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ME/CFS/FM Conference Tweed Heads

With a few helpers and little funding the 'Lismore' Northern Rivers ME/CFS/FM Support Association Inc organised the M.E/CFS/FM Conference at the  Seagulls Rugby League Club Saturday 2nd March 1996.

The Conference was an enormous undertaking for the Northern Rivers ME/CFS/FM Support Association to arrange, as Merle was a consumer on the pain management committee of the Royal North Shore Hospital in Sydney at this time, a diverse range of speakers with a current pool of knowledge of ME/CFS/FM came together, approximately 200 people attended to hear a very interesting programme presented by 8 distinguished speakers, three from Adelaide, two from Sydney, one from New Zealand, one from Newcastle and one from Lismore.

One very significant development from this gathering was the calling for the formation of a National rural ME Health Network, which would be a Member Body of the National Rural Health Alliance inc & it was unanimously agreed that Merle should co - ordinate the formation of a steering committee, to develop this. Unfortunately this never happened,

This was the first time a ME/CFS/FM conference was held on the Gold Coast bringing people up-to-date with latest research on management of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and Fibromyalgia

MYALGIC CHRONIC FATIGUE SYNDROME (CFS) FIBROMYALGIA (FM) ...and associated illnesses

At the time; this conference included vital new information on diagnosis, treatment and management of ME./CFS/FM, presented by the following distinguished medical researchers:

Dr..Ian Buttfield MB,. BS,. FRACP,. FRACWIA. Adelaide Specialist in chronic illness and M.E/CFS treatment - Adelaide

He was also the main instigator of this conference. He explained how the health system is designed to treat acute (meaning short term) illness rather than chronic illness. People with M.E/CFS typically don't look sick and are expected to continue with normal social obligations. In reality they are poorly understood and usually work too hard to seek help without much success. He emphasised that while there is still no care for M.E/CFS, the health care can help significantly by offering support, understanding, education, contacts and a range of treatments which can usually improve the condition. Dr Buttfield was keen to see us begin fundraising and publicising M.E/CFS on a national level.

Dr L.O. Simpson PhD~ Otago University, Dunedin, New Zealand. Research into the role of nondiscocytic red blood ceils in the pathogenesis of ME/CFS -Dept or Medicine, Otago University, Dunedin, New.Zealand. Dr Les Simpson provided an excellent account of his work with ME sufferers over the past 11 years, including results of his Red Blood Cell Shape Analysis, showing consistent abnormalities in many hundreds of patients in 5 different countries. Using his special fixative, red cells are transfixed immediately, retaining the shape they were in the blood stream,  the sample is prepared, then processed through the scanning electron microscope. Abnormally shaped red cells are stiff and impair blood flow, also determined by capillary diameter. This causes oxygen lack and tissue exhaustion. 

He outlined several years of blood filtration studies, showing how the "normal" doughnut shape of red blood cells (as seen under a light microscope) can be distorted into several non-standard shapes, which appear more frequently in samples from patients with M.E/CFS, MC and various other diseases. His trigger finger fatigue experiments had shown how the cell shapes could change within minutes, consistent with the typical M.E/CFS experience of symptoms often fluctuating suddenly. Cells with altered shapes were less flexible and therefore had more difficulty passing through the extremely fine capillary system. People with M.E/CFS may also have smaller diameter capillaries which would be another reason for reduced blood flow- and therefore reduced oxygen.

Dr Hugh Dunstan, DPhil  Senior lecturer and researcher into chemicals and' M'E/CFS, microbiology and biochemistry, Collaborative. Pain Research Unit, Newcastle University. (Collaborative Pain Research Unit- Newcastle) He emphasised how complex the nature of M.E/CFS requires careful observation and comparisons. He reported some findings of his group, on the apparent significance of the metabolite CFSUMI found to be higher in the urine of M.E/CFS patients. He discussed their investigation into hydrocarbons and M.E/CFS.

Dr Robert Weatherby  Senior lecturer, biochemistry/microbiology, sports science and human body movement, Southern Cross University Lismore. Function of the nervous system, muscles, energy requirements and oxygen transport.  he gave a plain language talk to assist those present to better understand the information from the following speakers. He showed how nerve cells transmit messages to and from muscles, and how blood cells play a vital part in bringing oxygen to power this process. Without oxygen, an essential chemical called ATP is only produced in small amounts, and there is a build up of lactic acid, causing the experience of fatigue. This can happen naturally, for example when an athlete works hard enough that the bloodstream can no longer keep up with the oxygen demand. However in ME/CFS, it appears to happen because the oxygen supply from the red blood cells is limited for other reasons.

Dr Mark Donohoe MB BS  President, Australian Complementary Medicine Association, Sydney. Explained the difficulty doctors typically experienced when M.E/CFS patients undertake a batch of tests without definitive results. They put us in the 'too hard' basket, and wish we'd go away! He designed a simple flow chart from which doctors could fill out in a few minutes as they interviewed the patient. The symptomatic diagnosis is based on the CDC (USA) definition of M.E/CFS. He felt that we should be aiming to fund research which looked likely to achieve outcomes for people with M.E/CFS, such as clear improvements in symptoms, or the ability to return to work. In this regard, he recommended the multi-disciplinary approach of the Newcastle CPRU group.

Dr Joachim Fluhrer MB B S  Director, Natural Medical Centre, Manly, Sydney ' Described the approach to M.E/CFS taken by the National Medical Centre of which he is a Director. The centre is able to work through local health practitioners using a series of questionnaires and CDC based flow chart devised by Mark Donohoe, to develop an individual management plan for a patient based on symptomatic indications of metabolic imbalances. In the absence of specific treatment for M.E/CFS, we aim to promote general health and enable the body to function more normally, using for example, low stress diet with supplements to improve the absorption and utilisation of key food substances..

Dr Richard Burnett Endocrinologist - Study of potassium and ME/CFS. Royal Adelaide Hospital. Described his team's recent studies into total body potassium and the movement of potassium out of the muscles during exercise. In the first case half the people with M.E/CFS had lower total potassium than their non-affected controls which was not explained by reduced muscle use. While in the second trial potassium release from the muscles into the blood-stream was markedly delayed in M.E/CFS compared with normal subjects. He outlined future studies to trial spironolactone (a potassium sparing diuretic) and to try to establish exercise as a diagnostic marker which could provide practitioners with a definite test  for M.E/CFS.

Dr Tapin  Mukherjee  Scientist and researcher. Research into red blood cell abnormalities in ME/CFS, Adelaide.  Took the distorted red blood cell theory a stage further with his observations using a scanning electron microscope. Blood samples taken from M.E/CFS patients during severe relapse of symptoms were compared with normal healthy blood from age and sex matched control subjects in a double blind trial. Abnormal diameters, circularity and roughness of cells correlated highly with acute M.E/CFS, and how these factors could increase the cell rigidity leading to capillary blockages. He discussed his early work looking at changed red blood cells in people with ME/CFS his initial experience with red blood cell changes in 7 CFS patients as mentioned earlier persuaded him to concur with those who believed that rheological alterations are somehow connected with the pathophysiology of CFS. This concept is based on the thesis that abnormalities of red cell shapes and consequent alterations in the rheological properties of cells induce the loss of red cell elasticity and hence their mobility so essential for the passage of red blood cells through small capillaries. This rigidity of red blood cells produces impairment in vascular blood flow which is believed to initiate focal regions of anoxia or hypoxia and lactic acidosis, thus producing the feeling symptoms that is very often observed in patients with CFS.

Dr Kathleen Maros GP Adelaide. Who's son had M.E. Joined the panel of speakers for question time.

Survey Results. Conference attendees were asked to complete a questionnaire. Approximately 140 were handed out 44 (31%) were returned 25% Male and 75% Female. Questions asked were have you had a virus such as?

Influenza -Yes 46% No 54%

Glandular Fever- Yes 37% No 63%

Ross River Fever- Yes 16% No 84%

Unknown -Yes 18% No 82%

Barmah Forest -Yes 4% No 96%

Have you had a vaccination?  Yes 63% No 37%

General surgery- Yes 56% No 44%

Anaesthetic- Yes 72% No 28%

Prolonged course of antibiotics -Yes 43% No 57%

Cell Mediated Immunity test (CMI) -Yes 6% No 64%

EEG - Yes36% No 64%

Liver function test - Yes36% No 64%

handled toxic chemicals -Yes 36% No 64%

Had a red blood cell analysis- Yes 25% No 75%

CFSUMI -Yes 9% No 91%

Have you had a diagnoses of:

M.E- 25% No 75%

CFS-59% No 41%

PVS- 11% No 89%

Ross Rive Fever- 5% No 95%

Are you a member of a M.E society? Yes 25% No 86%

A Member of Fibromyalgia support group -Yes 14% No 86%

Do you have a sympathetic doctor? Yes 59% No 41%

 

 

 

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