SRP 034 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Policy number: SRP 034
Policy name: SRP 034 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Status: Group Prior Approval
Effective date: 1 April 2024
Next review date: 1 April 2026

Mid and South Essex ICB commissions specialist assessment and treatment for myalgic encephalomyelitis/chronic fatigue (ME/CFS) on a restricted basis. 

Mid and South Essex ICB only commissions specialist assessment and treatment for adults with mild to moderate myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as defined below1 

MSE ICB do not commission specialist ME/CFS services for children or adults with severe or very severe ME/CFS. Support should be sought from relevant specialists e.g. community paediatrician, gastroenterologists. 

MSE ICB does not fund assessment and/or treatment by secondary care specialists in ME/CFS care on either an in-patient or outpatient basis outside the locally commissioned service.   

Patients should be managed by GPs as recommended by NICE guideline Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management [NG206] Published: 29 October 2021. Further information can be found in Bacme Primary Care Guide to ME/CFS.

Specialist assessment/treatment for adults for mild to moderate myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is accessed through a referral from the patient’s clinician to the Essex CFS/ME Service. CFS/ME is no longer deemed to be a lifelong diagnosis if appropriate treatment and management has been provided as outlined by NICE 2021. Previous diagnosis is not a guarantee of acceptance into the service. The service will accept 16–18-year-olds if they already have a confirmed diagnosis. 

Patients can be referred for unexplained fatigue lasting at least 4 months once the following alternative causes have been considered and excluded:  

  • Organ failure (eg COPD, AKI, CKI, CKD stages 2-4, Heart failure) 
  • Long Covid-if suspected refer to the Long Covid Clinic 
  • Chronic inflammatory diseases  
  • Major neurological diseases (e.g. Epilepsy, MS, MND, Stroke, Parkinson’s Disease, TBI) 
  • Systemic treatment for neoplasms 
  • Untreated endocrine diseases 
  • Primary sleep disorders e.g. Sleep Apnoea, Insomnia (if present it needs to be documented that well controlled) 
  • Substance use and alcohol or drug dependence. 
  • Reversible causes of fatigue (medications*, infections or recent major surgery) 
  • Psychiatric conditions including severe anxiety or depression, Bi-polar Disorder, OCD, Personality Disorders, psychoses, eating disorders, risk behaviours including suicidal ideation and intent 

A new diagnosis of ME/CFS is rare over 60years old, and as it is a diagnosis of exclusion, if they already have 3 or more co-morbidities it makes this even less likely and more likely that fatigue is due to other conditions. 

Patients must also meet the following criteria: 

  • BMI between 20kg/m2 & 40kg/m2 (state BMI on referral letter-both high and low BMI can cause fatigue, so consider alternative investigation or referral if it is suspected to be a significant issue. 
  • No ongoing medical investigation 
  • Not receiving concurrent rehabilitation from another service. 
  • Not pregnant – however patients can be referred 6 months post-partum 

*Medications 

  • Do not prescribe any medicines or supplements to cure ME/CFS.    
  • Offer people with CFS/ME a medication review in line with the NICE guidelines on medicines adherence and medicines optimisation.  
  • When prescribing medicines for symptom management GPs should take into account that people with CFS/ME may be more intolerant of drug treatment.  
  • Consider:  
    • starting medicines at a lower dose than in usual clinical practice  
    • gradually increasing the dose if the medicine is tolerated 

Funding for patients not meeting the above criteria will only be made available in clinically exceptional circumstances.  

Find out more information on applying for funding in exceptional clinical circumstances 

1Definitions of severity are not clear cut because individual symptoms vary widely in severity and people may have some symptoms more severely than others. The definitions below provide a guide to the level of impact of symptoms on everyday functioning. 

  • Mild ME/CFS-People with mild ME/CFS care for themselves and do some light domestic tasks (sometimes needing support) but may have difficulties with mobility. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often have reduced hours, take days off and use the weekend to cope with the rest of the week. 
  • Moderate ME/CFS-People with moderate ME/CFS have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work or education, and need rest periods, often resting in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed. 
  • Severe ME/CFS-People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound. 
  • Very severe ME/CFS-People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.