Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) and Long COVID-19 Pathway

Combined ME, CFS and Long COVID-19 Pathway

The Suffolk and North East Essex Integrated Care Board (SNEE ICB) are looking to provide a combined Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) with a Long Covid pathway for patients with suspected ME & CFS and Long Covid. This combined pathway will cover adults and children and young people transitioning into this adult specialist service from diagnosis or from age 16-17 and will also support the 25% severely affected to get the right care required to relieve pressure on primary care services and reduce unnecessary hospital admissions where clinically appropriate.

Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and Long Covid are multisystem medical conditions and patients may experience multiple symptoms, resulting in overall symptom burden which has a significant impact on activities of daily living and quality of life. They can:

• affect many systems in the body including the brain, muscles, digestive, immune and cardiac systems,
• affects children, young people and adults, whatever their background,
• 80% of those affected are women and it is believed that prevalence may be higher in ethnic minority groups,
• be the greatest cause of long-term sickness absence from school,
• affect everyone differently.

For some people symptoms still allow them to carry out some activities.

For others (about 25%) symptoms mean that they are unable to leave their home or their bed.

Diagnosis can be made after symptoms have been present for three months.

Full recovery is rare (less than 10%), but many improve, especially with early diagnosis and careful management and support.

Classified by the World Health Organisation (WHO) as a neurological condition and placed by WHO under disorders of the nervous system.

Symptoms include:

• Chronic, profound & disabling fatigue which does not improve with rest or sleep which can be triggered by physical, cognitive, emotional and social activities, and sensory overload.
• Post exertional malaise (PEM) after activity in which the worsening of symptoms is often delayed in onset by hours or days and can be disproportionate to the activity.
• Prolonged recovery time that may last hours, days, weeks or longer.
• Unrefreshing sleep/sleep disturbance.
• Cognitive difficulties “brain fog”.
• Pain (muscle, joint, nerve, headaches).
• Orthostatic intolerance, – difficulty in maintaining an upright position, especially when sitting and standing, affecting heart rate and blood pressure (for example POTS).
• Gastrointestinal problems.
• Sensitivities to light, noise, touch, medicines & chemicals.
• Allergies and intolerances.

The new combined service aims to provide early ME & CFS and/or Long Covid diagnosis for patients across SNEE ICS with a personalised care and support plan for ongoing management and signposting to appropriate services and will include the following:

• Provide a specialist integrated health service which includes but is not limited to an activity management and pacing programmes to patients who have ME & CFS and/or Long Covid, and have been referred to the service in accordance with the Referral Criteria.
• Provide a Multi-Disciplinary Team (MDT) specialist approach to confirm diagnosis of ME & CFS and/or Long Covid. The MDT will
  • make recommendations to the patient’s GP for drug treatments to manage symptoms,
  • provide onward referral to specialist services e.g. Rheumatology, Cardiology, Immunology, Gastroenterology, Respiratory, Dietetics, sleep clinic and chronic pain service.
• Recognise the specific needs for the severely affected living with ME & CFS and/or Long Covid detailed in their care and support plan.
• Provide risk assessments and reasonable adjustments and work with community services in an integrated way by providing advice and guidance when requested and/or virtual services where appropriate in consultation with the patient.
• Provide Assessment of patient’s significant impairments, sensitivities and specific needs if admitted into hospital and recorded in the care and support plan (hospital passport).
• Support patients in acquiring or re-acquiring skills and strategies through which the impact of their symptoms may be minimised, and function optimised in activities of daily living.
• Provide signposting to wellbeing services and ME & CFS and/or Long Covid specific counselling to help with the impact of symptoms. It is expected that listening to patients’ main concerns and acknowledging the reality of living with ME & CFS and/or Long Covid, will contribute to their overall wellbeing and can be captured in their care and support plan.
• Provide support for reasonable adjustments to allow patients to remain in work or education if their symptoms permit, as well as supporting possible leisure activities, particularly if employment is not an option.
• Provide support to ME & CFS and/or Long Covid patients with welfare benefit applications.
• Recognise and address the needs of all patients, their families, and their Carers within the context of their care and support plan.
• Develop self-management education information where ME & CFS and/or Long Covid is first suspected in primary care.

The Integrated Care Board long-term conditions team are seeking valuable input from patients and family carers. Patients and family carers have had their say in shaping the future combined services though a survey (closed on 19th November 2024), and through four focus groups. The results and impact of the focus groups will be published on this page soon. There will also be further opportunities for patients and family carers to feed into this programme.