Tymes Publications

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Quick Tour of ME Symptoms, Management and Tymes Trust Services

Quick Tour of ME Symptoms, Management and Tymes Trust Services

"Mum uses your leaflet to explain the illness to people, like my care manager. It's the best leaflet on ME we've seen!"

Printed copies available from Tymes Trust for £2.60 per pack of 6 (includes post and packing).

A Good Practice Guide...

A Good Practice Guide to Education for Children with ME

For GPs, schools and families. Includes Statement on Virtual Education by Jane Colby at the House of Lords.

Email Alerts and Trust Statements

Email Alerts and Trust Statements

Alert emails are sent approximately once a month and include the Trust's position on important issues, news on Trust activities and advice or information we think you should know. There is no advertising and emails are only from us; no email addresses are given to anyone else. You may subscribe here.

Special Problems of Children with ME and the Enteroviral Link

Special Problems of Children with ME and the Enteroviral Link

This paper by Jane Colby is a complete review of ME in children. It was commissioned by and published in the Journal of Clinical Pathology in 2006.


Information Posters

STOP Does graded exercise therapy cure ME?

STOP and Does graded exercise therapy cure ME? by Dr Nigel Speight

Available from Tymes Trust printed back to back : £3.50 for 10 (inc P&P).

WRONG Research showing ME is a physical disease

WRONG and Research showing ME is a physical disease by Professor Jill Belch

Available from Tymes Trust printed back to back : £3.50 for 10 (inc P&P).

DON'T Banned from sleeping

DON'T and Banned from sleeping by Jane Colby

Available from Tymes Trust printed back to back : £3.50 for 10 (inc P&P).

FAIL Why home-based education helps

FAIL and Why home-based education helps by Jane Colby and Lord Clement-Jones CBE

Available from Tymes Trust printed back to back : £3.50 for 10 (inc P&P).

NO 25 years of trusting TYMES

NO and 25 years of trusting TYMES by Jane Colby

Available from Tymes Trust printed back to back : £3.50 for 10 (inc P&P).


Self Help

There's No Smoke Without Fire!

There's No Smoke Without Fire!

Why does an illness which can appear trivial at first, take such a long time to stabilise? What is a relapse? What is the best way to manage one? Some comments by the late Dr Elizabeth G Dowsett, Consultant Microbiologist

ME ~ and my Friends

ME ~ and My Friends

A simple two page leaflet - give one to each of your friends to show them how to help. You can print it double-sided and make a three-fold leaflet if you like.

Printed copies available from Tymes Trust for £2.60 per pack of 6 (includes post and packing).

The Tymes Trustcard

The Tymes Trustcard

This is a "pass card" signed by your Head Teacher or college Principal. It says that you have permission to use the facilities you need, or to obtain assistance so you don't have to keep explaining. It also helps schools comply with the DFES statutory guidance Access to Education for Children with Medical Needs.

Explain Your Abilities

Explain Your Abilities

This document contains a questionnaire designed for you to complete and give to teachers or other professionals.

School Examinations and ME

School Examinations and ME - Special Assessment Arrangements

NOT CURRENTLY AVAILABLE
An updated version of this document is being prepared currently (2014) and will be published here as soon as possible.

The Essex ME Companion

The Essex ME Companion

General Information for families of children with ME/CFS anywhere.

Diet In ME

Diet in ME - is it such a big deal?

A simple guide written especially for young people to take the mystique out of this fashionable subject.


Reports

Child Protection Issues

Child Protection Issues

A presentation to the All Party Parliamentary Group on ME.

ME/CFS In UK Schools

Long Term Sickness Absence due to ME/CFS in UK Schools

Commentary by Dr Elizabeth Dowsett on the research paper published in the Journal of Chronic Fatigue Syndrome in 1997, with an introduction by co-author Jane Colby. The abstract and introduction of the original paper. The study is the largest epidemiological study of ME available to date.

ME Diagnosis : Delay Harms Health

ME Diagnosis : Delay Harms Health

Launched for ME Awareness Week 2005, this is the first joint report from the ME Alliance of national charities. We call on doctors to speed up the diagnosis of ME/CFS and so reduce the number of patients declining into long term ill health and disability. (executive summary)

Revisiting the 2002 Department of Health Report on CFS/ME

Revisiting the 2002 Department of Health Report on CFS/ME

Excerpts from the Children's Chapter of the Chief Medical Officer's Working Group Report, with sections on Education and Child Protection. We hope this information will assist families, doctors and teachers.

Children and Young People - The Key Points

Report of the UK Government Chief Medical Officer's Working Group on CFS/ME
Children and Young People - The Key Points

Background to the Working Group's report, details of the Trust's role in its creation and Key Quotes. Have the right quote for each situation. Useful for doctors, teachers, family and friends.

The Forgotten Children

The Forgotten Children - A Dossier of Shame

Tymes Trust presented this document to the Prime Minister on the 12th of May 2003. It details shocking statistics the Trust has collated from information supplied by families of children with ME.

Presentation copies available from Tymes Trust for £6.00 (includes post and packing).

Succeeding with ME

Succeeding with ME

The "virtual classroom" revolution. Learn at home whilst interacting online with a teacher and other pupils. How the Tymes Trust/Nisai Education partnership formed in 2004 can help children with ME throughout the UK.

Presentation copies available from Tymes Trust for £6.00 (includes post and packing).

Our Needs Our Lives

Our Needs Our Lives

What young people with ME and their families want from a CFS/ME clinic - results of a detailed survey conducted by the Trust. We hope that this report will help you lobby for the services you need in your area.

Presentation copies available from Tymes Trust for £7.00 (includes post and packing).


Experiences

Speech to the Royal Society of Medicine

Experiences - Speech to the Royal Society of Medicine

by Shannen Dabson, Tymes Trust Young Advocate. Part of the 2009 conference Medicine and me : ME and CFS - Hearing the patient's voice.

Mummies Aren't Supposed To Cry

Experiences - Mummies Aren't Supposed To Cry

"Thinking back to those times, I wonder how we got through it, but we did." Articles by family members.

Whispered Words

Experiences - Whispered Words

The experiences and needs of young people severely affected by ME/CFS. Contains details that some readers may find disturbing.


For Professionals

ME - The Illness

ME - The Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity

Contrasts Myalgic Encephalomyelitis with Chronic Fatigue Syndrome and explains why young people with ME are commonly misunderstood as being abused or neglected by their parents, or as lacking mental capacity. It was written at the request of the Official Solicitor as a Judge’s briefing.

Nightingale Definition of ME

The Nightingale Definition of Myalgic Encephalomyelitis (ME)

By Byron Marshall Hyde MD. Separates ME from CFS and demonstrates that ME is an early diagnosable and provable disease. Lists testable criteria. Contains details that some readers with ME may find disturbing. Tymes Trust Executive Director Jane Colby assisted the Foundation with this Definition.

Professionals Referral Service

Professionals Referral Service

Faced with a case, or a suspected case, of ME/CFS, doctors, teachers, social workers and other professionals can telephone the Trust to consult an ME/CFS expert who is also a fellow professional of their own standing.

Teacher Information on ME

Professional Guides - Teacher Information on ME (Updated 2014)

All the most important information, compressed into just two pages. Now includes information from the NICE (National Institute for Health and Care Excellence) guideline to the medical profession on the education of pupils with ME.

Back to School?

Professional Guides - Back to School?

This Guide analyses how relapses in children with ME are being caused by inappropriate programmes of reintegration arrived at through misinterpretations of the statutory guidance Access to Education for Children and Young People with Medical Needs. First published in Special Children magazine April/May 2003.

Pushing the Boundaries in ME/CFS

Professional Guides - Pushing the Boundaries in ME/CFS

Ever more research is showing that ME/CFS is a physical illness. As the first ever biomedical research project into childhood ME begins, Jane Colby discusses the implications for education professionals. First published in Special Children magazine March/April 2005.

Ten Points on the Education of Children with ME

Professional Guides - Ten Points on the Education of Children with ME

This Guide is a complete, practical "How To" - it sets out principles that enable a child with ME to achieve educationally whilst preserving health as much as possible. They have been developed through years of personal experience and study of the illness, and have proven consistently effective.

The SENCO's Key Role in Supporting Pupils With CFS/ME

Professional Guides - The SENCO's Key Role in Supporting Pupils With CFS/ME

All schools have a Special Educational Needs Coordinator. This Guide has been produced to assist SENCOs to manage educational demands on children with ME to preserve health and help them achieve. It incorporates some of the best ideas and practice to come out of years of work in this field. First published by Birmingham University School of Education.

The Doctor’s Guide to ME in Children and Young People

Professional Guides - The Doctor’s Guide to ME in Children and Young People

For many years DR Alan Franklin was the country’s foremost specialist in childhood ME. Unfortunately he is no longer with us, but we still know of no better practical guide to supporting these patients.

Physios Urged to Go Cautiously

Professional Guides - Physios Urged to Go Cautiously

First published in Physiotherapy Frontline.

Implications for Schools

Professional Guides - Implications for Schools of the Chief Medical Officer's Working Group Report on CFS/ME

First published in Special Children magazine February 2002.

ME/CFS Guidelines for Educational Psychologists

Professional Guides - ME/CFS Guidelines for Educational Psychologists

An Educational Psychologist can be key to the provision of suitable education for pupils with ME/CFS. These guidelines will help you assess their needs and make appropriate recommendations.

Care of CFS/ME in Children

Professional Guides - Care of CFS/ME in Children

First published in GP magazine 28 October 2005. Concise information for GPs. Only two pages.


Email Alerts and Trust Statements

Alert emails are sent approximately once a month and include the Trust's position on important issues, news on Trust activities and advice or information we think you should know. There is no advertising and emails are only from us; no email addresses are given to anyone else. You may subscribe here.

ALERT 2014-07 BEHIND THE SCENES : SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)
ALERT 2014-06 FALSE ALLEGATIONS OF CHILD ABUSE
ALERT 2014-05 PRESS RELEASE : TYMES TRUST TAKES ON SCOTTISH GOVERNMENT
ALERT 2014-04 GOOD PRACTICE GUIDE TO EDUCATION FOR CHILDREN WITH ME
ALERT 2014-03 DEFENDING FAMILIES' RIGHTS
ALERT 2014-02 OUR 25TH ANNIVERSARY!
ALERT 2014-01 ME RECOGNISED AS DISABILITY UNDER EQUALITY ACT
ALERT 2013-10 #AskJCC ON YOUNG HEARTS DAY FRIDAY 29 NOVEMBER
ALERT 2013-09 CHILDREN AND FAMILIES BILL
ALERT 2013-08 ITV NEWS COVERS ME
ALERT 2013-07 TYMES TRUST AND NICE : STATEMENT
ALERT 2013-06 ME - THE NEW PLAGUE 2
ALERT 2013-05 AWARENESS DAY PUBLICATIONS / STATEMENT ON RESEARCH COLLABORATIVE
ALERT 2013-04 JANE COLBY'S RECORDED PRESENTATION
ALERT 2013-03 THE END OF THE CROSS PARTY GROUP ON ME
ALERT 2013-02 FREE WEBINAR NEXT WEEK
ALERT 2013-01 DEPARTMENT FOR EDUCATION ACCEPTS TYMES TRUST ADVICE
ALERT 2012-12 CONSENSUS PRIMER ON ME RECOMMENDS TYMES TRUST
ALERT 2012-11 YOUNG HEARTS POETRY WINNER
ALERT 2012-10 DON'T MAKE ME FAIL AT SCHOOL
ALERT 2012-09 THERE'S NO SMOKE WITHOUT FIRE
ALERT 2012-08 PRESS HEADLINES ON VIRUSES INCORRECT
ALERT 2012-07 HOW TO MANAGE YOUR ME
ALERT 2012-06 DR ELIZABETH DOWSETT REMEMBERED
ALERT 2012-05 STATEMENT ON VIRTUAL EDUCATION
ALERT 2012-04 PLEASE DON'T WAKE ME UP
ALERT 2012-03 DO TREATMENTS FOR ME/CFS WORK?
ALERT 2012-02 CRUEL COMMENTS SHOULD BE REPORTED
ALERT 2012-01 GUARDIAN DECLINES LETTER ON BATH STUDY
ALERT 2011-11 TYMES TIDINGS
ALERT 2011-10 STUDY FOLLOWS DOWSETT AND COLBY
ALERT 2011-09 YOUNG HEARTS DAY
ALERT 2011-08 ME IS JUST FATIGUE, RIGHT? WRONG
ALERT 2011-07 CARLISLE TALK / PENGUIN CONTROVERSY
ALERT 2011-06 MEET TYMES TRUST YOUNG AUTHOR AT WATERSTONE'S
VIEW 2011-01 SUBMISSION TO AMERICAN PSYCHIATRIC ASSOCIATION (APA)
ALERT 2011-05 GP PROJECT PRAISED BY UK GOVERNMENT
ALERT 2011-04 STOP DAMAGING EXERCISE TREATMENT FOR CHILDREN WITH ME
ALERT 2011-03 DO TREATMENTS FOR ME/CFS WORK?
ALERT 2011-02 GUARDIAN LETTER ABOUT THE PACE TRIAL
ALERT 2011-01 NICE EVIDENCE
ALERT 2010-13 CHRISTMAS VISION AND THE BRIEF QUESTIONNAIRE
ALERT 2010-12 NEW CAMPAIGNS FOR YOUNG HEARTS DAY
ALERT 2010-11 ME QUESTION TIME
ALERT 2010-10 MINIVISION - A PHOTOGRAPHIC SPECIAL
ALERT 2010-09 EVIDENCE OF PERSISTENT INFECTION IN CHILDREN WITH ME
ALERT 2010-08 LIGHTNING PROCESS STUDY IN CHILDREN UNETHICAL
ALERT 2010-07 21ST BIRTHDAY MEETING
ALERT 2010-06 TRUST WINS THE QUEEN'S AWARD
ALERT 2010-05 MINI-VISION FOR ME AWARENESS DAY
ALERT 2010-04 JANE COLBY ON NORWICH RADIO
ALERT 2010-03 LEARNING COMMITMENT AWARDS
ALERT 2010-02 CARE PATHWAYS FOR CHILDREN WITH ME
ALERT 2010-01 THE TRUST IN THE INDEPENDENT
ALERT 2009-12 VISION / THE BRIEF / JANE'S WITNESS STATEMENT TO JUDICIAL REVIEW
ALERT 2009-11 ON YOUNG HEARTS DAY
ALERT 2009-10 VISION / YOUNG HEARTS DAY
ALERT 2009-09 REPORT - A NOTE FROM JANE
ALERT 2009-08 ME AND VIRUSES - SHOULD WE BE WORRIED?
ALERT 2009-07 UNIVERSITY PUBLISHES JANE COLBY'S 'DAVIDA AND GOLIATH'
ALERT 2009-06 ME AWARENESS DAY : ME CENSUS / WITNESS STATEMENT
ALERT 2009-05 THE BRIEF / POLITICS SHOW RESCHEDULE
ALERT 2009-04 THE POLITICS SHOW
ALERT 2009-03 JUDICIAL REVIEW - THE AFTERMATH
ALERT 2009-02 TRUST SUPPORTS JUDICIAL REVIEW OF NICE GUIDELINE
ALERT 2009-01 MORE FREE PLACES FOR VIRTUAL EDUCATION
ALERT 2008-06 VISION NOW ONLINE / TRUST IN VIRUS PROJECT WITH DR CHIA
ALERT 2008-05 YOU TUBE AND YOUNG HEARTS
ALERT 2008-04 AT HOME WITH THE TRUST
ALERT 2008-03 THE BRIEF / EXPLAIN YOUR ABILITIES
ALERT 2008-02 PRESENTATION TO APPG - CHILD PROTECTION
ALERT 2008-01 EDUCATION WHITE PAPER
VIEW 2006-11 NICE SUBMISSION
VIEW 2005-12 SELECT COMMITTEE EVIDENCE - SPECIAL EDUCATIONAL NEEDS
VIEW 2005-04 SOUTH AUSTRALIAN GOVERNMENT GP GUIDELINES
VIEW 2005-04 ME ALLIANCE
VIEW 2005-02 RCPCH GUIDELINE FOR PAEDIATRICIANS
VIEW 2004-12 ME CLINICS
VIEW 2004-07 MEDICAL AND SCHOOL RECORDS
VIEW 2004-04 HOUSE OF LORDS SPEECHES
VIEW 2004-03 SCOTTISH PARLIAMENT SPEECH
VIEW 2004-03 NAMING AND CATEGORISATION OF ME
VIEW 2004-02 CANADIAN DIAGNOSTIC CRITERIA - COMMENTARY
VIEW 2003-12 PCT USE OF GOVERNMENT FUNDS - CONCERNS
VIEW 2003-03 MRC DRAFT RESEARCH STRATEGY - RESPONSE

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