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Referral
ME/CFS Service (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) Torbay and South Devon NHS Foundation Trust
Key Messages
This guidance covers the referral criteria to the Torbay and South Devon NHS Foundation Trust ME/CFS Service. Referrals may be returned to the referrer if not completed fully.
This service covers Torbay and South Devon (Totnes and agreed Kingsbridge practices)
Specialist ME/CFS services are designed to provide an individualised, person-centred self-management/care and support plan, which aims to offer guidance on fatigue/energy management strategies, including other symptoms known in the condition that cause functional difficulties. The individual plan will support patient’s values-based goals for change, adapting daily activities, depending on the patient’s priorities. We support a self-regulating approach to the management of the condition within existing resources, grading up where appropriate and with a foundation of skills and techniques to support the process.
Our service is commissioned to provide the treatment strategies outlined in the NICE guidelines for this condition.
Service Outline
The treatment pathway is delivered as follows:
- Prior to assessment patients are asked to complete various self-assessment forms and watch an introductory video session with a manual ‘Overview of ME/CFS’ to accompany.
- On return of the paperwork a holistic assessment will be offered, this will be completed by a specialist Therapist, performed in clinic via a video call or if needed a face to face appointment in clinic.
- Following assessment, patients agree and are provided with an ‘Individual management plan’ which sets out the aims for any specialist therapeutic course(s) or 1:1 specialist therapy being offered or reasons for signposting to other services.
- Reviews and follow up appointments will be provided as laid out and agreed in the plan, until a mutually agreed discharge is made. A typical pathway takes 18 months to complete, with opportunities to test out change and apply theory of self-management strategies to daily life.
- If offered an online therapeutic course these are usually 4-6 sessions of approximately one-hour duration via video call. 1:1 therapy is also provided as agreed around the courses or bespoke to the individual, typically 6-8 sessions via video call. Some face to face is possible in particular circumstances.
- All input is supported by written resources, relevant to the treatment being provided.
- Ongoing support is not offered, however reviews at a later date can be helpful if the person requests. Self-referral back to the service following discharge is possible, where appropriate between 6-12 months. GP referral with reasons explained will be needed after 12 months, new bloods completed and updated medical assessment.
- If patients have severe ME/CFS and are bedbound or housebound, it is appropriate for their GP to refer them to Adult Social Care and/or Community Teams, with their agreement, as a care package and equipment may be required. We are able to liaise.
Out of scope
- Patients under the age of 18 years of age. We offer a transition therapeutic/educational course alongside the Paediatric ME/CFS service.
- Under 18 with more than 6 months until turning 18 will require referral to the Paediatric service.
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:
- 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 waking
- 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 multitasking.
ME/CFS should be suspected, if a patient has had all of the 4 key symptoms persisting for a minimum of 6 weeks (4 weeks in children). 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 completed fully
Referrals are accepted from GP's or Agreed Consultants only, following investigations outlined in the NICE guidelines.
It is essential that referrals include clear formulation to diagnosis and expectation for service input. Also, to 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.
Contact Details for the service:
Telephone Number: 01803 219859
Email: tsdft.mecfs@nhs.net
Address: Torbay & South Devon ME/CFS Service, 4th Floor, Union House, Union Street, Torquay. TQ1 3YA
This service is commissioned by the Healthcare Commissioning organisations covering NHS Devon and provided by the Torbay and South Devon NHS Foundation Trust.
Referral Instructions
Refer using the e-Referral Service
Speciality: General Medicine
Clinic Type: General Medicine
Service: DRSS-Torbay and South Devon-ME/Chronic Fatigue Syndrome-Devon ICB- 15N
Referral Form
ME/Chronic Fatigue referral form - No merge fields
Patient Information
GP Information
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: July 2023
