About Me
Chronic fatigue syndrome/M.E.
CFS can be debilitating
Chronic fatigue syndrome (CFS), also known as M.E., is a condition with a diverse range of symptoms but particularly characterised by profound muscle fatigue after physical exertion.
Some doctors have been sceptical as to whether ME/CFS exists as a real disease or is "all in the mind".However, this controversy should have been effectively ended by a report from the Chief Medical Officer for England in 2002, which concluded that ME/CFS is a genuine and disabling condition.CFS and ME are also classified by the World Health Organisation as neurological disorders. In 2004, the Department of Health announced £8.5 million of ring-fenced funding for new specialist services to deal with ME/CFS.Fifty such services are now in the process of opening or are being developed. And the Medical Research Council has recognised that further research into the illness is urgently required.Who gets it?It is estimated that between 0.2% and 0.4% of the population have ME/CFS. The illness affects all social classes, ethnic groups, and is twice as common in women.ME/CFS can occur at any age, even in children as young as seven. The commonest age of onset is between the early twenties and mid forties.How do I know I have ME/CFS?Chronic fatigue is an extremely common reason for people consulting their doctor but only a very small proportion will end up with a diagnosis of ME/CFS.The main features are an overwhelming feeling of fatigue that follows any form of physical exertion along with problems involving memory and concentration.ME/CFS should not be used as a diagnosis for people who just feel 'tired all the time'.Other common symptoms include:muscle pain and/or twitching
joint pain but without swelling or tenderness
on-going flu-like feelings
headaches which may be migrainous in character
problems with balance
unrefreshing sleep pattern
sore throats
enlarged glands
intolerance of temperatures extremes
alcohol intolerance
postural hypotension (low blood pressure)
sensitivity to bright light and loud noise
Depression, which is often related to the debilitating effects of ME/CFS and the social problems it creates, sometimes occurs as the illness progresses.A large number of other illnesses can cause ME/CFS-like symptoms.These include anaemia, coeliac disease, liver disease, lupus, low thyroid function, and multiple sclerosis.So the initial medical assessment must always include a wide range of blood tests to exclude other possible causes of persisting fatigue.ME/CFS can also overlap with conditions such as fibromyalgia (widespread pain in the muscles and joints) and irritable bowel syndrome.What causes it?Although the basic underlying cause remains uncertain, research suggests that ME/CFS is probably a three stage illness involving predisposing, precipitating and perpetuating factors.Predisposing factors include a genetic susceptibility, and there is evidence that ME/CFS is more common in some families.Precipitating factors include infections, particularly flu-like episodes. Immunisations and pesticide exposure also appear to trigger the illness in a small number of cases.Perpetuating factors involve hormonal, immunological and neurological abnormalities.These appear to triggered by the initiating infection.As a result there are changes in various hormones and brain chemical transmitters, as well as control mechanisms in the brain which regulate sleep, activity, temperature control, and blood pressure.How can ME/CFS be managed?Although there is no curative drug treatment at present, or one that affects the underlying disease process, a number of drugs are being assessed.These include Ampligen (an antiviral and immune system modulating drug), modafinil (which is normally used to treat narcolepsy - a daytime sleeping disorder) and low doses of hydrocortisone (because one of the hormonal abnormalities involves a reduced level of cortisol in the blood).Otherwise, drugs are reserved for the symptomatic relief of pain, sleep disturbance, and other distressing symptoms.For example, a low dose of a drug called amitriptyline taken shortly before bedtime can be very helpful for pain and sleep disturbance.But medication needs to be used with care as people with ME/CFS are often very sensitive to drugs, particularly those which act on the nervous system.People with ME/CFS report that the most helpful form of management involves a process known as pacing whereby levels of physical and mental activity are carefully balanced to reflect the stage and severity of the illness.The aim is find a level of physical and mental activity at which people feel comfortable, and then try to very gradually increase the levels of activity within day-to-day limitations.What about alternative treatments?With orthodox medicine failing to provide the answer to ME/CFS, many people turn to alternative and complementary therapies.Acupuncture, aromatherapy, herbal remedies, homeopathy, and massage are all very popular - although there is debate about their merits.Very few of these treatments have been subjected to proper clinical assessment - one exception being homeopathy where a recent clinical trial did show some minor benefits.Relaxation techniques are helpful to those where stress may be factor.Supplements and vitamins are also very popular - even though there is no evidence of any significant deficiencies.A recent report from researchers at the Hammersmith Hospital in London suggests that a supplement called EPA (eicosapentaenoic acid) may be of benefit.What is the prognosis?This is extremely variable.Most people will improve to some degree after the initial acute stage - although this often takes a considerable period of time and a return to complete normal health is unusual.Once the illness stabilises the majority follow a fluctuating course - which often extends into years rather than months - with periods of relative remission and relapse.Common causes of relapse include further infections, operations, and undue physical or mental stress.A small but significant minority - possibly around 25% - remain severely affected.It is now thought that having an early diagnosis, making appropriate adjustments to lifestyle, and obtaining sensible medical advice are all important factors in reducing the chances of more severe long term ill health in ME/CFS.