Chronic Fatigue Syndrome

 

Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (or encephalopathy) (ME) is a relatively common illness.  CFS/ME comprises a range of symptoms that includes fatigue, malaise, headaches, sleep disturbances, difficulties with concentration and muscle pain.  A person's symptoms may fluctuate in intensity and severity, and there is also great variability in the symptoms different people experience.  The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions

Many different potential aetiologies for CFS/ME have been investigated, but the diverse nature of the symptoms can not yet be fully explained.  Viral triggers are common, especially EBV.  Research has focused on genetic links, endocrine abnormalities, immunology, neuroimaging, virology and infectious processes, sleep disruption, exercise, somatisation, depression and anxiety disorder.  None can alone fully explain the illness and there is no compelling evidence for viral persistence, allergy or nutritional deficit

The CCG has a contract with King's College London for the assessment of patients with a potential diagnosis of CFS and patients with fatigue associated with chronic diseases such as rheumatoid arthritis (RA), Multiple Sclerosis (MS), Diabetes and chronic obstructive pulmonary disease (COPD)

Patients where there is a suspicion of potential CFE/ME who are aged 18 years and over can also be referred to the KMPT Chronic Fatigue Syndrome/Myalgic Encephalopathy Service for assessment and treatment (full details below)

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Diagnosis

NOTE:  Diagnosis of CFS/ME is based on the patient's symptoms and by ruling out other conditions that could be causing the symptoms

A diagnosis of CFS can be made if there is clinically evaluated, unexplained, persistent or relapsing chronic fatigue of new or definite onset, not the result of ongoing exertion; not substantially relieved by rest and results in substantial reduction in previous levels of occupational, educational, social, or personal activities plus the concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue:

  • substantial impairment in short-term memory or concentration
  • sore throat
  • tender lymph nodes
  • muscle pain
  • headaches of a new type, pattern or severity
  • unrefreshing sleep
  • post-exertional malaise lasting more than twenty four hours
  • multi-joint pain without joint swelling or redness

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Investigations

NOTEThere is no diagnostic test specifically for CFS/ME

Send copies of the following investigations (which should be carried out within 2 months of referral) together with the referral letter to the address below:

All patients:  FBC, ESR or CRP, U&Es, LFT, calcium, albumin, creatine kinase, thyroid function tests (TSH and free T4), local coeliac screen (e.g. IgA endomysial autoantibodies), random blood glucose, urinalysis for blood, glucose and protein

Can be helpful: EBV serology, Chest X-ray, Rheumatoid factor, ANF, CMV, toxoplasmosis, HIV serology

Not helpful: Enteroviral serology, VP-1, neuroimaging

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Referral to the King's College London CFS Clinic

Referral criteria: 

  • Failure to respond to above measures
  • Special circumstances (young children, job at risk)
  • More than six months’ illness
  • Marked disability
  • Adolescent referrals accepted for 11-18 year olds

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Address for referrals for adult patients:

Unit Administrator, Chronic Fatigue Syndrome Research and Treatment Unit, Mapother House, 1st Floor, De Crespingy Park, Denmark Hill, London SE5 8AZ

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Address for referrals for adolescents:

Professor Trudie Chalder, Chronic Fatigue Syndrome Research and Treatment Unit, Mapother House, 1st Floor, De Crespingy Park, Denmark Hill, London SE5 8AZ

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Referral to the KMPT CFS/ME Service

The KMPT CFS/ME service is designed to offer interdisciplinary assessment and evidence-based treatment to adults (aged 18 years+) for the management of Chronic Fatigue Syndrome/ME. On referral the diagnosis will generally already be established and other possible causes will have been excluded.  The emphasis of our service is on self-management and rehabilitation and draws on principles of cognitive behavioural therapy (CBT) and graded activity

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Referral Information:

If a patient meets the referral criteria (see below), please complete the referral form and send to:

Kent and Medway CFS/ME Service, Neuropsychology Medway Admin Hub, Disablement Services Centre, Medway Maritime Hospital, Gillingham, Kent ME7 5NY

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  1. KMPT CFSME Referral Criteria 2018-19
  2. KMPT CFS ME Referral Form
  3. 'Understanding CFS ME' Patient Information (KMPT)
  4. CFSME Friends and Family Information Leaflet (KMPT)

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Blood tests / Phlebotomy

If your practice does not have a practice nurse who is trained to take bloods, you can refer a patient to the Pathology Department at East Kent Hospitals for a blood test (find details here)

Alternatively, Buckland Hospital (Dover) and the Royal Victoria Hospital (Folkestone) both operate a walk-in service where no appointment is necessary, except for if the patient requires a Glucose Tolerance Test (GTT).  In the event that a GTT is required, please call 01304 222552 (for Buckland) and 01303 854484 (for Royal Victoria) to arrange a suitable appointment

Please ensure that the patient remembers to take with them their blood test form to the walk-in centres

Have a question or query?

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