What is ME-CFS?
Myalgic Encephalomyelitis-Chronic Fatigue Syndrome (ME-CFS) is a fluctuating condition which can produce an effect on a variety of body systems. It is characterised by symptoms of fatigue, pain and loss of endurance to normal activities, and associated with deterioration after exercise. There are estimated to be between 1696-3392 adults over 18 with ME-CFS in Lothian (reflecting an estimated prevalence of 0.2% to 0.4%). The experience of ME-CFS varies greatly between individuals and over time.
The clinical features (symptoms) of ME-CFS vary and can affect many body systems.
Symptoms are provoked by physical or mental exertion and can be very disabling. Post exertional malaise lasting for more than 24 hours is common and there is a substantial reduction in activity levels. The duration of this illness varies from person to person. Some people see significant improvements or recover in less than two years, whereas others have a series of relapses, or remain ill for many years. This can have an impact on the patient’s activities, relationships, mood and life in general.
There is no medical laboratory test currently available to detect ME-CFS. Diagnosis for ME-CFS is made by doctors assessing the person’s detailed medical history, recognising the typical symptom pattern of ME-CFS and using diagnostic tests to rule out other conditions. Some illnesses can have the same symptoms and it is important to make sure that there are no other health problems that should be treated more appropriately in other services. Research is continuing in to the causes and effective treatments.
Services for People with ME-CFS in Lothian
Many patients with prolonged unexplained fatigue (ME-CFS) go to their General Practitioner (GP). A Guideline for GPs has been developed to assist GPs to navigate their way through services to gain access and support.
The majority of patients with ME-CFS are monitored by their GPs but hospital specialists may also provide support.
Regional Infectious Diseases Unit (RIDU), Western General Hospital, can provide specific e-mail advice regarding ME-CFS management and further support to GPs.
The Regional Infectious Diseases Unit (RIDU) Clinics that advise on complex ME-CFS cases are held at the Western General Hospital. These clinics are run by clinicians with a specialist interest in ME-CFS. Dr David Wilks and Dr Mike Jones run these specialist clinics.
NHS Lothian Pilot ME-CFS Rehabilitation Service
The Pilot ME-CFS Rehabilitation Service offers appointments to patients on a Thursday and Friday at the Astley Ainslie Hospital (AAH). This is a multidisciplinary service. Patients are seen individually and many may see both a physiotherapist and a psychologist during the course of their therapy.
For more information about what the pilot MECFS rehabilitation service offers click here.
Who provides the ME-CFS Rehabilitation Service?
Ms Lynda McGuiness provides administrative support to the service
Ms Sheena Spence, Specialist Physiotherapist
Ms Samantha Arbuthnot, Specialist Physiotherapist
Dr. Sally McKenna, Chartered Counselling Psychologist
Ms. Sheena Muir, Acting General Manager provides managerial support for the service. Professional supervision to the psychology team is provided by Dr Caroline Cochrane, Consultant Clinical Psychologist, and Lead Pain Management and Physical Health Psychology Services.
How do I get referred to the Pilot ME-CFS Rehabilitation Service?
You need to be referred to the service by your general practitioner or a consultant at RIDU.
The referrer is asked to complete a checklist stating that all of the necessary checks and diagnostic tests have been carried out and a diagnosis of ME-CFS given. This is important because the pilot rehabilitation service is not a medical service.
How to contact the service
ME-CFS Pilot Rehabilitation Team
Department of Clinical Psychology
Astley Ainslie Hospital
133 Grange Loan
0131 537 9139 (Open Thursday and Friday)
Action for ME website :