We are a specialist NHS service that seeks to meet the needs of people who have a diagnosis of Myalgic Encephalomyelitis (ME) also referred to as Chronic Fatigue Syndrome (CFS).
We offer an outpatient service throughout Suffolk and Norfolk. This is via face-to-face appointments, email and telephone and in a small number of cases, home visits.
What do we provide?
We provide assessment, diagnosis, management, advice, education and support for people who have a diagnosis of ME/CFS. The team comprises of GPs with specialist interest (GPwSI) and knowledge of ME/CFS and Specialist Occupational Therapists (OT) who are supported by administrative staff.
What is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?
The condition has been called by a variety of names including Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME) and Post-Viral Fatigue Syndrome (PVFS). We use the term ME/CFS.
The main symptom of ME/CFS is a feeling of unusual and excessive tiredness that is characteristically made much worse after any activity. The fatigue is usually both physical and mental. The fatigue would be of new onset rather than life long. It impacts on the person’s life to the extent that they have to cut down significantly on what they do day to day. This, together with other symptoms such as un-refreshing sleep, swollen lymph glands, new headaches, muscle and joint pain and others, are used as a basis for giving a diagnosis.
It is important that other medical conditions that can cause significant fatigue are excluded before the diagnosis of ME/CFS is made.
ME/CFS is different from a more short-lived fatigue that may occur after many common illnesses especially viral infections. A diagnosis of ME/CFS is only made by the service after a person has had the symptoms for at least six months as an adult or three months in children.
How is ME/CFS treated?
There is no specific single medical treatment for ME/CFS and, although many different treatments have been suggested, few have been thoroughly tested.
There is now good evidence for management strategies such as activity management, which enable people to control and improve their fatigue levels. This is done by addressing how energy is used and managing other factors which impact upon fatigue. Also it is useful to use strategies to control debilitating symptoms.
We believe in patients being central to the therapy process and we focus on supporting patients to apply strategies which they can use to help themselves. We seek to work with you to help you achieve improvement in your condition and establish and maintain a quality of life.
How can I access the service?
People need to be referred to the service by their GP or a hospital-based health professional involved in their care.
There is no test to tell whether someone has ME/CFS. Therefore, the diagnosis is largely dependent on the history of the symptoms and exclusion of other illnesses. We make sure that other illnesses have been excluded by the GP or other health professional involved in the patient’s care, which means individuals undergoing some routine investigations, usually blood tests, before first coming to the service.
When we receive the referral we will contact you. We send out a pre-clinic questionnaire for completion, and upon its return you will be offered an initial appointment with either a GPwSI or a Specialist OT.
Longer term support and follow up visits are available for those people diagnosed with ME/CFS. You will be allocated a Specialist OT with whom you will be able to arrange appointments at the locations listed below and/or via a method such a phone or email if this is more convenient for you.
Area Covered/Service delivery
The ME/CFS service covers the whole of Norfolk and Suffolk. If you are unsure if our service covers your area, please contact us.
The Suffolk and Norfolk ME/CFS Service is provided by East Coast Community Healthcare CIC. The service is currently based at Kirkley Mill and we run outpatient clinics at Great Yarmouth, Lowestoft, Reydon, Norwich, Aylsham, Kings Lynn and Stowmarket. If your first appointment is with one of our GPwSIs you will be asked to attend a clinic at either Great Yarmouth, Stowmarket or Norwich. Your follow up appointments will be at one of the above and can also be done via email and phone. The method of your follow up appointments will be something you can discuss with your specialist OT at your initial appointment.