Key Points For Children & Young People

These key points for Children and Young People were edited and produced by Tymes Trust for which we thank them.

All the statements below are contained in the text of the Report; they are not our interpretation of the Report, but direct quotes from it. Taken together they comprise key information on the illness, on how it affects children and on how it should be managed, including educational management.

Nature of the Illness and Symptoms

· Chronic Fatigue Syndrome (CFS/ME) is a genuine illness and imposes a substantial burden on the health of the UK population. CFS/ME affects many people and their families in the UK and elsewhere in the world.
· Many of the symptoms of CFS/ME suggest dysfunction of the central nervous system.
· Characteristic or commons symptoms include: persistent/excessive tiredness or fatigue; cognitive impairment; postexertional malaise; pain; sleep disturbance; recurrent sore throat; digestive disturbances; intolerances eg of certain foods, medications and alcohol; other symptoms apparently related to the neurological and/or endocrine systems.
· Activity beyond the level that an individual can usually tolerate will prompt a delayed worsening of symptoms.
· Early recognition with an authoritative, positive diagnosis is key to improving outcomes.

Children and CFS/ME

. Children and young people (defined as being of school age) do get and are profoundly affected by CFS/ME, contrary to some professional and public perceptions.
· In children, the commonest age of onset is 13-15 but cases can occur as young as 5.
· A diagnosis in the young must be especially prompt, accurate and authoritative, and second opinions are needed if doubt exists.·

Time-Scale for Diagnosis in Children

· When a child of young person has symptoms affecting school attendance for at least four weeks, active steps should be undertaken to identify the cause from a list that includes CFS/ME.

Spectrum of Severity

· Some children and young people with CFS/ME are so severely affected by the disease that they become bed-bound, with a similar degree of cognitive and physical impairment to that experienced by patients with severe neurological conditions.

What clinicians can do

· Listen to the patient, recognise and believe his or her individual experience.
· Acknowledge uncertainty and the impact that this has on the patient, family and carers.
· Provide information on and discuss: the nature of the condition, approaches to self-management, helpful therapies, and how to access other agencies for support and services.
· Agree a name for the condition [The Report suggest CFS/ME].
· Give advice on symptomatic treatment.

Treatment/Management

· No management approach to CFS/ME has been found universally beneficial, and none can be considered a “cure”. Patient responses suggest that […] all can cause harm if applied incorrectly.
· As with many chronic conditions, the emphasis should be on improvement and adjustment rather than “cure”. The goal of rehabilitation or re-enablement will often be adjustment to the illness.
· Experience suggests that provision of a wheelchair or other mobility aid does not stop patients working towards mobility, without the equipment in the long term; indeed, such aids probably assist remobilisation, with suitable supervision.
· The notion of “once in wheelchair, never out” is prejudicial; each case must be assessed according to clinical and functional need.
· Although there is no cure for CFS/ME, the condition has been found to improve in most patients both with and without* treatment; it is good practice to encourage patients to become experts in self-management and to choose between treatment options. [* Patients may therefore decline active treatment.]
· Most children who are missing school can be cared for and managed in their homes, with follow-up in primary care or by a specialist such as a community paediatrician.
· Careful listening and respect for parents/carers’ opinions are important factors.

Educational Management

· Nearly all children who are severely affected and many who are moderately affected will require the provision of home tuition and/or distance learning. Some young people will be too severely affected by their illness to participate in any form of education, even at home.
· An educational plan is not an optional extra but an integral part of therapy.
· A young person who is likely to have special needs, including home tuition, should be identified early in the diagnostic process, preferably by a GP or paediatrician.
· Specifically, a young person with CFS/ME should never be forced to study but instead should be encouraged to set a pace that is likely to be sustainable, then have their progress regularly reviewed.
· Some more severely disabled children may need home tuition and/or distance learning on a longer-term basis. In addition, to the time of a tutor or therapist, this may require information and communications technology, which can also help improve social contact.

Child Protection

· In cases of CFS/ME, evidence clearly suggestive of harm should be obtained before convening child protection conferences or initiating care proceedings in a family court.
· Neither the fact of a child or young person having unexplained symptoms nor the exercising of selective choice about treatment or education constitutes evidence of abuse.

Prognosis

· Overall, there is wide variation in the duration of the illness, with some people recovering in less than two years, while others remain ill after several decades.
· A minority of those with CFS/ME remain permanently severely disabled and dependent on others>
· Most people with CFS/ME can expect some degree of improvement with time and treatment, so a positive attitude towards recovery needs always to be encouraged.

Note: The Report recommends that patient organisations be contacted for support