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Changing year end to save pension could backfire

CFS is a common disabling condition responsible for the highest number of lost school days in the UK ­

Dr Nigel Speight provides an overview on how it should be managed while

Dr Gavin Spickett gives

an immunologist's perspective

The prevalence range of chronic fatigue syndrome in children and young children is estimated to range from 50 per 100,000 to as high as 2 per cent. The illness can start in the five- to 10-year age group but the mean age of onset is usually 10-12.

Prolonged illness is common with wide unpredictable fluctuations in severity. The illness is clinically similar to that in adults with probably a better long-term prognosis overall.

What are the clinical features?

These are basically similar to those in adults. Diagnosis is probably a bit easier because of the smaller range of potential differential diagnoses from which children may suffer. There is a wide spectrum of severity ranging from the mildest cases (no school loss but having to give up sport for a year) to the most severe (bedridden and tube fed for several years). Fortunately, even severe cases can make full recoveries.

A minority of cases start very acutely in the context of an apparent severe viral infection. In the majority of cases the onset is subacute, or even so gradual that the exact time of onset is difficult to determine.

In the prodromal phase there may be undue prostration with a series of viral infections with apparent return to normality in between.

The cardinal symptom of ME/CFS is fatigue ­ made worse by exertion.

This fatigue can be physical or mental, and the exertion that causes its worsening can likewise be either physical or mental. There may be a delay in onset of the deterioration .

There is a wide range of associated symptoms and any or all of these can also be worsened by exertion. These include:


·Myalgia and arthralgia

·Abdominal pain

·Sleep disturbance (often hypersomnolence initially followed later by sleep reversal)

·Problems with temperature control

·Problems with concentration, cognition and short-term memory

·Photophobia, hyperacusis, hyperaesthesia and osmophobia

·Dizziness (postural hypotension or true vertigo), and many others

Severely affected cases may be bedridden, suffer from 'total body pain', sleep 23 hours a day and be so nauseated and anorexic that nutrition is compromised. In a small minority of cases tube feeding may become necessary.

Diagnosis and differential diagnosis

The diagnosis of ME/CFS is based almost exclusively on the history. Pathognomic physical signs do not exist (although extreme pallor of a peculiarly translucent nature is characteristic). As yet there is no clinical test readily available for diagnostic purposes, although the research tool of positron emission tomography has shown a characteristic pattern of cerebral hypoperfusion in this condition.

Because of the importance of the history and the potentially large number of symptoms, adequate time should be set aside for the consultation.

This is important not just for accurate diagnosis but because the patient will subsequently feel validated at the belief and concern the doctor is showing in his/her illness.

The purpose of investigations is simply to rule out other conditions (anaemia, hypothyroidism, collagen disorders, Addison's disease, coeliac disease etc). Normal investigations should be expected and are not an excuse to reject the illness.

Physical examination (especially of the CNS) is important. I once found papilleodema due to a posterior fossa tumour in a boy referred up as '? ME' with a history of headaches and falling asleep at school following a flu-like illness. Another differential for hypersomnolence is narcolepsy.

It is worth mentioning the value of an early diagnosis. The family will often be worrying about far more serious possibilities (such as leukaemia) and early consideration of the diagnosis may serve to protect the young person from pressure (intrinsic or extrinsic) to return to school, participate in sport, revise for exams etc.

There is strong anecdotal evidence from patient support groups of cases where such pressure may actually have worsened the course of the illness.

Role of primary vs secondary care

The GP's main role will be to consider the diagnosis and refer to the local paediatrician for confirmation.

In severe and very severe cases (housebound and bedbound respectively), willingness to visit at home (eg alternately with the paediatrician) is highly appropriate.

In milder cases there is no reason why the GP should not be the lead clinician. Most GPs will already be supporting several adult ME sufferers without the help of a colleague in secondary care.

The GP should accept that there is currently no curative treatment available and explain this to the family. Management should follow the same lines as any other chronic debilitating illness for which we have no cure ­ sympathy, support and symptomatic treatment.

Active management vs pacing

This remains a controversial area. Studies in ambulant adult patients with ME/CFS have shown some evidence for efficacy of graded exercise and cognitive behavioural therapy (GET and CBT).

However, the relevance of this to more severe cases remains open to question and patient support groups report many cases that appear to have worsened on GET.

At this stage in our knowledge it

would seem unwise to be too dogmatic either way.

Things the GPs can do

·Engage/sympathise and generally validate the young person; actually using the term ME rather than CFS can be powerfully symbolic in this respect; say you believe their illness is genuine and is 'not all in the mind'

·Offer to keep seeing the young person throughout his/her illness, even if the paediatrician is also involved

·Offer practical support as needed, for example sicknotes for school, letters for extra allowances for examination, support for benefits and disabled stickers where appropriate

·Offer symptomatic treatment, for example analgesics, low-dose tricyclics for pain and insomnia, melatonin for sleep reversal, diet and pizotifen for super-added migraine etc

·Look out for opportunities to reduce adverse factors, such as prophylactic antibiotics if frequent relapsing tonsillitis

·Check that the whole extended family is 'on-side', and attempt to ameliorate if not

·Offer second opinions, act as patient's advocate if patient and family feel their relationship with secondary care is sub-optimal

·Keep an eye open for secondary psychological problems

(eg depression) and manage these in their own right

·Put in touch with national and/or local ME support groups (see left)

Useful websites

Nigel Speight

is consultant paediatrician at the University Hospital of North Durham and medical adviser

to the Association of Young People with ME

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