Mailing address:
PO Box 322,
Modbury,
South Australia 5092
Phone:
1300 128 339
Office Hours:
Monday - Friday,
10am - 4pm
(phone)
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.
Disclaimer
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.
Support
ME/CFS South Australia Inc wishes to thank Eco Pest Control for its support of the Society.
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.
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
Leonard A. Jason is a DePaul University psychology
professor who has studied chronic fatigue syndrome
primarily in adults for the past 30 years. He also is
director of the Center for Community Research in
DePaul's College of Science and Health.
(Photo: DePaul University/Jamie Moncrief)
NIH funds Chicago-based study of chronic fatigue syndrome and mono in college age students
DePaul University and Lurie Children’s Hospital lead research to uncover underlying mechanisms of disease by examining connections with infectious mononucleosis
CHICAGO — Pathophysiological underpinnings of the development of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are still poorly understood, according to Leonard A. Jason, a DePaul University psychology professor who has studied chronic fatigue syndrome primarily in adults for the past 30 years.
“We need to know what causes one of the most debilitating health conditions, which is ME/CFS. The best way to figure this out is to identify healthy individuals and then observe what occurs when they are infected with something that might be triggering the disease, such as a virus, like Epstein-Barr virus, the cause of infectious mononucleosis, then to see who recovers and who does not and why,” said Jason, a principal investigator of a new five-year, $2.8 million study funded by the National Institute of Neurological Disorders and Stroke, one of the National Institutes of Health.
“This study may help identify risk factors that make certain individuals more likely to develop ME/CFS after an infection and may provide additional insights into biological causes of this debilitating disease,” said Vicky Whittemore, program director at the National Institute of Neurological Disorders and Stroke.
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.
From a young age, Kate Stanforth had a passion for dance.
And by the age of eight, she decided she wanted to be a professional ballerina.
After training seven hours a day, Kate was on track to fulfilling her childhood dream.
But one morning aged 14, her world was turned upside down.
Kate, from Stocksfield, became extremely poorly, could barely move and had no idea what was happening to her.
Looking back on the traumatic experience, the 24-year-old said: "It was horrific, the worst thing you can imagine but at the time I didn't feel anything because I was so ill.
"I could barely move and as I started to deteriorate I became paralysed, ended up bed-bound and my mum had to spoon feed me. I couldn't do anything for myself."
After a year of suffering and not knowing what was going on, Kate, was diagnosed with myalgic encephalomyelitis, also known as chronic fatigue syndrome.
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?
National University of Natural Medicine, University of Washington, and Linfield College is conducting research on the topic of invalidation and stigma in adults who have been diagnosed with fibromyalgia. Invalidation refers to “discounting” and a “lack of understanding” which people with fibromyalgia receive from their social environment.
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 apfalzgraf@nunm.edu.
Please click on the link below (or copy and paste into a new browser) to complete the fibromyalgia survey and share your experiences.
Often misunderstood and misdiagnosed, chronic pain is commonplace for thousands of American women. For those who are pregnant or raising children, the challenges are immense. And as if living with chronic pain weren’t enough, the toll of parenting on top of it can be debilitating. Complicating things further is the process of breastfeeding. Thankfully, lactation experts have identified six breastfeeding positions for moms with chronic pain.
A 2012 study from The American Pain Society found that 25.3 million adults (11.2%) suffer from daily chronic pain. Irene Cullagh, an RN who has worked with mothers and babies for over 20 years and has been an International Board Certified Lactation Consultant (IBCLC) since 2006, tells Romper that moms with chronic pain do have hope.
“There are plenty of pain medications that are compatible with breastfeeding,” she says. “If your chronic pain condition has been treated with a medicine that is not safe for pregnancy, it may be safe for breastfeeding. Some moms with chronic pain conditions go into remission during breastfeeding.” For instance, in some mothers suffering from fibromyalgia, including writer Rita Brhel, hormones released from breastfeeding helped reduce fibromyalgia flares. For others, the pain may not be diminished, but that doesn’t mean there aren’t options for more comfortable breastfeeding positions.
What a difference a day makes. This is my mantra every single day as a fibromyalgia warrior. I find mornings difficult and must motivate myself even on the best of days. I was never an early bird, but fibro has put to rest any idea that I would miraculously become one.
Lack of a good night’s sleep due to drowsiness from sleeping pills makes me more tired than usual. Some mornings, there is a feeling like a chisel bisecting my head, my body has been run over by a lorry, and I have caught the deadliest flu. My joints ache, my muscles are sore and spasm, my hands shake, my skin hurts to be touched, my body feels like it is covered with creepy crawlies and is being used as a pin cushion, my facial spasms affect my ability to see straight. I am more tired than I knew was humanly possible, and I cannot think straight to save my life. What’s my name? Then the panic sets in. I am in the middle of a dreaded fibro flare. And I am alone with a full calendar and a to-do list which grows longer as I sleep.
Since I was diagnosed with fibromyalgia over two years ago, I have become better at managing the unexpected. I wish someone had suggested half of these things to me. So, I hope this helps even one person out there in our great community.
Call for Research Participants
Aged between 18 and 65
years
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:
The catastrophic collapse of Tony Wallace’s life began slowly and silently.
An episode of flu. A persistent illness. A feeling of fatigue. A sense something was not so much wrong, as not quite right.
Over time, his ambiguous symptoms have morphed into a condition that defies medical diagnosis, resists treatment and relentlessly, ruthlessly drains the life out of his body.
ME/CFS South Australia Inc Co-Signs International Open Letter
South Australian news
Monday 13 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.
Participants are needed for an online survey (about 20 mins). Researchers from University of SA and Flinders University are looking to understand consumer health care needs.
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.
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.
