Chronic Fatigue Syndrome (CFS/ME) Care Pathway

Review in progress

Disclaimer: The guidance contains helpful primary care information for management of referrals and up to date referral criteria. These guidelines are locality specific to best reflect local services. This guidance does not override or replace the individual responsibility of healthcare and social care professionals involved in the delivery of care to make informed professional judgements appropriate to the circumstances of the individual.

Scope

This guidance refers to:

  • The diagnosis and management of Chronic Fatigue Syndrome (CFS/ME) in adults age 17 and over

This guidance does not cover:

  • Under 17s

Assessment

Symptoms

  • Core symptoms are physical and mental fatigue.
  • The fatigue is characteristically worse after physical or mental exertion either immediately or as a delayed response.
  • Cognitive dysfunction is often present and leads to poor concentration and poor short term memory.
  • Non-refreshing sleep is usual and sleep pattern may vary between too much and too little both within and between patients.
  • Low-grade fever (less than 38ºC) and tender (but normal or small) lymph nodes and recurrent sore throats are reported.
  • Headaches and mood disturbance is common

Signs

  • Physical examination is characteristically normal and any abnormalities need careful assessment as possible clues for alternative diagnoses.
  • Postural hypotension is sometimes reported especially in patients who are significantly affected. Fevers, significantly enlarged lymph nodes or any objective signs of joint disease are more likely to indicate other disease.
  • Symptoms or signs that are not typical of CFS/ME (e.g., high-grade fever, weight loss, enlargement of liver, spleen or lymph nodes) should be investigated separately, as indicated clinically.

Diagnosis

  • The diagnosis of Chronic Fatigue Syndrome/ME is made when the onset, course and impact of fatigue is characteristic, and after exclusion of other conditions (physical and psychiatric) that may cause fatigue.
  • The fatigue should be of new onset rather than life long, but the manner of onset may be acute (such as after a viral infection) or gradual over a few weeks or months.
  • The diagnosis and management strategies are the same regardless of the method of onset
  • Under the criteria for CFS/ME (Fukuda et al, 1994) the fatigue should have been persistent for at least six months before a diagnosis of CFS/ME can be made, but NICE guideline uses 4 months
CRITERIA FOR DIAGNOSIS OF CFS/ME (Fukuda Criteria)

Chronic Fatigue

  • New onset (not lifelong)
  • Lasting at least six months (NICE = 4 months)
  • Substantial functional impairment
  • (Occupational social or personal activities)
  • Not substantially alleviated by rest

At least four of the following for at least 6 months:

  • Memory or concentration impairment
  • Sore throat
  • Tender lymph nodes
  • Muscle or multi-joint pain
  • Headaches
  • Unrefreshing sleep
  • Post-exertion malaise lasting >24 hrs

No medical illness explaining the symptoms

No diagnosis of:

  • Psychosis (schizophrenia, mania, or psychotic depression)
  • Eating disorder (anorexia nervosa or bulimia nervosa).
  • Dementia.
  • Alcohol or substance abuse, current or in the prev 2 years
  • Severe obesity (body mass index over 40)

Differential Diagnoses

  • Symptoms of fatigue and myalgia are common in many inflammatory disorders. They are often present in moderate or severe cardiac, respiratory, renal, hepatic or neurological diseases
  • Irritable bowel syndrome, multiple food intolerances, fibromyalgia and CFS/ME. There is no evidence to suggest that there is an allergic basis to CFS/ME.
  • Sleep apnoea
  • Ferritin and folate ideally should be within normal range. For a female of childbearing age we recommend a ferritin of >50ng/ml as evidence shows that lower levels could have an impact on fatigue. It may take some time for a low ferritin and folate to produce changes to the haemoglobin.
  • Low Vitamin D can also produce severe fatigue and muscle pain. We recommend that the range is within the sufficient quotient.
  • It is important to exclude psychiatric disorders
  • Psychotic disorders, eating disorders, dementia and substance misuse are exclusion criteria for making a diagnosis of CFS/ME

An experienced general practitioner should be able to make a diagnosis of CFS/ME in most cases. Specialist medical or psychiatric referral is only required if the diagnosis remains in doubt

For more information please see Managing CFS/ME in Primary Care

Investigations

Undertake the following to aid diagnosis, inform management or prior to referral:

There is no validated diagnostic test for CFS/ME and the purpose of laboratory investigation is to exclude other conditions that may cause fatigue. Minimum recommended investigations

  • FBC
  • Inflammatory markers- CRP and ESR or PV
  • U&E
  • Calcium + phosphate
  • LFT
  • TFT
  • Urinalysis for protein, blood and sugar
  • Screening for Coeliac disease if indicated by symptoms
  • Creatine kinase
  • Other investigations should be performed when indicated by the clinical history and examination.

Management

It is important to foster therapeutic optimism and encourage patients to understand that the symptoms of the condition may be controlled and thereby increase functioning and quality of life.

If patients believe that nothing can be done it becomes a self-fulfilling prophecy with little or no improvement with the passage of time alone. However If the GP can demonstrate why a diagnosis has been made and educate the patient on the self-management of the symptoms using the principles below then that patient will be more willing to accept that they have a chronic condition and engage managing the effects of CFS/ME

Management Principals - See Guidance for more information
  • Understanding / Education of the nature of CFS/ME
  • Teach the concept of management of symptoms to achieve improvement
  • Facilitate self-management with support
  • Educate regarding Rest and Deconditioning
  • Activity versus Exercise
  • Teach concepts of activity analysis and grading of activity
  • Socialising and pleasurable activities are to be encouraged.
  • Finally - it isn't what you do it's the way that you do it!
  • Pain Management for CFS/ME Sufferers
  • Antidepressants and other medication

For additional self-management information please see:

Referral

Referral Criteria

  • Outpatient Referral - Patient referred to the CFS/ME outpatient service should broadly meet the criteria of CFS/ME according to Fukuda Criteria (see Assessment section). However, in accordance with the NICE Guidelines, patients with more than 4 months' history may be referred if it appears that their problems will be chronic
  • Home Based Rehabilitation Referral - This is available to patients within 30 miles of the service base and whose needs require this level of intervention

Referral Requirements

  • Outpatient Referrals - should be supported by a referral form or letter and may be returned if they do not include the following:
    • A brief history of the fatigue symptoms
    • Previous medical and psychiatric history
    • List of current medication
    • Results of required blood and urine tests carried out within the previous 6 months (see page 4 or referral form for required tests)
    • Results of any other relevant tests done to exclude other causes of fatigue
  • If the patient has had other medical or psychiatric assessments prior to their referral it will be helpful to have details such as copy letters from those consultations
  • Home Based Rehabilitation Referral - should be supported by a completed referral form or letter that should include required referral information and a signed agreement to shared care

Referral Instructions

  • Outpatient Referrals - can be made via referral form or letter and should include all required referral information and sent to the address below
  • Home based rehabilitation referrals - should made via HB Referral Form or letter and should include all the required referral information and sent to the address below:
    • Leeds and West Yorkshire CFS/ME Service Therapy Suite,
    • 1st Floor Newsam Centre Seacroft Hospital York Road Leeds,
    • LS14 6WB
    • Telephone enquiries: 0113 8556330/1/4

Supporting Information

Shared Decision Making

  • Patients have a right to make decisions about their care and should be fully informed about the options they face. They should be provided with reliable evidence-based information on the likely benefits and harms of interventions or actions, including any uncertainties and risks, eliciting their preferences and supporting implementation.

Patient information/Public Health/Self Care

Evidence/additional information

Assurance & Governance

  • This guidance was developed on: 07.2017
  • This guidance was ratified by: The OSCAR Assurance Group
  • Date ratified: 07.2017
  • Publication Date: 07.2017
  • Review Date: 07.2019
  • Ref No: PM1 - 07.2017
Any feedback or suggestions to improve this guidance should be sent to: oscaradmin@this.nhs.uk
Only the electronic version is maintained, once printed this is no longer a controlled document

 

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