Information About ME/CFS
What is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?
ME/CFS is a potentially disabling and chronic condition affecting the central nervous system and immune system. There is no known single cause of ME/CFS, although for many it may be a viral trigger. Some sufferers may have a sudden onset, whilst for others it may be a slow and gradual process, with no easily identifiable trigger. ME/CFS can vary greatly in severity and duration.
Diagnosis of ME/CFS
There is no specific diagnostic test for ME/CFS. Patients should be assessed using an holistic approach, for it is only by taking a detailed history of the patient, identifying certain characteristic clinical features, and the investigation and elimination of other illnesses, can a diagnosis of ME/CFS be made. By the end of 6 months a diagnosis of ME/CFS should be confirmed for a patient presenting with these characteristic symptoms. ME/CFS is a complex illness and the list of symptoms can be extensive and profound in the more severe cases.
There is an urgent need for research into the aetiology (cause) of ME. Current research suggests that dysfunction of the central nervous system and the neuro-endocrine system, particularly the hypothalamic-pituitary-adrenal axis, with secondary immunological disturbance are involved in the pathogenesis (or development) of the condition. It may be in some cases that infection persists.
The complexity of the illness means that prognosis is equally difficult to predict. Some patients will make a slow and gradual progress over several years to a full recovery. The majority will make variable progress, with relapses, which may be severe and prolonged, but may reach 70-80% of their former function. Others remain severely disabled with little progress, needing help with their personal needs. A smaller percentage may deteriorate and be bed-bound for much of the time.
Is There A Cure For ME?
To date there is no known cure for ME/CFS. Treatments or medications which help some patients do not necessarily help or alleviate those symptoms for others. The patients who obtain a diagnosis of ME/CFS at an early stage of the illness, and then follow an appropriate management programme, resting during acute stages and relapses, using pacing activity and self-management are those who seem to make the most significant progress.
Awareness And Understanding Of ME/CFS
There are some examples of good clinical practice of ME/CFS, and these need to be encouraged. CMOs Working Group report (January 2002) acknowledges that more training and awareness of ME/CFS is needed for the medical profession, educationalists, employers, health and community services, along with the Department of Work and Pensions and insurance companies. A greater understanding of ME/CFS, and the establishment of good clinical practice and support services for ME/CFS sufferers would possibly help to prevent much of the chronic disability and suffering which so many ME/CFS sufferers have to endure. The Department of Health "endorses the view of the (CMOs) CFS/ME Independent Working Group that there should be no doubt this is a chronic illness and that health and social care professionals should recognise it as such."
ME/CFS is classified as a neurological illness by the World Health Organisation (ICD10:G93.3). ME/CFS is a potentially severe, disabling and chronic condition, affecting the central nervous system and the immune system, varying greatly in its severity and duration.
ME/CFS can be both sporadic and epidemic in form, has no known specific diagnostic test, and as yet there is still no known cure, nor is there a treatment which is helpful for everyone.
ME/CFS is still very misunderstood and often met with scepticism and disbelief by medics, other professionals and society in general. Despite its uncertain aetiology ME/CFS can no longer be dismissed as all in the mind, the Chief Medical Officer (CMO) of the UK in January 2002 said "We are in no doubt this is a real condition affecting real people" which is "debilitating and distressing".
ME/CFS although documented as an illness for centuries its incidence has increased considerably over the past 50 years.
ME/CFS has not been the subject matter of an accurate government funded community based demographic survey of the number of sufferers, but the CMOs report on ME/CFS (January 2002) estimates figures in the UK range from 120,000 - 240,000 (0.2 - 0.4% of the population), of which an estimated 25% of sufferers are severely affected. Dowsett/Colby study (1996) of school absence in UK showed a rate of 70/100,000 in pupils and 500/100,000 in staff.
ME/CFS affects all socio-economic groups, and all ages, with the peak incidence being 20-40 years, with a secondary peak at puberty. There appears to be a female predominance possibly linked with hormone levels There is evidence to suggest that the incidence of ME/CFS is increasing in all ages.
ME/CFS sufferers who obtain an early diagnosis, subsequent understanding, support, and appropriate individually tailored management, in partnership with their doctor, tend to be the ones who make the most significant progress.
Thanks to Dr E Dowsett MB, ChB, Dip. Bac and Dr T Mitchell MA, MD, FRC Path., Medical Advisors to BRAME for their advice in producing this leaflet and our patrons the Countess of Mar and Anthony D Wright MP.
© Tanya Harrison 2004