NHS Lothian does not offer a specific diagnostic service for Myalgic Encephalomyelitis – Chronic Fatigue Syndrome (ME-CFS). However, once a diagnosis is made the patient can be referred to multidisciplinary non-medical rehabilitation services where fatigue is the dominant symptom. Patients with pain symptoms predominating may benefit from the chronic pain service.
If the primary care clinician feels unable to secure a diagnosis, and particularly if there are concerns about alternative diagnoses, specialist referral should be considered.
The Scottish Good Practice Statement on ME-CFS refers to the NICE guidance but adapts its recommendations. It is a ‘living’ document, with ongoing updates and provides guidance to support the diagnosis and management of ME-CFS in primary care. All the guidance on these pages relates to the Scottish guidance and to adults only.
Background
ME-CFS is a condition characterised by persistent and fluctuating symptoms of fatigue, pain and loss of endurance to normal activities associated with conspicuous deterioration after exercise. It is commoner in women, and in the age group 35-55.
The WHO categorises ME-CFS as a neurological disease: there are no internationally-recognised standard diagnostic criteria but the Scottish guidance favours pragmatic use of the Canadian Consensus definition. The prognosis is extremely variable, with symptoms lasting months to decades, and some have a relapsing / remitting course. The onset may be sudden or gradual and can be precipitated by a viral illness. Approaches to care should be holistic, involve shared decision making and explicit discussion of the diagnosis, with realistic information about what to expect and links to other support. The Scottish Good Practice Statement outlines other approaches to management including of specific symptoms, rehabilitation, welfare benefits and carer support. Please see Primary Care Management for further detail, including the RefHelp summary of the Scottish Good Practice Statement on management of ME-CFS following diagnosis
Diagnosis:
- is key to further management, including acceptance, adaptation and lifestyle change;
- is clinical, as with many neurological conditions, relying on symptom recognition rather than specific diagnostic tests;
- made early and accurately is beneficial, aiming for a provisional diagnosis within 3-4 months of illness wherever possible, and ME-CFS considered as a differential diagnosis 6 weeks from onset of abnormal fatigue;
- can not be formally confirmed until the patient has had 6 months of symptoms
- should not delay approaches to symptom alleviation, which can take place alongside.
Most patients can have a diagnosis made without referral to a specialist service, according to the principles and guidance outlined in the Primary Care Management section.
Where there are specific symptoms that require further specialist investigation, the following may be useful, and are considered ‘red flags’ in the diagnostic process:
- Joint swelling, particularly with unusual rashes – Rheumatology
- Possible sleep apnoea – Respiratory
- ‘Hard’ neurological signs – Neurology
- Severe postural hypotension:
- Cardiology (please also see PoTS)
- Endocrinology, if adrenal insufficiency is suspected
- Weight loss – Suspected malignancy with no obvious primary
- Where there are clear indicators of an infective aetiology (eg fever of unknown origin or suggestive ongoing symptoms such as night sweats, weight loss and lymphadenopathy) – Infectious Diseases. Please also see exclusions below in ‘who not to refer’.
The RefHelp General Medicine page gives an outline of referral pathways for a range of non-specific symptoms.
Again if the primary care clinician feels unable to secure a diagnosis, and particularly if there are concerns about alternative diagnoses, specialist referral should be considered.
This page has been updated without specialty input by C.M, Referrals Advisor April 2024
Who to refer:
- Patients with a clear diagnosis of ME-CFS confirmed, where a rehabilitative approach to fatigue is appropriate – please see ME-CFS Rehabilitation Service.
- Referral to other specialties where there are other concerns (see above).
Who not to refer:
Patients should not be referred:
- To discuss possible causations e.g. candida, rare and fastidious bacteria, environmental toxins etc.
- To discuss the results of unconventional tests carried out in the private sector.
- To request unconventional treatments not recommended within the NHS.
How to refer:
For rehabilitation approaches to fatigue, please see ME-CFS Rehabilitation Service.
Referral to other specialties is via the usual SCI Gateway pathways.
This guidance is based on the Scottish Good Practice Statement on ME-CFS but the recommended list of investigations has been adapted for Lothian following discussion with PLIG clinicians.
The investigating clinician should undertake the following:
- A full history and a physical examination to exclude alternative diagnoses and to elicit characteristic features of ME-CFS. This needs to include a neurological and mental health assessment, and looking for signs of abnormal pigmentation, rashes or arthritis suggestive of systemic inflammatory disease, underlying cardiac or respiratory disease, lymphadenopathy, organomegaly or weight loss. The possibility of cancer should always be considered.
- Patients may have multiple symptoms (itself sometimes suggestive of the diagnosis) so useful to make a list of these, which also helps guide management.
- Examination should include erect and supine blood pressure and pulse rate (to exclude significant postural hypotension which can resemble some of the symptoms of ME‐CFS or be suggestive of hypoadrenalism). An increase in heart rate of over 30 bpm on standing may suggest Postural Tachycardia Syndrome (PoTS), a recognised co-morbid condition of ME-CFS. There may be other autonomic manifestations
As a minimum, all patients should have the following investigations to exclude alternative diagnoses:
- FBC, U&Es and creatinine, LFTs (including albumin), TFTs, glucose (random),
ESR, C reactive protein, calcium, creatinine kinase, ferritin, HIV, HCV,HBV serology, urinalysis.
In addition to the above, Lothian guidance is to also consider:
- Coeliac screen
- HIV, HCV and HBV serology
- Please also see the full Lothian guidance on investigations for ME-CFS.
- A differential diagnosis of fibromyalgia may also need to be considered, and some consider this an ‘overlap’ syndrome.
- FBC, U&Es and creatinine, LFTs (including albumin), TFTs, glucose (random),
ESR, C reactive protein, calcium, creatinine kinase, ferritin, HIV, HCV,HBV serology, urinalysis.
If the primary care clinician feels unable to secure a diagnosis, and particularly if there are concerns about alternative diagnoses, specialist referral should be considered.
Other investigations
These may be indicated depending on specific patient or clinical circumstances. When indicated by history or examination the following blood tests should also be considered:
- Abnormal LFTs: AMA, CMV IgG and IgM. EBV serology, HIV, Hepatitis B+C (and see Liver and Biliary for more detail)
- Weight loss or GI upset: coeliac serology, HIV serology
- Cardiological symptoms: ECG
- Lymphadenopathy: HIV, EBV, CMV, toxoplasmosis, syphilis (and see lymphadenopathy)
- Lyme serology where there are specific indications.
The following investigations are not currently indicated:
Laboratory tests:
- Vitamin B12 & folate (where normal FBC)
- Candida albicans
- Fibrinogen
- Lactate dehydrogenase
- Mitochondrial testing
- Platelet activation
- Protein electrophoresis
- Prothrombin fragment 1&2
- Soluble fibre monomer
- Thrombin-antithrombin complexes
- Xenotropic murine leukaemia virus-related virus (XMRV) serology
Other:
- MRI brain scan (in the absence of objective neurological signs)
- PET imaging
- SPECT imaging
- Tilt-table testing (in the absence of unexplained syncope or other clinical indications)
- Auditory brainstem responses
- Electroencephalography (EEG)
- electrodermal activity
Management Principles.
Please see the RefHelp summary of the Scottish Good Practice Statement on management of ME-CFS following diagnosis.
Scottish Good Practice Statement on ME-CFS
Investigations-for-ME-CFS-Aug-2023.pdf
https://apps.nhslothian.scot/files/sites/2/ME-CFS-Post-Diagnosis-Management-Summary-May-2024.pdf
For patients with fatigue following a viral illness (including Covid-19):
