Mailing address: PO Box 28,
South Australia 5007
Office: Closed while relocating
1300 128 339
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 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.
ME/CFS Australia (SA) Inc wishes to thank Eco Pest Control for its support of the Society.
I was attending a fibromyalgia support group meeting at the Courage Kenny Rehabilitation Institute where I met Sophie Meath, Director of A Happy Seven. She had asked if she and a few of the actors could attend a meeting, listen and ask questions. It was at the beginning of her project and she wanted to hear from us what we would like people to know about living with fibromyalgia. The premier is in Minneapolis, MN on May 12th, 2016 which happens to be International Fibromyalgia Awareness Day. I fell in love with the idea and the compassion and passion that Sophie showed when she talked about the film and I know you will too!
Melissa: Why did you choose to make a film about fibromyalgia?
Sophie: I chose to make a film about fibromyalgia simply because it needed to be done. My younger sister can't remember a time when she didn't have fibro, but she wasn't diagnosed until just over a year ago when her symptoms started getting worse. Thankfully, she and I are very close, and so she was able to deeply confide in me about her struggles. It was heartbreaking to see my little sister grapple with all the limitations of fibro that constricted her future and killed some of her dreams, not to mention the intense pain she constantly endures. As I began to understand the unique burdens that having invisible illnesses and chronic pain produces, I began to recognize the incredible lack of understanding surrounding her and others in her position. As a filmmaker, I create art that is a remarkably powerful platform for empathy and understanding, so it was a natural development for me to decide to make a film about something so important to me that I'd been becoming more empathetic and understanding about myself.
South Australian Health and Medical Research Institute (SAHMRI)
Research participants wanted
Chronic fatigue syndrome: Leptin, interleukin 6 and clinical symptoms.
What is Chronic Fatigue Syndrome?
Chronic fatigue syndrome (CFS) is characterised by a constellation of symptoms in previously healthy and active individuals.
Because of these symptoms, quality of life of people with CFS can be extremely compromised. While the search for a clear-cut cause remains elusive, we believe that we can make a major contribution to a person’s quality of life by elucidating the biological basis of their clinical symptoms.
If the biology underlying the disabling symptoms of CFS is elucidated, we will be able to target treatments aimed at symptomatic improvement.
What is the purpose of this study?
To evaluate the relationship of the hormones (cytokines) Leptin and Interleukin-6 on the symptoms of Chronic Fatigue Syndrome. We can test these by using a blood sample. We are also embarking on the development of a genetic database for CFS.
Join acclaimed Adelaide soprano and harpist Emma Horwood for a varied recital of music celebrating life and love. From Renaissance lute songs to opera arias, Spanish villancicos, popular folksongs and contemporary pieces by Sting, Billy Joel and Michael Bublé, let Emma's silvery soprano accompanied on pedal harp entrance your senses. Emma will also perform some stunning harp solos, including Baroque Flamenco music and Marcel Grandjany's 'Automne'.
This concert is a fundraiser for Tanya Vallejo. Tanya has been bedridden with ME/CFS (Chronic Fatigue Syndrome) and severe Crohns disease for more than 25 years and is in dire need of financial support. 100% of the proceeds and Emma's CD sales on the day will go to fund care and medicines for her friend. You can make a direct donation via gofundme.com/GiveTanyaHope.
Dear Minister Philpott and Prime Minister Trudeau,
Over 400,000 Canadians are living and suffering with myalgic encephalomyelitis (ME). About 25% of people with ME are severely affected and home or bed bound. As you may know, ME is a chronic, complex, multi-system disease. You may not know that zero funding has been allocated to biomedical ME research this year. Zero.
Canadians living with ME are in dire need of investment in biomedical ME research. We are looking toward the new government and new Minister of Health for your leadership for our neglected disease.
"I wish they would stop calling us 'ME patients'...it implies we receive treatment".
Some patient group always falls into the cracks of a medical system. We are that group. We are more than 400,000 Canadians and we are sick - yet we have no medical specialists, no biomedical researchers, and no treatment options.
We need Ministry leadership with a Federal Framework for Myalgic Encephalomyelitis to ensure:
biomedical research funding commensurate with severity and prevalence of ME in Canada;
physician education about ME and (im)proper treatments;
access to off-label biomedical treatments.
Why is this important?
What patients with a chronic illness have the highest unmet health care needs in Canada?
What illness, commensurate with severity and prevalence, has the highest unmet research funding needs in Canada?
Canadian ME patients are #1 in need of both research and health care. It is an unfortunate distinction.
Pictured [above] is the final 1st place medal I won in a triathlon race before I got sick with ME. Now it also represents 1st place in unmet research and health care needs among Canadian patients.
I have left this 1st place medal with your Policy Advisor as a reminder of what my life was like before ME --- and what it could be again.
Recent international ME research are discovering biomarkers (natural killer cells, cytokines) and off-label medications (Ampligen, Rituximab) are effective in some ME patients in small studies. This is an opportunity to invest in Canadian biomedical research and expand our knowledge of complex neuro-immune illnesses.
We have seen quick and decisive action by this government (Syrian refugee crisis). Canadians living with ME also need quick and decisive leadership to deal with this domestic crisis.
A Federal Framework for Myalgic Encphalomyelitis would begin to address the needs of Canadian ME patients.
Fibromyalgia affects sensory perception and blunts touch perception. The findings of the study reveal that there is abnormal processing of signals in C-type skin nerves (associated with the perception of touch) in fibromyalgia.
Those affected cannot tolerate many of the chemicals that are used in our everyday lives
Spain continues to take steps for Multiple Chemical Sensitivity, the disease of the "bubble people"
In 2014 the Ministry of Health included MCS in the 9th edition of the International Classification of Diseases (ICD), which until December 31st 2015 was the reference system for classifying and coding diagnoses in the health system.
In this way Spain joined the list of countries that recognize the illness. This had been done before by Germany (2000), Austria (2001), Japan (2009), Switzerland (2010) and Denmark (2012), and later Finland (2014).
Until that moment, Spain had not classified MCS, and therefore it did not exist from an administrative point of view. This involved "a complete defencelessness situation" for the sufferers, as stated in the Explanatory Memorandum to the Non Law Proposition that originated the inclusion of MCS in the ICD.
MADRID, APRIL 30th, 2016
Spain has incorporated Multiple Chemical Sensitivity (MCS) to its new International Classification of Diseases or ICD, released on January 1st 2016 under the name of ICD-10-ES. Spain has thus consolidated its official recognition of the disease (expressed in 2014 through its explicit desire to include it in the existing classification at the time); and reaffirms its interest in moving forward for official protection of sufferers.
The procedures have been carried out by MP María del Carmen Quintanilla, member of Popular Party (PP) in collaboration with the Multiple Chemical Sensitivity and Environmental Health Information Service (SISS).
Chronic fatigue syndrome (CFS) could lead to deadly results when it comes to mental health, a new British study has found.
According to researchers from King's College in London, while overall deaths as a result of CFS are not increasing, the rate of mortality as a result of suicide is.
Chronic fatigue syndrome is the condition of never-ending fatigue that does not improve with rest and worsens with activity. Symptoms include persistent exhaustion, muscle weakness, memory problems and insomnia, according to the US Centers for Disease Control and Prevention. Risk factors include a weakened immune system, viral infections, stress and possibly diet. The condition is normally diagnosed after six months of symptoms.
In this study authors combed through data from the National Health Service, the British public health system. After analyzing data from those diagnosed with chronic fatigue from 2007 to 2013, the researchers discovered an alarming trend: a six-times greater likelihood of suicide as compared to the general population in England and Wales.
Davis is not alone. Others are joining in making themselves look ridiculous every day.
Looking silly for a serious cause
The answer is that Davis is a research scientist whose son is severely afflicted with Myalgic Encephalomyelitis (ME), better known as Chronic Fatigue Syndrome — a name that dismisses the severity of this little understood and understudied disease that has devastated the lives of perhaps 1 million Americans, and what are calculated to be 17 million people worldwide.
Taking a selfie with underwear worn over outerwear is a new campaign, “Undies on the Outside,” to raise money — desperately needed money — for research on ME.
Bridges & Pathways is working with the South Australian ME/CFS/FMS Clinical and Research Collaboration (doctors, allied health, practice nurses, university students, researchers, primary healthcare agencies and consumer groups) to improve services and research for people with ME/CFS and Fibromyalgia.
Collaborator membership varies, depending on the projects and funding. Currently, providers/researchers are working together to validate practice tools and care pathways to train doctors and other medical professionals and bring the latest treatments to South Australia.
The South Australian Clinic and Best Practice Centre aims to demonstrate cost effective best practice care for Australians living with these poorly understood complex chronic conditions.
Care pathways are based on 17 years of action research; surveys, focus groups, working groups, small university projects and service provision data.
Fibromyalgia and hyperparathyroidism share a range of symptoms, including fatigue, arthralgia, myalgia, sleep disturbances, depression, anxiety and memory impairment, which increase the chances for an improper diagnosis. Primary hyperparathyroidism is a disease caused by a hyperactive parathyroid, which are small endocrine glands located in the neck, next to the thyroid, and responsible for the secretion of a hormone, the parathyroid, that regulates calcium levels in the body.
To examine progressive brain changes associated with chronic fatigue syndrome (CFS).
Materials and Methods
We investigated progressive brain changes with longitudinal MRI in 15 CFS and 10 normal controls (NCs) scanned twice 6 years apart on the same 1.5 Tesla (T) scanner. MR images yielded gray matter (GM) volumes, white matter (WM) volumes, and T1- and T2-weighted signal intensities (T1w and T2w). Each participant was characterized with Bell disability scores, and somatic and neurological symptom scores. We tested for differences in longitudinal changes between CFS and NC groups, inter group differences between pooled CFS and pooled NC populations, and correlations between MRI and symptom scores using voxel based morphometry. The analysis methodologies were first optimized using simulated atrophy.
We found a significant decrease in WM volumes in the left inferior fronto-occipital fasciculus (IFOF) in CFS while in NCs it was unchanged (family wise error adjusted cluster level P value, PFWE < 0.05). This longitudinal finding was consolidated by the group comparisons which detected significantly decreased regional WM volumes in adjacent regions (PFWE < 0.05) and decreased GM and blood volumes in contralateral regions (PFWE< 0.05). Moreover, the regional GM and WM volumes and T2w in those areas showed significant correlations with CFS symptom scores (PFWE < 0.05).
The results suggested that CFS is associated with IFOF WM deficits which continue to deteriorate at an abnormal rate. J. Magn. Reson. Imaging 2016.