PO Box 322,
South Australia 5092
1300 128 339
Monday - Friday,
10am - 4pm
ME/CFS South Australia 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 South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, 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 South Australia Inc wishes to thank Eco Pest Control for its support of the Society.
KENMORE, WASH.—When planning for her four-bedroom Enliven Bed and Breakfast in Kenmore, Wash., owner Teresa Molitor Luttrell decided to create a haven for people with chemical sensitivities. Luttrell suffered from Lyme disease for many years and understands the needs of the chemically sensitive.
“I turned my house into a place for people with chemical sensitivities. Over the years I have really finetuned it,” Luttrell says.
Millions of Americans suffer from multiple chemical sensitivity. According to the Chemical Sensitivity Foundation, “Multiple Chemical Sensitivity (MCS) is a medical condition characterized by a heightened sensitivity to chemicals. People who have MCS become ill when exposed to a variety of chemicals, many of which are commonly encountered in everyday life. Some people have only mild chemical sensitivities, while others have a more severe form of the illness called MCS.”
The Enliven Bed and Breakfast is fragrance free. “We don’t allow fragranced products or essential oils,” Luttrell says.
Your support can help improve the lives of people suffering with ME/CFS
Can You Help?
Can you imagine living every day where every system in the body is affected so that you become housebound or bedridden?
On Sunday, 12 May the South Australian Health and Medical Research Institute (SAHMRI) joined a global day of action campaign to raise awareness and funding for Dr Michael Musker's research studies in Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).
Your generous donation today will transform the lives of over 100,000 Australians living with this debilitating disease.
"We aim to complete meaningful clinical research projects in collaboration with the ME/CFS community that will enhance the scientific knowledge, developing evidence that can grow over time, and be shared through publication enhancing the international research in this space. It is our vision to promote evidence of biological changes in those who are suffering from ME/CFS at different stages of wellness. Informing diagnostic intelligence and enhancing biological exploration of ME/CFS."
– Dr Mike Musker.
The current process for people suffering from chronic illness and disability to access social services is flawed in Australia. With waiting times exceeding 9 months for people to be assessed for the Disability Support Pension (DSP) it is forcing those living with a disability in some cases to live a lifesstyle that puts them below the poverty line and is causing immense emotional hardship.
This plan is not funded enough, not outcomes-focused enough and not urgent enough for a disease that has been neglected, stigmatized, and misdirected for over 30 years! We cannot wait several more decades to start the work. The NIH must allocate resources NOW to accelerate research!
#MEAction has sent the following letter to Dr. Koroshetz calling on him to take these five actions now:
Provide set-aside funding for ME to accelerate research
Organize meeting of ME experts to reach consensus on patient selection methods and criteria
Fund the identification and validation of biomarkers
Fund a clinical trials network and treatment trials
Address disease stigma and lack of clinicians impeding research
Most pediatric prevalence studies of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been based upon data from tertiary care centers, a process known for systematic biases such as excluding youth of lower socioeconomic status and those less likely to have access to health care. In addition, most pediatric ME/CFS epidemiologic studies have not included a thorough medical and psychiatric examination. The purpose of this study was to determine the prevalence of pediatric ME/CFS from an ethnically and sociodemographically diverse community-based random sample.
A sample of 10,119 youth aged 5–17 from 5622 households in the Chicagoland area were screened. Following evaluations, a team of physicians made final diagnoses. Youth were given a diagnosis of ME/CFS if they met criteria for three selected case definitions. A probabilistic, multi-stage formula was used for final prevalence calculations.
This is our first major survey capturing the experiences and views of people living with chronic illness. This is an opportunity to stand up (or lie down) and be counted and have your voice heard. Your responses will inform our chronic illness manifesto for change.
This survey is open to anyone with a long-term health condition or impairment that restricts their day to day life.
The survey takes about 20 minutes to complete. You can complete it in stages, coming back to where you left off. Please take breaks when you need to. We appreciate the effort surveys like this can take, and your answers are incredibly valuable. The more responses we get, the stronger our case for change.
Editor’s note: Do you feel like some people treat you differently because you have fibromyalgia? And if you take an opioid medication to help ease your pain, do you feel like people are judging you?
Researchers Drs. Andrea Pfalzgraf and Kim Jones are looking into whether people with fibromyalgia feel invalidated or stigmatized, and if so, how that is affecting their lives. If you have fibromyalgia, you can help them by filling out their survey and sharing your experiences.
Have you experienced stigma related to having Fibromyalgia?
The purpose of this study is to gather information from adults who have been diagnosed with fibromyalgia about the following:
Perceptions of Invalidation
Perceptions of Opioid-Related Stigma
This study involves completing a one-time, online survey which should take about 30 minutes. Please note the survey is completely confidential and no personal identification of your information can be made. Your participation is essential to understand the impact of invalidation and stigma on people with fibromyalgia, particularly in relationship to using opioid pain medications. Your input will provide valuable information which will enhance scientific literature and may ultimately help improve patient care and treatment outcomes.
If you have any questions regarding this survey, please contact the Principal Investigator, Andrea R. Pfalzgraf, MPH, PhD at email@example.com.
Please click on the link below (or copy and paste into a new browser) to complete the fibromyalgia survey and share your experiences.
HealthCare NZ also provides her husband Carl, who is severely ill, with cleaning help on Mondays and Fridays funded under a contract with Veterans' Affairs. He also receives 15 minutes of personal care every morning and evening funded by the DHB under a different contract.
The same carer often carries out all these duties for the couple.
Because HealthCare NZ did not provide basic housework support on public holidays in Hawke's Bay and as Christmas Day fell on a Wednesday, with Boxing Day also a public holiday, Careen Busing was expecting help to arrive on Friday.
Instead she received an email on Boxing Day advising her that due to a lack of carers and because her husband was being provided with care during that time she would not receive any home help for two weeks.
"They bundled my husband's care and my own together, which was wrong. We have separate needs. My carer does things specifically for me," she said.
If listening to music can relieve pain, then what might singing do?
I have discovered how to truly benefit from singing in a choir. First there are the benefits of music as mentioned above. Second is the distraction. And third, I have learned that being in a group of people with a common goal can be a way to gain control over my life and over the way I view my body.
Singing in a choir has allowed me to be part of a community, to feel like I belong, and to channel my physical pain into learning and performing music. Being able to take a couple of hours out of my week to blend harmonies with others takes me away from my physical pain and into a place of creativity, beauty and connection. Chronic illness and chronic pain can be extremely isolating. Having a place to go every week where I know I will have fun, work hard and be removed from the physical pain keeps me going when flares are wearing me down.
Call for Research Participants
Aged between 18 and 65
We are looking for volunteers with Chronic Fatigue Syndrome (CFS) or healthy individuals without CFS to take part in a study inevstigating fatigue and its impact on everyday functioning.
As a participant, you will be asked to complete an online survey, which will ask you questions about your CFS, your experience with CFS and your everyday functioning. The questionnaire should take between 40 and 70 minutes to complete.
Participation in this study is entirely voluntary.
To volunteer or for further information please click on the link or use your QR scanner to complete the following screening questionnaire:
1 Department of Molecular Biology and Genetics, Cornell University, Ithaca, NY 14853, USA 2 UC Davis Genome Center—Metabolomics, University of California, Davis, CA 95616, USA * Author to whom correspondence should be addressed.
The latest worldwide prevalence rate projects that over 65 million patients suffer from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), an illness with known effects on the functioning of the immune and nervous systems.
We performed an extensive metabolomics analysis on the plasma of 52 female subjects, equally sampled between controls and ME/CFS patients, which delivered data for about 1750 blood compounds spanning 20 super-pathways, subdivided into 113 sub-pathways.
Statistical analysis combined with pathway enrichment analysis points to a few disrupted metabolic pathways containing many unexplored compounds.
The most intriguing finding concerns acyl cholines, belonging to the fatty acid metabolism sub-pathway of lipids, for which all compounds are consistently reduced in two distinct ME/CFS patient cohorts.
We compiled the extremely limited knowledge about these compounds and regard them as promising in the quest to explain many of the ME/CFS symptoms.
Another class of lipids with far-reaching activity on virtually all organ systems are steroids; androgenic, progestin, and corticosteroids are broadly reduced in our patient cohort.
We also report on lower dipeptides and elevated sphingolipids abundance in patients compared to controls.
Disturbances in the metabolism of many of these molecules can be linked to the profound organ system symptoms endured by ME/CFS patients.
ME/CFS South Australia Inc Co-Signs International Open Letter
South Australian news
Monday 20 January 2020
ME/CFS South Australia Inc has signed an open letter to the journal Psychological Medicine asking for the 2013 PACE paper to be retracted.
By Deborah Marlin, Committee Member
Originally published on 30 March 2017
No doubt you will remember the PACE trial, a research study conducted in the UK looking at the effectiveness of GET (graded exercise therapy) and CBT (cognitive behaviour therapy) in the treatment of ME/CFS.
In 2013 the research team published a paper in the journal Psychological Medicine, in which they stated that each of these treatments led to recovery in 22% of patients, compared with only 7% in a comparison group. The two treatments, they concluded, offered patients “the best chance of recovery.”
There has been much criticism of the research methods used in this study from other researchers and from the ME/CFS community. ME/CFS South Australia Inc, also, has serious concerns about methodological design flaws in the PACE trial.
Your support in this study will help us to understand your health care needs, determine how responsive your health system is to your needs, and identify areas where health systems could improve to better serve these needs. In appreciation you will be invited to enter a draw to win one of 10 x AU$50 Visa Cards. You will also have the opportunity to receive a copy of the findings.