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.
Activists remained completely silent, some wearing gags over their mouths, as they protested alongside the pairs of shoes from midday to 2pm.
The tagline and the empty footwear referenced the fact that millions of people are missing from their careers, schools, social lives and families across the globe due to the debilitating symptoms of the disease, the organisers said.
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.
It started with a bout of mononucleosis. Two college roommates and I got it at the same time. They felt better after a month. I didn’t. Decades later, I’m still living with bone-penetrating exhaustion and brain fog as thick as pea soup. I spent much of my 30s and 40s tethered to my bed, too weak to function. I’ve had to abandon both my career in international relations and my social life.
It’s a disease that can force you to put your life on hold. According to the Institute of Medicine, it can reduce an individual’s ability to function more than heart failure, multiple sclerosis, or end-stage kidney disease. There’s no generally accepted diagnosis for ME. It can take up to five years to be accurately diagnosed, and up to 90 percent of people with it are never accurately diagnosed. Worse still, the FDA hasn’t given the green light to any treatments for it.
Those of us with ME have long hoped the government would come to our aid. Instead, in 1988 it gave the disease a new name, chronic fatigue syndrome, that stigmatizes people with this condition. And the National Institutes of Health has generally looked the other way. Year after year, the NIH has set aside a paltry $5 million to $7 million of its $30 billion annual budget for ME research. Compare that with the $100 million set aside for research on multiple sclerosis, which affects about 400,000 Americans.
Chronic Fatigue Syndrome, or CFS, is an innocuous name given to a debilitating disease. Its seriousness is better indicated by the term Myalgic Encephalomyelitis (ME), a label preferred by many of its victims. On May 17-18, the Department of Health and Human Services hosted the biannual public meeting of the Chronic Fatigue Syndrome Advisory Committee by webinar. This was a fitting time for such a meeting, as May is International ME/CFS Awareness Month.
The trigger for CFS/ME is not known. The lack of research on the disease means there is no truly effective and widely available therapy that would allow the more seriously ill victims to lead meaningful lives free of pain and incapacitating fatigue.
The disease often appears to strike at random. It’s impossible for any of us to know how to protect ourselves from the illness.
PLOS editors discussing authors’ decision to remove chronic fatigue syndrome data
By Alison McCook
May 20th, 2016
After PLOS ONE allowed authors to remove a dataset from a paper on chronic fatigue syndrome, the editors are now “discussing the matter” with the researchers, given the journal’s requirements about data availability.
As Leonid Schneider reported earlier today, the 2015 paper was corrected May 18 to remove an entire dataset; the authors note that they were not allowed to publish anonymized patient data, but can release it to researchers upon request. The journal, however, requires that authors make their data fully available.
Nobody likes to have to cancel plans, but for many people who live with chronic illnesses, it’s a regular part of life. Having an unpredictable condition means you can’t always make it out of the house, even when you want to. Some friends get it and will always be happy to reschedule, but unfortunately not everyone understands.
We askedour readers to tell us some texts they’d love to get, instead of silence or frustrated replies, when they have to cancel plans due to illness. If you’re ever unsure how to respond to your friend’s last-minute cancellation, we hope one of these sparks an idea.
Supporting a loved one through Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
By Melissa Searle
When a person is diagnosed with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) it can be a difficult and scary time, but it can be made easier when they have support. Although most people associate ME/CFS with physical symptoms such as fatigue, the emotional and psychological symptoms are just as taxing on peoples bodies. ME/CFS sufferers deal with hidden symptoms such as anxiety, panic attacks, social anxiety, brain fog and insomnia. Supporting someone through ME/CFS, although hard on the caregiver, can also help in the ME/CFS sufferer’s recovery.
This event brings together world leaders, health ministers and policy influencers to discuss and adopt resolutions with the aim of improving health outcomes across the globe. Separate technical briefings are also organised to present new developments in public health, provide a forum for debate and facilitate information sharing.
This means that Sonya will be able to engage and network with key decision-makers to raise the profile of M.E. and identify opportunities for highlighting M.E. on the global health agenda. She will report on the event in a forthcoming blog post.
Dr. Peter Rowe of Johns Hopkins is an established researcher and doctor at Johns Hopkins University with dozens of ME/CFS studies to his name. He was one of the first researchers to find orthostatic intolerance in ME/CFS, to associate Ehlers-Danlos Syndrome with ME/CFS, and the first to propose that muscle-tendon problems were impairing range of motion and causing exercise problems.
Now he's blazing another trail. He just published a study indicating that milk intolerance is common in adolescents with ME/CFS and is causing them significant distress.
In a robust study of 55 adolescents Rowe demonstrated that dairy commonly caused gastrointestinal disturbances in many young people with chronic fatigue syndrome, that removing dairy removed the gastrointestinal symptoms, and that reintroducing it caused the symptoms to come back.
In a former talk Dr. Rowe went so far as to say that milk caused such problems in those insensitive to it, that unless the problem was recitified (i.e. dairy products were removed from their diet) that significant improvement was unlikely.
The abstract stated that when milk was removed from the diet of milk intolerant adolescents that their health rebounded so that it was similar to others of their age with ME/CFS.
The gist was that milk problems don't cause ME/CFS but they can make make it significantly worse.
The protest will include patients, carers and advocates and donations of patients shoes as a symbolic and poignant statement of those missing from life and too ill too attend. Professor Nancy Klimas, a U.S. AIDS and ME/CFS specialist and researcher says: “Patients with this illness can experience a level of disability that’s equal to that of late stage AIDS, patients undergoing chemotherapy, or those with secondary Multiple Sclerosis.”
A local mother and former high school teacher is rallying support in the state capital this week as part of a national campaign calling for more government research for a debilitating chronic disease.
Lauren Saikkonen is a disabled resident in Jacksonville, and recently became interested in raising awareness and support for Myalgic Encephalomyelitis (ME), or more commonly known as Chronic Fatigue Syndrome (CFS), after she was diagnosed with the illness six years ago at age 26.
“I took me 11 years to receive an accurate diagnosis. I would go to the doctor and say, ‘I think I have the flu’, and they would test me but it would always come back negative for everything,” Saikkonen said.
Two decades ago Wendy Matthews became unwell after contracting a virus that would leave her bedridden for months.
The Whitford resident was later diagnosed with Myalgic Encephalopathy or Chronic Fatigue Syndrome (ME/CFS).
She is one of about 20,000 New Zealanders with the condition that causes incapacitating fatigue, headaches, cognitive dysfunction, amongst other symptoms.
"I would have massive shaking that would go on for hours and big lesions that appeared on my chest. I remember after the first three months thinking how could I be this sick, this long and not have died," Matthews says.
There's no specific cure for the illness, but it has a profound impact on people's careers, their ability to study or maintain relationships and on their independence.
WASHINGTON — Chronic fatigue syndrome patients report they are more anxious and distressed than people who don’t have the condition, and they are also more likely to suppress those emotions. In addition, when under stress, they show greater activation of the biological ”fight or flight” mechanism, which may add to their fatigue, according to new research published by the American Psychological Association.
“We hope that this research will contribute to a greater understanding of the needs of people with chronic fatigue syndrome, some of whom may tend not to communicate their experiences of symptoms or stress to other people,” said the study’s lead author, Katharine Rimes, PhD, of King’s College London. “Others may be unaware of the difficulties experienced by chronic fatigue syndrome patients and therefore not provide appropriate support.”
Participants who felt that expressing their emotions was socially unacceptable were more likely to suppress them. This was the case for both chronic fatigue patients and healthy people, according to the study published in the APA journal Health Psychology®.
This study of 160 people in the U.K. relied on self and observer reports, as well as physiological responses that were collected before, during or after the participants watched a distressing film clip. Half of the participants had been diagnosed with chronic fatigue syndrome while the rest were healthy.
Ron Davis, PhD, has built a career solving biochemical puzzles — and now his son is desperately ill due to a biochemical puzzle of his own. So Davis, a professor of biochemistry and of genetics at Stanford, has taken on a new scientific challenge: sussing out the molecular cause of chronic fatigue syndrome, the disease afflicting his son.
The story of this quest appears in the new issue of Stanford Medicine magazine as part of the spring issue’s special report, “Relationships: Ties that heal.”
Each day has become a race to unravel the mystery of chronic fatigue syndrome, the disease that is killing his 32-year-old son, a freelance photographer who was forced to move into his childhood home five years ago when he was no longer able to care for himself. It’s a puzzle that Davis ruminates over day after day, his mind humming along in high gear, constantly shifting through data, hypothesizing, analyzing.
A one-ounce bag of medicinal marijuana is displayed at the
Berkeley Patients Group March 25, 2010 in
California. California Secretary of State
certified a ballot initiative late yesterday to
possession and sale of marijuana in the State
after proponents of the measure submitted
over 690,000 signatures. (Photo: Justin Sullivan/Getty Images)
Researchers are now pushing the benefits of medical marijuana as the leading cure for fibromyalgia relief. The chronic pain and sleep disturbances can now be soothed by medical marijuana.
Patients suffering from fibromyalgia have been struggling to find a cure or at least a pain relief. To no avail, most pharmaceutical prescriptions would usually leave them with side effects or negative results.
According to HERB, health care professionals are still trying to figure out if fibromyalgia should be considered as a medical condition of not. Fibromyalgia struck 5 to 12 million Americans (mostly women); its cause, however, is yet to be found.
Sun Times reported that medical marijuana can potentially provide a better pain relief or even a cure for the fibromyalgia. Traditional medicine has already failed some patients with the condition, thus the opted to try medical marijuana.
Expectant mothers should probably avoid the drug, experts say, although study didn't prove cause and effect
WEDNESDAY, May 18, 2016 (HealthDay News) -- The widely prescribed drug pregabalin (Lyrica) may slightly increase the risk for birth defects, a new study suggests.
In a small study, researchers found that among women taking Lyrica during the first trimester of pregnancy, 6 percent had infants with major birth defects. In women who weren't taking the drug, 2 percent had a baby with a major birth defect, the study found.