All information is correct at time of printing and is subject to change without notice. The Devon Formulary and Referral Website is not in any way liable for the accuracy of any information printed and stored by users. For the most up-to-date information, please refer to the website.
Referral
Chronic Fatigue/Myalgic Encephalomyelitis - Cornwall
Scope
Cornwall and Isles of Scilly Adult and Children's Specialist Chronic fatigue/Myalgic Encephalomyelitis Service.
This service:
- Consider referral if all the following criteria are met:
- Patient registered with a GP in Cornwall & IOS area.
- Age over 16y can be referred direct to service
- Age below 16y must be referred to Paediatrician first
- All 4 major criteria*are present (see referral section below) and have persisted for a minimum of 6wks in adults (if aged over 16y) OR 4wks in children (if aged below 16y) OR re-occurrence of life-altering symptoms in previously known and diagnosed patient
- The person’s ability to engage in occupational, social or personal activities is significantly reduced from pre-illness levels
- History, examination and investigations don't suggest an alternative differential diagnosis
If missing significant amounts of time off work/school, consider early referral, documenting this in your referral letter.
General points:
- CFS/ME is a relatively common condition. It is estimated that there are over 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men.
- It comprises a wide range of symptoms including fatigue, malaise, headaches, sleep disturbances, difficulties with concentration and muscle pain
- It is characterised by debilitating fatigue that is unlike everyday fatigue and can be triggered by minimal activity and often follows a relapsing and remitting course
- Diagnosis is clinical with exclusion of a wide differential diagnosis
- Mildly affected patients might be managed in primary care – a close doctor-patient relationship is key
- Those moderately to severely affected need specialist input
- Management is multi-disciplinary
Out of scope
Please note the service do not accept referrals for:
- Patients aged below 16y must be under the care of a Paediatrician
- Benefits applications - refer to DIAL@disabilitycornwall.org.uk or 01736 79500
- Equipment only – consider patient self-referral to 0300 1234131
- Chronic widespread pain in absence of fatigue or other symptoms
- The service is currently not commissioned to see patients with fibromyalgic pain only OR fatigue associated with other medical conditions, e.g. MS/cancer
Investigations (within 3m of referral)
Do
- Urinalysis
- FBC PV CRP HBA1C LFT U&E BONE TFT CK
- Coeliac testing
- Ferritin (if aged below 25)
Don’t routinely check (unless clinically indicated)
- Ferritin (in adults)
- Vitamin B12, Folate
- Vitamin D
- 9am cortisol
- HBV HCV HIV EBV CMV
- TB
- Lyme disease
- oxoplasmosis
Advise patients:
- Not to use more energy than they perceive they have - they should manage their daily activity and not ‘push through’ their symptoms
- To avoid taking daytime naps
- To rest and convalesce as needed. In mild CFS/ME the emphasis is on encouraging continuation of regular work/school, but 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
Consider prescribing:
- Analgesia and anti-sickness as required
Referral Criteria
Consider referral if all the following criteria are met:
- Patient registered with a GP in Cornwall & IOS area.
- Age over 16y can be referred direct to service
- Age below 16y must be referred to Paediatrician first
- All 4 major criteria*are present (see below) and have persisted for a minimum of 6wks in adults (if aged over 16y) OR 4wks in children (if aged below 16y) OR re-occurrence of life-altering symptoms in previously known and diagnosed patient
- The person’s ability to engage in occupational, social or personal activities is significantly reduced from pre-illness levels
- History, examination and investigations don't suggest an alternative differential diagnosis
If missing significant amounts of time off work/school, consider early referral, documenting this in your referral letter.
Symptoms suggestive of CFS/ME
Consider CFS/ME if a patient has all 4 major criteria as described below:
- 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.
- 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 longer
- Unrefreshing sleep or sleep disturbance (or both), which may include:
- Feeling exhausted, feeling flu-like and stiff on walking
- Broken or shallow sleep, altered sleep pattern or hypersomnia
- 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 multi-tasking
Be aware that the following symptoms may be associated with, but are not exclusive to, ME/CFS:
- Orthostatic intolerance and autonomic dysfunction - dizziness, palpitations, fainting, nausea, on standing or sitting upright from a reclining position
- Temperature hypersensitivity - profuse sweating, chills, hot flushes, or feeling very cold
- Neuromuscular symptoms - twitching and myoclonic jerks
- Flu-like symptoms - sore throat, tender glands, nausea, chills or muscle aches
- Intolerance to alcohol, or to certain foods and chemicals
- Heightened sensory sensitivities - to light, sound, touch, taste and smell
- Pain - pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion
Referral Instructions
Refer using e-Referral Service.
- Specialty: General Medicine
- Clinic Type: General Medicine
- Service: DRSS-Western-General Med-Devon ICB-15N
Specialist Services available:
- Diagnostic opinion if diagnosis uncertain or complex co morbidities
- Medical assessment and medication management
- Occupational and education liaison.
- Evidence based therapeutic interventions, eg: graded activity management and/or thought reframing strategies, with approaches to managing activity, lifestyles, roles and responsibilities
- Sleep, vestibular, anxiety, cognitive, pain, diet and fatigue management strategies. as well as specific neurological and sensory integration-based rehabilitation.
- Psychological interventions for coping, adjustment and overcoming barriers to accessing treatment strategies.
- Virtual one to one, group work, local face to face clinics and some domiciliary therapy appointments as clinically indicated.
Main Department contacts:
Current team
Specialty Lead: Mel terry
Specialty Medic: Dr Tamsyn Richards
Psychologist: Dr Cristina Lopez-Chertudi
Specialist OTs: Sophie Bellman, Tamsin Stickland
Specialist Nurse: Sarah Dowrick
Contact number: 01872 252935
Service Email: rcht.cfsme@nhs.net
Patient information
- Local patient support groups
Evidence
Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. NICE clinical guidelines (NG206). October 2021.
Publication date: May 2016
Updated: December 2021
