On the 27th of February, 1999, the Alison Hunter Memorial Foundation held a Public Information Day on ME/CFS.

The Conference was opened by the State Opposition Spokesperson for Health, Jillian Skinner, who spoke of the need for widespread recognition of the seriousness of CFS among the public and medical community and the need for more access to sophisticated testing. Spokesperson Skinner congratulated Chris Hunter and Annette Leggo on their professionalism, and on the eminence of the conference speakers. She thanked the speakers for participating, and pledged to continue to work for CFS sufferers if elected in the coming state election.

Professor Tim Roberts of the University of Newcastle gave an introductory speech describing the previous two days of conferences and round table discussions among the speakers and doctors. On Thursday, during a special invitation-only conference for doctors, scientists and health administrators, the topics RNase L, stealth viruses, bacteria and channelopathy were discussed. There was agreement that the umbrella term 'CFS' appears to cover a number of subgroups, each of which is typified by it's most prominent symptoms. On Friday, a the doctor's conference, it was felt that treatment of PWCs has progressed since the first conference of its kind was held last year. Thanks to these conferences, researchers and General Practitioners are collaborating. There is interest in producing a consensus statement on CFS.

Professor Garth Nicolson was the first speaker. He became involved with CFS research when his step-daughter returned from the Gulf War with Gulf War Illness/Syndrome, which he subsequently discovered to be caused by mycoplasma infection. The similarity of symptoms between GWI/S and CFS led him to investigate the incidence of mycoplasma infection in PWCs, and multiple test groups showed between 40% and 70% of PWCs have mycoplasma infections.
Mycoplasma are a sub-class of bacteria. They can enter cells, specifically white blood cells, evading the immune system's defences, and when they exit cells they damage the membrane, which produces auto-immune-like symptoms (the kind of symptoms that lead to some cases of CFS seeming like Multiple Sclerosis, for example).
Infectious diseases like mycoplasma may be responsible for many illnesses, such as respiratory ailments (e.g. asthma), rheumatoid arthritis, cardiac diseases, auto-immune diseases (e.g. Multiple Sclerosis) and immunosuppressive diseases (e.g. AIDS).
The treatment Professor Nicolson has designed for mycoplasma infection involves 6 cycles of different antibiotics. He also recommends a diet with adequate fruit and vegetables and low in refined sugars and fats. Some patients find benefits from vitamins B, C, and E; CoEnzyme Q10; and the minerals zinc, chromium, magnesium and selenium.
More information on Professor Nicolson's research and treatment regime can be found at his web site, www.immed.org.

Professor Kenny de Meirleir was the second speaker. He and has been studying 25A Dependent RNase, an anti-viral pathway that produces a low molecular weight enzyme unique to CFS sufferers.
There is a correlation between the levels of this low molecular weight enzyme (hereafter LMW enzyme) and the severity of CFS symptoms; during 'crashes', the normal high molecular weight enzyme disappeared from test subjects altogether, while the LMW enzyme proliferated. It is therefore implicated in the disease process because it becomes more active during illness.       Ampligen is the drug being tested for the treatment of CFS by Dr de Meirleir. Ampligen causes the level of the LMW enzyme to drop. He and his team have found that patients respond well to the treatment, that it has no serious side effects and that the patient's rating on the Karnofsky score increases by 10 to 30 points. (The Karnofsky score is a method of measuring quality of life). The patients experienced reduced cognitive impairment, better day-to-day functioning and had improvement in bicycle exercise testing done in the lab.
In follow-up studies, it was found that 2 to 4 years after Ampligen treatment 8% of patients had relapsed. The remainder continued to fare as well as they had done on the Ampligen treatment.

Simon Molesworth, QC was the third speaker. His galvanising speech encouraged all CFS sufferers to become politically active, pointing out that there are more CFS sufferers in Australia than there are members of environmental groups. The rise in the influence of, and respect for, environmental groups can be paralleled by the CFS community. Mr Molesworth's son has CFS, and he sees the greatest concern to be the lack of credibility given to sufferers, researchers and the illness itself. It is vital politicians be made aware of the number of CFS sufferers in Australia, and the seriousness of their illness.
He stated that it is reprehensible that the primary approach to CFS in this country is psychiatric. From a legal point of view, he explained that if Cognitive Behavioural Therapy, whilst appropriate in some cases, is used as a primary treatment and thereby causes vital physiological treatment to be neglected, it is malfeasance; that is, unlawfully doing harm.
Mr Molesworth encouraged the creation of a CFS database recording the names of as many sufferers in the country as possible. This database would be useful for at least two reasons; first, it could document treatments many patients have found effective, and secondly, it would provide campaigners with definite data on how many PWCs there are.

Dr Michael King, a psychologist, spoke fourth. He sees CFS patients in his practice, and emphasises that he does not believe the illness to be mental in origin. He makes it clear he cannot cure the disease, and can only support the patient during their illness. He believes "psycho-whatsits" have no place in the treatment of the disease CFS.
Dr King encouraged the audience to firmly reject any suggestion on the part of General Practitioners that CFS might be due to a neurosis. He pointed out that the cognitive difficulties so common in CFS are one clear indication that CFS is undoubtedly not depression. He also commented that cognitive difficulties appear to stay largely constant during the course of CFS, and that even when patients are having good days energy-wise, often their cognitive impairment remains as bad as when they are feeling exhausted. These impairments interfere massively with every day functioning and make life particularly difficult for students, who are asked to absorb so much new information on a regular basis.
Dr King spoke about a recent government task force inquiring into youth suicide. One subject of the study was a young man who suicided after a long battle with CFS; however the report ignored his illness utterly and instead decided his death was due to (probably nonexistent) psychological problems. Dr King believes the most effective way to lessen or eliminate depression and suicidal feelings in CFS is proper diagnosis by General Practitioners.

The fifth speaker was Dr Abhijit Chaudhuri, who works with Professor Peter Behan in Scotland. They are looking for the biochemical mechanism that produces the fluctuating symptoms of PWCs. It is Dr Chaudhuri's opinion that there may be more than one factor leading to the development of CFS in a patient (such as different viruses, chemical exposures and so on) but that the final disease process is the same for all patients.
Dr Chaudhuri described the way the membrane of excitable tissue, (i.e. the brain, heart, muscles and nerves) has an 'ionic equilibrium'. This equilibrium alters when activity occurs. In PWCs, the equilibrium is upset, and the body wastes energy attempting to restore the balance. Therefore less energy is left over for normal physical activity. The biochemical process that is behaving incorrectly in PWCs is the transfer of sodium among cells. The channels that facilitate this transfer are blocked. Symptoms such as hot and cold hands and feet, and temperature sensitivity, are a result of these blocked channels. The cause of the blocked sodium channels is not certain.
Dr Chaudhuri emphasised that CFS is a genuine illness, and one that is causing widespread economic problems as a result of the many formerly able people who are now chronically ill. Dr Chaudhuri pointed out that the high numbers of PWCs who cannot tolerate anti-depressant medication is evidence that CFS is not depression.
Dr Chaudhuri made the interesting point that ion channel disruption occurs in both CFS and Multiple Sclerosis, and the fatigue is also a significant symptom of MS. He suggests therefore that the two conditions might be related.

Mr John Berrill, a solicitor, was the sixth speaker. He spoke about the trouble PWCs have accessing disability payments from superannuation funds and insurance policies. The criteria for most policies states that you are disabled if you cannot do your job 'as a whole'; that is, you do not have to be utterly incapacitated to qualified as 'disabled'. Rather, you have to be unable to complete all aspects of your job. Therefore, it is not the case that if you can do any activity at all, however brief, you do not qualify.
To qualify for the 'total and permanent' disability classification, you must be unfit to do your usual job, or any other job that would be applicable to your training and experience.
Mr Berrill acknowledged that often negotiations for disability pay-outs are are protracted and difficult; however, despite the fighting required, many claims for disability payments for PWCs have been successful. He told the audience that it is important they investigate what provisions their insurance or superannuation policies have for disability as they have a right to claim them.

The seventh speaker was Professor John Martin. The theme of his work is atypically structured viruses, called 'stealth viruses' because they evade the immune system. Professor Martin would like to see the medical research focus broadened, to include illnesses such as Autism in the same group as CFS, all of which can be called encephalopathies.
Portions of the stealth virus are similar to cytomegaloviruses (CMVs). However, these portions are more closely related to the CMV of African Green Monkeys than they are to human CMV, leading researchers to suspect the monkey CMV entered the human population through Polio vaccinations.
Professor Martin emphasised the need for action regarding the diseases CFS, ADD, and MCS, and suggested the multiple labels can confuse the matter. There have been epidemics of these illnesses in the US and elsewhere, meaning these illnesses are serious concerns for public health.
Professor Martin's organisation, the Centre for Complex Infectious Diseases, has a website at www.ccid.org.

Dr Neil McGregor was the eighth speaker. He spoke about the pain and CFS. Ordinarily, the experience of pain begins with initial, sharp pain, followed by dull pain. This second type of pain is designed to prevent the sufferer further damaging a wounded or sore area. However, in PWCs, it would seem the second phase dull pain is worse, and is not being 'turned off' correctly. Tests on PWCs have shown greater amino acid secretion during pain, and increased pain is correlated with liver enzyme changes.
Dr McGregor has found the best indication of CFS is the levels of RNase-L in white blood cells, which indicates viral activity. "A post-viral condition associated with increased RNase-L activity occurs in CFS patients which predisposes them to other infectious events." Dr McGregor feels that mycoplasma, for example, is a secondary infection in the case of people with virally-induced CFS, and that treating it will not cure the cause of the overall condition.

After lunch, Mr Ted Shaw delivered a thought-provoking and disturbing speech about the treatment of one young PWC in Queensland, and the psychiatric profession's general attitude to CFS.
Mr Shaw described how a teenage girl who became sick with CFS in 1996 was, after profound illness and two admissions to hospital, moved to a psychiatric ward after a hospital doctor declared no physical abnormalities could be found. In the psychiatric ward, the young patient received so little understanding or opportunities to rest and cope with her illness that her mother removed her from sheer desperation. However, the psychiatrist enacted state legislation and successfully had the child removed from the care of her mother, and she is now a ward of the state. Her treating psychiatrist has misdiagnosed her as having multiple psychiatric disorders.
Mr Shaw described the widespread opinion in the psychiatric community that CFS is 'abnormal illness behaviour', Munchausen's Syndrome By Proxy, and other erroneous psychological labels. There are moves by a leading Australian doctor to have fatigue recognised as the 'third arm' of psychological disorders, along with depression and anxiety. Clearly, having fatigue rated as a primarily psychological and not physical symptom will see sufferers of CFS as well as a number of other diseases treated with primarily psychological methods. PWCs in Australia, and in a number of other countries, are caught in the cross-fire of insurance companies, government, drug companies and psychiatrists, all of whom have an agenda not allied to the patient interest.
The complete text of Mr Shaw's speech can be found at the Alison Hunter Memorial Foundation web site.

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