ME/Chronic Fatigue Syndrome

Overview

Chronic Fatigue Syndrome (CFS) is also known as ME, which stands for Myalgic Encephalomyelitis. It has been known in the NHS as CFS/ME until October 2021 when the publication of the NICE Guideline NG206 recommended a change in the name to ME/CFS. As a result of this change, the Bristol CFS/ME Service has been renamed as the Bristol M.E. Service.

The primary symptom is fatigue (exhaustion) lasting more than three months that affects physical and cognitive function and doesn't go away with sleep or rest. Additional features key to reaching a diagnosis are:

• a delayed worsening of symptoms following an increase in activity known as Post-Exertional Malaise (PEM)
• Unrefreshing and/or disturbed sleep
• Cognitive difficulties such as poor memory and concentration

ME/CFS is a serious condition that affects multiple body systems, and its pathophysiology is still being investigated. It can cause long-term illness and disability, but many people – particularly children and young people – improve over time.

ME/CFS in Children

For patients aged under 18 please see the Chronic Fatigue (ME/CFS) section under Children and Young People.

Fatigue caused by Long COVID

Patients with Long COVID should be referred initially to the Long COVID service rather than the ME/CFS service. Please see the Remedy page for details of this service and how to refer: Long COVID 

The Long COVID service can then refer appropriate patients on to the ME/CFS service if required.

Cancer Related Fatigue

Patients experiencing fatigue and other difficulties during or following treatment for cancer (and which is likely to be due to their cancer or it's treatment) are usually not suitable for the ME/CFS service and should be assessed within alternative pathways. See the Living With and Beyond Cancer (LWBC) page for links to resources:

LWBC Resources for GPs (Remedy BNSSG ICB)

Talking therapies (CBT) can be helpful for patients particularly if there is coexisting anxiety/ depression. See link to local NHS Talking Therapies.

Bristol M.E. Service

Clinician information

The M.E/C.F.S - For Clinicians page has information for clinicians on making a referral (also summarised in the section below).

Patient information

The Bristol M.E Service webpages have information for patients including advice on causes, therapies, FAQs and other useful resources for patients.

Contact details for the Bristol ME Service:
The Lodge
Cossham Hospital
Lodge Road
Bristol
BS15 1LF

Telephone: 0117 4145192

GPs can also send email queries to: BristolME@nbt.nhs.uk 

Referral - Bristol M.E. Service

Referral Criteria must be met

Please note that referrals for patients aged 18 and over must meet the BNSSG M.E./ CFS Referral Criteria as laid out in the following policy: 

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Referral for Adults Criteria Based Access Policy

Referrals should be submitted via e-RS on the revised ME/CFS Referral Form (embedded in EMIS via Resource Publisher).  The form now includes ALL the required bloods that were previously listed on the Investigation Checklist

You will need to provide further details about your patient's symptoms in the Referral Summary Section on page 2, including consultation notes, medications etc.  There is no need to attach a separate referral letter.  

Referrals that are incomplete will be returned by the Referral Service or the Bristol M.E service. 

Required blood tests - ICE panels

Severn Pathology (NBT) have introduced the blood panels required for ME/CFS referrals on ICE. These bloods should all be normal, unless an abnormality is explained. (Please note, only one inflammatory marker result is required i.e. CRP)

Please ensure that the required blood tests have been completed within the past year

• Full blood count
• C-reactive protein
• Urea and electrolytes including potassium
• Liver function tests
• Calcium
• Creatine kinase
• Thyroid function
• Coeliac screen (e.g. IgA endomysial or tissue transglutaminase autoantibodies)
• HbA1C or alternative blood glucose measure

Once a referral has been accepted the patient can be seen at Southmead Hospital or Cossham Hospital in Bristol.

Referral - RNHRD Bath

Referrals for Adult Chronic Fatigue Syndrome (patients aged 18 and over) are subject to a BNSSG Criteria Based Access policy. Referrals need to include the referral checklist (top section on symptoms only as blood tests are included on the referral form) alongside relevant letter and/or consultations, which evidence that the patient meets the access criteria of this service.

Referrals are made via e-RS using the Bath Centre for Fatigue Services referral form. Referrals need to confirm all bloods tests have been carried out within the last 12 months in accordance with NICE Guidelines and that the results do not indicate any other medically treatable cause for the patient’s enduring fatigue symptoms.

Please note that the blood test results required are different to those required for referral to NBT.

Follow up

CKS guidelines for ME/CFS gives advice on follow up of patients in primary care.

They suggest the following:

Offer adults with ME/CFS a review of their care and support plan in primary care at least once a year.

As part of the review, discuss with the person with ME/CFS (and their family or carers, as appropriate) and record as a minimum:

• their condition, including any changes in their illness and the impact of this
• symptoms, including whether they have experienced new symptoms
• self-management − ask about their energy management plan and (if relevant) their physical activity or exercise programme
• who is helping them and how they provide support
• psychological, emotional and social wellbeing
• any future plans − ask if the person is considering any changes or if they have any challenges ahead.

Refer the person with ME/CFS to their named contact in the ME/CFS specialist team if there are any new or deteriorating aspects of their condition.

Consider seeking advice from an appropriate specialist if there is uncertainty about interpreting signs and symptoms and whether a referral is needed.

Evaluate and investigate whether new symptoms, or a change in symptoms, are due to the person's ME/CFS or whether they are due to another condition.

Resources

(1) Tiredness/fatigue in adults | Health topics A to Z | CKS | NICE

(2) Guideline on the management of Post-Viral Fatigue.The British Association for Clinicians in ME (BACME) have published this guideline. This is also available in Arabic, Bengali, Italian, Polish and Somali via the same link. It has been written under the spotlight of Covid-19 due to the current international interest in viral induced fatigue, but as this is such a new condition that we still know little about, we have not specifically referenced it in the guide. However, it will be useful for anyone experiencing significant fatigue during and following Covid-19 infection.

Efforts are made to ensure the accuracy and agreement of these guidelines, including any content uploaded, referred to or linked to from the system. However, BNSSG ICB cannot guarantee this. This guidance does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer, in accordance with the mental capacity act, and informed by the summary of product characteristics of any drugs they are considering. Practitioners are required to perform their duties in accordance with the law and their regulators and nothing in this guidance should be interpreted in a way that would be inconsistent with compliance with those duties.

Information provided through Remedy is continually updated so please be aware any printed copies may quickly become out of date.