Signs and Symptoms

Following the release of the updated NICE guidelines NG206, the criteria for diagnosis and considering a referral to a specialist ME/CFS service is now more stringent. Patients should only be referred if they are experiencing all 4 symptoms outlined below, for 3 months or more. The symptoms are as follows:

1. Debilitating fatigue
   that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
2. Post-exertional malaise
   after activity in which the worsening of symptoms:
   • Is often delayed in onset by hours or days
   • Is disproportionate to the activity
   • Has a prolonged recovery time that may last hours, days, weeks or more.
3. Unrefreshing sleep or sleep disturbance (or both), which may include:
   
   • Feeling exhausted
   • Feeling flu-like and stiff on waking
   • Broken or shallow sleep
   • Altered sleep pattern or hypersomnia.
4. Cognitive difficulties (sometimes described as ‘brain fog’), which may include:
   
   • Problems finding words or numbers
   • Difficulty in speaking
   • Slowed responsiveness
   • Short-term memory problems, and difficulty concentrating or multitasking.

ME/CFS should be suspected, if a patient has had all of the 4 key symptoms persisting for a minimum of 6 weeks. However, a diagnosis of ME/CFS can only be made when a patient has had all 4 key symptoms, persisting for a minimum of 3 months or more, and the symptoms should be:

• Of definite onset (i.e. not lifelong) but chronic.
• Not the result of ongoing exertion (or over-activity)
• Not the result of excessive working hours
• Not substantially relieved by rest
• Causing a substantial reduction in effectiveness of occupational, educational, social, or personal activities
• Not explained by another condition

Diagnosis:

In many cases, a diagnosis of ME/CFS can be made confidently in primary care. However, it is important to know that there is currently no diagnostic test for ME/CFS and it is recognised on clinical grounds alone, when all other causes for the debilitating fatigue and other symptoms have been excluded. In order to do this, it is recommended that people undergo thorough medical assessment by their GP first, including blood tests, prior to being assessed for ME/CFS. Please see the updated NICE guidelines (NG206) for a full list of suggested tests to be carried out prior to referral.

Be aware that the following symptoms may also be associated with, but are not exclusive to, ME/CFS:

• Orthostatic intolerance and autonomic dysfunction, including dizziness, palpitations, fainting, nausea on standing or sitting upright from a reclining position
• Temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very cold
• Neuromuscular symptoms, including twitching and myoclonic jerks
• Flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches
• Intolerance to alcohol, or to certain foods and chemicals
• Heightened sensory sensitivities, including to light, sound, touch, taste and smell
• Pain, including pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion.

Differential Diagnoses

The following conditions would Exclude a diagnosis of ME/CFS and should be screened prior to referral:

• Established medical disorders known to cause chronic fatigue. This is especially important in the elderly in whom cardiac, respiratory and neurological causes of fatigue can be frequently missed
• Psychosis e.g. schizophrenia, bipolar disorder
• Alcohol or substance abuse
• Eating disorders, anorexia, bulimia or severe obesity with a BMI greater than 40 or less than 18
  
• Adults with behaviour or conditions which prevent engagement with the service
• Exclude Fibromyalgia where Fibromyalgia is the primary diagnosis, or where pain dominates fatigue.
• Severe depressive illness with psychotic or melancholic features (but not anxiety states or mild to moderate depression)
• Somatisation disorder
• Possible dementia

• a medical assessment (including symptoms and history, comorbidities, overall physical and mental health)
• a physical examination
• an assessment of the impact of symptoms on psychological and social wellbeing
• investigations to exclude other diagnoses, for example (but not limited to):
  • urinalysis for protein, blood and glucose
  • full blood count
  • urea and electrolytes
  • liver function
  • thyroid function
  • erythrocyte sedimentation rate or plasma viscosity
  • C-reactive protein
  • calcium and phosphate
  • HbA1c
  • serum ferritin
  • coeliac screening
  • creatine kinase.
• Use clinical judgement to decide on additional investigations to exclude other diagnoses (for example, vitamin D, vitamin B12 and folate levels; serological tests if there is a history of infection; and 9am cortisol for adrenal insufficiency).

“In many cases, a diagnosis of ME/CFS can be made confidently in primary care.” I think we need to add some management advice.

Advice for people with suspected ME/CFS

When ME/CFS is suspected, give people personalised advice about managing their symptoms. Also advise them:

• not to use more energy than they perceive they have − they should manage their daily activity and not 'push through' their symptoms
• to rest and convalesce as needed (this might mean making changes to their daily routine, including work, school and other activities)
• to maintain a healthy balanced diet, with adequate fluid intake.

Explain to people with suspected ME/CFS that their diagnosis can only be confirmed after 3 months of persistent symptoms. Reassure them that they can return for a review before that if they develop new or worsened symptoms and ensure that they know who to contact for advice.

Referral Criteria

• Referrals may be returned to the referrer if not on the correct Referral form
• Referrals are accepted from GP's or Consultants only, following investigations outlined in the NICE guidelines.
• It is essential that referrals include information on the duration of fatigue, any precipitating factors and impact on functional ability. It is not possible to triage referrals effectively when this information is not provided. Therefore, it will be requested prior to accepting the referral.
• Symptoms have persisted for:
  • At least 3 months but not lifelong
  • Patients should be 18 or over to access the service
  • Debilitating, persistent or relapsing fatigue for at least 3 months but not lifelong, that is new or of definite onset. It is not the result of ongoing exertion and is not substantially alleviated by rest. Severe enough to cause a substantial reduction of previous levels of social, occupational, educational or personal activities.

The NICE guidelines state that it is essential that the 4 key symptoms are all present as stated in the Assessment section above.

Referrals submitted without this information may be returned.

Service Outline

• The service aims to provide a therapy led specialist rehabilitation for patients with Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) who are 18 and over, based on the NICE guidelines 2021.
• The ME/CFS Service for Adults is based at the Exeter Community Hospital. Assessment, follow up appointments and group interventions are held via telephone, video or in clinic. Due to limited resources the service cannot provide long term support or home visits.
• To provide a specialist service for patients with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) and support local clinicians in the continued management of the condition, where this proves appropriate.
• Primary care, social care/ employment/ housing or benefits services should continue to be involved whilst the patient is seen within the specialist service to ensure continuity of care and a seamless service upon discharge.
• The team consists of Occupational Therapists covering North, Mid, East Devon and Exeter with medical support from a Specialist Consultant at a monthly MDT.
• After discharge, a time limited (6 months) online support group run by a Social Prescriber, will be offered to all patients who have completed the online Theory into Practice online group led by the Occupational Therapists.

Contact Details for the service:

• Telephone Number: 01392 908631
• Address: ME/CFS Rehabilitation Service Office, Budlake, Exeter Community Hospital, Hospital Lane, Exeter EX1 3RB
• Email: rduh.mecfsservice@nhs.net
• This service is commissioned by the Healthcare Commissioning organisations covering NHS Devon and provided by the RDUH NHS Foundation Trust.

Referral Instructions

Refer using the e-Referral Service

• Speciality: General Medicine
• Clinic Type: General Medicine
• Service: DRSS-Eastern-Chronic Fatigue Syndrome\ME-Devon ICB- 15N

Referral Form

Chronic Fatigue/ME referral form - No merge fields

Chronic Fatigue/ME referral form - EMIS WEB

Chronic Fatigue/ME referral form - Systmone

Patient Information

Action for ME

ME Association

GP Information

NICE Guideline NG206

Evidence

Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. NICE clinical guidelines (NG206). October 2021.

Pathway Group

This guideline has been signed off on behalf of NHS Devon.

Publication date: January 2018

Updated: August 2023