MYOSITIS vaccine jab

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                                    Support Group
         Newsle tter 61                                            October 2006

Dear Member,

The charity Annual General Meeting and Mini          leaving ample time to ask the doctors
Conference was very successful. Like last year       questions and to mingle with friends. It is
it must have been on one of the hottest days         always a nervous task putting such a meeting
of the year and the fact we were in an air           together and during the week running up to it
conditioned conference room I would suggest          my fingers remained crossed in the hope that
meant we were in the best place. It was              it came together. I should not have worried for
certainly too hot for the beach! Nevertheless        if there were any problems Irene and Paula
members and the doctors had to get there and         kept them very quiet. At the mini conferences
I thank everyone who attended. Due to busy           we aim to have a least two expert Myositis
lives, Jenny and Rob Fenton have retired from        speakers so I must thank Irene for her ability to
the committee. The rest of the committee             commandeer such speakers this year. All the
remains the same for the next year and I am          presentations were given with such
very grateful to them for their continued            enthusiasm promoting an energy in the room
support.                                             that things were really moving forward.

COMMITTEE : Les Oakley - Chairman                    In summary the speakers for the day were, Dr
            Paula Oakley - Secretary                 Lucy Wedderburn (JDM), Dr Michael Rose
            Jo Good - Hon. Treasurer                 (IBM) and Dr Hector Chinoy (DM/PM). The Iris
            Catherine Risley                         Hazel Talk was given by Tony Hindle in
            Tony Hindle                              memory of Trustee Elaine Aubrey. Elaine's
            Sue Hindle                               husband, Steve and her son, Daniel, were
                                                     present to receive a commemorative engraved
                Irene Oakley -                       clock. Sue Maillard a physiotherapist from the
                Group coordinator                    Institute of Child Health also gave a
                                                     presentation on the effects of exercise in JDM
The venue of the Holiday Inn in Eastleigh,           and it was good to see Beverly White,
Southampton was first class and nothing was          coordinator of the SELAM trial, on a
too much trouble for the staff. The dining           recruitment drive! The meeting was also
arrangements and food were also excellent            attended by numerous rheumatology nurses
which also contributed to the success of the         including Kath Edge (who works with Hector)
day.                                                 and Colin Beever (Portsmouth). The meeting
                                                     was again chaired by Professor David Scott
MINI CONFERENCE REPORT                               who after so many years of giving his time to
Our aim for the meeting was to again like last       us automatically fills this role with
year keep it as informal as possible,                professionalism and enthusiasm.

“Thank you so much for a great day at the AGM             “Thank you for last Sundays' event. My husband
and mini conference. It was a positive day for            and I really found the day informative and useful.
me!”                                                      I was especially pleased to be able to talk (for
                                                          the first time) to other people with DM.”
“I would like to thank you and all your helpers for
organising such an excellent conference. Not
only did I learn a lot but I enjoyed it as well.”


Writing up the meeting is a laborious and thankless task undertaken by Paula so I have forgiven
her for only having one item ready for this newsletter especially as she is supposed to be writing
up her own thesis! Below you will find her summary of the presentation given by Hector Chinoy.
Lucy Wedderburn has kindly supplied a report of the muscle meeting on which much of her
presentation was based.

Mini Conference: Adult Onset                              Chinoy see DM and PM patients rather than IBM
                                                          (Inclusion Body Myositis) which is seen by
Myositis Immunogenetic                                    neurologists. Why is this? Simply because of the
Collaboration (AOMIC) Update                              way the diseases initially present themselves.
The work of the AOMIC is focussed on DM                   The signs and symptoms of DM/PM typically
(Dermatomyositis) and PM (Polymyositis). This             lead to a referral to a rheumatologist whilst those
is because, as rheumatologist, Drs Cooper and             of IBM will lead to a neurologist. Therefore, in

general, a rheumatologist will manage DM/PM            patient's genes their disease outcome would
and a neurologist will manage IBM patients.            be invaluable to the clinician in helping him
                                                       manage and treat his patient and would
                                                       benefit the patient's quality of life.
Dr Chinoy presented his research findings for
DM and PM, however, the technologies can
hopefully be one day assigned to JDM (Juvenile         Dr Chinoy gave an overview of genetics and
Dermatomyositis) and IBM research.                     the techniques they have available to perform
                                                       such studies. He described the genes of most
                                                       interest were a cluster of genes known to code
DM and PM are often clumped together but               for HLA proteins. HLAs are involved in the
these diseases themselves are distinct. For            immune system and certain HLA genotypes
example, pathological differences are seen in          have been associated with the development of
the muscle between DM and PM, a heliotrope             autoimmune disease.
rash and an increased risk of malignancy is
associated with DM, and different serological
associations have been noted for DM and PM;            It has been suggested by Dr Fred Miller that
for example auto-antibodies more common in             myositis should be re-classified according to
DM are those against Mi-2 and for PM anti-SRP          serological profile as certain features are
antibodies are more common (figure 1).                 closely associated with a specific serology. For
                                                       example, rather than DM or PM, the myositis
Figure 1.                                              should be anti-synthetase myositis, anti-SRP
Serological Associations in PM/DM                      myositis or anti-Mi-2 myositis, etc., (figure 2).
                                                       Dr Chinoy's genetic data supports this idea. He
                                                       found that certain genotypes were more
                                                       closely associated to serology than myositis
                                                       subtype (PM or DM). For example, HLA-
                                                 Figure 2. Serological Classification of Myositis

The question being asked by Dr Chinoy
and his colleagues is; “How does PM and
DM differ genetically?” And the reason
they asked this question is that they
believe that by understanding the genetics
of a patient's myositis they will be able to
understand and predict the course of the
disease and eventually be able to target
the use of certain therapies in the future.
For example, with this knowledge in the
future, we will hopefully be able to say, if
you have genotype A you are likely to             Anti-Synthetase:      Anti-SRP: acute   Anti-Mi-2: v-
develop lung disease, or, if you have             interstitial lung     severe muscle     sign rash,
genotype B you are more likely to respond         disease, arthritis,   weakness,         shawl-sign
to steroids than genotype C who would             mechanic’s            cardiac           rash, cuticular
benefit from an early use of methotrexate.        hands, fever          involvement,      overgrowth
Having the knowledge to predict from a                                  myalgias

DRB1*03 was associated more with PM than                 patient with specific HLA genotypes.
DM, however patients with anti-synthetase
antibodies were more associated with this
genotype. Also, HLA-DRB1*07 was associated               This work had been published as a scientific
more with DM than PM, however there was a                paper (In adult onset Myositis, the presence of
greater association between this genotype and            interstitial lung disease and Myositis
Mi-2 auto antibodies.                                    specific/associated antibodies are governed by
                                                         HLA class II haplotype, rather than by Myositis
The next stage of their work is to analyse their         subtype) and can be found on our website
genetic findings with patient histories. With this or please send a
information they hope to be able to draw                 stamped addressed envelope to the office and
conclusions regarding the disease course of a            we will forward you a copy.

Want to help with the genetic work?
Blood samples for the genetic research of Dr Cooper and Dr
Chinoy are welcomed. It involves your GP taking and sending
your blood along with a short questionnaire. Interested?
Please contact Dr Cooper by e-mail at, or his secretary, or write to, Rheumatic Diseases
Centre, Clinical Sciences Building, Hope Hospital, Eccles Old
Road, Salford, M6 8HD.

                                                         Specific Aims of this Meeting
The 2nd JDM Biopsy Consensus Meeting
hosted by the JDM Research Centre (Institute             1. Consider items of the score from 2005
of Child Health) in collaboration with the JDM              tool which were contentious, and decide
Research Group (of the UK) and financially                  upon the tool for this meeting
supported by the Myositis Support Group was              2. In the light of ‘normal’ data now available
held in March this year.                                    to add numeric ranges for certain
                                                            features to the score
This meeting was attended                                3. Use the 2006 tool to score a set of
by a group of international                                 biopsies and analyse how robust the new
histopathology experts, now                                 tool is
formally called the                                      4. Finalise the new tool, base upon the
‘International Consensus                                    results of second scoring workshop
Group on JDM Biopsy’. Their
                                                         5. Agree upon strategy for future work-
aim was to generate a
                                                            especially publications, prospective
scoring system developed
during our first meeting to
test the question: Which
pathological changes on                                  Dr Lucy Wedderburn writes, “The scoring
muscle biopsy correlate with disease                     system was divided into 4 domains of change,
severity or predict outcome in JDM?                      these were; 1) inflammatory, 2) vascular,

3) fibrosis, and 4) muscle fibre. We developed         was. During day three much discussion took
the scoring system by discussion of what we            place and we were able to establish what criteria
should and how we should grade specific                were important to the scoring system, within a
markers for the 4 domains above. These                 domain what were the critical markers and the
domains had been worked out at our first               suitable grading system for each feature within
meeting. Data was presented by several                 a domain. The statistical data revealed that as
members of the group from different centres,           in 2005 some gradings within a specific domain
about work that had been carried out in the            had excellent reliability while others less good.
year between the first and second meetings             We discussed this further and final definitions
and this enabled us to further fine tune the           for the gradings of the scoring system were
scoring system. At the end of the first day we         reached so that we were able to propose a final
had established a comprehensive grading                scoring system for JDM muscle biopsies.
criteria for the scoring of JDM muscle biopsies.
To establish the scoring system each
pathological feature under examination had to          The International Consensus Group on JDM
have its terminology and grading agreed upon           Biopsy agreed that the work should be written
by more than 8 off the 11 experts involved in          up for publication as soon as possible and that
the discussion. By the end of the day a new            prospective studies were vital in the future. This
version of the scoring system had been                 would need to be performed on a large cohort
designed and agreed by consensus. The                  of new biopsies which have been collected with
second day took the form of a workshop. Each           detailed clinical data. Such work would require
expert used the criteria to grade a selection of       a third meeting of the International Consensus
muscle biopsies from patients with varying             Group on JDM Biopsy, to truly validate the
degrees of JDM severity and normal controls;           scoring system as a tool.
the experts did not know the patient history for
any of the muscle biopsies. Statisticians              Overall, this was a highly successful and
worked late into the night analyzing the results       valuable meeting. Our primary goals of
of the experts and on the third day we                 finalizing a scoring tool and agreeing to publish
discussed how robust the scoring system now            this work were achieved.”

LISTENING EAR TELEPHONE                                volunteers (5 DM, 2 PM, 1 JDM, and 2 IBM of
                                                       which the ratio of women to men is 5:1) into a
NETWORK                                                booklet. There is still time to include yourself! I
The Listening Ear Telephone Network will be a          would especially like to include a parent of a
self-help resource for Myositis Support Group          JDM sufferer in the booklet. Your child may
members. The network will be made up of                now be grown up and in remission so your
Myositis Support Group members who have                support of another parent who now finds
volunteered themselves as a point of                   themselves in the shoes you used to wear
telephone contact to others.                           would be most beneficial to the Listening Ear
                                                       Telephone Network. Also gentlemen, I only
                                                       have 2 chaps as volunteers and the booklet
Paula writes, “Firstly I would
                                                       would benefit from a few more.”
like to say thank you to all
who have enquired and
volunteered to be part of this                         For further information about volunteering for
unique self-help resource. 15                          the Listening Ear Telephone Network please
members enquired and to date 10 have signed            email or call Irene in
up to the Listening Ear Telephone Network to           the office and we will be happy to send you
help support other Myositis sufferers. I am            further details.
currently collating the details of these

                                      FUND RAISING
DRESS DOWN DAY AND                                          COLLECTION BOXES
CAKE STALL                                                  We know you are using them
Jayne Guy sent a cheque for £135 in respect                 and one member mentioned
of the dress down day and cake stall which                  that she collected nearly £12
she kindly organised on behalf of the Group.                in hers and she didn’t feel any
We also received matched funding of £135                    financial pain as the odd coins
from the HBOS Foundation making a total of                  went in over several months!

GREAT NORTH WALK –                                          GOLDEN WEDDING
DARLINGTON                                                  ANNIVERSARY
Karen Taylor raised £100 from the walk. She                 Mr and Mrs Partridge
writes, “I decided when the walk was taking                 celebrated this special
place in our town I would like to raise some                occasion on 28th July 2006. Instead of gifts
money for the charity as you were very helpful              they asked for donations for the charity that
when I phoned for some information when my                  amounted to a fantastic £690! Pam has a
son Gary was first diagnosed with                           nephew who she admires very much for he is
Dermatomyositis. We walked nine and a half                  a sufferer but never complains. Both her and
miles but it felt like twelve but it was a great day.       her husband hope and wish that this collective
By donating the money I hope it helps the                   gift will help someone else.

SUMMER DRAW 2006                                            this fundraising
                                                            event. First prize was
                              Thank you all for             won by Margaret
                              your support to this          Hope who after
                              annual event. We              saying she has
                              raised £2158.                 never won a raffle
                              Paula had some                before returned £100
                              very good friends             to help the charity.
                              stopping over for             What kindness. A list of prize winners can be
                              the weekend and               found at the end of this newsletter. Prizes 15,
                              we invited them to            19 and 29 have not yet been distributed to
                              draw the winning              their winners as we have been unable to
                              tickets after they            contact the owners of these tickets. Please
                              had spent two                 look at the list to
hours preparing the tickets for the draw. We                see if this is you or
always seem to manage to find some                          if you sold the
unsuspecting characters to do the draw. So as               winning ticket. I
in previous years if your ticket didn’t come out            look forward to
blame them not me! I would also like to thank               your call or e-mail
members who donated prizes. Draper Tools                    with your address
kindly sent a £50 donation in lieu of a prize.              so that your prize
They have never missed a year to help us in                 can be sent to you.

DIAMOND                                                    neighbours. We both suffer ill-health with Mary
                                                           being confined to a wheel chair but we
WEDDING                                                    enjoyed the day immensely and appreciated
ANNIVERSARY                                                the effort put into it by our devoted family. We
Gerald and Mary Cooke                                      are so grateful to have reached this stepping
write, “This year we both                                  stone in our lives that we requested no gifts
celebrate our 80th birthdays and our                       but donations to the Support Group that is so
forthcoming Diamond Wedding anniversary on                 close to our hearts because of our daughter’s
the 21st December 2006. As December is such                condition with Dermatomyositis. She has
an unpredictable month (weather wise) and                  suffered much over the years and yet she is so
close to Christmas we decided to “party” in                brave, such a caring mother and grandmother
June which proved a great success allowing                 and to us such a wonderful daughter and
four generations of our family to be present               because of that love she has shown us we
along with all our beloved friends and                     forward to you £350 received for the funds.”

BACK WAXED                                                 EYEBROW SHAVE
Jean Dunn writes, “The enclosed £115 was                   Mrs Pemberton sent a donation of £55 raised
collected at my neighbours BBQ. It was raised              as a result of a friend’s head and eyebrow
by Martin Cooper on the day of his birthday                shave!
(one he won’t forget in a hurry) for having his
back waxed.”

COLLECTIVE EFFORT IN HALIFAX                               special thanks to them as they waved their fee to
Myositis sufferer, Catherine Sutcliffe, has raised a       help the cause. To get everyone in the party
whopping £2,183.79. She writes, “I had                     mood the landlady from the Grand View public
wonderful help from various people and through             house was first up for karaoke. All these people
this newsletter would like to thank Kath                   and everyone there made it a great night and a
Loughrey and friends from the Lee Mount                    total of £2,016 was raised. Well done!”
Working Men’s Club. Kath put a lot of hard work
into organizing a charity night at the club. The           “My brother Anthony Armstrong who works for
night went very well with lots of raffle prizes            international banking for HBOS went round his
donated by local companies and friends. A large            department on dress down day with a bucket
tumble dryer was donated and auctioned and a               and raised £132.79. My dad, Jackie Armstrong
buffet was also on offer. What set the night off           went round his local club and with a raffle he
was a fantastic duo called “Flint” and they left           raised £43.00. I would also like to thank my
the stage with the crowd wanting more. My                  Uncle Colm for his kind donation.”

CHRISTMAS CARDS                                            cards and we are very appreciative of the
We have a selection of                                     added donations on top to help with postage.
eight wonderful new                                        However, I find honesty has always been the
designs available this                                     best policy; they could be selling faster! The
year. Our Christmas                                        slow start to the Christmas Card sells may be
Cards are an easy way                                      due to the wonderful weather we have been
to subtly raise                                            having, we still think its summer! So with this
awareness of our                                           little nudge I have enclosed another order form
Group as they include                                      for members that may have misplaced the
our logo on the inside                                     previous one sent out and I hope I can
left of the card. Many of you have ordered                 generate a sell out response!

We received our first commission cheque from in September for
£47.20. By shopping through our webshop funds are raised for the
Myositis Support Group automatically! Great offers are added
frequently to our webshop. The latest is from Dial-a-Phone.

Dial-a-Phone have the latest handsets from the UK’s leading networks
and for a limited period has offered the Myositis Support Group an
introductory rate of £50 for every subscription made via our webshop.

These great Dial-a-Phone deals include:
FREE Nokia 8800 with FREE accessories with 1100 anytime any network minutes and
FREE Nokia N91 with half price line rental for 5 months and 600 any network minutes.
For more information on these fantastic offers please visit our webshop and
click on Dial-a-Phone.

So, if you are thinking about buying a phone              leaflets on the reception table at my place of
for yourself or for a loved one this Christmas            work for people to help themselves. Likewise,
please visit our webshop now. Your support is             member Maggie Hall has put up posters and
greatly appreciated.                                      distributes webshop leaflets through her
                                                          garage in Shaftsbury. Maggie says “I think
If mobile phones are not for you please visit             this is a brilliant idea, and I hope people will
our shop to see what else             use it”. Could you do something similar?
it has to offer as it is home to over 100 retailers       Please let me know as we can provide the
including; Marks & Spencer, John Lewis,                   posters and leaflets.
Amazon, HMV, Goldsmiths, Littlewoods,
Mothercare, and Thorntons. Christmas can be               Paula sent out a mass email to her friends to
a financially difficult time for many of us but by        advertise the webshop a copy of this is at the
shopping through our webshop you will find                end of this newsletter. If you would like a
great offers and the Myositis Support Group               template of this email to modify and similarly
will benefit from all your Christmas shopping             send out to your friends and family to raise
indulgences, does that make you feel better?              awareness of the webshop please email
Help us spread the word about our webshop,
especially in the run-up to Christmas!
Our web shop
is starting to raise
funds! However, we
would like it to raise
a lot more. You can
help us raise
awareness of the
webshop by letting
your family and
friends know of it,
putting up posters
and distributing
leaflets in your place
of work. I personally
have a pile of

FUNDRAISING & THE NEW YEAR!                              for your resolution to the Support Group. If you
                                                         fail you will have to pay your pledge to the
Members who attended the mini conference will            Myositis Support Group. If
know that further research was being proposed            you succeed we will offer you our warmest
by all three speakers and in the case of the             congratulations.
genetic work this would be very expensive. So,
we must step up to the challenge and try to              If your resolution is to give up
ensure that funds are available. Hence, we want          smoking you may want to
our fundraising to get off to a great start in the       consider saving the money you
New Year and we need your help. If you’re                would normally spend on
planning on making a                                     cigarettes and donating it to the
New Year’s resolution why                                Myositis Support Group.
not as an added incentive                                Likewise, if you grab a designer
be sponsored for your                                    coffee each morning on the way to work why
effort and raise funds for                               not give that up and donate the money you
the Myositis Support                                     would have normally spent to us; I’m sure it will
Group. Whatever your                                     give you a greater buzz of satisfaction than the
resolution, be it giving up                              caffeine infusion!
smoking, to stop biting
your nails, or to lose                                   Prefer something a bit simpler? 5 easy ways to
weight, we can help by                                   help raise funds are to shop at
providing sponsorship                          , set up a regular standing
forms, posters and                                       order donation, join your companies give as
relevant information.                                    you earn scheme (if available), ensure your
                                                         donations are Gift Aided (UK tax payers only),
An alternative to                                        fill and empty your Myositis Support Group
sponsorship is to pledge an amount of money              money box.

JUST WALK FUNDRAISING EVENT                              15km walk or £40 for the big 60km). Your fee
                                                         includes all the food and drink you’ll need for
                         Just Walk is an exiting         the entire event and a celebratory BBQ at the
                         new sponsored walking           finish, as well as full event plans and support,
                         event taking place on           T-Shirt, safety staff and pampering people,
                         the 19th May 2007               training and fundraising advice, power stations
                         open to all charities.          along the walk - with snacks and drinks, and
                         We are looking for              clearly marked route with free views! There are
                         volunteers who would            no hidden overheads. ALL the money you
                         like to take part and           raise will go to your chosen charity. So,
fundraise for the Myositis Support Group. This           whether you raise £10 or £10,000, your charity
charity walk is designed to offer enthusiastic           will get it ALL.
walkers the chance to experience a
breathtaking walk over the picturesque South             If you are a keen walker and would like to take
Downs (Sussex) and generate funds for their              part we (Myositis Support Group) will promote
chosen charity. You, and possibly your friends,          your efforts. However, it will be your
can choose to participate in a gentle 15km               responsibility to pay your fees and raise
walk or a whopping 60km; both start at                   sponsorship. If you would like to know more
Goodwood Racecourse. Costs are a                         visit and if you do decide
registration fee (£25) and event fee (£20 for the        to take part please let us know.

LONDON MARATHON                                                Group’s aims which are to raise awareness of the
                                                               illnesses and to raise funds for research into
                                  We have been                 these miserable diseases.
                                  very fortunate to
                                  have been                    We can only receive this one Silver Bond place on
                                  offered a Silver             application once every five years. For this reason
                                  Bond entry in the            we need some very important input from you to
                                  2007 Flora                   make this a bumper fund raising event. We need
London Marathon and Irene and I attended a                     to find a runner not necessarily an athlete who
reception hosted by race director, David Bedford               would love to represent us. The applicant would
in London. However, on listening to his advice on              also be expected not only to train and complete
how to promote our entry we have decided to                    the race but to have good contacts to help raise
defer it to the following year 2008 to give us more            sponsorship not only from his or her personal
time to prepare and gain as much support as                    connections but from extended connections with
possible for our runner.                                       businesses, commerce, companies and their
                                                               suppliers etc. In other words extended contacts
Initially when we received the news that we had                who would be prepared to raise sponsors and
been awarded a Silver Bond place my instincts                  get involved with the runner and the event.
were to offer the place to a runner who had ties
to Myositis; maybe to a family member of a                     The emphasis is about the runner and raising
sufferer who had tried on several occasions to                 money for research into muscle disease. They
gain a place without success. But after talking to             would also be expected to permit themselves to
the London Marathon organisers it became                       be featured on the charity website through the
apparent that I must detach any emotional ties                 coming year to show their training progress, ups
and see the Silver Bond place as a unique                      and downs plus the fun and the humour. There
opportunity to raise a considerable amount of                  will be a facility to pay sponsorship money online
money for our charity. Moreover, this Silver Bond              as well as in the usual ways during the months
has come at a very important time as research                  before the race. The role of the Myositis Support
projects have been proposed for DM, PM, JDM,                   Group is to be in the background with you, our
and IBM. The thought of being in a situation                   members, pulling out all the stops to get anyone
where the committee will have to decide to fund                and everyone involved with raising money plus
one and not the other is one we do not want to                 gaining media coverage. There will also be the
find ourselves in. It is our responsibility to use this        benefits for our Silver Bond runner associated
Silver Bond in support of the Myositis Support                 with the Flora London Marathon organisation
                                                               such as a training seminar where the runner will
Our London Marathon History 1986-2006                          get advice on nutrition, training, injury prevention
The London Marathon has always been a key                      and “Do it my way“ a talk by David Bedford.
fundraiser for the Myositis Support Group. Steve King
was our first LM runner in 1986. This was reported on          Just like a runner in the marathon, our research
in our 1st Newsletter and sponsorship raised over              projects are also on the starting line ready and
£1100. Since then we have had the pleasure of many
                                                               prepared to give results! If you or if you know
runners running for our cause including our own
veteran runner Frank Littler, his sons Michael and             someone we can approach that fits the above
David Littler, Mick, Sue and Nick Clarke (Trustees of          criteria please get in touch through the office or
the charity for many years), Guy Brannon, Maggie               by e-mail. It would be great if our Silver Bond
Pearson, Mike Welby, Bob Morley, Tom Pooley, Phil              runner did have emotional ties to the Myositis
Linsell, Ann O'Toole, Phil Blake, Guy Angouin, David           Support Group as well as commercial and
Wheeler, Ray Sheppard, Roger Howard, James                     financial contacts. At our conference in
Risley, and David Oakley. Their efforts and your
                                                               Birmingham next year (2007) I would like to be in
support have raised over £30,000.
                                                               a position to announce an update on this major
All our runners obtained their place through the               initiative for our charity.
ballot. Could you be our 1st Silver Bond Runner?

We have a selection of Myositis Support Group T-shirts, polo shirts and baseball caps for sale.
We also have available the Myositis Support Group logo pin badges at £1 each plus 40p p&p.

Available from stock:
Unisex T-shirts (Fruit of the Loom):                   Ladies Polo Shirts (Fruit of the Loom):
White with the “Myositis logo” printed small on        Sky Blue with the “Myositis logo” embroidered
the front left and large logo on back in navy          on the left hand side in navy blue)
blue.                                                  Sizes: S, M & L
Sizes: S, M & L                                        Price £17.50 plus postage and packing*
Price £12.50 plus postage and packing*
                                                       Baseball Caps: Navy or White with
Men’s Polo Shirts (Fruit of the Loom):                 embroidered “Myositis logo”
White with the “Myositis logo” embroidered on          Price £10 each plus postage and packing*
the left hand side in navy blue.
Size: M & L
Price £17.50 plus postage and packing*
*Postage and packing costs for items except Sweat Shirts are as follows; 1 or 2 items £1.75, 3
items £2, 4 items £2.25. Please contact us for cost for over 4 items. P&P per Sweat Shirt is £2.25.

We can supply on special order the following items in a range of colours.
Unisex T-shirts    Unisex Sweat Shirts   Mens Polo Shirts      Ladies Polo Shirts
£12.50 +p&p        £25 + p&p             £17.50 + p&p          £17.50 +p&p

                        Unisex T-shirts, Sweat Shirts & Mens Polo Shirts
                        Size              S       M        L       XL                XXL
                        Chest (to fit) 35/37    38/40    41/43   44/46              47/49

                        Ladies Polo Shirts
                        Size             XS              S        M             L     XL
                        Ladies Size       8             10        12           14     16
                        Chest (to fit)   30             32        34           36     38

DORSET ORTHOPAEDIC SAFO                                  writes, “I have been recommended to a new
Dorset Orthopaedic Company Limited is an                 clinic who fit leg supports to stop tripping. I
independent orthopaedic company                          went to see them and ordered a Silicone Ankle
manufacturing bespoke prosthetic and orthotic            Foot Orthosis which I must say are excellent. I
products. The SAFO (Silicone Ankle Foot                  don’t even feel I am wearing them, they are
Orthosis) was invented to treat drop-foot. The           very light, I can walk quicker, and I have more
SAFO has a central reinforcement to assist               confidence in walking on the street without
lifting of the foot during the swing phase of            tripping. I feel they are much better than
walk to prevent tripping. There are two ways             AFO’s, I can recommend them highly.”
to purchase a SAFO; either arrange a visit to
the Ringwood based clinic for a consultation
or visit a qualified Orthotist in your local area
for a SAFO assessment. There are two
different types of SAFO; the SAFO Walk, which
has external Velcro straps that wrap around
the outside of the silicone, costs £398.00* per
SAFO and the SAFO One, which has the                     A SAFO leaflet is enclosed with this Newsletter
Velcro moulded into the silicone, costs                  and for more information contact Christine
£653.00* per SAFO. Both styles of SAFO                   Emm or Clare Hampton, Dorset Orthopaedic
work in exactly the same way. Some NHS                   Company Limited, 11 & 18 Headlands
Hospital/Primary Care Trusts will fund SAFOs.            Business Park, Salisbury Road, Ringwood,
Therefore we recommended that you contact                Hampshire, BH24 3PB. Tel: 01425 483032,
you GP or consultant to enquire whether this             email: or visit the
service is available to you.                             website: * Prices quoted
                                                         are adult private prices for patients attending
Member, Mr Stimler, who suffers from IBM                 the clinic in Ringwood.

FLU JAB                                                  or practice nurse and
Flu is a highly infectious illness, which spreads        if you are on
very rapidly by coughs and sneezes from                  immunosuppressants,
people who are already carrying the virus. Flu           especially steroids,
symptoms hit you suddenly and severely. They             you must call them to
usually include fever, chills, headaches and             ensure you have been
aching muscles, and you can often get a                  allocated the vaccine
cough and sore throat at the same time.                  as you are vulnerable to the effects of flu (even
Anyone can get flu. But, it can be more serious          if you are fit and healthy) and could develop
for people aged 65 years or over and people              more serious illnesses, such as bronchitis and
of any age with a serious medical condition.             pneumonia, potentially putting you in hospital.
                                                         Remember that even if you had the jab last
As myositis is a long term chronic disease you           year, you need to have it again this year.
are entitled to the flu vaccine free of charge.
The vaccine is administered at your GP
surgery often in a designated flu vaccination            If you’re the carer of an elderly or disabled
clinic. In the news recently was the suggestion          person make sure they’ve had their flu jab. If
that complete stocks had not yet been                    you are in receipt of a carer’s allowance, or are
received at GP surgeries. Many GP’s have a               the main carer for an elderly or disabled
list of at risk patients and they will often             person whose welfare may be at risk if you get
contact you during the autumn to allocate a              flu, ask your GP for advice.
time for you to visit the surgery for the small
injection. If you have not heard from your GP            The flu vaccine is not a ‘live’ virus and is safe

to have when on immunosuppresants.                        For further information about flu and the flu
However, if you have a serious allergy to hens’           vaccine call NHS direct on 0845 4647 or online
eggs, you shouldn’t get vaccinated. If you’re             at and also extensive
pregnant you should speak to your GP for                  questions and answers can be found at
advice, but there is usually no reason why you  
can’t have the flu jab.                                   =273

                                                          The blue badge
BADGE PARKING                                             parking bay map is
BAY MAP                                                   an interactive online
Find out where the blue                                   service launched in July this year and is the
badge parking bays are in                                 first of its kind. It is simple to use, click on your
64 towns and cities across                                town of interest and zoom in on the map to see
the UK by visiting                                        the location of the bays. In addition the map This service was          also details petrol stations and their
launched by Directgov,                                    accessibility, parking bays that fall on red is a useful website          routes in London, the number of bays and
that brings together the widest range of public           whether there is a time restriction on the bay.
service information and services online.

Have you every wondered what the doctor is
looking for when they perform a certain blood
test, or what a normal range for a particular test
is? Well many can be found explained in simple
terms online at

Patients Talking is a website that allows people to confidentially
write a diary about any health condition, and read diaries
written by others with similar conditions. It aims to prevent people feeling alone and allow them to
compare notes. It is free to search the website. However, to log in and read further requires a
subscription of £5 per year. I did a quick ‘free’ search myself and found the diary of an IBM sufferer.
Visit for further information.

When you take medicines for a long period of time it is important not to
become complacent and from time to time you should re-read the Patient
Information Leaflet that comes with your medication. All these leaflets and
further information can be found online at

The Office for Disability Issues was established
at the end of last year and in July this year              advertised for disabled people to join them as
published its first Annual Report to the Prime             Members of Equality 2025. Members will need
Minister. The Office of Disability Issues                  to commit about 20-25 days a year and will be
endeavours to make sure that disabled                      paid for the time they spend doing work for the
people’s needs and views are at the centre of              new organisation.
the Government’s work on disability and that
disabled people are respected as equal                     We are looking for as wide a range of disabled
members of society. The report can be found                people as possible including disabled people
at and this                 from marginalised groups. They do not need
website is a place to share information and                to have previous experience in a similar role or
ideas, and hear from you your thoughts to                  working for government.
advance their goal of improving the life
chances of disabled people.                                Full details of the role of Members and the
                                                           skills and experiences needed are available
Colin Welch writes,                                        online on, or by
“Equality 2025 is an important initiative that will        phoning me on 01256 383611, e-mailing
help the life chances of disabled people by      ,or text-phoning
ensuring that they will have a direct voice to             0870 609 4219.
central government helping to design policies
and services that disabled people really want.             Thank you for reading this request, and in
                                                           anticipation, for any assistance you are able to
The Office for Disability Issues has recently              provide.”

CHILD IN A MILLION                                         We are interested in families who are at a
                                                           pivotal stage of their treatment/diagnosis,
Anglia Factual (part of                                    whether it be a new trial or lifesaving procedure.
Granada TV) are making a 6
part series for Channel 5                                  We would like to speak to families who may be
Science. The series; due to                                interested or like more information. Every
air towards the end of the year is called “Child           conversation we have with you is strictly
In A Million” and it’s about Children with rare            confidential, and we also have an excellent
conditions who attend Great Ormond Street                  relationship with the hospital and work closely
Hospital for their treatment.                              with the consultants and the press office, and
                                                           if you have any concerns please speak to me.”
Katrina Boyd writes, “The main aim of this
sensitive documentary series is to follow the              For more information please contact Katrina
Child and the Family on part of what is often a            Boyd on 020 73918936 or 07932 604540, or
very long journey, at home and in the hospital.            email:

This is a great place to start if you are not sure
where too! The website is a directory jam
packed with information on accessible leisure
pursuits, holidays and travel, transport, mobility products, and daily living services for disabled
people, their families and friends. Visit

Homecraft Rolyan is the UKs largest distributor of
Daily Living, Therapy and Paediatric products. With
over 9,000 items available on-line from one
convenient source, you are sure to find the solution to meet your needs. I visited this site and some
of the gadgets are very impressive. I was most impressed with those of personal care as I know
many of you have difficulty in reaching to brush you hair etc. Their catalogue includes long handled
combs and brushes, shoes laces which lock so you do not have to fiddle around trying to tie them,
dressing sticks and a gadgets to hold toilet paper so you can clean with confidence. To browse
their products visit or call Customer Services 08702 423 305.

Rob Fenton has been updating the list of “buddies” on the website but has had his e-mail returned
from those on the list below. If you are one of these please e-mail Rob at
with your correct e-mail details.
Thank You.

David - (Hinckley, Leics)
Sue - (Oakley, Basingstoke)
Sue - (Windsor/Maidenhead)
John - (Milton Keynes)
Jim - (Appleby-in-Westmorland)
Alex - (Cumbernauld)
Joyce - (Paignton, Devon)
Brian - (Leicester/Peterborough).
Lindsey - (Bexley, Kent)
Carol - (Sheffield)
Beverley -
Maria - (Bristol)
Pat - (Cookstown, Co. Tyrone, N. Ireland)
Margaret - (Bury).
Stewart - (Newcastle)
Diane - (Bradford)
Lucy - (Hull).
Paula - (Wakefield).
Keisha - (Birmingham)..
Clare - (Carmarthen, Swansea area)
Sue - (Wigan).
Deborah - (Lincoln, Newark, Grantham)
Gordon - (Bedford).
Anne - (Stafford/Stoke-on-Trent)
Shelley - (Haringey, London)...

It would be very much appreciated if you change your e-mail address to let Rob know so that he
can keep the buddies list up to date

WELFARE ADVICE                                        832463. If you telephone please tell Janet you
Janet Horton can be contacted at, 1 Fellstone         are a Myositis Support Group member for she
Vale, Withnell, Chorley, Lancs, PR6 8UE. She          helps members of other organisations as well.
will be pleased to help Myositis Support Group
members regarding welfare advice. You can             Janet cannot give any medical advice. Any
also speak to her by telephone on a Monday or         member requiring information of this nature will
Friday between 10am and 12noon on 01254               they please get in touch with Irene or me.

To search the medical literature yourself visit or Below
are the most recent medical reports, if you would like a copy please send a SAE to the office
stating your request and we will do our best to obtain a copy for you.

1.   Therapeutic options in autoimmune inflammatory myopathies
     (dermatomyositis, polymyositis, inclusion body myositis).
     Pongratz D. J Neurol. 2006 Sep;253(Supplement 5):v64-v65.

2.   The heart in dermatomyositis and polymyositis.
     Lundberg IE. Rheumatology (Oxford). 2006 Oct;45 Suppl 4:iv18-iv21.

3.                             .
     Dermatomyositis. Callen JP Clin Dermatol. 2006 Sep-Oct;24(5):363-73.

4.   Use of etanercept in the treatment of dermatomyositis: a case series.
     Iannone FJ. Rheumatol. 2006 Sep;33(9):1802-4.

5.   Possible role for tumour necrosis factor inhibitors in the treatment of resistant dermatomyositis
     and polymyositis: a retrospective study of eight patients.
     Efthimiou P Ann Rheum Dis. 2006 Sep;65(9):1233-6.

6.   Sporadic inclusion body myositis--diagnosis, pathogenesis and therapeutic strategies.
     Dalakas MC. Nat Clin Pract Neurol. 2006 Aug;2(8):437-47.

7.   The Juvenile Dermatomyositis National Registry and Repository (UK and Ireland)--clinical
     characteristics of children recruited within the first 5 yr.
     McCann LJ. Rheumatology (Oxford). 2006 Oct;45(10):1255-60.

8.   An international consensus survey of the diagnostic criteria for juvenile dermatomyositis (JDM).
     Brown VE. Rheumatology (Oxford). 2006 Aug;45(8):990-3.

9.   Advances in the treatment of juvenile dermatomyositis.
     Stringer E. Curr Opin Rheumatol. 2006 Sep;18(5):503-6.

10. Composition of calcifications in children with juvenile dermatomyositis:
    Association with chronic cutaneous inflammation.
    Pachman LM. Arthritis Rheum. 2006 Sep 28:54 (10):3345-3350

For future newsletters we would like to hear of your good news. Have you just got married,
celebrated the birth of a baby, has your child returned to school full time, have you passed your
driving test, graduated, gone back to work, off all medication and discharged from hospital. We
would love to hear from you. Please send your story to the office or email and if you wish to include a photo that would be great. For it is this
information that makes the newsletter interesting reading.


                                 Facts, feeling and future hopes
                          An accessible, realistic and sympathetic guide
                                                  Edited by Jenny Fenton
                                           £14 including postage and packaging

                            Thoughtful Publications, PO Box 46214, Ealing, London W5 1YF

The conference next year will be our larger four yearly conference in Birmingham and the proposed
date is Saturday 14th July. Irene is at present busy with the preparation and inviting speakers to
attend. The response has been excellent with the majority of them coming, so every form of
Myositis should be covered. On top of this, if all goes to plan, we will have one of the most highly
respected specialists flying over from the United States to be with us. We have not yet confirmed
the venue but we have a short list to visit in the next few weeks. Please add this date to your diary
for I am sure this is one conference not to miss.

Thank you for your letters, emails and private financial contributions in support and in appreciation
for the charity. You are very kind. In closing I must also offer my appreciation to Irene for work that
she manages to get through without ever taking a backward step and to Paula for her invaluable
help, her computer skills and scientific knowledge. They really are a dynamic duo!

Les Oakley – Chairman

  The opinions expressed in this newsletter are not necessarily those of the Myositis Support
  Group. We do not endorse any product or treatment mentioned in this newsletter. Our aim is to
  keep you informed on latest issues.
  You should always consult your doctor before changing any medication. Whilst every effort is
  made to ensure the information contained in this newsletter is accurate, the Myositis Support
  Group accepts no responsibility or liability where errors or omissions are made.


Myositis Support Group Web Shop is now OPEN
Email from Paula Oakley

Sorry about this impersonal email but this is a mass mail to all my friends who online shop!!

Some of you may be aware that I am a Trustee of the Myositis Support Group. I was diagnosed
with Juvenile Dermatomyositis when I was six years old. Today I am well (although a little barmy
at times!) but many other sufferers are not. The Myositis Support Group is a small charity and we
urgently need to raise funds for more research. Therefore we have set up a web shop - You can help us raise funds just by shopping online!

Next time you shop online do it through the Myositis Support Group Web Shop……
Because every time you use our web shop to go to a retailer’s web
site and subsequently buy something, you’ll automatically earn money for us!
You don’t pay anything extra by using our web shop but you must go via it for the
charity to benefit. is home to over 100 retailers ranging from well known high street stores
(including John Lewis and M&S) to ethical shops.

I am certain you will find our web shop the perfect solution for all your online shopping needs.
For my friends with children you will find Mothercare, the Early Learning Centre, Igloo Kids,
Kiddicare, Kids Window, and Teach My Child residing in the web shop.
For my friends who like entertainment you will find Amazon, HMV,, CD wow,
Gamestation, Filmnight and
For us girls there’s Buy Cosmetics, Contessa, La Senza, Wow Woman and Thorntons Chocolates.
And for anyone who wants to send me flowers you will find Teleflorist!

It’s not just a shopping site! You will also find great deals for home, car, travel and pet insurance.
As well as gas, electricity, telephone and internet suppliers you’ll also find DIY stores. You can
even book your next holiday, with great UK deals and Flight offers.

With only a few months till Christmas I thought I’d let you know that I’m going to do my Christmas
Shopping through the Web Shop. Maybe you could too? This is a really simple way to raise funds
as it doesn’t cost you a penny or require any effort!

I want to spread awareness of our web shop so if you would send the details of to your fellow on-line shoppers I would be more grateful.

Thanks and bye for now, Paula xxxx

   Its fast, safe and hassle free but don’t just take my word for it visit
        and see for yourself !


               * I have been unable to contact these prize winners.
 If this is you or you sold the winning ticket please can you call or e-mail the
 office with your address so that your prizes can be sent to you. Thank you.

146 Newtown Road, Woolston, Southampton, SO19 9HR
    Telephone: 023 8044 9708 Fax: 023 8039 6402
E-mail: Website:


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