ME/CFS/FM Conference Tweed Heads
With a few helpers and little funding
the 'Lismore' Northern Rivers ME/CFS/FM Support
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
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:
Buttfield MB,. BS,. FRACP,. FRACWIA.
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.
L.O. Simpson PhD~
University, Dunedin, New Zealand
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.
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.
Hugh Dunstan, DPhil
(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.
(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 Mark Donohoe MB BS
Joachim Fluhrer MB B S
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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