tymes issue 48 (summer 2004) : succeeding with me

EXPLORING Anti-Viral Drugs

House of lordslaunchLord Clement-Jones

www.tymestrust.orgThe Young ME Sufferers Trust

SUCCEEDIN

GW

ITH

METYMES MAGAZINEIssue 48 Summer 2004 £1-95

Do Families wantPsychiatrists?We Investigate

The virtualclassroomEarl Howe

SHIRLEY CONRAN HONOURED WITH OBE

What’s Inside

2 Tymes Magazine Issue 48 Summer 2004

WHAT YOU THINKThank you again for everything you are doingat the Tymes Trust which is such a positivelifeline for Elizabeth and ourselves.Jane Colley

Just to let you know that I sent Sandi Toksvigwho is a presenter on LBC Radio an emailasking her to read out the Tymes Trust webaddress; told them what a life saver yourorganisation had been for us as a family. Iwas so glad she read it out.Karen Stone

Thank you so much for everything you aredoing to support us, words seem very inadequate for the help that people are givingbut all we have to offer and we are moregrateful than you’ll ever know.Debbie Storey

On behalf of the National ME/FM ActionNetwork of Canada, I would like tocongratulate you for all the wonderful workyou have done on behalf of children and youthwith ME. Establishing Tymes Trustcards foryoung ME sufferers is but one of your manyimpressive accomplishments.

My son is making us a new websiteand I am looking after the content. As I hadtaught school for 18 years before becoming illwith ME and FM, I am eager to expand theyouth section. We have a link to yourpartner site Young Action Online. Wouldyou kindly give permission to also link towww.tymestrust.org ? These websites aremost informative and there is nothingcomparable to them in Canada.

I would also like to post yourinterview with Terry Waite from the TymesMagazine Issue 44, Summer 2003 on oursite. The gems of wisdom contained in thisinterview should uplift and benefit all peoplewith chronic illnesses.

The Canadian ME and FibromyalgiaSyndrome Consensus Documents can befound on our website www.mefmaction.net Marjorie van de SandeDirector of Education

[Thank you, Marjorie. Permission granted. Ed]

Dear Reader 3News Review 4When is Your Birthday? 6Tymes Trust Team 8The Sky’s the Limit 10

Exploring 11The House of Lords Launch 12Succeeding with ME 14Seeing’s Believing 16You Tell Us 18Poetry 19Seb’s Manor 20Quotes-we-like 22My Bedroom 23

Just-A-Postcard 24

TYMES trustRegistered Charity Number 1080985

Patron Lord Clement-Jones CBEFriends Patron Lady Elizabeth Anson Chair of Trustees Keith HarleyTrustees Jennie Whitlock

Sally PlayerAlec WesternMargaret Ross

Executive Director Jane ColbyDesign Kerry-Ann EdgeBWKT Mark Colby

Postal Address: PO Box 4347, Stock, Ingatestone, CM4 9TE

Website: www.tymestrust.orgPartner: www.youngactiononline.comAdvice Line and enquiries: 01245 40 10 80Advice Line Hours: Weekdays 11am-1pm &5pm-7pmTymes Trust Data Protection Policy isavailablePrinting by Prontaprint, 11 Runwell RoadRunwell Wickford Essex SS11 7PS

Tymes Magazine Issue 48 Summer 2004 3

The BMA’s Complete Family HealthEncyclopedia states: ‘In Munchausen’sSyndrome by Proxy (MSBP) parents causefactitious disorders in their children.’

Parents are reporting to us that theyhave found MSBP mentioned in their ownor their child’s records. Suspicions thatparents may have harmed their childrencan spark off child protection procedures,particularly where disputes arise overtreatment or school attendance.

Allegations of MSBP fail in law when amedical condition explains the symptoms, butdiagnosis may take weeks, months, evenyears. When ME/CFS is finally diagnosed,medically unqualified people may still doubt it.

Case 1: A mother could not find ajob; her medical records showed she wassuspected of MSBP.

Case 2: A child’s school recordsshowed that teachers had queried a diagnosisof ME/CFS and were trying to impose an

unsuitable regime. Anyone not medicallyqualified cannot make this judgement.

Case 3: A mother found that herdaughter was thought to be suffering fromPervasive Refusal Syndrome (PRS), apsychiatric term meaning total withdrawal,possibly due to child abuse. Refusing to eat,wash or undertake personal care aresymptoms. But severe ME/CFS can make achild too weak to eat or wash. Queryingdiagnosis or refusing treatment is listed ascharacteristic of a parent whose childsuffers from PRS. Query the diagnosis andyou confirm it.

Records can have corrections added. Weadvise families to check their own and/ortheir child’s medical and school records ifthey have concerns.For an article on Pervasive RefusalSyndrome send £1.50 to The Young MESufferers Trust.

In the spotlight: THE TYMES TRUST VIEW

The Young ME Sufferers Trust

Dear ReaderOur summer theme Succeeding with ME canmean many things. Learning to live with andmanage your illness is a difficult challenge atbest. In severe cases it means finding innerstrength to endure through the worst. We areespecially mindful of you and your families

and we send you allour love.

We are delightedthat best-selling authorShirley Conran, whoreads, recommendsand contributes toTymes Magazine, hasbeen honoured withan OBE for servicesto equal opportunities,which, as she explains,includes everyonewith ME. Shirley is

President of the Work-Life Balance Trust andhas suffered with ME for over thirty years. Herfirst public interview about this appeared inTymes Magazine Issue 41.

Our magazine designer, Kerry-Ann, hasjust completed a degree in graphic design.Kerry-Ann was born and brought up in SouthAfrica, where she was one of the first teenagersdiagnosed with ME. We have changed oursummer schedule to help her complete herdissertation and mount a London exhibition ofher work. Success means different things todifferent people.

Can we help you to succeed? Our neweducation partnership, launched in the Houseof Lords, may be the answer. As Dr AlanFranklin once said: ‘If the child doesn’t fit thesystem, then the system is wrong.’

Jane ColbyExecutive DirectorShirley Conran OBE

News ReviewIn a full-page feature on the VirtualClassroom, Jerome Burne remindedreaders that the Chief MedicalOfficer’s Working Group on CFS/MErecommended that ‘e-learningprovision should be made for sickchildren to study properly at home.’He continued: ‘A partnership betweenthe Young ME Sufferers Trust (theTymes Trust) and Nisai, a web-learning company, is being launchedat the House of Lords next week.’

Describing how difficultthings had been for our youngmember BenBryant, Jeromewrote: ‘All thatchanged for Benwhen he becamepart of a projectthat promises totransform theway childrenwho cannot go to school are taught.Already, several hundred have beensupplied with the computerequipment necessary to use avirtual classroom. Impetus for thescheme came from Jane Colby, aformer headmistress and nowDirector of the Tymes Trust. “MEis the biggest cause of long-termsickness absence from school,” shesays, “and conventional educationis a key cause of relapse.”’

Jerome explained howWarwickshire Local EducationAuthority has been developing thescheme, which is now availablenationwide. ‘The latest GCSEresults are the first proof of howwell the new system is working.“They were the best we have everhad with these children,” [David]Teece says.’ A success rate of 96%A-C pass rate as against the usual51% was quoted.

The Click-On ClassroomThe Times 21 April 2004

Source: MedscapeDate: June 28, 2004Author: Laurie Barclay, MDURL: http://www.medscape.com/viewarticle/481996

Dr Barclay writes that ‘Outpatient rehabilitationimproves “Wellness” scores and school attendance foradolescents with chronic fatigue syndrome/myalgicencephalomyelitis (CFS/ME), according to a studypublished in the July issue of the Archives of Diseasein Childhood.’

He quotes the researchers from Great OrmondStreet Hospital: ‘“A number of reports suggest that themost appropriate treatment for CFS/ME in childrenand adolescents is multidisciplinary rehabilitativetreatment, with an emphasis on increasing activitiesalongside symptom management and addressingpsychological issues through systemic (family)approaches. This approach is based on […] arecognition that the syndrome may be […] a chronicstate of low physical and emotional functioning wherebiological causal factors may no longer be operative,but illness is maintained by physical deconditioning,sleep disturbance, and psychosocial factors.”’

We have looked at this study in detail becausefamilies may have the results quoted as a reason toallow their child to undergo a similar regime.

It appears that the researchers used a non-randomised method of selection – all those who werereferred and met the criteria were given the option ofbeing included in the programme. So they were self-selected and we are therefore not surprised that 63%of severe cases who chose not to undergo theprogramme but only to receive supportive care werestill ill at the end of the two years. Parents of severelyill children, based on their own experience, do notgenerally wish them to undergo increases in activity.

If they had chosen to participate in the programme,would their children have improved, stayed the same ordeteriorated, as so many have under similarprogrammes? We shall never know, but we would advisecaution with any such scheme or programme.

The children were diagnosed using the CDCdiagnostic criteria. This may have pulled in children

Controversial Study by GreatOrmond Street Hospital Physicians


who do not have the potentially severe andchronic neurological condition known as ME.

We note that ethical approval was notobtained as the researchers compared ‘differentforms of current management’. They also usedsubjective data, not objective tests, to judge thesuccess of their programme. They asked howthe children felt, for example (many childrenlike to please and try hard to say what theirelders would like to hear) and they also usedschool attendance as a marker of ‘functionalstatus’ and ‘ability to participate in normal life’.

Many children with ME try to attendschool simply as a result of being made to feelthat this is where they belong, even whenunwell. No mention is made in the study of theireducational rights or what their level ofeducational achievement was as a result ofgoing into school.

To summarise: it is possible that thosefamilies who did not fancy the treatmentprogramme were those who realised alreadythat their child’s illness was less amenable tosuch treatment. Does this mean that they weremore likely to have the genuine, neurologicalME as opposed to other sorts of fatigueillnesses, trapped in the same study under theCDC definition? The use of the Canadiancriteria would arguably have told us more.

Sadly, the researchers suggest that itwas those who were more motivated to changewho entered the programme. Yet they admitthat those who took part may have been givenmore intensive support generally.

Although they knew who was on theirprogramme and who wasn’t, the researchersargue that the outcomes could not have beenaffected because the reports were ‘generated’ bythe subjects themselves. But since thesesubjects knew what was expected of them, werethey influenced to put down what the therapistswanted? We call this the Dr Chris Rolles effect,which he so eloquently described to us. For moreinformation, please contact our Advice Line.

Why Won’t They BelieveMe?The Independent Review 10 May 2004

The Young ME Sufferers Trust wasquoted in a full page feature by JeromeBurne severely criticising new trials ofCBT, Graded Exercise and a hybrid formof Pacing. ‘Funded by the MedicalResearch Council at a cost of more than£2.5m, the trials are just gettingunderway. “Whatever their findings,” saysDr Vance Spence, Senior Research Fellowat Dundee University and a leadingscientist in the field, “they won’t tell usanything useful about the best way totreat CFS/ME because they are notproperly selecting patients with thedisease. There is widespread concernabout this.”’

Jane Colby was quoted: ‘“If theCanadian Definition were to be taken intowidespread use, it would be much harderfor people with chronic fatigue to becategorised along with those who havetrue CFS/ME.” The MRC says it is seekingnew research proposals and there is noreason why projects using the CanadianDefinition should not be accepted infuture.’ The Trust will be pressing for this.


No mention is made in the study of theireducational rights or what their level ofeducational achievement was as aresult of going into school.

Every student knows what it is likewaiting for results. Finally, for our graphicdesigner Kerry-Ann Edge, the suspensewas over! She was given a 2:1 grading forher BA(Hons) Graphic Design degree.

‘My third year was divided into two mainsections - the dissertation and the finalmajor. For my dissertation I researchedthe effect of animation on young children.The final major included an exhibition.which was held in London and 800 peopleattended.’

Breaking News

Part of theexhibition timeline showing thehistoricalchangesinfluencing awoman’s image.

Have you accepted your birthday invitation to tell ushow you are?

Thank you so much for my birthday card you sent for my 18th. I had alovely day and in the evening went for an Italian meal with myboyfriend and best friend. I had lots of prezzies. My health isimproving but I had to drop out of college as I found it too exhausting.I have been doing a home study course. After this, I’m not sure;maybe I will do an Open University course but my health will comefirst. Keep up the good work at Tymes Trust – without your adviceand help, this illness would be harder to cope with. My mum and Ihave found your magazine most helpful.

Best wishesSarah Colson

We hope your June GCSEs went well, Sarah.

WHEN IS YOUR BIRTHDAY?

Sazza and her friendsenjoying themselves

Thank you ever so much for anotherbeautiful birthday card and invitation.It is ever so special the effort youmake in ensuring we all get one andhow you endlessly sign them. Imanaged to have the best time yet,surrounded by my family and feelingthe presence of my priceless friends inspirit. I’ve learned that every setbackis just an opportunity in disguise(actually I nicked that saying but hey,ho!) I can honestly say I wake updaily with a propeller of hope insidemy head, a gallon of belief swellingmy heart. My sticks remain in thehouse, my wheelchair stagnatessilently. I look forward to the day I’mfree enough to return them but untilthen, my therapists have told me, it’sbest to have them handy. I’m semi-recovering – it’s all a balancing act.

With love and thanks for all thesupport and encouragement to helpget me to this point. I won’t forget it.Sazza Holmes

PS I passed my OCN Level 3 CostumeDesign with a distinction!


I am 11 years old and have been off school for 7months now. I really wanted a bowling party formy birthday, but as I was too ill, I was not ableto have one. My mom and dad came up with thefantastic idea of going to a bird of prey centrenear where I live. I was able to fly and handlethe owls, buzzards and kestrels and I got tohold Lenny, the spiney lizard. The photo is ofme with Kyla the buzzard at GentleshawWildlife Sanctuary and in the end it turned outto be the best birthday ever!

Love fromxxxxxxxxxxxx Rebecca xxxxxxxxxxxx

Rebecca Stokes with Kylathe buzzard

Jenny Smith, Director of Gentleshaw Wildlife, says: ‘Iremember the young lady who came to see us, a verynice young lady and most cheerful.’ You can findGentleshaw Wildlife Sanctuary at:www.gentleshawwildlife.co.uk

Phot

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Phot

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News from Gentleshaw in Eccleshall, StaffordshireJune 2004 : We have some new arrivals at the centre - come along andsee our ‘babies’. Yerevan is a European Eagle owl. We also have beenlucky to have some Snowy Owl chicks that hatched on the fourth ofJune and our garden pond is now home to a couple of Terrapins named‘Jaffa’ and ‘Cake’. Hopefully, there will also be a baby Great Grey Owlcalled ‘Apache’ joining us.

‘To everyone, a big hello,hoot, growl and sniff fromall of the furry, feathered,scaly and humanresidents of GentleshawWildlife Centre’Yerevan

Water colourpainting of Elsie

Owl photos courtesy of the Gentleshaw website.Do go and pay them a virtual visit - it’s one ofthe easiest sites to use that we have come across.

If for religous or other reasons you don’t celebrate birthdays, let us know so that we can make otherarrangements for you.

How about our lads? Write and tell us what you do on your birthday, guys - and more fromthe girls too please! You can email via the form at www.tymestrust.org or send a postcard.


NAME: Jo-Anna Roberts

POSITION: Advice Line Team Member and Co-ordinator

BACKGROUND: I'm 20 and live in Llandudno, but I'm originallyfrom Buckinghamshire. I've probably had ME since I was 9 andwas diagnosed with PVFS in 1997. My incredibly supportiveparents battled with my school to get me home tuition through 2GCSEs and 1 A-level. I have an education thanks to the advice of Tymes Trust. I movedto North Wales last summer after marrying Jon - the man of mydreams! Jon is 27 and loves music. He also has ME and has beenill since he was 15. I am now an Open University student and I'mthoroughly enjoying the experience.

HOBBIES AND INTERESTS: I love learning, reading, keeping intouch with friends, listening to music, poetry, history, psychology,dreaming of travel and exploring my Christian faith.

FAVOURITES: Book - 'Birdsong' by Sebastian Faulks; Film - 'It's aWonderful Life'; Music - rock, jazz, classical and Christian; Food -anything 100% organic!

PERSONAL MESSAGE: I feel I have learnt to adapt to life with MEand have learnt to appreciate the simple things (spring flowers,raindrops on my window). I know the value of true friendship, andI've found the love of my life. I now know to be realistic (Sensible

is my middle name!) but I'll never lose sight of my dreams - they keep me sane. I'm so happy to be part of the TYMES team. Using my experiences to help others is so rewarding.I hope to encourage others with ME to believe that they too can move forward with their lives andgo in the direction they want. You needn't be defined by your illness.


Tymes Trust Team

My love and best wishes to you all

Jo-Anna says: ‘My father Barrie is on the Advice Line Team and I found myself getting veryinterested. It is the first time I have done anything like this, so it’s exciting. There is so muchknowledge in the pack from Tymes Trust that I feel confident I can have the right information tohand, or will know where to obtain it.’

Why not consider joining Jo-Anna on the Team? Fund-raisers would also be welcome.

Contact the Trust on 01245 401080 to discuss it

Could you join us as part of the Tymes Trust Team?

Angharad Davies from our Advice Line Team, is leaving us to begin full-time law training.We wish her every success.Angharad writes: ‘Thank you for being so kind, patient and welcoming me to the Team. Ihave thoroughly enjoyed my time with you and think that you provide an amazing serviceto those affected by ME.’

Ins ight : Top T ips

Barbara Turnbull of Clwyd ME Support Groupwrites to invite you to a get-together:

Thank you for the spring issue of TymesMagazine. As ever it is great, and I very muchenjoy it. Please may we reprint A Mother`s EyeView, A Good cup of Tea and the cartoon I lovebeing outside in the Sun by Laura Shave? [Yes-Ed]

I am looking to launch some youngpeople’s pages in our Newsletter, and hope to

interest them in getting together in some way. Iwould love to hear from any young people whowould like to meet up or to contribute to ournew young people’s pages. If you would like to contact Barbara, send usan email using the contact form atwww.tymestrust.org or telephone 01245401080. Otherwise send us a postcard with yourdetails. We will pass on all your messages.

Partner Group Invitation: why not meet up in Wales?

Making a DifferenceMaking a difference isn’t rocket science Do what you can, when you canTake the long-term viewCultivate staying powerKeep your focusBe pro-active, not just reactiveCelebrate your victoriesSupport one anotherFind the special skill you have Then use it

Parliamentary News

In view of the ongoing public debate overthe full name and classification of ME, ourpatron Lord Clement-Jones asked HerMajesty’s Government whether theysubscribe to the World HealthOrganisation’s designation of ME as aneurological illness and whether they alsosubscribe to the title MyalgicEncephalomyelitis.

Confirming that the Government doessubscribe to the WHO neurologicalclassification, Lord Warner replied:

‘Chronic Fatigue Syndrome/MyalgicEncephalomyelitis is an internationally recognised term for this condition and isused and understood by both clinicians andpatients. The US Department of Health andHuman Sciences Centres for DiseaseControl and Prevention adopted the nameChronic Fatigue Syndrome in 1988.

‘There is much medical literature tied tothe current name, and a change of nameshould wait at least until an acceptedbiological marker is found.

‘Until a new name for this illness is agreedinternationally we will have to continue touse Chronic Fatigue Syndrome/MyalgicEncephalomyelitis to describe it.’

Making a difference can take many forms. Somepeople share their stories with the press, othersgive information to schools, colleges andsurgeries, some work with their local ME group,or fund-raise. Countless carers also make apersonal difference to the lives of family andfriends.

On a sunny day in May, Jane Colbyaddressed HERMES(Herts East RegionME Support) on howThe Young MESufferers Trust worksto make a differenceand gave tips on howyou can too.

John Hayes, Chair ofHERMES, with JaneColby. Photo by Sarah Harris

How to make a difference


© J

ane

Colb

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‘Once again, I would like to thank The Young ME Sufferers Trust fortheir commitment to the education of children and young people withME.’ Baroness Ashton of Upholland, Parliamentary Under-Secretary of State


DO FAMILIES WANT PSYCHIATRISTS ?The Young ME Sufferers Trust has received a grant from the EssexCommunity Foundation’s Local Network Fund for Children and Young People, under

their programme ‘Children’s Voices’.We have for some time wished to seek the views of the children and families registered with

us about the treatment to be offered by any clinics set up with the Government’s new money forME/CFS services.

We have also wished to know what you think about other potential services - not just thosesituated in a clinic - such as domiciliary visits for diagnosis, advice, help and care eg specialist nurses.

With our grant, we are undertaking an independent assessment in the geographical area inwhich the charity is situated. However, we began by seeking a ‘thumbnail sketch’ of the views of peoplethroughout the country.

We asked a number of questions and gave you the opportunity to say more, if you did not justwant to tick boxes. Your answers were most illuminating.

We can now reveal that 85% of families who have so far responded gave the thumbsdown for the automatic involvement of psychiatrists in the care of children with ME. Yet thisseems to be increasingly happening. If you have any experiences, good or bad, with childpsychiatrists and their treatment of children with ME, please send them to us. The studycontinues, with Dr Nigel Hunt, so it is not too late to send in your green questionnaire.

The Sky’s the Limit

Following our House of Lords launch of the TymesTrust/Nisai Education partnership hosted byLord Clement-Jones, we presented our newdocument Succeeding with ME to Prime MinisterTony Blair’s office on ME Awareness Day.

Mr Blair asked the Department forEducation and Skills to examine this document.We have now received a most helpful reply fromBaroness Ashton, who met with Jane Colby andKeith Harley in 2003 to discuss the problemsfaced by children with ME.

She writes: ‘I agree that ICT hasconsiderable potential to enhance theeducation of children who are unable to attendschool because of medical needs. TheDepartment’s joint statutory guidance withthe Department of Health Access to Educationfor Children and Young People with MedicalNeeds actively encourages Local EducationAuthorities to use ICT as part of the whole

learning package for children who are unableto attend school because of medical needs.’

It is helpful that Baroness Ashtonchooses to emphasise this point, since we findthat many Local Education Authorities still donot seem aware that using computers and theinternet to assist sick children is recommendedby the Government. Parents may wish to bringher statement to their attention.

Manchester University was recentlycommissioned by the DfES to hold three one-day regional seminars for Local EducationAuthorities to share good practice for theeducation of children unable to attend schoolbecause of medical needs. These have nowtaken place.

At each seminar there was apresentation by our partners Nisai Educationto demonstrate how the virtual classroom cansupport the education of children out of school.

Exploring: New Anti-Viral Drugswhy not here?

Dr Elizabeth Dowsett, the consultantmicrobiologist who, with the exception ofthe late Dr John Richardson, probablytreated more ME patients during her longcareer than any UK physician, explains.

ME is a complication of an infectious disease. Ifthe virus gets into the brain it damages thenervous system ie the neurons.

The commonest cause of encephalitis(inflammation of brain tissue) in the UK is anenterovirus (gut bug). Polio myelitis itself wascaused by three members of the enterovirusfamily, but there are many more enterovirusesagainst which we do not yet vaccinate childrenand these can cause similar symptoms to polio.

Once the encephalitis starts, it proceedsas any other encephalitis eg following measles,chicken pox etc. But one must distinguishbetween a viral and a bacterial cause.

The best prevention for ME is to use arapid PCR system to diagnose an infectionbefore the virus gets into the brain and treataccordingly – there are antiviral drugsspecifically for enteroviruses in humans andanimals now going into production.

These have been known about since theearly 1980s. However, only now are theycommercially viable. They are called capsid-binding compounds and they stop the virusgetting to the brain.

In the USA, paediatrician Harley Rotbart,who is also a Professor of Microbiology, isworking with a commercial company who issupplying a rapid PCR test (only five hours forthe result).

Capsid-binding compounds go underdifferent names in different countries. The UScompound is called Pleconeril. They are not yetavailable in the UK.

The Young ME Sufferers Trust comments:

Unfortunately, once ME develops, these drugswill not cure the condition. But everyone whohas suffered with ME will want to see these

procedures brought to the UK in order to helpprevent others from suffering too. Werecommend copying this article to your MP toalert him or her to what the UK could be doingand is not.

ME clusters occur in families, schools andcommunities. If the procedures describedabove were used early on, where seriousinfectious illness seems to be developing,clusters could theoretically be stopped in theirtracks and brothers, sisters and friends couldbe spared the pain of an illness that is fastbecoming preventable.


Misdiagnosis:New Canadian CriteriaConfusion and misdiagnosis is arisingwhere the criteria used for diagnosis arenot rigorous enough.

This is why The Young MESufferers Trust recommends thewidespread adoption in the UK of the newCanadian diagnostic criteria

Developed especially for clinicaldiagnostic use, rather than for research,by a group of physicians who have seenover 20,000 patients between them, thesecriteria have been designed to preventpeople who may have depressive or otherillnesses such as borreliosis (a treatablebacterial illness formerly calledpseudomonas) from being mistakenlygrouped with people who have true ME.

The Medical Research Councilconfirms that there is no reason why thesecriteria should not also be used forresearch. [We will be pressing for this. Ed].Find our full appraisal of the Canadiandiagnostic criteria in our online collectionof the Trust’s key statements. In theSpotlight : The Tymes Trust View is atwww.tymestrust.org/publications.htm


THE HOUSE OF LORDS LAUNCH of the TYMES Trust/NISAI Education PartnershipThe Young ME Sufferers Trust specialises in the educational needs of pupilsand students with ME/CFS. April saw a milestone in our work to help them. Could it help you?

Lord Clement-Jones CBE, Patron of The Young MESufferers Trust, explained in his speech: ‘It is nowknown that ME is more disabling than many otherchronic illnesses, so perhaps it is hardly surprising thatthis illness is the biggest cause today of long-termsickness absence from school. This causes greateducational deprivation.

‘Today we are all here to witness the start of anew partnership between The Young ME SufferersTrust and Nisai Education. This partnership has thepotential to revolutionise education for children withME right across the country.’

Sophie Ellis got her GCSEswith the Virtual Classroom

Chair of Trustees Keith Harley and JaneColby listen to Lord Clement-Jones

The Honourable Frances Ommanneyand Beverley Jameson, ExpertPatient Scheme

DhruvPatel, thebrainsbehindNisaiEducation

Preya Thakrar and Russell Clark of Nisaitalking with client Ben Bryant and his mum

Trustee Margaret Ross presents Ursula Franklin withthe Dr Alan Franklin Book of Remembrance


Ask anyone to imagine having tea in the House ofLords, and they will probably picture something bothcalorie-laden and, in the best sense, quaintly old-fashioned. Those who gathered in the terrace marqueeon April 26 to celebrate the work of Tymes Trust hadexactly that delightful experience. There is somethingabout a slap-up tea, with arrays of sandwiches, clottedcream scones and fancy cakes that restores the spiritsfrom the word go, and this event proved it.

We were there to mark the launch of the Trust’swonderful new initiative, to deliver a virtualclassroom to youngsters with ME whose illnessprevents them from attending ordinary school. Welearned all about it from the Trust’s patron, LordClement-Jones, and Jane Colby, its ExecutiveDirector, and their enthusiasm was infectious. Such asimple idea, yet such a powerful one: to enable a childsitting at home in front of a computer, to talk to ateacher and be part of a classroom, just as they woulddo if they were actually in school - yet to go forward attheir own pace. The Trust is providing this service inpartnership with Nisai Education, and the results, byany measure, are spectacular.

Anyone looking around the marquee would have seena sea of smiling faces, including those of parents,children and a number of parliamentarians who cameto support the occasion. I am sure that the faces weresmiling not just as a result of the tea or the gloriousview over the river Thames. They were also areflection of how positive we all felt about the work ofthe Trust, who are really making a difference to thoseyoung people whose illness puts them at such adisadvantage and is so often misunderstood.

We went away with a spring in our step. Our sharedaim must be to roll out the virtual classroom, with allits benefits, to many more children with ME over themonths ahead. With the energy and dedication ofTymes Trust and their partners at Nisai, I amconvinced that this aim will be achieved.

Such a simple idea, yetsuch a powerful oneby Earl Howe

Jane Colby launching the partnership (top) followed byLord Clement-Jones, Lord Colwyn, Earl Howe and LordAddington discussing the project.


‘Thank you very much for the opportunity to take part and also forgiving me the chance to put some faces to names! It was a lovely day

for me, overlooking the river on a gloriousafternoon, topped off by afternoon tea on theterrace at the Houses of Parliament.

I have a feeling that the launch of thispartnership and venture is the first of many bigsteps to tackling both the condition and - justas importantly - the stigma that up until nowhas been tied to it with a ball and chain.’Chris Peachey Young Adviser

Bob Mills, Sky News Producer

Trustee AlecWestern. Alec’sdaughterVictoria is aTymes TrustYoung Adviser

David Teece, Project Director, Nisai-IrisPartnership, Warwickshire Local EducationAuthority and Russell Clark

Keith Harley, Chair of Trustees

Trustees Sally Player andJennie Whitlock

PatriciaNoons,Dept ofHealth

Dr Jeremy Jeanes, Assistant Headmaster ofLatymer School with Kerry-Ann and Michael Edge

Trevor Wainwright from Castleford Aid for ME

Dr Charles Shepherd, author ofLiving with ME

Two former Headteachers, Alan Milwardand Jane Colby discuss charity plans

‘Thank you for taking the time to address the ScottishParliament’s Cross Party Group on ME and for notpulling any punches in highlighting the state of affairsas you see it. Your visit certainly provoked energeticdebate, which is something that all Parliaments shouldencourage. Nowhere is that debate more urgentlyneeded than in the field of ME.’Alex Fergusson, Member of the Scottish ParliamentConvenor, Cross Party Group on ME

‘This scheme will be excellent for young MEpatients.’ Dr Nigel Hunt

ME is a potentially chronic, disabling condition defined by the World HealthOrganisation as a neurological disease (ICD10 G93.3). A bout of ME typicallylasts some years, during which the child can be too sick to access education in theusual way. Nisai Education is supporting our drive to implement the e-learningand home-based learning recommendations for young ME sufferers made by theChief Medical Officer’s Working Group on CFS/ME, in which we played a majorrole, published by the Department of Health in January 2002. The Report stated: ‘An educational plan is not an optional extra but an integralpart of therapy’. It recommended: ‘Nearly all children who are severely affectedand many who are moderately affected will require the provision of hometuition and/or distance learning’ and made clear that this may be needed on along-term basis. Crucially, it recommended that: ‘In addition to the time of a tutor or therapist,this may require information and communications technology, which can alsohelp improve social contact.’The Department for Education and Skills endorses the Report and makes clearthat children out of school through sickness are entitled to continuity ofeducation similar to that in school. In ‘Removing Barriers to Achievement’,published in February 2004 the Government states: ‘Some children [withSpecial Educational Needs] still face real barriers to learning…We aredetermined to transform their experience, working together with all those inthe education service and their partners.’ME can cause serious brain dysfunction and a greater level of disability thanmany other conditions. Therefore, providing education in the home can be anecessity, not an option. Research shows ME to be the biggest cause of long-termsickness absence from school, since exertion can produce deterioration. To protectchildren’s health whilst also enabling them to achieve, modern technology, theinternet, and visionary thinking have come together.

Our new report Succeeding with ME explains the ‘virtual classroom’ revolution.Learn at home whilst interacting online with a teacher and other pupils.

Bound report £6.00 from The Young ME Sufferers Trust.Further information at: www.tymestrust.org/tymespublications.htm

The launch of the Tymes Trust/Nisai Education partnership wasa milestone in the care and education of children with ME.

Alex Fergusson MSP with Dr Nigel Hunt

Beryl LockwoodAsst EducationOfficer,Warwickshire

Mark Colby, ourweb designer



Seeing’s Believing: Can theyoung zap the baddies?!

I was recently asked by a mother with an 11year old son if he was old enough to tryvisualisation. I was rather surprised by thisquestion as I had never considered age as beinga major component in the use of this technique.I have always felt that the ability to imagineand to believe that the visualisation can work isthe important factor.

VisualisationAs I state in my book Unwind! Understand andcontrol life, be better!! people can visualise agiant eraser which slowly rubs out their illness.I believe there is also a need to develop arelaxation technique. This removes stress.

Some patients like to imagine fightingthis illness, there is an alternative to using animaginary eraser to rub it out. Instead, afterslowly relaxing all parts of the body (foot, legs,abdomen, arms, neck, face) they then visualisea part of the body and use an imaginary gun to‘shoot’ the infection. This can be a paint gun, aflamethrower or a miniature anti-tank weapon!In all cases, the mind focuses on areas of thebody that are causing pain or other symptomsand tries to destroy the infection. People whodo not like this idea can call on a superherosuch as Superman, Batwoman or any otherindividual. One young child visualised hisfavourite pet dog licking away the illness.

Young peopleYoung people have vivid imaginations.Normally, I do not like patients using theirimaginations too much as this is a greatconsumer of energy, so I advise restricting theuse of television, music, videos and computer

games. Therefore I recommend that avisualisation technique, combined with arelaxation technique, be used for no more thanthree 20 minute periods in any one day. Ibelieve this can be a useful way of employingthe time one has to spare.

How did I answer?My answer to the young mother was that Ibelieved her child might be better atvisualisation than some adults. Young childrenarguably have an even greater imaginationthan adults. I feel it is an important lesson foryoung people to learn a relaxation techniqueand the value of using the mind to help theirbodies do the healing.

With so many baddies out there, thegood guys need all the help they can get. I amvery happy for the young to zap as manybaddies as they can.

[My preferred method of zapping the baddieswas to agree on a truce! Early tests havingrevealed that my own virus was Coxsackie B– a frequent culprit in ME and a relation ofpoliomyelitis – I explained to it that I waswilling to give it house-room on condition thatit didn’t causeme too muchtrouble. Overthe years, we’veworked thingsout quite wellbetween us.Ed.]

Visualisation is an ancient technique still used by Buddhists andhypnotists alike. In this technological age, people suffering fromillnesses that have no ready cure are exploring traditional, non-pharmaceutical aids to healing. Dr Darrel Ho-Yen sent us his thoughts.


There has been a seriously mistaken idea thatME is ‘all in the mind’ when it is, in fact, ‘all in thebrain’. ME is centred in the brain and nervoussystem and its World Health Organisationclassification as a neurological illness (ICD 10G93.3) confirms this.

However, there is still a tendency toassume it can be treated as if it were apsychological illness, which leads toinappropriate physical demands on children byschools and others, often leading to relapse.

Visualisation, prayer, spiritual healingand other systems that are based on a strongbelief in their powers are often used to try andtarget physical illnesses.

Magician Paul Daniels once demonstratedthe power of belief in front of millions ontelevision, by making hisaudience think that acrumpled up ball of silverfoil was red-hot. It wascomical to see grown menand women wincing andthrowing it away,believing they would be burnt if they held onto it.

In April 2002, Thelma Agnew reported onthe famous ‘Placebo Effect’ for Health Which? Shewrote: ‘Imagine being prescribed a course of pillsmade of sugar and paste. They contain no activeingredients that could possibly alter the course ofyour illness, let alone make you better. Thedummy pills work a strange kind of magic.

‘There is, in fact, a great body of evidenceto suggest that placebo or dummy treatments cansometimes work as well or even better than realmedicines. Patients on placebos can evenexperience side-effects that mimic real drugs.

‘Nor is it just a matter of the patientresponding to the illusion of treatment – objectivemeasurements of symptoms such as bloodpressure and post-operative swelling have foundreal physical changes.’

The House of Lords Science andTechnology Committee found, in 2000, that ‘theplacebo effect is not just an imagined experiencebut can positively improve objective biologicalmeasures of health.’ Patients with benign gastriculcer in one study experienced a 45% responserate to dummy treatment, which was confirmedusing endoscopy (a visual inspection of the insideof the stomach). Since then, an American study

has even suggested that the therapeutic effectsof Prozac may be largely caused by the beliefthat it works.

Dr Michael Dixon, who wrote a bookabout this whole phenomenon, said: ‘I see theplacebo effect as the mobilisation of thepatient’s self-healing powers.’ Science istrying to unlock the secrets of what happens.

There is a theory that the brain may beusing a group of neurotransmitters calledneuropeptides, triggered by feelings andthoughts. It is now known that the immunesystem receives a boost after happy experiences.Belief in the fact that a pill or a therapy can workreduces stress and gives a sense of relief.

So the encouraging message is that wehave in our own bodies great power. We see it

every time we cut a finger or a graze a knee.If we break a plate, we must buy a new

one. But, if the damage is not too great, we don’thave to buy a new knee or finger – our bodymiraculously repairs the flesh and grows newskin over the wound – all by itself.

We don’t need to make an effort to believethis. We take it for granted because we havegrown up seeing that this is what happens whenwe cut ourselves. What might happen if we lostall belief in self-healing? How long would the cuttake to heal up then?

Scientists seek reasons why belief may beable to help healing. But doctors must not fall intothe trap of blaming those who don’t recover –accusing them of having ‘incorrect illness beliefs’.In bygone days people held that if you were ill itwas because you had sinned. Not every oldtradition is helpful.

Different illnesses may need all kinds oftherapeutic intervention. But because of theevidence of our own eyes when a physical cutheals, we should never make the mistake ofthinking that self-healing powers are only for‘unreal’ illnesses. Quite the contrary. Science andthe natural history of ME show that we really cantrust our bodies to do their best for us, given time,love and care.

MODERN MAGIC : THE EVIDENCE

So the encouraging message is that wehave in our own bodies great power.

You Tell Us


Dear JaneThank you to Jennie Whitlock and yourself for the signed birthday card for Philip’s 19th birthday.We have now become ‘empty nesters’- our two sons are ready to lead independent lives.

We are particularly proud of Philip, who won the prize as best GNVQ Business StudiesStudent at sixth form college last year. He started the next level GNVQ and A/S level psychologyin the autumn, but decided in January, with our full support, that he’d had enough of studying forthe time being. This is partly because he did not really want to continue in a group of muchyounger students at college and felt he would like to move on.

Philip found a job with JD Wetherspoon through his own initiative, and is steadilyprogressing ‘up the ladder’. The structured environment suits him, in spite of long and irregularhours, and he loves the contact with people. He has plans for his own flat, sharing with friends,and has his own car and all the necessary domestic skills.

Your advice has been invaluable over the last few difficult years. We wish yourorganisation well and enclose a donation of £20 as a token of our appreciation.Regards, Philip’s mum and dad.

PhotographerSuzanneGreenslade hassent us a selectionof her photographs.Suzanne hasalready exhibited inSpain and America,and she writes: ‘Iam sending you a

number of images so that you can choose whichones you want to use for Tymes Magazine.’ Suzanne says the photos chart her own experiencesover 4 years of ME such as loss, betrayal, isolationand finally rejuvenation. Her exhibition is called Wakingfrom the Long Sleep and thanks to a grant from theWelsh Arts Council it will be at the Washington Gallery,Penarth in the Vale of Glamorgan from 19 September to10 October.If you are well enough, you are invited to the openingreception on Sunday 19 September from 3.00 –5.00pm. Please tell Suzanne that you are a member ofTymes Trust.

You can contact Suzanne at www.suzgreenslade.com

Would you like to contribute to ‘You Tell Us’? Young or old, send your stories to: You TellUs, PO Box 4347, Stock, Ingatestone, CM4 9TE


How can I express this restless passion that I hide ?This fairground of spinning thoughts and feelings that I ride,Spiralling down and shaking me up,Through joy and pain, through fear and love,Dancing dizzily round and round,The words are lost and make no sound.

How can I make clear the reflection on the waves?Fragmented and confused is the image it betrays,Tossed about and broken up,Deep, deep down and up above,Searching for something that’s me,The sun goes down, I cannot see.

But deep within a spirit lives,Above all sound, beyond all sight,It rises up this time again,And lifts me high above my pain,Where I am still and free from hunger,In perfect love, in awesome wonder,On blazing wings my heart takes flight,Beyond the boundaries of my mind.

Boundlessby Robin Sansom


Just as well I’m generous, isn’t it,guys? This page is fast becomingCheryll’s and Fudge’s page, notmine at all. Well, it’s holiday time so I guess Icould do with a holiday like otherfolks. Go, Cheryll. Over to you todo lots of the writing this time.Seb

PS For our new members, Fudge isCheryll’s Tymes Trust Beanie Bear

Do you remember our ‘What makes mesmile?’ competition designed by LauraShave? This was AnnaSheppard’s beautifulentry. One day Anna’smother was feeling abit worn out so Annadrew her similarflowers in which towrite all the thingsthat made her smile.Guess what? It reallycheered her up!Why not draw your own, for someone youlove to fill in.

Drawn byLauraShave

Sebastian says:

Colour Me In

I really would like to nominate my hometutor Mrs Wheeler for a certificate of Seb’sOrder of the Golden Web because sheunderstands ME and has taught me somuch in the two and a half years she hasbeen my tutor. She will be leaving in thenext few weeks but I have enjoyed hercoming so much I will really miss her.

She has helped me in so many ways, evenhelped me to arrange doing part time workexperience and helped me to be able totake my Art GCSE exam at home. She cantell when I need a break or if I am too ill tocarry on. She makes the work I do reallyinteresting. My favourite work I did with herwas a story I wrote about my dog Tetley.

She has helped sort things out with schooland has never made me feel guilty forbeing poorly, as school did. I will really missher and so will my two dogs. Luckily shelikes dogs too, even though she goes homecovered in dog hairs.

I really think she deserves this award.

Many thanks

Cheryll Neyt

PS You remember her don’t you, Seb, whenI used to go in the front room to do mywork and you and Fudge had to be quiet.Fudge sends her love.

by Sebastian the websitespider (find him atwww.youngactiononline.com)

Cheryll and I were delighted tosee such a lot of Fudge and Sebin the brilliant spring magazine.Fudge got very excited too, andis walking round the housethinking she’s a super star anddemanding a dressing roomwith champagne truffles to eat.She was also very surprised toread Matthew Eccleston’ssuggestion that she should beproposed for a Trustee and feltvery honoured.Best wishes love Cheryll Julie and Fudge(((((waves to Seb)))))

Email message:

I just wanted to thank you for my Beefeater Bear. Alas he arrivedtoo late to save my chocolate buttons, but he was put to guardmy chocolate eggs and so far has donea good job at keeping them safe!Thank you, Vikki George and Bob Beefeater

Vikki runs Post Pals - ‘Posting a Smile ona Child’s Face’ at: www.postpals.co.uk

Hello JaneJust to let you know that the lovelyBeefeater Bear arrived today I havecalled him Max and he is feelingvery important watching over allmy unicorns.Fudge liked him straight away andthey are busy getting to know each

other and I amdelighted with hisarrival. Please thankMr Harley for me.Many thanks.Cheryll Neyt

Jane -Look to your Tymes Trustaccount, you’ve another £60donation coming in, cos theyknow what you do with it,and boy are they pleasedwhen I can tell them.Trev from Castleford Aidfor ME

Keep your heads up!Best regardsAndy Wallace

Sometimes it’s endurance thatcounts. Never give up!Your FriendButch Leitzinger

American Le Mans Series drivers for Dyson Racing (2003 LMP675Champions) gave Mark Colby these messages for you. If you go towww.tymestrust.org and click on the car you can get a close-up.

Mar

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I just wanted to say thankyou for my BeefeaterBear! I love him and hemade my day when hearrived! I’ve called himBen and he has reallytaken to his Supertedduties (so far!) and it iswearing me out justwatching him. I think he

gets his energy fromthe same place as

our puppy Havoc. Ido wish they wouldshare some.

Elle and Ben


Hope the Hard Tymes are nottoo difficult to bear. All best wishes James Weaver

QUOTES-WE-LIKE Got a favourite quote? Share it with us. We’ll put your name byyour chosen quote.


Our greatest glory is not in never falling, but in risingevery time we fall.Sent in by Eleanor Ward

Dear Tymes Trust, I have had ME nowfor 4 years and I amnow 14. There was atime when every daywas a struggle and Ican only imaginewhat it must be likefor other kids like mewho have it worse,where they can’t getout of bed or doanything. I would liketo ask if all young

readers could gather any poems or thoughtsthey have written, no matter how short orlong, and send them in so I can develop theminto a book.

Once this illness reaches your soul itcan make you feel the lowest of low. I wouldlove to make other people see this and give alittle happiness to those who add to the book. Ibelieve when you do something that you’re apart of, with others who are just like you, itgives a sense of life even if some of the kidswith ME can’t experience it first hand.

I really believe in this.Love, Jade xxx

I live in my own little world - but it’s OK, they knowme here.Sent in by Chris Peachey, Young Adviser

YOUNG HEARTSAn invitation to you all from Jade Scarrottwhom we remember with affection

Kindly words are ahoneycomb,Sweet to the taste,wholesome to the body.Proverbs

Just before Jade’s recent tragic deathin a road accident the WarwickGazette covered her project:

A young ME sufferer from Warwick iscompiling a book to help other young peopletell the world what the condition is like. […]Jade has had to be home-educated. Butthrough her darkest times she took to writingas a way of expressing her feelings.

She told the Gazette: ‘ME makes somechildren so sensitive that they cannot even behugged by their loved ones and I can’t evenimagine how painful it would be to seebrothers and sisters being held in theirparents’ arms when they can’t do the same.Being so weak, I had no way of expressingmyself and it made me feel so small.’

The Young ME Sufferers Trust isbacking Jade’s project and one of her poemshas already been published in TymesMagazine. *

Jade hoped to fill her book with the thoughtsand poetry of as many other young sufferersas possible. Her family and Tymes Trustwant to make her dream a reality. Sendthoughts or poems to Young Hearts, PO Box4347, Stock, Ingatestone, CM4 9TE or emailthem using the contact form atwww.tymestrust.org

* Issue 45

Education is the most powerfulweapon you can use to changethe world. Nelson Mandela

Photo courtesy of the Warwick Gazette

My Bedroom


Hi everyone at Tymes Trust!

I saw Eleanor Ward’s email about her room andthought what a good idea it is and it would bereally nice for all us kids stuck in our rooms todo. So here’s my bedroom!

My bedroom is decorated to look like arainforest as I would really love to be able tovisit a rainforest one day. It’s really interestingas you find something new to look at amongstthe branches hiding under the leaves. I have abeautiful treefrog staring at me and a purpleand blue spikey dragon lizard climbing a treenext to my door where a big colourful toucan isperched. In the corner is a stunning orangutanswinging in the branches. A snake is slitheringdown towards me with his tail coiled aroundthe branch. Another frog watches me as I sleep.Spike, the iguana, is scrambling on the ceiling.There’s a black jaguar asleep on a branch onmy wall.

I’ve also painted lots oflittle ‘Rockys’ hidingeverywhere. Rocky wasmy pet mouse and mybest friend and always cheered me up andmade my room defiantly the best place to be inbecause he was always there.

I also love to look out of my window and watchthe birds and squirrels feeding from the birdtable and feeder we have in our garden. Theyalways make us laugh with their acrobatic antics!

Although I wish I didn’t have to spend so muchtime in these four walls, at least having a funand interesting room helps to relieve theboredom.Tez Cabrera

Why not send us pictures of your room? Theyneed to be good quality photographic printstaken on film, or high resolution digital images.If you are not well enough to take photosyourself, maybe a friend or someone in thefamily could do it for you?

Just-A-Postcard


Just-A-Postcard : A Shirley Conran Top Tip Keep a box of postcards ready-stamped, so you can easilywrite a quick note to friends. You can collect picture postcardsor use blank cards that leave room for more writing. Shirleysays: ‘I always keep a box of stamped postcards handy.’

If you’d like us to send you a lucky dip picture postcardto use, send us a stamped addressed envelope.

If you’d like a bag of assorted picture postcards, pleaseinclude a donation to cover costs.Send to Picture Postcards, PO Box 4347, Stock, Ingatestone,CM4 9TE.

Shirley’s Prizewinners!Congratulations to everyone whoentered the Shirley Conran letter-writing competition with suchvaried ideas. Shirley asked you towrite to her about all the ‘littlethings’ that you enjoy. Theyoungest entrant was aged 11years and the oldest is a memberof our 26+ Group! A wonderfulspread.

Our thanks to Shirley fordonating £100 for the prizes. Wewill be printing selections fromyour letters in the next magazine.

Non-uniform day – DixieGrammar School

‘Please find enclosed the proceedsof our non-uniform day. Thankyou for your work with ElizabethColley – she seems muchimproved.’

Janice I JonesMarket Bosworth

Could your school hold a non-uniform day for us next term? Allfunds raised will go to services foryoung people with ME.

Simon Selkin’s Big Box of GiftsWhen our Executive Director Jane Colby met with big-hearted Simon Selkin at the Ideal Home Exhibition inLondon, the result was a Great Big Box of Gifts forYoung People, donated by William Selkin Ltd. who werekey exhibitors in the gallery.

To request one of Simon’s gifts (suitable for eithersex!) just send us a postcard telling us about someonewho’s made you happy – maybe they also gave you asurprise gift?

We’ll print lots of your messages in the nextmagazine and we’ll send your gift immediately – infact, we’ll go on sending them until we run out.

Send your request to Simon’s Gifts, PO Box 4347, Stock, Ingatestone, CM49TE. Don’t forget to include your name, age and address.