ANNUAL GENERAL MEETING 2004

There were no nominations for election onto thecommittee and the outgoing committee kindlyoffered to continue in their respective officesand were re-elected on bloc.

Chairman - Mr Les OakleySecretary - Miss Paula OakleyTreasurer - Mrs Jo GoodeCommittee - Mr Tony HindleMrs Sue HindleMrs Elaine AubreyMrs Jenny FentonMr Rob FentonMr Mike Goode

The minutes of the previous AGM held on 17thJuly 2003 were accepted. Treasurer, Jo Goode,proposed that we elect a new auditor. She gaveas her main reason for the need to change asbeing geographical and she needed to be incloser contact with the auditors. Chairman, LesOakley proposed that they continue with thepresent auditors as Geoff Goodridge inparticular had given his time free of chargesince the charity was formed. He was pleasedwith the charities progress and financial statusand looked forward to his role and the part heplayed. The members were asked to give ashow of hands that proved in favour of thetreasurer’s proposal.

MYOSITIS S u p p o r t G r o u p146 Newtown Road, Woolston, Southampton, SO19 9HR

NEWSLETTER Telephone: 023 8044 9708 Fax: 023 8039 6402E-mail: msg@myositis.org.uk Website: myositis.org.uk

November 2004number 57

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Dear Member,

There is much to report and there is alot of charity activity these days whichfor me is a good indicator that thecharity is fulfilling its role andprogressing. I trust this latestnewsletter will give a helpful insightinto what has been going on.

The charity Annual General Meetingand Mini Conference was verysuccessful. In fact the conferenceevolved into a much more informativemeeting and most who attended wouldsay it was more than a mini event. Thisreflects the progress being made inmedical research and developmentsthat are taking place.

The venue proved and it has to besaid, first class on the day; however,there were a few problems for acouple of members the day beforecaused I expect through weekend staffchanges. Will there ever be the perfectvenue? We almost found one!

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MINI CONFERENCE 2004

All the speakers kindly attended and gaveexcellent presentations. If you’re not a medicalperson and I’m certainly not, they can at timesbe difficult to follow. There is no simple way tomedically explain Myositis and its associatedproblems. However, two of the speakers’presentations have been posted on the charityweb site if you need to clear up or understandany points of interest.

The programme was started by our President,Dr Jo Cambridge, who spoke on theImmunology perspectives in Myositis.

Dr Shabina Sultanspoke about theMyositis OutcomeAssessmentCollaborative Studyand the RituximabTrial.

Janelle Jones presented the Iris Hazel MemorialTalk. She gave an excellent talk withphotographic display that I understand wasprepared by her husband on how she hascoped with Myositis from a young girl into adultlife. It gave me great pleasure in presenting herwith a gift on behalf of the charity in recognitionof the effort she made and for giving a nonmedical but equally as important aspect to theconference programme.

Les presenting Janelle with an engraved vase forgiving her talk.

Dr Hector Chinoypresented anupdate onGenetics inMyositis.

Professor DavidScott presentedthe CreatineStudy resultsand BarbaraMason anupdate andreview aboutthe SELAM Trial.

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Professor David Scott gave the finalpresentation on Myositis in the future. This wasfollowed by a question and answer session.

FEED BACK FROM MEMBERSATTENDING

May I offer my grateful thanks to members whoattended and kindly completed our conferencefeed back forms. The comments were verysupportive and complimentary. However, therewere two main points that cropped upregularly. These were there was not enoughtime for members to circulate and talk andsome of the medical language was difficult tofollow. There is no easy answer to both thesepoints. To extend the conference over two daysparticularly if it was still free to members wouldincur a huge financial cost for the Group.

The following are snippets from the forms:

“It was the first time my husband and myselfhad attended and it certainly won’t be our last.As the parents of a Juvenile Dermatomyositissufferer it was good to talk to many new friendsand share experiences, strength and hope. Theongoing research programmes certainlyappear to offer much hope for the future. The

buffet lunch was superb and yes, we did goback for seconds!”

“Thank you for organising a wonderful event.Mom and I found the speakers most informativeagain. The food and facilities were excellent.”

“It is very difficult to criticise a day that hasbeen so well arranged and informative and to“knock” any of that work would be churlish.However, there is a trend that has been at otherconferences too and that is of a high technicalcontent of some lecturers that left the audiencedazed to the point of boredom.”

“Brilliant, have learnt so much and beeninspired by people I’ve talked to. I am a staffnurse on a rheumatology ward. This will helpmy patients and I will spread the word aboutthe Support Group.”

“A very enjoyable and informative day and itwas lovely to put names to faces and to realisethat Myositis is not the end of the world. I cameaway feeling far more positive.”

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FUND RAISINGGRAND SUMMER DRAW

The winning tickets were drawn on Sunday12th September in the presence of the fullCommittee. The Draw was well supported andan estimated £1300 has been raised. Therewas a fantastic selection of prizes donated somany thanks to Draper Tools and thenumerous private donators. The list of prizesand accompanying winners can be found atthe end of this Newsletter.

GrandSummer DrawPrizes

Laura Oakleywith ChairmanLes Oakleydrawing thewinningtickets.

CRAFT SHOP - BALLYMENA

Frances Ferguson writes, “I am enclosing acheque for £29.45 donated by the Ladies Groupof the Reformed Presbyterian Church fromLimavady who visited Marilyn’s craft shop.”

ROTORACT CLUB SOUTHAMPTON

I was kindly invited to a cheque presentation bythe club’s outgoing president, Alex Henderson.Their year of fund raising, amounting to over£1000, was presented to me. The majority ofthis sum was raised from a Burn’s Night and a30th Anniversary Ball. I had the opportunity ofspeaking to the members about the charity, the

work we do, and the research we sponsor. Iwas also able to sit in during their meetingwhich gave me an insight into what a just andfriendly organisation of young people they areand to see their new president, Quentin Jamesinstalled. Our charity was put forward worthy ofsupport by Maurice Geary the father of a memberwho has Myositis. Maurice is an active memberof Rotary and avid supporter of Rotoract.If our younger members wish to extend their

social circle and meet new friends, I canthoroughly recommend that they get in touchwith their nearest Rotoract branch. I just wish Iwas younger!

EASTLEIGH & CHANDLERSFORD ROUND TABLEThe Tablers invited me to a chequepresentation that was not only the conclusionto their fund raising but also sadly the end ofthis branch of the Round Table. They wanted togo out on a high note and this they certainlydid. Our charity cheque was for £1200.00.

Earlier in the year they held a very successfulRace Night in Eastleigh. Irene, me and lots ofour friends joined in this event. Most of theprize money won went back into the kitty. Ian,Tony the chairman plus the other Tablemembers worked very hard and spent muchtime in the pub prior to the race night planningand making sure that this fund raising occasionwould be a bit special. And it was!

The lads are keeping in touch and still havesocial evenings. I would not be at all surprisedif they do not keep up their role in helping localcharities in the future. I’m sure we wish them allevery success and give them our final word ofthanks for helping us.

HEALTH CLUB

Member, Mrs Mabbott writes, “Please acceptthis donation of £25 with best wishes from thehealing group I attend.”

CROWN HOTEL, ALTON,HAMPSHIRE

Member, Su Paull, writes, “We had a charity“80’s” theme night in our local pub on 20thAugust in aid of the Myositis Support Groupand the Phyllis Tuckwell Hospice. Most of theraised money was given to the Group as I putthe money collecting boxes on the bar for afew weeks before the event and with the moneyraised for us on the night has amounted to £200.

We had a Karaoke, pop quiz and a disco suppliedby Suade. It was a fantastic evening and a fewdid dress in fancy dress of the times includingmyself! Pop Idol contestant, Glen Harvey gaveus a few tunes with his guitar. He is a local guyand it is great that he gave us his support.

I’m definitely having another night on the 20thNovember, same place and same theme but

more school disco fancy dress!”

If any members would like to attend get intouch with Su at, 3 St. Lawrence Rd, Alton,Hants GU34 2DB.

RUBY WEDDINGANNIVERSARY

£25 was sent in recognition of the 40thWedding Anniversary of Brian and HazelRollins of Wigan with a quote of, “Keep up thegood work.” Hazel and Brian also gave to thecharity £50 in respect of their celebration.

GOLDEN WEDDINGANNIVERSARY

Member, Mrs June Burt writes, “My husbandand I celebrated our Golden Wedding on the7th June. Instead of presents we asked fordonations to the Support Group and I amenclosing cheques for £485.00. We had alovely day with friends and relations popping inall day. We were in the garden and had drinksand buffet food. My daughter flew in fromAustralia and her and my son decorated thehouse with lots of gold and yellow. We had areally lovely day. Although my IBM is causingme many problems I have a wonderfulhusband who takes care of me with help frommy caring friends. The only regret I have is thatmy son and daughter live so far away. Thankyou so much for the Newsletter, we know weare not alone.”

KINGSMEAD INDEPENDENTFINANCIAL SERVICES -HAMPSHIRE

The Eastleigh office staff have been supportersof our charity for many years. Jacqui Parkerhas left to work in London and has asked thather share of the office lottery syndicate bedonated to the Support Group. Jacqui knowsabout my daughter, Paula and Irene from the

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“school gate” days. Office colleague, GeoffNorgate writes, “£8 enclosed! Our syndicatehas never been very successful!”

THE BUCKMAN FOUNDATION

Mrs Irene Buckman writes, “Thank you for thelatest edition of the newsletter. It has been sogood to watch the development of the Groupover the past years and I congratulate you onthe growth and spread of your activities. I havepleasure in enclosing you a cheque of £100,with every good wish for your continuedsuccess.”

FAIR OAK MASONIC LODGE -HAMPSHIRE

The Lodge has again been very kind to us.Lodge secretary, John Eckett writes, “Pleasefind enclosed a cheque for £250.00 which hasbeen taken from the Lodge Social CommitteeFund. Both W Bro Geoff and W Bro DavidPragnell, the Worshipful Master, expressed thewish that it be donated to your charity. Weknow the importance of your work and arehappy to continue to support you.”

SCOTTISH & NEWCASTLEFOUNDATION

John Adams appealed to the foundation on ourbehalf and they sent us a charity voucher for£150. This is John’s last fund raising effortbefore he retired from the company. He and hiswife Chris are now emigrating to Australia. Thiswonderful and caring couple along with theirsister, Silvie, have been supporters of thecharity for many years. They have raisedthousands of pounds for us by being a majorforce in selling our summer draw tickets,donating prizes and for raising sponsors for theLondon marathon. As you can imagine I willsorely miss them for their reliable anddependable help. Our loss is Australia’s gain. Iwish them both every health and happiness intheir new life. Do you think I’ve grovelledenough for a holiday out there?

GIVE AS YOU EARN AND GIFT AID

I would like to thank members who havedonated to the charity through these means.Any member wishing to donate through GiveAs You Earn please contact your employer tosee if they participate in this scheme. If youhave not filled in a Gift Aid Form and would liketo please contact the office for a form.

FLORA RUN - HYDE PARK

Member and pensioner, Mrs Di Farndale,entered the run in September raising £15.

EDMONTON CENTENNIALMARATHON - CANADA

We received a cheque from the Running Room,Canada for $160.00. This was raised byRoxanne Robertson who ran in this run for theGroup.

GREAT NORTH RUN

We had six runners in this event. They wereDawn and Mark Farrar who finished in a time of3hours 30 minutes. Mark said, “Well, wefinished it - didn’t break any records but wewere far from last. It was achieved by acombination of running and walking and sheerdetermination.”

Dawn and MarkFarrar after therun wearingtheir muchdeservedmedals

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Julie Hughes, Kathryn Darke, Suzanne Darkeand Peter Treadwell all finished with timesvarying from 1hour 50 minutes to 2hours 40minutes. Julie said, “The atmosphere andexperience were fantastic and we are all busycollecting the sponsor money in. It took meuntil the following Thursday to get a decentpair of shoes on thanks to all the blisters!”

Irene and our girls watched the run ontelevision and were really pleased to see Markwearing his Myositis t-shirt as he passed andshook hands with double Olympic champion,Kelly Holmes, on his way through the start. Onbehalf of the charity I thank the runners for alltheir time spent in training and raising sponsorsto help the Group and for completing the race.I’m told the weather provided a good day forrunning. I’ll take their word for that!

As a charity we were able to secure places forrunners in this run. If anyone would like to runon behalf of the Group next year please get intouch by the end of this year so that we havetime to apply for places.

GREAT SOUTH RUN

Group Co-ordinator Irene with her son David

My son, David, took up our cause in this eventon Sunday 10th October raising sponsorsthrough our family and friends. The run tookplace in Portsmouth and even though theweather stayed dry there was a bitterly coldwind coming off the sea. Irene and I wereDave’s sole supporters; others had more sensethan to face such a bleak start to the day.

However, the boy done well, finishing in just1hr 15min 22sec. His finishing position was1333 out of 15,000 runners.

An amusing highlight of the day for me wasIrene pinning Dave’s race number to his chestwhile being jostled by the hive of activity goingon around them. During this delicate processthere was an announcement about the charityhospitality tents for runners being cosseted byour more illustrious organisations. Talk aboutpoor relations!

David at 5 miles and atthe finish with hismedal.

VIDHI NAVEED - A SPIRITED RUN

Vidhi writes, “I finally completed the 5 KM(Flora Light Women’s Challenge) in Hyde Parkon a beautifully sunny Sunday. The only girlamongst the 22000 runners wearing full-lengthtracks (to protect me from UV rays) instead ofrunning shorts, a visual disappoint for myhusband! I managed to complete the run in 34minutes and 20 seconds. Yippee!!!

I was diagnosed with Dermatomyositis (DM) in1998 at the age of 23 with the classic DMsymptoms. At the time I was a personal trainerand an aerobic instructor with a dream of beinga Fitness Master Trainer - a dream which was

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slipping away with every passing day. Normaldaily activities such as climbing stairs, getting offthe bed and even washing hair seemed next toimpossible. I started losing my hair and mymuscles, especially my thighs, sufferedexcruciating pain. Fancy sports cars were acomplete no since low seats meant once I satdown I needed someone to lift me back up.While all my friends were going out partying andgetting drunk on cocktails of alcohol, I was“partying” with doctors and nurses in hospitalstrying to get an accurate diagnosis andingesting cocktails of medicines. Initially mytreatment comprised of prednisolone,methotrexate every Saturday, cyclosporine twicea day, hydocloroquinin and a bunch of othertummy medicines to counteract the effects of allthe above medicines. And that was then!

Now (fortunately) I am in remission and takingfewer medicines (I cannot quote the exactdosage. I would have to ask my med manger -my husband). Obviously DM has radicallychanged my life; but there may be somethingpositive in this: It has made me moredisciplined and focused. No doubt it is difficultand sometimes depressing but I am a strongerperson. I know my limit now (which is why I

only ran 5 KM and not a marathon, but I ran!).My next goal will be half a marathon, which Iwill train for next year.

NAVEED SOHDI - VIDHI’S HUSBAND

Naveed writes, “It was in March 1999 in India,that my first cousin introduced me to her bestfriend and I was smitten. Well perhaps not loveat first sight, but maybe love after five minutes!And four days later, on bended knee, Irequested her hand in marriage.

Dermatomyositis was an acronym for somethingwith incredibly sinister connotations,nevertheless, something I did not understand.A year-long engagement ensued and duringthis period, separated by oceans, I learntvolumes; but we fought over medicines and theadvice of many medical practitioners. Vidhiwanted to halt her intake of medicine, go ‘cold-turkey’; I wanted her to phase out the drugs.Arguments are so difficult to win via phone ande-mail!

In February 2000 we were wed and since thenthe volumes of knowledge have grown from asmall hill to something more reminiscent ofEverest. I know I have learnt so much, and yetam unable to fully comprehend the complexityof DM and the associated (preternatural)effects. I often sense Vidhi is surfing aninvolution ocean of mixed feelings, of dreamslost and of questions with no answers. Andwhilst I shall never fully comprehend what it isto suffer from DM, when my wife is cut, I shall(metaphorically) bleed. Through a mutualrespect and understanding we have managedto cope together for Vidhi to reach a state ofdrug-induced remission and to a point where,against all odds Vidhi has managed to run inthe blazing heat with 22000 other women. AndI am so proud of her.

My only regret: why wasn’t I allowed to run inthe middle of all these sweaty birds!”

Vidhi is a member of the Myositis Support

Vidhi nearing the finishing line

“I did it!”

Group and the London Group. Coordinator forthis locality, Jenny Fenton writes, “I would liketo add what a wonderful and great achievementby Vihdi.

I met Vidhi Sohdi through the Internet about 5years ago and she and I have become firmfriends, even though I’m old enough to be hermother! We were both suffering from our DMcondition and we helped each other cope. Shehad come over to England, from India, to marryNaveed who is the best husband ever. He hasbeen so supportive and caring and helpedVidhi manage her drug regime and basicallyget better. So much so that last weekend I wentto Hyde Park, with my daughter, to watch Vidhirun the 5KM Flora Light Women’s Challenge.She was even running with Olympic athletes -WOW!

She was with 22,000 women and in myestimation she was certainly in the first 500 tocross the line. I must say I had tears in my eyesas she ran past - I was so proud of her. Wecontinued the day with a picnic in the park andbasically had a brilliant time. I met all Vidhi’sfamily who had come all the way from India tosupport her.

Vidhi, you were wonderful. What more can Isay except that I would like all of you readingthis newsletter to show your support andappreciation by making a generous donation tothe Myositis Support Group for this greatachievement. Remember to mention hername!”

I appreciate that the Support Group has threecharity fund raising events a year that I ask youwithout reservation to support. However, thiswas a very special effort by Vidhi and formembers that can respond to Jenny’s request itwill be very much appreciated and endorse theachievement made by Vidhi. - Les.

THE LONDON GROUP NEWS

The London Myositis Support Group met atJenny Fenton’s house on June 13th. Jenny

writes, “We had a BBQ in the garden and itwas a perfect day - sunny and warm but nottoo hot to feel uncomfortable. There were lotsof people there and it is good to see that weare getting together several people with IBM.This is so important as IBM often seems to be

left out when people talk about Myositis.It was lovely to have Jo Cambridge with us andshe helped to answer the questions we oftenforget to ask our consultants.”

“Our next meeting will be on SundayNovember 14th 1pm at Eleanor Davies’s houseat, 24 Queens Gardens, Ealing, London, W51SF, Telephone 0208 997 9890. We will have agood selection of Christmas cards for sale at

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London Group Meeting

Rob Fenton - webmaster with Vidhi’shusband Sohdi

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this event and we are also looking into gettinga speaker.”

“Please ring me on, 0208 998 8718 or Eleanoron, 0208 997 9890 for further details. Wealways welcome new members.”

VERY IMPORTANT REQUEST:MEMBERSHIP UPDATE

As you all know there are no membership feesfor U.K. based members. It is very difficult toknow if people wish to remain members andcontinue to receive our charitycorrespondence. As you can appreciate it isexpensive for the charity to send outinformation that is no longer needed.

To keep our records up to date I have encloseda form that I would appreciate you fill in andreturn within a month. It is vital if you wish tocontinue to receive our mailings you return theform otherwise you will be deleted from themailing list.

I have also requested that you give yourconsultant or G.P.s’ name and address so that Ican keep them informed of our charities workand perhaps their possible involvement.

It has been a few years since this exercise waslast undertaken and your cooperation is vitalfor the well running of the charity. I lookforward to your replies soon. Thank you. - Les.

LONDON MARATHON 2005

HELP!

We are now looking for runners who have beenallocated places for next year’s marathon torun on behalf of the Group. We do not put anypressure on runners to raise sponsorshipmoney as the Group sends out sponsorshipforms to members. If you know of anyone whohas a place please ask them if they would bewilling to run on behalf of the Group.

Thank You

UNIVERSITY CHALLENGE

Morag Johnstone writes, “My daughter, Kirsty,is heading off to the Robert Gordon Universityin Aberdeen to study for a BSc (Hons) inNutrition and Dietetics. She left school with 1Advanced Higher and 7 Highers. It was hardwork at the time but she got there. She iskeeping well and all the back up by theuniversity is in place for her independentliving.”

I’m sure that I speak for all of the charity inoffering her every success in her studies - Les

A DOCTOR’S VIEW QUESTIONS AND ANSWERS

What is Inclusion BodyMyositis and can it be treated?

Inclusion body myositis - often shortened toIBM - is a specific type of inflammatory muscledisease. Its main features are progressivemuscle weakness and wasting. It is similar topolymyositis, but not quite the same. Muscleweakness in IBM generally comes on veryslowly over months or years. Falling andtripping are often the first noticeablesymptoms. In some patients IBM starts withweakness in the hands. This may causedifficulty gripping things. IBM is morefrequently in men than women. It affects boththe proximal and distal muscles. These are thefarthest from the body and the closest to thebody. There is often weakness of the wrist andfinger muscles. Atrophy - which meansshrinking - of the forearms is alsocharacteristic. Difficulty swallowing affectsabout half of IBM cases. Symptoms of thedisease usually begin after the age of 50,although it can occur earlier.

There is no standard course of treatment forIBM. The disease is unresponsive to steroidsand immunosuppressive drugs. Intravenousimmunoglobulin may have a slight, but short-

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lasting, beneficial effect in a small number ofcases. Physical therapy may be helpful inmaintaining mobility. Other therapy issymptomatic and supportive. There is activeresearch on whether biologics are helpful.

There is a lot of interest indifferent diets. Can somethingspecific like a gluten-free diethelp?

There is no clear-cut evidence that a gluten-freediet improves inflammatory myositis. Standardtreatment with steroids, immunosuppressivedrugs, and physical therapy should remain thefocus of medical care. Inflammatory myositiscan occur in people with coeliac disease -which affects the small bowel. However, thefrequency with which this occurs is unknown. Agluten-free diet clearly helps people withcoeliac disease. Gluten is a protein found inwheat, rye, barley and possibly oats. Manydifferent disorders are associated with coeliacdisease, including arthritis of the large joints. Agluten-free diet can improve arthritis associatedwith celiac disease, but there is no reason tosuspect it improves myositis. However, if aperson with myositis has unexplaineddiarrhoea or weight loss, their doctor maysuggest testing for coeliac disease.

At the same time diet is important for us all. Weneed to avoid loosing weight when we are ill,and to avoid gaining weight when we are tooinactive. Steroid treatment in myositis oftenincreases weight, and this can be difficult todeal with. We also need to eat enoughvegetables and fruit and try to keep to the fivea day rule. This can be a tall order and we maynot always get our diet exactly right. But a nearmiss is probably good enough.

Sunlight can make me worse.What can I do about it?

In most dermatomyositis patients, sunlight or

artificial forms of ultraviolet light makes theirskin problems worse. The UV rays in sunlightpresent most danger. Natural sunlight has twotypes of UV rays - ultraviolet-B (UVB) andultraviolet-A (UVA). UVB rays, which causesunburn, are most likely to aggravatedermatomyositis skin disease. Harmful UV raysreflect off water and light coloured surfaces likesnow. They also reach below the surface ofwater.

Sunscreen can be used daily to dry skin about15 to 30 minutes before going outdoors. Evenon cloudy days up to 80% of UV rays still reachthe earth’s surface. As repeated mini exposuresto UV radiation accounts for most exposuredaily use of sunscreens throughout the year issensible.

Patients should avoid direct sun exposure,particularly during 10 AM and 4 PM especiallyduring the summer months when the UVcomponent of sunlight is least filtered throughthe atmosphere. Hats are sensible thoughunpopular. A wide brim hat is ideal.

Sunscreens and sunblocks are essential. Thesun protection factor is defined as the dose ofUV radiation required to produce one minimalerythema dose on unprotected skin. Thismeans the minimal sunburning dose. Somesunscreen products provide more UVAprotection than others. Patients should selectbroad-spectrum sunscreens that containagents that block UVB and UVA with an SPF of30 or greater.

Finally you need to avoid sun-sensitising drugs.Some anti-inflammatory drugs or antibiotics areespecially prone to causing sun-sensitivity andneed to be avoided if possible. You will need toget advice from your doctor about specific drugs.

If you have a question you would like answeredby a doctor associated with the charity in thenewsletter please send it to the office. Pleaseremember that the doctors cannot answerpersonal questions but can give general adviceand information.

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EXERTS FROM THEBULLETIN BOARD

The Bulletin Board on our websitewww.myositis.org.uk is an active place wherequestions are posted and answered by fellowsufferers, family of sufferers, etc. This offers aform of self help that allows interaction oftenwithin minutes of posting your message. Oftenthe best tips and advice you can get is fromsomeone else in the same shoes! Some of thetopics and replies that have appeared on theBulletin Board are described below.

Please take medical advice before followingany of the following suggestions.

ADRENAL GLANDS & STEROIDS

I’m providing the following in case someonehas a need to know. I’ve had polymyositis forover a year now. For quite a few months I wastaking 120mg of steroids. Last month thedoctor was ready to take me off steroids. Butbefore he could do that he wanted to makesure my adrenal glands were still working.When you take steroids your adrenal glandstake a vacation.

I had an ACTH Stimulation test done and myadrenal glands were not working quite right. SoI had to go back on steroids. I’ve heard ofpeople getting sick and tired of taking steroidsand then stop taking them. This can be verydangerous if your adrenal glands are messedup. I have also heard that if you have surgeryyou need extra steroids for a period of time.

What you say is very true. Taking a high dose ofsteroids or even a low dose for a long timedoes stop your adrenal glands from working. Iwear a medical alert necklace because of this,just in case I am unable to communicate that Iam on a high dose of steroids. If you havedental surgery or any kind of surgery youshould speak to your doctor about takingadditional steroids leading up to the surgery.

INCAPACITY BENEFIT

Has anybody got any advice on making asuccessful claim? I have to go (tomorrow) withthe completed forms to my local job centre, I’mdreading it. I hope it is not an interrogation.

REPLIES

I found the DWP people helpful when I firstmade a claim but I then went to my localWelfare rights office (local Council) and theyhelped with the right wording for the capabilityto work forms and completing the DLA forms.

As far as I can remember, my incapacity benefitbegan when the sickness benefit paid by myemployer finished. I did not have to have anyinterviews. I took early retirement on ill-healthgrounds about 7 years ago (I’m 51).

In 1999 I had to fill in form IB50 (Incapacity forWork Questionnaire) concerning the IncapacityBenefit. I was then told that I did not have tosend in any medical certificates or have aninterview as I had “satisfied the test”.

Hope this has helped. All that I can adviseabout the interview is - be honest! Don’tpretend that you can do things that you can’t.Perhaps make a list of all the things you finddifficult - brushing your hair, getting out of achair, whatever. Write down also how far youcan walk unaided, and aided - different thingslike that. They’ll help you to remembertomorrow!

I am now on long-term Incapacity Benefit alongwith Disability Allowance, for which I get thehigher rate for mobility (along with a blue badgefor the car) and the middle rate for care.Disability Allowance is for life.

Since I first applied for Incapacity Benefit andDisability Allowance, I have never had to havean interview or medical. As soon as the BenefitsAgency find out it is DM they allow it straightaway, or so it seems. I think that it must be oneof the illnesses on their list (unlike the DOH on

their list of exempted illnesses for prescriptioncharges!!!!!)!

Both my GP and my Consultant wrote letters forme re DLA, and I got a long term sick note frommy GP. I too get higher Mobility/Car and lowrate Care, as I can’t cook a full meal or get abath by myself. Tell them as much as you can.

Note: members may like to get the advice ofour Welfare Advice Officer, Janet Horton,whose contact information is at the end of thisnewsletter.

FLORESCENT LIGHTING

Is there anyone that has DM and has flare upsunder florescent lighting? I have long thoughtso, but recently I am now sure.

REPLIES

I went to http://www.google.com and searchedon: fluorescent lighting dermatomyositis

Google returned many responses. Most wereabout Lupus with some minor reference todermatomyositis. One response at,(http://www.labour.gov.sk.ca/safety/radiation/ultraviolet/printpage.htm) said: “Incandescent andfluorescent lighting are widely used and do notpresent a UVR hazard under normal use.Incandescent sources usually have a very lowUVR content. Fluorescent lamps may leak someUVR through the phosphor coating, but thelevels are generally low. Halogen and xenonlamps can emit UVR.”

Other conditions known to be aggravated byUVR exposure are systemic lupuserythematosus (Ramsay 1997) anddermatomyositis, a severe inflammatory skinand muscle disorder.

I think it might be the UV in the lighting. Yourskin is an excellent detector of ultraviolet (UV)radiation. When you expose bar skin to sunlight,your skin will either turn brown (a suntan) or red

(a sunburn). These responses by your skin area signal that the cells under your skin are beingassaulted by UV radiation. UV radiationwavelengths are short enough to breakchemical bonds in your skin tissue and withover prolonged exposure, your skin may wrinkleor skin cancer may appear.

http://www.cheef.com/buffaloskin/Answers/The_Pro_Con/Skin_Cancer/Fluorescent_Lighting/Inspired_Concepts/inspired_concepts.htmlJust for information. You can buy clothing withbuilt in UV protection. Type UV protectionclothing into Google and you get lots of siteswhere you can buy online.

BLOOD SUGAR LEVELS

Any ideas on controlling your blood sugarlevel? I’ve been on prednisolone sinceFebruary and get major drops throughout theday! All I crave for is sweets!

REPLIES

Eat perhaps 4 to 6 smaller meals per day insteadof 3. Fresh fruit especially apples, pears anddried apricots. Oat cakes and rye crackers arealso good to snack on. Don’t eat any sugar!Sugar causes the terrible lows and exhaustion.

Snack on raw nuts and seeds.

You need food with a low glycaemic indexwhich releases sugar slowly into the bloodstream eg: porridge, baked beans, grapes,apple juice, apples, wholemeal spaghetti,pears, houmous, butter beans, soya milk,kidney beans, lentils, grapefruit, cherries. Iknow it’s not as much fun as eating sweets butyou will feel better.

RESEACH UPDATE

DR SHABINA SULTAN

It has been a very busy year, which in factstarted in August 2003. There have been two

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parts to the research. The first was to assessthe inter-rater reliability of two tools to assessdisease activity and damage in patients withmyositis. In essence I was checking if twodifferent doctors would get similar results whenusing these questionnaire based assessmentson the same patient. I have now assessed atotal of 120 patients in seven centres with thelocal physician; University College London,Pittsburgh, Sweden, Prague, Manchester, StGeorges (London) and Queens Square(London). The initial results are promisingalthough some aspects of the tools mayrequire modification before further use. Theother aspect of the research has been toassess the effect of B lymphocyte depletiontherapy using rituximab in myositis. I have nowtreated 5 patients resistant to conventionaltherapies. One patient now appears to be inremission and the treatment has failed in thesecond patient who has required re-treatment.It is too early to assess the effect in the otherpatients. The research has been generouslyfunded by the Myositis Support Group (UK).

DR ROBERT COOPER

The Adult Onset Myositis ImmunogeneticCollaboration (AOMIC), which has nowexpanded to include 56 UK consultants, hasbeen running for 4 years, and collected morethan 100 polymyositis (PM) and more than 100dermatomyositis (DM) patients’ clinical detailsand bloods for genetic analysis. Thepreliminary genetic results confirm those ofFred Miller, but because our myositis patientsub-groups are so homogeneous (i.e. allCaucasian) and our sample sizes soconsiderably larger than Fred’s, we have beenable to show clear genetic differences betweenPM and DM. This is very encouraging, as itsuggests that the statistical power resultingfrom our larger sample sizes will enable us todetect further genetic differences, and so togain further insights into the diseasemechanisms underlying these myositis sub-types. Gaining mechanistic insight is veryimportant if therapeutic developments are tofollow. As a result of the abstract-publishing ofthese preliminary results, which have now been

presented at both British and AmericanRheumatology meetings, a successful bid waslodged with the ARC, which has now funded DrHector Chinoy as a Clinical Research Fellow for3 years. Hector will work very closely withmyself and Prof Bill Ollier to further thisimportant work. Hector’s job is to visit thecentres contributing patients to AOMIC, and tosee and examine all of the recruited patients.This will allow us to examine the effects ofgenetics on disease severity, hopefully to beable to determine which patients have the moreaggressive disease, and thus to determine whoneeds the more aggressive treatment. A morerecent development is the possibility of agenetic collaboration with the Juvenile DMgroup in Great Ormond St and the Institute forChild Health (ICH). I recently met Prof Woo andDrs Lucy Wedderburn and Clarissa Pilkingtonand there JDM research group recently in ICH,and there was general agreement thatcollaboration is the way forward, so long ascertain problems can be ironed out. The JDMgroup have around 100 JDM patients through anational collaboration similar to AOMIC, so agenetic comparison of JDM and adult DM doesnow look viable. These are very excitingdevelopments, and I would like to formallythank the Myositis Support Group, who haveand continue to financially support our work inManchester. I think the 3 year ARC fellowship isa direct result of the results generated throughthe work, and as this was in part fundedthrough the Group, this contribution needsrecognition. The Group deservescongratulation on its contribution to the academic progressmade in such a short time. It was a greatpleasure to meet so many Group members atthe Group’s Manchester meeting in Stockport,and many of you will meet Hector again in thecoming 12-18 months, as part of his ARCFellowship work. If he appears tired, it isbecause he has just had his first child, a boyhe and his wife Ann have named Luke.

SELAM TRIAL

The trial is ongoing and patients are stillneeded to participate in this important study.

Please contact Barbara Mason trial co-ordinator on, 0207 848 5791 for furtherinformation. Unfortunately this trial is notsuitable for IBM patients.

CHRISTMAS CARDS

Honesty has always been the best policy. Theycould be selling faster! I have enclosed anotherorder form for members that may havemisplaced the previous one sent out and Ihope I can generate a response. Nevertheless,I thank members for orders that been received.

FOR SALE

Power Tec Sunrise Electric Wheelchair inexcellent condition. 5 years old but little used.With extra kerb riser and neck rest. Cost over£3000 new offered at £800 o.n.o. The Chair isin the Stafford area. Please contact Irene at theoffice on 02380449708 if you are interested.(We have agreed to act as an intermediary forthe member selling this chair. It will be aprivate transaction between buyer and seller).

WELFARE ADVICE

Janet Horton will be pleased to help memberswith welfare advice and can be contacted at 1Fellstone Vale, Withnell, Chorley, Lancs, PR68UE. She is also available to speak to you by

telephone on a Monday or Friday between10am and 12 noon.

Please ring: 01254 832463. If you telephoneplease tell Janet you are a Myositis SupportGroup member for she helps members of otherorganisations as well. Janet cannot give anymedical advice. Any member requiringinformation of this nature will they please get intouch with Irene or me.

POSTERS

Enclosed are two posters. Would you pleaseon your next visit to your hospital ask if theycan be displayed: one gives informationabout the Support Group the otheradvertises Jenny Fenton’s book. If you visitmore than one hospital or clinic let us knowand we can send you further copies.

POST SCRIPT

Finally, I would like to thank everyone who hascontributed to this newsletter and for all thework the committee, members and friends dobehind the scenes and in particular Rob Fentonfor maintaining our Web Site.

Wishing you a happy and peaceful Christmas,

Les Oakley, Chairman

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The opinions expressed in this newsletter are not necessarily those of the Myositis SupportGroup. We do not endorse any product or treatment mentioned in the newsletter. Our aim isto keep you informed on latest issues. You should always consult your doctor beforechanging 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 omissionsare made.

146 Newtown Road, Woolston, Southampton, SO19 9HRTelephone: 023 8044 9708 Fax: 023 8039 6402

E-mail: msg@myositis.org.uk Website: myositis.org.uk

GRAND SUMMER DRAW PRIZE WINNERS 2004

Prize Ticket Name

£500 2549 S Moss London£100 7741 S Rathbone Chipping Norton£100 3349 I Buttress WarringtonDraper Cordless Combi Hammer Drill 7903 R Dick BrackleyAlba DVD Player 1767 M & J Bowes DunsPower Devil Garden Vac 4990 D Phillipson ManchesterHinarie Stainless Steel Fryer 7751 V Gosling LowerstoftAccurist Mens Watch 1836 M & J Goode MethwoldGift Voucher £20 5410 P Jones W. MidlandsGift Voucher £20 5511 R Clarke BromsgroveGift Voucher £20 8155 D Worth BristolGift Voucher £20 704 E Young CambridgeGift Voucher £20 7626 R Tarrant CambridgeBT Cordless Telephone 7775 T & S Hindle DursleyTefal Kettle 6803 H Herron SalisburyTefal Toaster 5697 R Jones WrexhamJML Super Vac 4988 J Phillipson ManchesterPair of Touch Operated Table Lamps 7342 C Dunn CheshireMoulinex Turbo Handheld Mixer 8045 Grover HoveAcctim Large Clock with Calander 3662 P Carr WirralKingavon Rechargable Cordless Spotlight 4368 F Rankin DunblaneOversized Wooden Salt & Pepper Mills 7122 D Yetton W. SussexStanley Screwdriver Set in Organiser Case 6426 S Bridges CeredigionLarge Thermos Flask & Food Flask 3177 G Ward DevonThermos Flask & Mug 4301 Ringleberg StaffordThermos Flask in Carry Case 2457 Milford TorquaySmall Suitcase 7698 G Booth DartfordBale of Towels 5158 H Warrington IpswichBlack Bag 6251 J Langley FreelandRuck Sac 5532 Wright PudseyHandcrafted Xmas Stocking & £10 Voucher 5764 L Burt LetchworthMarks & Spencer Gift Boxed Toiletries 4823 P Levett BillingshurstGift Voucher £10 136 H Edwards HolyheadMyositis Support Group Sweatshirt 2421 P Couch BiminghamMyositis Support Group T-shirt 1641 G Cunningham Kilsyth