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Mar 22 23 tweets 5 min read
In Australia in the 80s #MyalgicEncephalomyelitis (or 'Post-viral syndrome') was being investigated as a disease causing immune dysfunction.

MYSTERY ILLNESS MAY AFFLICT THOUSANDS

Sydney Morning Herald, 17 June 1987

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#MECFS

Thanks @ABrokenBattery for digging this up! Image
A disease of the immune system may be responsible for symptoms once attributed simply to hypochondria. PETER QUIDDINGTON reports
A STRANGE affliction of the human immune system - not unlike a mild form of AIDS is thought to affect thousands of people in NSW, though most people do not know what they suffer from. Nor, in most cases, do their doctors. There is no simple diagnostic test for the disease,
which is being named "post-viral syndrome", or myalgic encephalomyelitis.

The mystery illness has the medical community divided, and experts in the field argue that the majority of doctors would still question whether the complaint even exists.
In the last five years however, researchers in Australia and overseas have taken T-lymphocytes from patients (white blood cells involved in the immune response) and measured their performance.
Both the number of cells and the function of the remaining cells have proved to be reduced. This could account, say the researchers, for the "haywire" immune responses which can lead to a bizarre host of complaints.
Advanced techniques like nuclear-magnetic resonance spectroscopy have also detected abnormalities in muscle metabolism after exercise in people with the disease. According to a report in the British Journal of Infection,
the reason for the fatigue may be an excess of lactic acid in the muscle. The report also states that different viruses may be involved with the disease, particularly the Coxsackie-B virus.

Common symptoms are persistent flu-like symptoms, lethargy, muscle pain,
headaches and impaired concentration.

Victims have also been known to complain of disturbed balance, hearing, vision, sensation and sleep.
There are complaints of problems with the circulation, bladder, bowels and breathing along with reports of ringing in the ears, tingling in the toes and uncontrolled facial muscle spasms.
The disease has not been known to cause death, though it can be debilitating. Some doctors suggest that depression associated with it could conceivably lead to suicide, particularly in undiagnosed cases.

Part of the depression may be associated with the fact that victims
inevitably have problems convincing others they are in fact sick.

They are often labelled malingerers and hypochondriacs because of their general state and seemingly unconnected range of year. disorders, which may change and fluctuate by the month, the week and the day.
According to Dr Andrew Lloyd registrar in infectious diseases Sydney's Prince Henry Hospital who is carrying out research in the area, the awareness of post-viral syndrome should soon spread because of what has been a recent "explosion in the scientific validity" of the disease.
It is still, however, the "most undiagnosed disease" of our day.

Dr Lloyd said that it took an average of 18 months for the disease to be diagnosed in recorded cases, and victims had inevitably been on a roundabout of doctors and specialists.
He said that many people probably suffered from mild forms of the syndrome and recovered without ever seeking medical attention.

The disease was first reported in 1934, with an outbreak in Los Angeles.
There had been about 30 epidemics recorded around the world, including an outbreak in Sydney in 1976.

The disease has gone by a series of names, including Royal Free Disease, Iceland Disease and epidemic neuromyasthenia.
Those who suffer from it are mostly young adults, particularly females. Some experts argue that cases that persist longer than two years become chronic. Others involved in treating the disease say that recovery can occur at a later stage, though this is less likely.
There are about 400 known cases in NSW and a branch of the Myalgic Encephalomyelitis Society has been established to assist sufferers and promote awareness of the disease.

Dr Lloyd estimates that there are about 10 times more cases than are known in NSW.
Last year he began treating sufferers with massive doses of gamma globulin and has since been flooded with requests for help.

"We treat people with concentrated gamma globulin (antibodies in high doses) because this is known to be an immuno-regulator."
"The aim of the treatment is to try to knock the immune system back on course."

"We have treated about 30 patients. Five are cured and most of the remained appear to have improved. But we are not certain whether it is the gamma globulin
or the care and attention the patients receive in hospital that has helped."

Dr Lloyd is planning a series of double controlled tests, treating one set of patients with gamma globulin and another with injections of a placebo.
The results are expected to be known by the middle of next year.

The long-term aim of his research is to develop an effective treatment and a simple diagnostic test. He said doctors were trained to have at their disposal diagnostic tests.
The big problem until now has been that all the tests performed on people suffering post-viral syndrome have come up negative.

END OF ARTICLE

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