox) injections into the bladder wall, nerve
stimulation, vibrating bladder stimulators and
pelvic floor exercises.
TIPS FOR MANAGING DAY-TO-DAY

One for the ladies: MS Society blogger Shana

Pezaro talks about a type of tights that helped in the
day-to-day management of her bladder problems.
**Warning, contains a graphic image**
https://www.mssociety.org.uk/mssupport/community-blog/2016/06/crotch-lesssuspender-tights-have-changed-my-life

Drink more!: Drinking more can improve bladder

issues. If you are dehydrated, the
**According to a note on the MS Society website, both
cranberry extract tablets and cranberry juice have been
urine becomes more concentrated,
studied in various research trials, however, no
which can irritate the bladder and
conclusive evidence was found that either can help to
make you more prone to UTIs. To
prevent or treat UTIs in people who have MS**
get used to drinking more, increase your intake
slowly and do it on days when you are at home or
when you are within easy reach of a toilet. Its also WHAT DO YOU DO IF YOUR BLADDER
important to drink plenty as this can help to avoid PROBLEMS ARE SEVERE?
constipation - a full bowel can obstruct urine flow
or bladder capacity.
Although first-line treatment works well for lots of
people, there are some people in which it doesnt.
Get a RADAR key: The RADAR National Key
When there are more lesions affecting the spinal
Scheme is run by Disability Rights UK
cord, management of bladder symptoms in MS can
and gives you access to locked disabled become harder. This is often linked to how mobile
toilets nationwide. They cost 4.50 (although your someone is.
MS nurse or continence nurse may be able to
provide you with one) and are available from:
INDWELLING CATHETERS
https://crm.disabilityrightsuk.org/radar-nks-key Where mobility is a severe problem, an indwelling
Explore continence products: Protective pads
can be of help for day-to-day management of
bladder problems. Penile sheaths might be helpful
for men (they fit over the penis and take urine
away via a tube to a small bag, which is attached
to the leg). More information is available via the
Bladder & Bowel Foundation.
Avoid bladder irritants: Some food and drinks
have been linked to worsening the symptoms of
urinary frequency, urgency and urge incontinence.
You might find that eliminating some of them from
your diet may be helpful to see if they improve
your symptoms. Some examples include alcohol,
tea, coffee, fizzy drinks (especially those with
artificial sweeteners) and some fruit juices.
Nicotine can also irritate the bladder, so if youre a
smoker it might be wise to stop!
Page 4

catheter might be an option. This is a catheter that is

left in place. There are two types available (suprapubic and urethral) and you would need to discuss
with a specialist (urologist) which would be best in
your particular case. Some types of surgery might
also help.
Its important to remember that lots of people with MS
experience bladder problems at some point. Dont be
afraid to talk to your healthcare team because they are
experienced in these issues. For more information about
everything to do with bladder problems in MS you can
visit:
https://www.mstrust.org.uk/a-z/bladder-problems
https://www.mssociety.org.uk/what-is-ms/signs-andsymptoms/bladder

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TALKING TO MPs ABOUT CARE

One of our Asian MS roving reporters was invited by the MS
Society to a parliamentary reception that was being held in
Westminster as part of Carers Week 2016 (6th-12th June).
She is one of the many people in the country who considers
themselves to be an informal carer. Her sister has MS and
she cares for her on an ad hoc basis, according to her sisters
day-to-day needs.

Image from www.carersweek.org

Around 6.5 million people in the UK offer unpaid care for

an older, disabled or ill member of their family or friend.
Carers Week is nationwide campaign, supported by
seven major charities. It aims to increase the awareness
of caring and bring to light the challenges faced by
carers, in addition to recognising their huge contribution
to communities and families across the UK.
This year, Carers Week focused on developing Carer
Friendly Communities places carers are supported by
local services and people so they are able to look after
loved ones to the best of their abilities, at the same time
as recognising that carers are individuals who have their
own needs.

This was a drop-in event for MPs to speak

with carers from all over the country, to
hear first-hand experiences of caring and
to give carers a chance to speak directly
with MPs about what they can do to help.
It was great to hear examples from MPs
where they have supported people with
MS and their carers in their constituency
and what they are
doing to help.
However, they
recognised that there
was more that could
be and needed to be
done. The MS carers
spoke with passion
and vigour and highlighted many areas
with the MPs that needed addressing.
Some of these areas included how to help
young carers, how to make care
coordination easier, transport services
and accessibility to health and social care
services in rural areas.
One of the main areas that was discussed
with the MPs was employment rights for
carers. There is legislation to protect
carers, with the Equality Act 2010 and the
Carers Bill. However, MPs agreed that
more needed to be done to protect people
on a number of issues.

Carers can fall sick. Not just with a

common cold or a seasonal virus, which
in themselves present challenges for the
As part of Carers Week 2016, a networking event for MPs and carers and those they care for, but with
carers was held at Portcullis House, Westminster on 7th June. the rise of chronic conditions and mental
The MS Society alongside Carers UK, the Carers Trust,
health disorders, there are few people
Macmillan, MND Association, Age UK and Independent
who will be left untouched by some form
Age attended the event.
of illness.
Page 5

Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales
(07451571)

So how do we protect carers in employment who

GET TO KNOW MORE ABOUT
also have a chronic condition? The Equality Act
specifically names MS as a condition, which means
CARERS AND CARING
everyone from the point of diagnosis is protected by
Caring is the best
the Act. The Act also specifically names cancer and
HIV. But what about other conditions? Some MPs
job Ive ever had!
agreed that although the Equality Act is an important
read Richards story.
piece of legislation, there are failings within it,
He is the husband of
primarily when it comes to protecting people with
and carer for Janis
many types of chronic and fluctuating conditions.
Winehouse (mum of Amy Winehouse). Theyve
MPs recognised that more is needed to be done to
been together for seven years.
provide legal protection for these people.
It was also recognised that although more legal
protection was required, a shift in employment and
business culture and mentality towards carers was
needed. This shift must come from society as a
whole as well as from within businesses at all levels
in an organisation from the board of directors down
to the individual who is the manager of one person.
As the pace of life and business has become faster,
and with the rise of technology creating a shift in
how business is conducted, the distinction between
work and personal time can become blurred with
access to emails 24/7, mobile phones and
globalisation with trading across time zones. How
can employers play a greater role to look after the
wellbeing of their employees, get the best out of
them and also acknowledge and empower them to
carry out caring responsibilities?
The event raised many questions with MPs and it
was a great event to put forward some of the areas
in which MPs could influence and champion the
needs of carers, both in their constituency and at a
national level.
Want to chat with other Asians who are
affected by MS? Check out the Asian MS
Facebook Group Its a private group so
posts and comments wont show up in your
newsfeed and we chat about all sorts of
issues affecting people with MS.
Page 6

The Odd Pigeon is a blog written by Olivia, a

young carer for her Mum, who has MS. She was
recently surprised by MS Society ambassador
Oritse Williams, who was also a young carer for
his Mum, who has MS too.

Zena Nicolaou, winner

of the Carer of the Year
category at the MS
Awards this year, cares
for her mother Niki who
has relapsing remitting MS. She talks about why
caring matters to her.

Find out more about the Equality Act :

https://www.gov.uk/guidance/equality-act2010-guidance

The MS Society has an entire section of its

website dedicated to carers. You can check it out
here: https://www.mssociety.org.uk/mssupport/for-carers

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STOP MS!
Stop MS is an MS
Society research
programme with big
fundraising targets.
Decades of scientific
advances, many of
which have been funded
by the MS Society, have
revealed what needs to be done, as we enter an era
where incredible breakthroughs are on the horizon.
While the MS community, the MS Society and scientists
are all ready, the funds arent yet available to make it
happen. This is why the MS Society is looking to raise
100 million to do so.
The programme focuses on four areas of research:
progression, treatment, prevention and management.
Each area will concentrate on specific things that in the
long term will hopefully help those living with MS.
STOP MS PIONEERS
The programmes pioneers underpin the Stop MS
research programme through their funding of critical
research infrastructure. This infrastructure includes:
talented young scientists, the MS Tissue Bank, the MS
Register, the UK MS Clinical Trials Network, and the
Research Programme Team.
You can become a pioneer by donating 5,000 or more
per year to the programme, leading the way towards
treatments to Stop MS. Your donations will give the
Appeal critical momentum and help the Society to
leverage significant further support.

Page 7

As a pioneer, you will get the chance to meet

scientists who are leading the world of MS
research. You will receive: guided tours of
research facilities, invitations to exclusive events
including the annual Pioneers Reception and Stop
MS Lecture, breaking news alerts and twice-yearly
updates about Stop MS progress, and recognition
in our Pioneers roll-call and a thank you in the MS
Societys annual report.
For more information, visit:
http://stopms.mssociety.org.uk/

MS Society Ambassador
Trishna Bharadia, who is also
an Asian MS committee
member, attended the
inaugural Stop MS annual
lecture held on 25th May 2016
at the Royal Society of Medicine in London.
Accompanying her was Ila Gangotra, Asian MS
committee member. The evening was an
opportunity to listen to eminent neurologists and
researchers talk about the latest research in MS,
with a particular focus being on progressive MS,
fatigue, stem cells and the value of the MS tissue
bank. The lecture was headed by Prof. Alan
Thompson and he was joined by a panel of guests
that included Prof Robin Franklin, Dr. Don Mahad,
Dr. Caroline Sincock and Prof Richard Reynolds.
There was a Q&A session chaired by BBC Health
Correspondent Hugh Pym. Trishna says, It was a
very informative and interesting event, with lots of
questions being raised about the future of MS
research. Invaluable!

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SINGING ABOUT MS
Ms. A Song Cycle, is a Every day, 14 people in the UK are diagnosed with
new musical theatre
MS, which is why Rory
album that has been
decided to include that
conceived by lyricist Rory
number of songs on the
Sherman, whose Mum
album. He then invited 14
and sister both have MS.
composers from around the
The album takes the
world to produce the music,
listener on a journey
while he wrote the lyrics to
inspired by the stories of 14 women affected by MS and
the songs. He then
all proceeds from sales will go to the MS Society.
approached 14 leading West
End actresses to sing them, including Preeya
Asian MS committee member Ila Gangotra, MS Society Kalidas, Caroline Quentin, Laura Pitt-Pulford and
Ambassador and Asian MS committee member Trishna Janie Dee.
Bharadia and Asian MS member
Kanti Kalidas were all present at
The songs are poignant and sensitive, as well as
the launch of the album in May at being light-hearted and humorous at the right
LEscargot, London. Kantis
times. They tell of the different aspects of living
daughter Preeya (Bombay
with MS, whether its various symptoms, caring for
Dreams, Bend It Like Beckham
someone with MS or the change in relationships
and EastEnders) is one of the
that MS can cause. It really is a fabulous way of
singers on the album, while Ila and conveying to people how MS can affect someones
Trishna have been involved with the project since
life.
February when Trishna spoke about MS at the world
premiere of some of the songs at Tabard Theatre,
If youd like to read Trishnas review of the album,
Chiswick.
you can do so here:
https://www.mssociety.org.uk/msThe launch event was a chance for people involved in
support/community-blog/2016/05/musicalthe project, the press and invited guests to hear some of stories-magnificently-sung
the songs and listen to people, including Trishna and
Rory, speaking about why this project is so important for CDs of the album cost 9.99 and can be
raising awareness about MS. You can view the launch
purchased via
trailer here:
http://www.simgproductions.com/Records/MS_
https://www.youtube.com/watch?v=nvvYW51SSqI
Song_Cycle.html
And you can see Trishna speaking about the album
here:
https://www.youtube.com/watch?v=nyEqUDPAWCI
Page 8

or 7.99 as a digital version via iTunes. All

proceeds go to the MS Society.

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FUNDRAISING FOR ASIAN MS

Where do the funds go?
Asian MS is funded purely by
donations, which are
used for various
purposes. They include
holding information and
social events,
contributions to research projects, and
administration costs.

The Amiloride and Phenytoin projects

Asian MS has donated 1,500 to the Amiloride and
Phenytoin projects, both of which are drugs that
are being tested in clinical trials for use in MS.
Amiloride is a high blood pressure and congestive
heart failure treatment that has been in use for
over 30 years. It could also have a neuroprotective
and myeloprotective effect. Phenytoin is an
epilepsy drug that has been in use for over 60
years. It is being tested to see if it can protect the
optic nerve in people with optic neuritis and,
therefore, prevent nerve damage in MS.

Asian MS is proud to announce that they now have the facilities to allow people to make donations
in an easier and quicker way.

Donations by credit card via the internet site justgiving.com:

www.justgiving.com/AsianMS

How to make donations by text message :

Send a text message to 70070
Remember to include the subject of the text: as AMSS89
and send it with the amount you wish to donate up to a maximum of 10
If you wish to donate 10 your message would read AMSS89 10
If you wish to donate 5 your message would read AMSS89 5 and so on.
You may donate with any number from 1-5, and the money will go directly to the MS Society, which
will transfer the cash generated to Asian MS. We at Asian MS then decide how to allocate the
funds.

You can also raise funds every time you shop through EasyFundraising:
http://www.easyfundraising.org.uk/causes/asianms

We thank you kindly in advance for your support

Page 9

Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales
(07451571)

NEWS AND HAPPENINGS

MS AWARDS 2016
The MS Society Awards 2016 took place in London on
27th April during MS Awareness Week. It was a
fantastic feel-good event, with the world of MS out in
force to celebrate those who have helped the MS
community in many different ways. For a full list of the
winners, go to: https://www.mssociety.org.uk/mssociety-awards-2016

MS SOCIETY AND THE NATIONAL

GARDENS SCHEME
The National Gardens Scheme (NGS) has chosen the
MS Society to be its Guest Charity for 2016-2017.
NGS volunteers open 3,800 private gardens across
England and Wales, collecting donations and raising
over 2.7 million annually for selected charities.
Gardens are open throughout the year.

DIET & NUTRITION BOOKLET

The MS Society has one new resource available
to order from the online shop:
Diet and Nutrition
There are many claims about how diet can help
with the management of MS. Several special diets
have been created that claim to have effects on
MS. This booklet looks at the evidence that exists
to help you make up your own mind about what
you choose to eat. It also looks at the kind of
healthy diet that most people should be aiming for
and how to get a balance of the different food
groups.

STUDIES COMMISSIONED

In 2014, the results of the MS Societys James

Lind Alliance MS priority setting partnership were
announced. This programme was set up to ensure
projects that answered the research questions
How can you get involved?
most important to people with MS were funded.
Now, three special projects for 2016 have been
-Visit an NGS garden. See www.ngs.org.uk for a
commissioned, designed to investigate the
Garden Finder or download the NGS Open Gardens
app for smartphones. Do mention to the owner that you following:
support the MS Society and thank them for their efforts.
-Talk about the NGS! The more people who visit a
garden, the more support there will be!

Is vitamin D supplementation an effective

disease modifying treatment for MS?

-Do you have contacts that could help grow the

partnership? Are you part of a gardening club or
working in the business? Please let the MS Society
know.

Does early treatment with aggressive disease

modifying drugs improve the prognosis for
people with MS?

-Could you help NGS volunteers distribute leaflets or

give a talk about the MS Society? Perhaps youre
interested in opening your own garden?

Page 10

Which treatments are effective for fatigue in

people with MS?

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NEWS AND HAPPENINGS

STEM CELLS IN THE NEWS AGAIN

MS LIFE 2016

There has been a recent news story again about stem

cell therapy and MS. For the full news story see:
https://www.theguardian.com/society/2016/jun/09/s
tem-cell-therapy-gives-hope-to-ms-patients

The MS Society is busy working on the

programme for MS Life
2016, which will take
place at ExCel in
London on 17th-18th
September. Youre likely
to see MS research
updates, cookery
demos and wheelchair dancing during the
weekend. There will be talks and workshops on
everything to do with MS. Examples include,
symptoms, families, mental health, and claiming
benefits.

The MS Society has written a blog about this:

https://www.mssociety.org.uk/msnews/2016/06/new-study-shows-long-termpromise-stem-cell-therapy-ms
A few key points about this study:
* This small, phase 2 trial involved 24 people with
highly active, relapsing MS - this is the same group of
people that have benefited from AHSCT in previous
studies (including the study highlighted by the
Panorama programme).
* This trial involved more aggressive chemotherapy
prior to stem cell transplantation compared to previous
AHSCT studies.
* The treatment effectively prevented MS-related
immune attacks. No-one taking part in the trial had a
relapse during the follow-up period. 70% of people did
not experience any worsening of disability and 40%
experienced an improvement in disability after
treatment.
* There were substantial risks associated with the
procedure. One person taking part in the study died
from liver failure after undergoing AHSCT.
* Patients were monitored post treatment for a longer
period than previous studies, providing valuable
information about the long term safety and
effectiveness of AHSCT as well as who might benefit.
If anyone is considering AHSCT we'd recommend they
speak to their neurologist.
Page 11

People from all over the world come to MS Life to:

hear top scientists talk about the latest
research
go to workshops that will help you live well
with MS
make new friends over a well earned
coffee!
Its fully accessible and there are childrens
activities to keep the kids busy while you explore.
You can check out Asian MS at MS Life in 2012
here:
https://www.youtube.com/watch?v=sXciqFtyajI
If youve not already booked your free ticket for
MS Life, you can do so here:
https://www.eventbrite.co.uk/e/ms-life-2016tickets-24652570502
Do you know of an event that will be of
interest to other Asian MS members? If so,
please get in touch with us here at Asian
MS!

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(07451571)

NEWS AND HAPPENINGS

MS RESEARCH DAY

There was also more positive talk about progressive disease,

maybe partly due to better understanding of the pathology;
UCL Partners (UCLP) held its 7th MS
Research Day on 18th June in Westminster. that inflammation plays a role even in progressive disease.
The day is a chance for people with MS,
There are also a lot more drugs available overall. Previously
their family and friends to find out what the there were only interferons and a few others. There was a
latest is in MS research and gives them a
monoclonal antibody on the horizon. Now, there are many
chance to chat with neurologists, scientists available (11 licensed for RRMS) and they are classified into
and people involved in MS healthcare. This groups. They are also referred to as Induction/Escalation
year, the day was organised by the team at Therapies and Maintenance Therapies, with the former being
the Royal Free Hospital and several Asian more aggressive drugs taken during a short period of time
MS members were in attendance.
and the latter being less aggressive but taken over a longer
One of them was Dr. Koser Memon, a GP
from Manchester who first got involved in
Asian MS in 2012 through her friend who
has the condition. This was her second
UCLP MS research day her first was five
years ago in 2011.

period of time.

She goes on to say, Stem cell therapy was previously not

talked about much, however, its now being used, albeit with
caution and under trial settings, in patients with highly active
MS. Its an aggressive way of blasting the immune system by
first wiping it out with chemotherapy and then rebooting it with
a patients own stem cells. This type of therapy is for halting
She was keen to outline the key differences disease progression. Another type is being investigated for
between the two days, as there have been myelin repair.
significant developments in MS research
Finally, there is the
during the past five years.
repurposing/modifying of existing drugs,
Firstly and perhaps most apparent was the
shift in focus from the research day just
being about RRMS. Previously there were
only treatments for inflammation aimed at
people with RRMS and at the 2011
research day there was a strong voice from
people with progressive disease lamenting
the lack of research and available
treatments. They were basically told there
were no treatment hopes to explore. That
has now changed and there are drugs
being trialed to target progressive disease.
Page 12

a topic which was focused on a lot at

the latest research day. Instead of just
trying to invent new drugs, there is
active research in using existing drugs used for other
conditions. Obtaining licences for and developing completely
new drugs is expensive and time consuming. Repurposing an
existing drug can speed up the process.
Trishna, Asian MS Newsletter Editor, also attended the
research day and found it extremely positive. Watch her
debrief on the day via YouTube:
https://www.youtube.com/watch?v=qB_zcPUsKcw

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TEA WITH DEE

~ Dee Popat has chai and a chat with our members
I hope you are all keeping well? Its that time again,
when you can sit down, take a break and enjoy a cup of
tea whilst looking into the thoughts of the kind
volunteers who give up their valuable time to share their
thoughts and experiences of MS with me.
Today I will be speaking to Ila & Ramesh Gangotra, the
parents of our very own editor, Trishna. I thought it
would be nice to get the views of a parent as we have
not done this before. I hope you enjoy reading this piece
as much as I enjoyed speaking to Trishnas parents to
obtain their thoughts and views.
If you have any ideas for interviewees for Tea with me
or any of you are interested in sharing your experiences,
please do get in touch. Dee xx
Name(s): Ila & Ramesh
Gangotra
Marital status: Married (to
each other!)
Children: Three daughters
Occupation: Sports retail
(own business)

sent her for physio and after investigation they thought

it was Repetitive Strain Injury. A few years later,
Trishna lost the feeling down one side of her body and
the GP she saw thought it was a neurological problem
so made the appropriate referral to a neurologist. After
just under a year and many tests Trishna was
diagnosed with MS.

What were your initial reactions and feelings? We

What type of MS does Trishna were completely shocked by the diagnosis at such a
have? Relapsing Remitting MS.
young age (she was 28). There was a feeling of
numbness and helplessness. More or less straight

How long has she had MS? She was diagnosed away, we both decided to get as much information as
eight years ago but we think she probably had MS possible and we felt we were not given enough
earlier than this.
information by the experts. We asked people for
information and researched on such things as
What were her initial symptoms and how was medication for MS and the pros and cons.
she diagnosed? As Trishna works with
computers she developed some problems with
How have you assisted Trishna with her MS? We
her hands whereby she would have difficulty lifting are very close family and we all chip in to do house
things and even holding a knife and fork. The GP work, shopping, attending medical and other
appointments, attending charity events with Trishna, all
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to ensure that she is not over exerted or fatigued. We

are always aware of Trishnas needs, in particular
ensuring our home is safe from a physical point of view,
now and for the future.
What if any, problems have you seen Trishna faced
with? Trishna has always been a fan of hockey (she
takes after her father who still
plays at international level for
Wales). Initially Trishna used to be
a forward player but due to her
physical limitations her position
was changed to back defence. Her
team was very understanding. As
fatigue kicked in, Trishna needed
to take regular breaks. She doesnt play hockey now
due to time constraints but does Zumba.

Centre in Huntingdon and an expert patient. All

this at the same time as doing a full time job.
What does Trishna enjoy the most? She is
passionate about spreading awareness of MS,
Zumba and writing. She used to love cooking but
this has taken a back seat due to a restricted diet
she now needs to follow for another condition!

Is there any particular experience or advice

that you would like to share (involving MS)?
We would suggest that you try to gather as much
information as possible. The more information you
have, the more you would be in a position to make
informed decisions. Stay positive and try not to get
down as these two things will always help not only
you but also the person with MS. As parents you
will always worry about your children especially
Do you feel that Trishna has had to cut down on
that you may not be around when your child needs
anything due to her MS? As stated above, Trishna has you. These are natural worries and will always be
had to give up hockey. She has cut down tremendously at the back of our minds.
on her socializing especially if it involves staying up late.
Any words of advice for other parents who
Do you think that there is enough support for
have children with MS?
people with MS in your area? To be honest, we do not The best advice is to be positive and keep up faith.
think there is. Although we understand local budgets
Your child will be grateful for your strength.
and financing, it would be nice if there was an MS
Dont be afraid to talk to others and share your
Therapy Centre closer to home as the nearest one is
views. Be loud and proud when it comes to the
about 1 hour away.
topic of MS. Sharing your knowledge can help turn
negatives views into positive ones.
What if anything more could be done? There are
Trishna has shown us that raising awareness in
many people with MS in the area, so we feel a local
MS can be taken to another level. Just through her
Therapy Centre would benefit these people. Also
involvement in Strictly Come Dancing, she was
facilities to assist people with MS who work and
able to raise the profile of MS and boost
therefore cannot attend groups, centres, therapies
awareness for the various MS charities.
during working hours.
There is a need to raise awareness especially in
What are your views on all the activities and
certain communities. The world is a small place
projects that Trishna has been involved with?
and you never know who you may meet and what
We are tremendously proud of Trishna and her
connection may be made. There is a lot going on
achievements (as we are of all our children). To mention with research into MS and we encourage people to
a few of the hats that Trishna wears: MS Society
get involved and raise awareness. We are positive
Ambassador, newsletter editor for Asian MS,
that global awareness will help to bring us closer
Ambassador for Sue Ryder, patron for the MS Therapy to a cure or therapy to help those with MS.
http://stopms.mssociety.org.uk/
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A CHANCE TO GET
INVOLVED

The UK Clinical Trials gateway allows you to

search for clinical trials and studies related to MS.
Type multiple sclerosis into the search box:
http://www.ukctg.nihr.ac.uk/default.aspx

Personal experiences of progressive MS, City

University: This study will explore issues
surrounding the impact of progressive MS on
peoples lives, including how they feel about
themselves or how the impact might change as
illness progresses. Participants will be required to fill
out two questionnaires, which will take around one
Imaging markers of brain network disruption in hour each to complete and will be spaced 12
months apart. Participants will receive 10 for each
MS, University of Nottingham: Seeks to
investigate new markers of cognitive performance questionnaire, as compensation for their time. You
must have a diagnosis of PPMS or SPMS (transition
and fatigue in people with MS using brain MRI,
questionnaires and cognitive tests. The findings of within the past 12 months) to participate. To find out
more, contact Fern on fern.day@city.ac.uk or
this study will hopefully help researchers to
understand how and why certain symptoms occur. 07590-210419.
Participants will need to have two 30-minute MRI
The Oxford Participation & Activities
scans, around a month apart. After each MRI
scan, participants will also have to complete some Questionnaire (Ox-PAQ), University of Oxford:
This questionnaire measure effects on health on
cognitive tests and questionnaires about fatigue
how people participate in their everyday activities.
and sleep patterns. To take part you must be
diagnosed with MS, be aged 18-65, and be able to People with COPD, Motor Neurone Disease,
Parkinsons disease or MS can participate. By
have MRI scans. For more information, contact
taking part in the survey, respondents will be
Tom Welton on 07779-710811 or
helping researchers to know whether the Ox-PAQ
msxtw3@nottingham.ac.uk
can assess changes in peoples levels of activity
and participation over time. The survey is online and
Understanding self-management in MS,
University College London: Aims to look at ways will need to be filled out twice, six months apart. The
first questionnaire will take around 10-20mins, while
people with MS manage their health in daily life
the second will take slightly longer as it has a few
and how technologies can help. Participants will
be interviewed on: how they use different tools to additional questions. To participate, you must be
over 18 with a confirmed MS diagnosis, as well as
manage health (e.g. paper diaries, mobile apps,
being able to speak English and live in the UK. You
fitness trackers etc.), what do people track (e.g.
pain, mood, diet etc.), and what kind of challenges will also need access to a device from which you
can complete the survey. The first survey must be
do they face/what do they learn. Participants will
receive a 20 Amazon voucher as a thank you. To completed between April and September 2016. For
more information contact Sarah Dummett or David
take part you must be over 18 and have a
Morley on oxpaq@dph.ox.ac.uk or access the
confirmed MS diagnosis. Interviews can be in
patient information sheet here.
person at the UCL Interaction centre or a public
space, or it can be over the phone or Skype. To
find out more contact Amid on
amid.ayobi.14@ucl.ac.uk
Research studies that are currently running are
listed below. For more information on any of these
studies and clinical trials, please visit the MS
Societys research page at:
http://www.mssociety.org.uk/ms-research/getinvolved-research/be-in-a-study

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(07451571)

A CHANCE TO GET
INVOLVED
Predicting an individuals potential for functional
recovery in MS, Cardiff University: Aims to
develop a method for predicting someones potential
for recovery of function, following MS-related
damage to the brain, in response to recoveryorientated intervention. It will be based on a mixture
of information related to disability along with detailed
mapping of structure and function of brain circuits. It
will hopefully help in targeting the best treatment and
rehabilitation strategy to an individual by raising the
sensitivity and speed of evaluation of recoveryorientated interventions. There will be detailed
neuroimaging investigations undertaken on
participants, as well as motor and cognitive tests.
There will then be a month of targeted daily motor
training at home (around 15 minutes/day).
Reasonable travel expenses and time spent on the
project will be reimbursed. To take part you must
have a confirmed MS diagnosis and be aged 18-60.
The study particularly wants people who are righthanded and who have sufficient functioning to use
their fingers individually. To find out more, contact Dr
Ilona Lipp on 0292-087 0345 or
msresearch@cardiff.ac.uk

The MS Society Tissue Bank allows both people

with and without MS to donate their brain and spinal
cord tissue after their death, helping researchers to
understand MS damage and find more effective
treatments. For more information please visit:
http://www.mssociety.org.uk/ms-research/getinvolved-research/ms-tissue-bank

Page 16

Can a flavonoid-rich cocoa drink improve

fatigue?, Oxford Brooks University: Aims to
look at the role of cocoa consumption for fatigue
management in people with MS. It will help to
ascertain whether certain dietary interventions are
beneficial to people with MS. Participants will
need to attend three research visits over a 6-week
period at Oxford Brookes. Their fatigue levels will
be measured, walking tests will be done and
blood samples will be taken, and a series of
questions will be asked about daily activities.
Each visit will be before 10am and will last a
maximum 90 minutes. Participants will have to
fast overnight (around 10-12 hours) i.e. no food or
drink (water in moderation is OK). They will be
randomly allocated to a low-flavonoid or highflavonoid cocoa drink group, which will have to be
consumed daily for the six weeks. Their daily
activity and fatigue levels will be monitored via a
wrist watch and text messages. There is specific
eligibility criteria, please follow the hyperlink
above to see what it is. For more information,
contact Dr Shelly Coe at scoe@brookes.ac.uk
Understanding depression and anxiety in
people with MS, University of Liverpool: Aims
to understand more about depression and anxiety
in MS via the use of questionnaires that will
address pain, fatigue, emotional distress and how
people make sense of their MS. Participants will
need to complete six online questionnaires at two
time points, three months apart. Each set of
questionnaires will take around 30 minutes to
complete. You can participate if youre over 18
and have a confirmed MS diagnosis, as well as
access to email and the internet. Participants will
also get the chance to enter a prize draw for one
of three 50 gift vouchers once the questionnaires
are complete. The questionnaires are web-based,
available here, so can be carried out from home.
If you would like more information, contact Phillip
Heffer-Rahn at prahn@liverpool.ac.uk

Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales
(07451571)

LATEST RESEARCH & MS

IN THE NEWS
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BBC's Caroline Wyatt 'determined' after MS diagnosis
Micro-RNA Levels May Be Diagnostic Marker, Distinguishing MS from Other Neurological
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MS-related optic neuropathy can be reversed with allergy drug (antihistamine): Study
BrainHealth & ClinicSpeak: Six ways to lead a brain-healthy lifestyle
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Multiple sclerosis (MS) progression increases with continued smoking after diagnosis: Study

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