Mailing address: GPO Box 383,
Adelaide,
South Australia 5001
Office: 266 Port Road,
Hindmarsh,
South Australia 5007
Ph: (08) 8346 3237
('834 MECFS')
Office Hours:
Wednesdays, 10am-3pm
Support Line: (Mondays
and
Thursdays,
10am-3pm)
Ph: (08) 8346 3237
SA country callers:
Ph: 1300 128 339
(local call)
FIBROMYALGIA HELP:
Contact Fibromyalgia SA
at the Arthritis Foundation of SA
118 Richmond Road,
Marleston 5033
Ph: (08) 8379 5711
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc is a member of Charity Direct.
ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
To further assist busy medical practitioners, Dr Bruce Carruthers, principal author of the ME/CFS Consensus Document and Co-Editor of the FMS Consensus Document, and Marjorie van de Sande, Consensus Coordinator of the Consensus Documents, have written and published Overviews of the Canadian Consensus Documents for ME/CFS and FMS independent of any organisation:
SOUTH AUSTRALIA ME/CFS Australia (SA) Inc
Postal address: GPO Box 383, Adelaide 5001
Address: 266 Port Road, Hindmarsh, Adelaide 5007
Phone: (08) 8346 3237 ('834 MECFS')
Support line: (08) 8410 8930 or 1300 128 339 for country callers
Web: www.sacfs.asn.au
Email: sacfs@sacfs.asn.au
It is with great pleasure that we announce a new initiative in the field of XMRV research, the "1st International Workshop on XMRV: Pathogenesis, Clinical and Public Health Implications". This workshop will be held on September 7-8 this year at the National Institutes of Health in Bethesda, Maryland, USA..
The objective of this scientific conference is to assemble an international group of scientists, physicians and epidemiologists to present and discuss, in a public forum, the latest XMRV studies on a range of topics including virus-host interactions, cell type tropism, mode of transmission, animal models and the efficacy of current antiretroviral drugs.
This meeting will offer an interactive setting where the latest developments in the field can be presented in order to evaluate the state of our knowledge, address controversies, and develop an understanding between experts that will help direct future research.
This workshop will be co-sponsored by the NIH and will be organized by Virology Education.
International Science Symposium for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS)
Bond University in collaboration with Alison Hunter Memorial Foundation is pleased to host an International Science Symposium for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in December 2010.
The Symposium, to be held within the Population Health and Neuroimmunology Unit (PHANU), brings together a number of national and international specialist scientists working in the field of ME/CFS.
ME/CFS is characterised by neurological, cardiovascular and myoarthralgic symptoms. Severe forms can present with paresis, seizures, intractable headache and life threatening complications. ME/CFS may be also associated with metabolic disturbances and chemical intolerance.
This Symposium will explore recent advances in scientific disciplines to gain understanding of the pathomechanisms of this condition.
Baggage Check: Link Between Chronic Fatigue Syndrome and Exposure to a Virus Grows
Posted By Andrea Bonior at 1:50 PM on August 26, 2010
After years of research, the link between Chronic Fatigue Syndrome and exposure to a virus may finally be solidifying. A certain retrovirus appears to be present in extremely large numbers of people diagnosed with CFS, compared with control groups. While this does not mean that the virus actually causes Chronic Fatigue Syndrome, finding a correlation is a significant step forward.
The media coverage and commentary about these findings, however, reveals a prevalent misconception about the nature of illness in general. "It's just psychological," many people have complained, dismissing the condition altogether. "Maybe these findings will finally show doctors that it's not psychological at all!" others have excitedly commented, eager to finally get validation of their symptoms.
People with ME/CFS to be permanently excluded from giving blood in the UK from 1 November this year - Department of Health announcement
Friday, 27 August 2010 18:31
The Department of Health has decided to ban blood donation permanently from all prospective donors in the UK who report they have had ME/CFS from 1 November this year. The decision was announced in an email sent to The ME Association today by the Department's Director of Health Protection.
For those of you who can't make it to the Society's seminars, we have videos available.
Thanks to member Jen Bradley for offering her expertise in helping us edit our seminar videos. Thanks, Jen!
There are a number of videos still available from previous seminars:
•
Rickettsia (Dr Ross Philpott)
•
AGM and Endocrinology (Dr Richard Burnett)
•
Nutrition & Herbal Medicine (Belle McCaleb)
In addition to these, older seminars are available on request from the office, including our latest. There will be four more on the way from recent meetings.
The videos are $10 plus postage and packaging.
ME/CFS Australia (SA) Inc
Office:
266 Port Road, Hindmarsh SA
5007
Phone:
(08) 8346 3237
Email: sacfs@sacfs.asn.au
THE appeal by Sir Peter Spencer, of Action for ME, for ME sufferers all over the UK to complete a questionnaire about their experiences with Graded Exercise Therapy (GET) exposes more serious concerns than any comfort it offers (Help us with survey, August 11, 2010).
It is defiance of a fundamental scientific principle to give any treatment before thorough research trials, including risk assessment, have been conducted. One would not expect a new drug to be prescribed or generally available until it had been tested. Yet Graded Exercise Therapy (GET) has been given to human guinea pigs in a network of clinics for five or six years now, despite fears that it may be irreversibly harmful.
If you are able, please join us tomorrow (Saturday 28 August) from 11am to 1pm at the Sofia Conference Room (situated in Cabra Dominican College), 225 Cross Rd, Cumberland Park (see map below).
Here are the details:
ME/CFS Australia (SA) Inc
Seminar: Good Grief
28 August 2010, 11am - 1pm
Speaker
Brenda McHugh-Wilkinson
Brenda McHugh-Wilkinson is a Grief Counsellor at the Riverland Regional Health Service and her session will focus on relationships and grief, life and loss.
A Northamptonshire woman has raised enough money to build a school in Nigeria despite suffering from ME.
Teleri Jardine from Northampton has ME also known as Chronic Fatigue Syndrome.
It's an overwhelming and continuing tiredness that affects the everyday life of a sufferer.
"When I was diagnosed with ME I felt lost and lifeless. That's when I wanted to travel to a developing country and see how they lived, even though they were worse off than me," said Teleri.
She moved to Nigeria for 18 months and found comfort in those living a different life to hers.
"My ME eased and now I look at life so much more differently. We're really lucky over here in the UK and I wanted to give something back," she said.
Proof that Irritable Bowel Syndrome is not in your head
Researchers at TUM are on the trail of causes of irritable bowel syndrome
Irritable bowel syndrome makes life miserable for those affected - at least ten percent of the population. And what really rankles with many of them is that they are often labeled as hypochondriacs, since physical causes for irritable bowel have never been identified. Now, human biologists at Technische Universität München (TUM) have shed light on the issue: They have discovered mini-inflammations in the mucosa of the gut, which upset the sensitive balance of the bowel and are accompanied by sensitization of the enteric nervous system.
STUDY PUBLISHED IN PNAS LINKS CFS TO MURINE LEUKEMIA VIRUSES
The much anticipated report from a group of collaborating researchers at the Food and Drug Administration (FDA), National Institutes of Health (NIH) and Harvard Medical School (HMS) was published online on August 23, 2010 in the Proceedings of the National Academy of Sciences (PNAS). This study reports a strong association with murine leukemia virus-related viruses (MLVs), with 32 of 37 (86.5%) CFS patients testing positive for MLV sequences compared to 3 of 44 (6.8%) of healthy blood donors. The authors state, “Our results clearly support the central argument by Lombardi et al that MLV-related viruses are associated with CFS and are present in some blood donors.” However, the strains of MLVs detected by this research team are different from the ones reported last year in Science.
Mary Petersen, who has been suffering from Fibromyalgia, practicing tai chi on Nahant Beach, Mass., near her home. (Jodi Hilton for The New York Times)
A clinical trial at Tufts Medical Center found that after 12 weeks of tai chi, patients with fibromyalgia, a chronic pain condition, did significantly better in measurements of pain, fatigue, physical functioning, sleeplessness and depression than a comparable group given stretching exercises and wellness education. Tai chi patients were also more likely to sustain improvement three months later.
“It’s an impressive finding,” said Dr. Daniel Solomon, chief of clinical research in rheumatology at Brigham and Women’s Hospital in Boston, who was not involved in the research. “This was a well-done study. It was kind of amazing that the effects seem to carry over.”
If you are able, please join us this Saturday, 28 August from 11am to 1pm at the Sofia Conference Room (situated in Cabra Dominican College), 225 Cross Rd, Cumberland Park (see map below).
Here are the details:
ME/CFS Australia (SA) Inc
Seminar: Good Grief
28 August 2010, 11am - 1pm
Speaker
Brenda McHugh-Wilkinson
Brenda McHugh-Wilkinson is a Grief Counsellor at the Riverland Regional Health Service and her session will focus on relationships and grief, life and loss.
FBI Agent, 19 Others Vote Against Jazz Pharma’s Drug For Fibromyalgia
By Katherine Hobson
An FDA panel of outside experts — including an FBI agent! — voted against expanding the use of Jazz Pharmaceuticals’ narcolepsy drug to fibromyalgia, in part because of its potential as a street drug.
An illegal form of sodium oxybate is similar to the drug GHB, Dow Jones Newswires reports. As the NPR Shots Blog noted in the run-up to the meeting, GHB gained notoriety for its use as a date rape drug. Right now sodium oxybate is distributed for use against narcolepsy only under heavy restrictions, and while panel members agreed it seemed effective against fibromyalgia symptoms in some patients, they were concerned about the potential for its misuse.
Our friends across the border in Victoria tell us that ME/CFS Australia (Victoria) has been successful in securing time on ABC radio program Nightlife with Tony Delroy on Monday 23 August, between 10-11pm (Eastern Standard time). The topic will be "Exploring ME/CFS".
The interviewees will be Simon Molesworth (president of ME/CFS Australia [Victoria]), Dr Donald Lewis (CFS
Discovery), and Dr Nicole Phillips (psychiatrist).
It's a national program, so let as many people know to tune in or record if it is too late. The transcript will be available the next day on ME/CFS Australia (Victoria)'s website.
