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!"

The T Rex In The Room and Paediatric ME, CFS, SEID For Families And GPs

Our 2016 leaflet and Jane Colby's speech given at the House of Lords to introduce it. Are there risks with graded exercise therapy? NICE Guidance and education.

False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)

Are ME management regimes making children worse? Why are parents suspected? Why are authorities using the courts to try and admit children to psychiatric units? A peer-reviewed paper. Tymes Trust recommends that you obtain a copy of your child's medical and school records to check what has been written about your family.

ME Awareness 2015 : Equality and ME

Under the Equality Act, children with ME have a protected characteristic; ME "falls within the definition of disability". "Even if a school thinks that it is acting in the best interests of a disabled pupil, it may still be treating that pupil unfavourably."

Email Alerts and Trust Statements

Alert emails are free 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.

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

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

DON'T and Banned from sleeping by Jane Colby

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

NO and 25 years of trusting TYMES by Jane Colby

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

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.

Explain Your Abilities

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

School Examinations and ME

A quick summary of how exams can be modified to suit the needs of children with ME. Full official information on exam Access Arrangements and Special Consideration can be found on the Joint Council for Qualifications website here.

The Essex ME Companion

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

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.

No Reported Harassment at Bristol University (Information Obtained Under FOI)

Shining A Light On The CMRC Setup (Minutes And Emails Obtained Under FOI)

A Report from Tymes Trust - the inside story of the UK CFS/ME Research Collaborative. Our Report is based, not on speculation or conjecture, but on direct evidence from emails exchanged by the participants. We think this is key reading for the ME community. We are publishing the text here in case you have not seen it yet.

Why We Oppose The Named Person Legislation

Tymes Trust Scottish Officer's speech at the Scottish Liberty Forum event in Glasgow reporting on the threat to families.

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.

Child Protection Issues

A presentation to the All Party Parliamentary Group on ME.

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

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

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.

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 - 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.

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.

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.

Family Testimonies

...on the use of interactive virtual education for young people with Myalgic Encephalomyelitis (ME).

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.

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.

Experiences - Whispered Words

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

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

Professional Guides - Physios Urged to Go Cautiously

First published in Physiotherapy Frontline.

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.

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.

Professional Guides - Care of CFS/ME in Children

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