[CO-CURE] MED: How can we help sufferers of CFS?

[Guest guest]

Source: Clinical Pulse, March 18, 2002

How can we help sufferers of chronic fatigue syndrome?

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Dr Nigel Hunt examines the GP's role in this controversial condition, now

recognised as a chronic illness.

With the recent publication of the CFS/ME working group's report, chronic

fatigue syndrome is now an accepted neurological disorder or spectrum of

disorders. Health care professionals must recognise the condition as a

chronic illness and GP's have a pivotal role in this. CFS can affect

adults and children alike. It is a fairly common clinically recognisable

condition with a spectrum of severity. Even in its mildest forms the

disease can have a substantial impact on the individual. In its severest

form the individual can be bed-bound and may even need tube feeding. The

condition is very heterogeneous but has a number of' characteristic common

features, which

can vary in prominence and severity over time.

Provided other causes for symptoms have been excluded in adults a

provisional diagnosis of CFS may be made after about three months from the

onset of symptoms and the diagnosis may be confirmed at six months.

Patients have their own symptom profile, which may be modified by their

previous problems, activity profile and the impact of the disease.

specific symptoms

*) Excessive tiredness or fatigue affects both physical and cognitive

domains, varying in severity. Physical fatigue is not necessarily the most

prominent symptom. Physical or mental exertion, typically resulting in

worsening symptoms after a latent period of one to three days, is a key

feature of the condition. There follows a recovery phase of days or weeks.

Certain individuals are able to maintain a particular level of activity

for some time followed by a setback after several weeks.

*) Cognitive impairment is common as are pain, sleep disturbance,

recurrent sore throat and digestive disturbances.

*) Other symptoms related to neurological and/or endocrine function may

occur, including dizziness, temperature disturbance, postural hypotension

and increased sensitivity to sound and light. The most severely affected

may have unwanted muscle activity (such as involuntary limb movement) and

feeding difficulties.

*) Some will experience palpitations and tachycardia.

*) Intolerances and sensitivity to certain foods, alcohol and certain

medications. Sensitivity to psychotropic medication is common.

Tests and screening

There is no validated diagnostic test for CTS. Evaluation should include

clinical history and physical exam. To exclude other conditions, the

following basic screening tests should be carried out:

*) full blood count

*) C-reactive protein

*) blood biochemistry:creatinine, urea, electrolytes, calcium, phosphate

*) Blood glucose

*) liver function test

*) thyroid function test

*) simple urine analysis.

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Blood tests should be carried out to exclude other conditions

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Differential diagnoses of CFS

*) 's disease

*) anaemia (various types, including vitamin B12 deficiency)

*) anxiety neurosis

*) brain tumours (for example gliomas, astrocytomas)

*) coeliac ,disease,

*) chronic infectious illnesses for example HIV, Lyme disease, TB)

*) malignancy

*) endogenous and reactive depression

*) multiple sclerosis

*) myopathic illnesses (for example myasthenia gravis)

*) renal or liver disease

*) rheumatic diseases (for example rheumatoid disease, systemic lupus,

erythematosus, Sjogren's disease)

*) thyroid disease

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It is important identify any co-existing illnesses

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Other tests will be determined by the history and examination particularly

if symptoms are suggestive of a differential diagnosis (see above). For

example screening tests such as rheumatoid factor and antinuclear

antibodies need to be done for those with symptoms suggestive of rheumatic

diseases.

Sleep, levels of activity and mental health evaluations should be made.

MRI and CT scans are not currently necessary as part of routine care.

Management

No current treatment is helpful for every patient, nor is there a 'cure'.

Inappropriately applied therapies could be harmful.

Therapies should be reviewed or stopped if symptoms appear to get worse.

The role of the GP

GP's have a pivotal role in the multi disciplinary follow-up of patients

with CFS. This includes giving advice of energy/activity management

symptom control (see box, page 52), monitoring of the illness, information

and psychological support for sufferers and those around them. A number of

patient support groups are very helpful to health professionals and

sufferers (see below).

The evidence for treatments that have an impact on CFS is sparse, but the

working party identified three strategies that could be of benefit:

pacing, graded exercise and cognitive behavioural therapy. The aim of all

these treatment modalities, which should be negotiated between patient and

doctor, is to achieve sustainable improvement in overall functioning and

adaptation to the illness in gradual steps.

It is good practice to encourage patients to become experts in

self-management. There is insufficient research data available to make

definite recommendations for the severely affected of any age.

Mobility aids such as wheelchairs, mobility benefits and the blue badge

disabled car parking permit scheme can be helpful.

Energy/activity management

In the early stages of the illness rest is paramount. Thereafter during

the convalescent phase there needs to be a balance between activity and

rest/relaxation in the physical, mental and emotional domains.

A baseline level of activity should be recorded in a diary, which will

allow activity levels to be related to symptoms and energy levels. The

report recommends that a sleep routine should be established as quickly as

possible. In practice this may be difficult, again a diary could be useful

to record patterns and responses to interventions.

Complications

CPS is typically a relapsing illness. It is important to review the

triggers for such occurrences so that lessons can be learned and the

management plan can be adapted to Iessen its impact.

The development of any new symptoms should be managed in just the same way

as in any patient presenting, with a new symptom - they should be

investigated and treated appropriately.

When to refer

GP's should usually be able to diagnose and manage adult patients with

CFS. Where there are complex issues or management uncertainties then

referral to a CFS specialist is appropriate. Patients with diagnostic

uncertainties or those with co-morbid conditions requiring

secondary/tertiary level

management should be referred to other specialists. Those severely

affected will need appropriate domiciliary services.

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Controling sympoms

Many of the evidence-based approaches that GP's use for symptom control in

other conditions can be appropriately adapted and used in patients with

CFS. Sufferers are often relatively intolerant of medication, so it is

prudent to start with lower doses and to use medications that have a low

incidence of adverse effects. The patient should be fully informed and

therapies should be evaluated.

*) Pain - simple analgesics may suffice. Low-dose tricyclics such as

amitriptyline or the anticonvulsant carbamazepine can be useful for

neuropathic pain. Referral to a specialist pain team may be helpful.

Muscle relaxants such as baclofen can be useful in reducing unwanted

muscle activity.

*) Sleep - if medication is necessary, low-dose tricyclics are often

helpful in restoring sleep quality and rhythm. Drugs such as

amitriptyline should be given two hours before bedtime starting at a low

dose and titrated up slowly at weekly intervals.

*) Anxiety and depression - active management is crucial as

mood disorders can exacerbate CFS and significantly increase the risk of

suicide. Where major mood disturbance presents, expert guidance should be

obtained. Suicidal thoughts require same-day urgent review by a

psychiatrist. Drugs such as citalopram and sertraline are often tolerated

while low-dose tricyclics can be used as an adjunct for sleep disturbance.

*) Headaches - These often have a migrainous character and a trial of

migraine prophylaxis may be appropriate. Beta-blockers should be avoided.

*) Abdominal discomfort - This often has features of irritable bowel

syndrome and should be managed accordingly. Excluding wheat and/or dairy

products can be worthwhile. Such a dietary exclusion can also prove

helpful for recalcitrant headaches.

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Children and young people

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Most severely affected children will require home tuition

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The community paediatric services should be notified about all children

with CFS. Many will need specialist follow-up. The degree input and

balance between GP and consultant will depend on the severity and progress

of the condition.

Generally, the prognosis is better for children than for adults.

Research suggests that CFS produces more long-term sickness absence than

any other condition in schoolchildren. If a child has had symptoms

affecting school attendance for at least four weeks then active measures

should be taken to identify the cause.

In addition to the symptom complex described above, abdominal pains,

nausea arid appetite changes are common in children. The differential

diagnoses in those who present with school absence should include

depression, school phobia, eating disorders, and, rarely child abuse.

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 of the severely affected will need this on a longer-term

basis. Others will be too severely affected by their illness to

participate in any form of education.

A number of medications are available to relieve symptoms. These are best

started at low doses. Some potentially useful drugs are not licensed for

children. Specialist advice should be sought in these circumstances.

Most people with CFS can expect some degree of improvement, so a positive

attitude towards recovery needs to be encouraged.

Sadly, a minority remain permanently severely disabled.

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The report can be accessed on the web at

www.doh.gov.uk/cmo/publications.htm

Nigel Hunt is a GP in Chelmsford, Essex, and member of the

Chief Medical Officer's independent working party on CFS/ME

- he is also medical adviser to Tymes Trust

Useful contacts

The ME Association 01280 816115

www.meassociation.org.uk

(services for adults, general advice, benefits)

Times Trust 01245 401080

www.youngactiononline.com

(services for children and young people and specialists in education)

The 25 per cent ME Group

www.btinternet.com/~severeme.group

(for those severely affected with CFS/ME)

Westcare 0117 9239341

(for pacing and self-management courses)

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