Fact Sheet: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

 

Please note: This fact sheet originated in 2002. Some details may no longer be accurate or relevant.

 

The UK Chief Medical Officer has recently released a report on ME/CFS.1 The following is taken from a letter written to The Lancet in response to the report. The authors of this article have ‘opposing’ viewpoints on the illness, yet they have written it in an attempt to find common ground and a way forward.

So where is the centre ground? First, there is agreement with the report’s conclusion that the illness “is a relatively common clinical condition, which can cause profound, often prolonged, illness and disability, and can have a very substantial impact on the individual and family.” It is also agreed that it can affect both sexes, and a wide range of ages, including children.

The report makes plain that it will no longer be acceptable for clinicians to state that they do not “believe” in CFS/ME. The report is explicit: it states that “inaction… due to ignorance or denial of the condition is not excusable.”2

Facts

It is estimated that as many as 150 000 Australians have ME/CFS.

Costs the Australian Government – $416 million dollars per annum.

In the USA the National Institute of Health (NIH), Centers for Disease Control (CDC), Food and Drug Administration (FDA) and Social Security Administration (SSA), in America recognise ME/CFS as a serious, often disabling illness.

ME/CFS has been declared Number 1 Priority disease along with TB and AIDS by the Centre for Disease Control in USA.

It is marked by unrelenting exhaustion, muscle pain, cognitive disorders that patients call “brain fog,” and a myriad of other physical symptoms.

90% of patients have not been diagnosed and are not receiving proper medical care for their illness.

The severity of the illness varies with sufferers. Some sufferers have mild symptoms and others are bedridden.

Severe forms of ME/CFS can lead to paresis, seizures, intractable headache, cardiac irregularities and gastrointestinal malfunction with life-threatening complications – even death.

There is no diagnostic test for ME/CFS. Despite this, doctors can make a positive diagnosis based on the patient’s symptoms and history, and by excluding other conditions.

65% to 80% of people develop CFS suddenly (usually after developing an infection, or series of infections)

There is no known pharmacological or non-pharmacological cure for ME/CFS. ME/CFS affects almost every system of the body having neurological, gastrointestinal, cardiovascular and musculoskeletal features.

Pharmacological treatments are a way off – we are in desperate need for funding for research.

It is hard to be definitive about the duration of the illness. One study suggested the average length of the illness was 7.0 years. Recovery tends to be spontaneous – some get better after 1 to 2 years, others more slowly. Few people get 100% better – but with lifestyle changes many can lead a normal life, and on a relative basis would classify themselves as ‘recovered.’

Some researchers advocate Cognitive Behaviour Therapy (CBT) and GET (Graded Exercise Therapy) as the only ‘proven’ therapies for CFS. Consumer groups question a lot of this research – the selection criteria, the methodology and the extent to which conclusions can be generalised to the whole CFS population. This debate aside it is important to note that researchers advocating CBT and GET are not suggesting that CFS is ‘all in the mind’ nor to believe them to be curative treatments – this is not the way press releases are often interpreted.

There is no dispute that CFS is different from anxiety and depression.

Research has shown that ME/CFS is about twice times as common in women: a rate similar to that of many autoimmune diseases, such as multiple sclerosis and lupus.

Compounding people’s troubles is a social isolation caused by chronic illness; loss of capacity to earn an income and pain felt by others disbelief the reality of the illness.

The illness itself is poorly understood. Many believe ME/CFS is simply feeling a bit tired all the time – but it is much more than ‘chronic fatigue.’ People with ME/CFS suffer from profound exhaustion (mental and physical), which is not alleviated by rest, and can be severely exacerbated by only mild activity – this distinguishes it from ‘chronic fatigue’ and ‘depression.’ Furthermore, the symptoms are not just fatigue orientated as many patients suffer from muscle pain, low blood pressure and have difficulty with short-term memory and trouble thinking clearly.

Few studies of ME/CFS in children and adolescents have been published. It is well accepted that adolescents get CFS, although less frequently than adults. Similarly, the severely ill have rarely been studied – casting doubt on those who would try to apply research findings generally to all CFS sufferers.

A recent report has found CFS is a debilitating as MS, RA and lupus.

Many pathogens such as the various mycoplasmas, Lyme disease, and Q Fever have been implicated in the causation or propagation of CFS. Unfortunately, PCR testing facilities are not yet available in Adelaide. Yet even if they were, testing is still not 100% reliable – our technology is inadequate to cope with the new diseases of the 20th century.

ME/CFS is recognised by the World Health Organisation.

Canada has a government department specifically for CFS.

Many people still believe that people with ME/CFS are ‘malingerers’ and ‘fakes.’ Until this misconception is debunked, people with ME/CFS will always suffer misunderstanding and will battle to obtain the rights that others with equally debilitating conditions receive without question.

Well known people who are or have suffered CFS (or CFS-like illness) include:

Charles Darwin

Florence Nightingale

Andrew Lloyd Webber

The Duchess of Kent

Linley Frame (Australian Olympic swimmer)

Barry Sheen (World Champion motorcycle rider)

Totti Goldsmith (Australian media personality)

Johanna Griggs (Australian media personality and former Commonwealth Games swimmer)

Richie Richardson (former West Indies cricket captain)

Alistair Lynch (AFL footballer)

James McDonald (AFL footballer)

References

1A good summary can be found at http://www.research1st.com/2011/07/25/me-case-definition/.
2The Lancet, Volume 359, Number 9301 (January 12, 2002)
Christopher Clark, Dedra Buchwald, Anne MacIntyre, Michael Sharpe, Simon Wessely

 

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Reprinted from http://www.sacfs.asn.au/

Copyright ME/CFS Australia (SA) Inc