for Press and Media Journalists
compiled by Jane Colby
Executive Director, Tymes Trust
ME is a serious neurological condition affecting the brain and central nervous system. It is also known as Post Viral Fatigue Syndrome (PVFS) and was formerly known as Atypical Polio. Chronic Fatigue Syndrome is an alternative name (originally invented for research purposes) but this term also includes other fatigue states.
- Numbers of UK children with ME are estimated at 25,000 out of 300,000 sufferers of all ages.
- Incidence is growing.
- Clusters occur in families, schools and communities.
- In some areas, 2/3 of the children on Home Tuition have ME.
ME can cause severe pain, weakness, exhaustion, chemical intolerance, inability to concentrate, think or speak correctly, temperature and blood pressure abnormalities, racing pulse and palpitations, abnormalities of sensation, mood swings, digestive disturbance, sensitivity to sound and light. Abnormal brain cortisol levels mean that the normal stresses of life can provoke relapse, as can physical or intellectual demands upon the body.
Unique to ME is the delayed exhaustion after physical or intellectual effort - up to 72 hours' delay.
The scale of the problem in schools (Dowsett and Colby, Journal of CFS 1997, study sample 333,000)
- 51% of pupils on long-term sickness absence were found to have ME.
- ME is the biggest cause of long term sickness absence from schools. (Confirmed in Rangel et al, Journal of the Royal Society of Medicine 2000)
- ME shows a cluster pattern in schools; a documented history exists of school ME outbreaks
- ME statistics in children peak in the mid-teens
- Teachers are 3-4 times as likely to develop ME than the general population, often leading to early retirement. (The high incidence in teachers is thought to be due to exposure to infection; nurses and health workers are also at higher statistical risk.)
The cause of ME is not fully understood but a viral trigger is the most likely culprit, together with the susceptibility of the individual. It is not a new illness but in the 20th Century it started appearing in epidemic form.
Dowsett and Colby's joint work began in 1991 when their Guidelines for Schools were first published and focused attention on ME in children at a time when the majority of the medical establishment doubted that childhood cases existed.
Since then, the UK Chief Medical Officer has instructed doctors that ME is real and should be treated sympathetically. The government has also set up the Dept of Health Chief Medical Officer's Working Group on CFS/ME. Jane Colby, Tymes Trust's Executive Director, is a member of the Children's Section.
The seriousness of the condition
A bout of ME typically lasts an average of 4 years 6 months but may be shorter or much longer; many people's symptoms eventually remit, but to differing degrees. Relapses can occur. In Rangel et al, 47% of the children considered to be "recovered" still had symptoms; a third of these were still not able to attend school full-time.
- Children with ME are delicate; the illness can become much worse if treated wrongly, so it is essential to understand how to manage it.
- In severe cases, children can become partially paralysed and have to be tube-fed.
- In a Canadian study of 1826 patients only 2% reported being completely recovered after 7 years.
ME is variable from case to case like all illnesses, but it is a myth that the disease always "goes away and stays away". Some patients relapse many years later and ME (CFS) has appeared on death certificates.
Psychological/psychiatric symptoms can arise, but have been found to follow rather than being a cause of the disease (Shanks and Ho-Yen). They appear to result from a combination of two things:
- brain malfunction;
- trauma resulting from becoming very ill, facing disbelief from doctors, family and friends, and facing a potentially long-term illness for which there is no reliable prognosis.
- Energy management and pacing of life appears to be the key to supporting the body while it heals.
- Education must be extensively modified to take account of children's special educational needs, to avoid relapse and promote recovery.
- There is no cure for ME; the human body, given support, will self-heal as far as possible.
- Some treatments may ease symptoms but children and adults with ME are typically very sensitive to medication and may suffer adverse effects.
- Graded Exercise studies have been restricted to the less sick or the partially recovered, and also to those without classic ME symptoms such as sleep reversal, who may have another illness. Studies do not detail reasons for patients dropping out, and many people with classic ME symptoms report deterioration due to this treatment.
- Cognitive Behaviour Therapy's apparent benefits appear not to last over time. It is not curative; patients who report feeling better as a result of CBT have been found not to be in reality more recovered than others.
- Claims for results from various treatments are often made without really long-distance follow-up. The condition naturally fluctuates, and it may improve despite, rather than because of, treatments.
Tymes Trust, the children's national ME charity, runs a Children and Families Advice Line and offers free quarterly mailings with information for carers, parents, young people and professionals. A personal, friendly service.
Patron: Lord Tim Clement-Jones, Liberal Democrat Spokesman on Health in the Lords.
Advice Line: 01245 401080 begin_of_the_skype_highlighting 01245 401080 end_of_the_skype_highlighting
Young Action Online : www.youngactiononline.com is a safe site that works in partnership with the Tymes Trust.
Offers free information and free registration online for Tymes Trust's services.
Books and magazines for children, young people, their families and professionals:
Zoe's Win by Jane Colby published by Dome Vision, price £7..95 ISBN 0-9537330-0-9
Reviews and ordering via www.youngactiononline.com or via bookshops.
Reader-friendly, carries essential information for young people, families, teachers and doctors. Doubles as an SEN book for schools, recommended by Dr Nigel Hunt of the Chief Medical Officer's Working Group and by Dr Alan Franklin, consultant paediatrician.
Tymes Magazine published quarterly by the Tymes Trust. Free to UK members under 26, features sections for sufferers of all ages, carers and professionals, with contributions by children, young people, and ME specialists.