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Referral
ME (Myalgic Encephalomyelitis) / Chronic Fatigue Syndrome - Cornwall
Scope
Cornwall and Isles of Scilly Adult and Children's Specialist Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Service.
Introduction
ME/CFS is a relatively common condition, estimated to affect over 250,000 people in England and Wales, with about 2.4 times as many women affected as men1. Typically, there is a viral event that pre-dates the development of a complex, chronic medical condition that affects multiple body systems. Diagnosis is clinical, and mildly affected patients might be managed in primary care where a close doctor-patient relationship is key.
Inclusion criteria
Patients aged 16 years and over, registered with a GP in CIOS, where all the following applies:
- All 4 major criteria are present, lasting a minimum of 6 weeks in adults (or 4 weeks in children*) OR re-occurrence of life-altering symptoms in a previously diagnosed patient.
- Significantly reduced ability to engage in occupational, social, or personal activities compared to pre-illness levels.
- History, examination, and investigations don’t suggest an alternative diagnosis.
*Children and young adults under the age of 16 years old must be referred to paediatrics first. They can only be referred to the ME/CFS service once they are under the care of a paediatrician.
If patient is a sole carer, or missing significant amounts of time off work or school, consider early referral and document clearly in the referral letter.
Exclusion criteria
- Fibromyalgia
- Red flag features, including:
- Fatigue associated with other medical conditions e.g. stroke, multiple sclerosis, cancer etc.
- Chronic widespread pain, in absence of fatigue or other symptoms
- Equipment only – consider patient self-referral to (0300) 1234 131
- Benefits applications – refer to DIAL@disabilitycornwall.org.uk
Required with/prior to referral, within 3 months of onset:
- Urinalysis
- Full blood count with differential count
- C-Reactive Protein (CRP)
- Biochemisty:
- Random blood glucose
- HbA1c
- Bone profile
- Urea and electrolytes
- Creatine kinase
- Thyroid function tests (and thyroid peroxidase antibodies if TFT abnormal)
- Liver function tests
- Coeliac testing
- Ferritin (if age below 25)
Don’t routinely test for (unless clinically indicated):
- Ferritin (in adults)
- Vitamin B12, Folate
- Vitamin D
- 9am cortisol
- Serological tests:
- HBV HCV HIV EBV CMV
- TB
- Lyme disease
- Toxoplasmosis
Once diagnosis of ME/CFS established or suspected:
- Provide patient information.
- Advise patients:
- not to use more energy than they perceive they have, by managing their daily activity and not “pushing through” their symptoms.
- to rest as needed initially, which might mean making changes to their daily routine, including work/school/home.
- to avoid daytime naps.
- to maintain a healthy, balanced diet and adequate fluid intake.
- Consider prescribing simple analgesia and anti-emetics as required for symptomatic relief.
Advice and Guidance
There is no formal Advice and Guidance service available.
MDT patient discussions are open to health professionals and can be requested via email: rcht.mecfs@nhs.net
Inclusion criteria
Patients aged 16 years and over, registered with a GP in CIOS, where all the following applies:
- All 4 major criteria are present, lasting a minimum of 6 weeks in adults (or 4 weeks in children*) OR re-occurrence of life-altering symptoms in a previously diagnosed patient.
- Significantly reduced ability to engage in occupational, social, or personal activities compared to pre-illness levels.
- History, examination, and investigations don’t suggest an alternative diagnosis.
*Children and young adults under the age of 16 years old must be referred to paediatrics first. They can only be referred to the ME/CFS service once they are under the care of a paediatrician.
If patient is a sole carer, or missing significant amounts of time off work or school, consider early referral and document clearly in the referral letter.
Exclusion criteria
- Fibromyalgia
- Red flag features, including:
- Fatigue associated with other medical conditions e.g. stroke, multiple sclerosis, cancer etc.
- Chronic widespread pain, in absence of fatigue or other symptoms
- Equipment only – consider patient self-referral to (0300) 1234 131
- Benefits applications – refer to DIAL@disabilitycornwall.org.uk
Advice and Guidance
There is no formal Advice and Guidance service available.
MDT patient discussions are open to health professionals and can be requested via email: rcht.mecfs@nhs.net
Referral Instructions
Refer using e-Referral Service.
- Specialty: General Medicine
- Clinic Type: General Medicine
- Service: DRSS-Western-General Med-Devon ICB-15N
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
For professionals:
NICE [NG206] – ME/CFS: diagnosis and management
For patients:
NICE [NG206] – ME/CFS, Information for the public
NHS – ME/CFS
References
1. NICE [NG206]: Myalgic encephalomyelitis (or encephalopathy) / chronic fatigue syndrome: diagnosis and management, published 29 October 2021
Patient information
- Local patient support groups
Review date 10 May 2024
Next review date 10 May 2026
GP speciality lead Dr Laura Vines
Contributors Carol Wilson, Speciality Lead
Dr Dmitry Pshezhetskiy, Speciality Doctor
