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ME = Myalgic Encephalomyelitis
CFIDS = Chronic Fatigue Immune Dysfunction Syndrome
FM = Fibromylagia
CFS = Chronic Fatigue Syndrome
Myalgic Encephalomyelitis, ME is not tiredness or extreme tiredness,
but a severe flu-like illness that is usually precipitated by a virus,
commonly glandular fever or Ross River fever in Queensland.
Symptoms patients may suffer include headaches, memory and concentration
problems, sore throat, muscle and joint pain, irritable bowel syndrome,
disturbed sleep, exhaustion after minor effort, food allergies/
sensitivities and sensitivity to bright light and noise.
ME is also known as Chronic Fatigue Syndrome,
Chronic Fatigue Immune Dysfunction Syndrome (mainly in the USA)
and Myalgic Encephalopathy (mainly in the UK).
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The correct terminology, Benign myalgic encephalomyelitis, ME has
been classified in the International Classification of Diseases (ICD)
as a neurological disorder since 1969, when it was included in ICD-8 at
Volume I: code 323: page 158 and in Volume II (the CodeIndex) on
page 173. (ICD-8 was approved in 1965 and published in 1969).
Benign myalgic encephalomyelitis ME was included in ICD-9
(1975) and is listed in Volume II on page 182. In ICD-10 (1992),
benign myalgic encephalomyelitis ME continues to be listed under
Disorders of the Nervous System at G93.3, with the term Syndrome,
Fatigue, Chronic, as one of the descriptive terms for the disorder.
Fibromyalgia (FM) (patients suffer very similar symptoms) is an
increasingly recognized chronic pain illness which is characterized
by widespread musculoskeletal aches, pain and stiffness, soft tissue
tenderness, general fatigue and sleep disturbances. The most common
sites of pain include the neck, back, shoulders, pelvic girdle and hands,
but any body part can be involved. Fibromyalgia patients experience a
range of symptoms of varying intensities that wax and wane over time.
Both illnesses may be severely disabling, with some patients being
largely bed bound. While many studies report higher levels of certain
physical abnormalities in ME/FM patients than in the healthy population,
there currently isn't a validated diagnostic test. Diagnosis is made on
the basis of symptom presentation
How many people have ME ?
There are no precise figures of how many people have ME. This is due to
the fact that many people may be unsure of what they have, many doctors
have hitherto not accepted that PWCs are ill and some PWCs simply 'drop
out' when they cannot get any medical help.
In May 2002, a Working Group formed under the auspices of the Royal
Australasian College of Physicians published a report that estimated from
the published literature that between 0.2% and 0.7% of the population has
ME/CFS. This equates to between about 36,000 and 126,000 Australians.
By way of comparison, about 22,000 Australians have been infected with HIV
and about 15,000 have multiple sclerosis.
Who gets ME ?
ME strikes people of all ages, races and socioeconomic backgrounds. Most
diagnosed cases fall into the 15 to 45 age group (at onset). Women appear
to be more likely to develop CFS, with some studies suggesting that up to
two thirds of all PWCs are women. A 1980's media description of CFS as
"yuppie flu" is completely inaccurate - it crosses all socioeconomic
Recovery is variable and unpredictable: some people may recover
completely, although it may take a number of months or years; in the
majority, recovery is only partial and typically follows a slow course of
variable improvement and relapse; a significant minority remain severely
affected and may require a great deal of practical and social support.
Continued deterioration is unusual in ME/CFS.
There is currently no accepted cure and no universally effective
treatment. Those treatments which have helped reduce particular symptoms
in some people have unfortunately proved ineffective or even
counterproductive in others. An early diagnosis together with adequate
rest during the acute phase and during any relapse appear to bring the
most significant improvement
No one deserves to get ME or FM and no one should have to continue to
endure it for weeks, months or years. Scientists and doctors are not
certain of what causes ME/FM nor do they have a completely effective
cure, despite they're being a vast array of potential treatments with
some evidence for their use. Too many patients spend thousands of
dollars on a fruitless quest for treatment. When something is found to
help, it is often only slightly helpful, and costs a large sum of money.
It is very important that we have as many doctors and researchers looking
at our illness, so that
1:cheap, effective treatments can be found/proved, and then properly
subsidised by Medicare,
2:all patients' current suffering be ended, and
3:the initial development of ME/FM be prevented along with relapses
amongst recovered patients.
At the current time, major projects into ME/CFS/FM are taking place at the
University of Newcastle, University of Adelaide, and Greenslopes
Hospital/University of Queensland. There are a number of smaller groups
with some interest in our illness, particularly in Brisbane and
None of these projects has government funding, and all slowly limp along
on mainly private donations, particularly from ME/CFS/FM Associations.
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