by Jane Colby
Executive Director of Tymes Trust
Tymes TrustAdvancing the Care of People with ME in partnership with
Tymes Trust is a national ME charity specialising in children and young people. We played a major role in the government Chief Medical Officer's Working Group on CFS/ME, focusing on compiling the children's chapter (report published by the Department of Health 2002).
The Trust's Patron is Lord Clement-Jones CBE, Liberal Democrat Spokesman on Health in the Lords.
Tymes Trust Ethos
Tymes is the longest running national organisation supporting children with ME, having been inaugurated in 1989 by two young people with ME who invented the name TYMES to stand for The Young ME Sufferer.
We realise that much distress is experienced when a young person is diagnosed with a serious and disabling illness. Members tell us that our friendly, personal approach, coupled with the provision of reputable information supplied by a professional and experienced team, makes us a 'lifeline' and a 'port in the storm' of controversy surrounding ME. We hope that we shall be able to help you too.
ME (Myalgic Encephalomyelitis) is a serious neurological condition also known as Post Viral Fatigue Syndrome (PVFS). It was formerly known as Atypical Polio. Chronic Fatigue Syndrome (CFS) is an alternative name but this term may also include other fatigue states.
Viral infections are known to be involved in triggering ME.
Symptoms of ME
Disturbance of brain and central nervous system
Loss of memory, concentration, balance, coordination and fine motor skills
Difficulty sequencing words and numbers, speaking, thinking and absorbing information
Abnormalities of sensation (eg pins and needles, numbness), vision, hearing, sleep rhythm, temperature control, appetite, digestion, blood pressure, circulation, hormone production, response to stress
Development of sensitivities eg to light, sound, touch, certain foods, chemical substances (including perfume, paint, medication and anaesthesia)
Bouts of racing pulse (tachycardia) and breathlessness
Mood swings, panic, anxiety or depression may result from brain dysfunction and the distress of misunderstood illness
Generalised pain and weakness
Pain in muscles, joints, head, back, limbs, chest and stomach
Muscular weakness and twitching is common
Exhaustion, up to 72 hours after effort
Even minimal exertion (cognitive or physical) can trigger exhaustion; the delayed effect is a classical sign of ME, differentiating it from other types of fatigue
Temporary hyperactivity may be experienced due to brain dysfunction, resulting in exhaustion
Incidence of ME
The number of children with ME is estimated at 25,000 out of around 300,000 sufferers in the UK.
Incidence is growing and it is the biggest cause of long-term sickness absence in schools. A study of 333,000 pupils revealed that 51% of those on long-term sick leave had ME and 20% of schools had cases. Pupils with ME form the biggest category of pupils with medical needs requiring home tuition or distance learning on a long-term basis.
Clusters of ME occur in schools, families and communities.
There is no straight 'cure' for ME, and the body needs energy to heal itself, so personal energy management is a safe way to live with ME without provoking the side-effects of some other methods.
Pacing life carefully, using physical aids and finding alternatives to energy-sapping activities have been shown to be effective in promoting recovery.
Studies claiming the effectiveness of 'graded exercise' have generally been restricted to the less sick or the partially recovered, and to those without classic ME symptoms, who may have another illness.
Some treatments may be harmful, such as overzealous physiotherapy. The condition naturally fluctuates, and may improve despite, rather than because of, treatments.
GPs may be able to assist with symptomatic relief but medication can cause side effects and may not be of benefit eg for inducing sleep or relieving pain.
The illness tends to resolve over an extended period but relapses can occur. If treated inappropriately, the patient can become much worse. In extreme cases, children can suffer fits or collapse. Some go through periods of partial paralysis and may have to be tube-fed.
Because of these factors, good old-fashioned convalescence is a good starting point, followed by careful management of the young person's life and education to avoid the downturns associated with trying to force the pace of recovery.
Inappropriate educational demands impede recovery and are a key cause of relapse in children. Energy Efficient Education (home tuition, distance learning) can maximise achievement whilst protecting health.
Social contact can be preserved through visits from school and friends and through making new friends who understand the limitations imposed by the illness, for example, through the Trust.
Children with ME are legally entitled to education suited to the special educational needs caused by the condition.
Tymes Trust Services
The Tymes Trust provides an Advice Line manned by our own trained and experienced Advice Line Team, all of them with personal experience of ME. Most are parents of children with the condition and some have also had ME themselves.
Advice Line hours are Monday-Friday, from 11.00am - 1.00pm and again from 5.00pm - 7.00pm.
The number to ring is: 01245 401080 begin_of_the_skype_highlighting 01245 401080 end_of_the_skype_highlighting.
Outside Advice Line hours you may leave a message and one of our Team will call you back.
We also provide quarterly family mailings including Tymes Magazine, to which young people with ME and their families may contribute.
Professionals Referral Service
Our Professionals Referral Service ensures that your doctor can talk to our ME experts within the medical field, your child's teachers can talk to our ME experts in the teaching profession, and so on.
We are able to provide specialists within most professions who can help to sort out any misunderstandings you may have, for example, with social services.
What does all this cost?
Services are free of charge to young people with ME under 26, and their families.
No problem. For a yearly subscription of £9.75 you can receive the magazine and access the Advice Line.
To register, go to www.youngactiononline.com and complete the form there, or send your details to Tymes Trust, PO Box 4347, Stock, Ingatestone, CM4 9TE.
Want to discuss whether to register? Telephone 01245 401080 begin_of_the_skype_highlighting 01245 401080 end_of_the_skype_highlighting and speak to one of our Advice Line Team. You do not have to be a member to obtain a Tymes Trustcard.
With love to all of you from all of us.