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.
Society Seminars for 2020
Saturday 28 March 2020 Time: 2pm Speaker: to be announced Topic: to be announced Venue:Unley Community Centre
Saturday 25 July 2020 Time: 2pm Speaker: to be announced Topic: to be announced Venue:Unley Community Centre
Saturday 28 November 2020 Time: 2pm Speaker: to be announced Topic: to be announced Venue:Unley Community Centre
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.
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.
Joan McParland interview: “I have been conned” - When sick patients are sold psychological snake oil
February 24, 2020
Copyright 2020. All Rights Reserved.
When people are very sick and suffering, especially for months and years, they are desperate to try almost anything to have even a little improvement in their quality of life.
This makes patients susceptible to shysters preying on desperation. Like the snake oil salesman of yesteryear, today we have their modern incantations and must contend with their psychological snake oil.
Joan had been very sick and bedbound for years with the neuroimmune illness myalgic encephalomyelitis - which literally means ‘inflammation of the brain and spinal cord’ - Joan was desperate to try anything so she could be well enough to the healthy Mom she used to be for her son, and return to the work she loved.
Joan paid big money to participate in the ‘lightning process’, a program that professes to treat all sorts of chronic symptoms in just 3 days.
Chronic fatigue syndrome sometimes complicates
Kira Pearce-Dean’s riding career, but she
doesn’t let it keep her out of the saddle.
(Photo Courtesy Of Kira Pearce-Dean)
Adult amateurs face distinct challenges that may include juggling a full-time job with riding and show schedules, scrimping to save extra cash to make the trip to a horse show, or trading labor for lessons or catch-rides. For Kira Pearce-Dean, 31, the list of obstacles also includes her own body.
Pearce-Dean suffers from chronic fatigue syndrome, a debilitating disorder that causes brain fog, insomnia, joint pain and fatigue that worsens with activity but doesn’t improve with rest,
“I was a very active child—I ran track and swam—but when it started, I had to stop all physical activity because any amount of activity made it worse,” she said. “It’s a yo-yo, peaks and valleys, trying to figure out what you can and can’t do. You have good months, bad months, good weeks, bad weeks, good years and bad ones. I spent many years being fairly depressed about not being able to keep up.”
As a child, Pearce-Dean was fascinated with horses, but she didn’t come from a family with hands-on horse experience. It was her dream to one day have a horse of her own. When she was in high school, she found a nearby barn where she could trade work for lessons. A month in, her fatigue—which had been cropping up intermittently through middle school—crescendoed. Suddenly, she struggled to keep up with friends who were participating in sports and spending late nights at parties. Riding was out of the question.
There’s no cure for CFS, and no single drug addresses all its symptoms. Instead, Pearce-Dean has settled on a schedule and management program that works for her, while accepting that sometimes there are going to be flare-ups. In those cases, pushing through isn’t an option.
Kate Stanforth lives with myalgic encephalomyelitis (ME) – a condition that is also known as chronic fatigue syndrome (CFS).
Her symptoms started when she was 14, as one morning she woke up barely able to move.
Now 25, Kate, from Northumberland, uses a wheelchair most of the time to get around.
She describes herself as an ambulatory wheelchair user, which means that she is able to take some steps but needs her wheelchair to help ease fatigue and pain.
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 woman, now 28, is a teacher with Nanaimo Ladysmith Public Schools. She was rear-ended turning in to her driveway by a defendant who was “wholly responsible,” according to the court’s judgment.
The woman, who already suffered from fibromyalgia, sustained soft-tissue injuries to her neck, back and shoulder in the crash, followed by headaches, anxiety and fatigue. After hearing medical evidence from three doctors, the judge decided that “the pain that she experiences to this part of her anatomy has become chronic, in part at least because the soft tissue injury has interacted negatively with her fibromyalgia in a continuous and persistent cycle that would likely not have occurred but for the accident.”
ME/CFS South Australia Inc Co-Signs International Open Letter
South Australian news
Monday 24 February 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.
Cutline: Marie LeBlanc’s art show will be on display at Habitat for the Arts from February 19 to March 7 daily from 2 p.m. to 5 p.m.
It can happen in line at the grocery store, while in her car, at home or in a hotel. Suddenly, Marie LeBlanc’s brain will go blank and she might drop something, forget what she was saying, or start cracking jokes because it’s all she can think to do.
For someone living with Multiple Chemical Sensitivity (MCS), environmental triggers are everywhere and often unpredictable.
In conjunction with Pyjama Day – an event to raise awareness about autoimmune diseases – her upcoming event at Habitat for the Arts, WHO says we need fresh air?!, presents MCS in a heartwarming (and heartwrenching) way.
“I want more compassion for people with this illness,” she said. “If somebody has a condition that is hard to diagnose or understand and they go from doctor to doctor with all these symptoms, maybe it’s an environmental illness.”
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
LISA PEARSON, 50, a parenting coach, lives in St Albans with husband David, 51, an accountant, and children Max, 14, and Willow, 10.
Here, she opens up about her seven-year battle living with chronic pain.
Lying in bed, I gasped in agony as pain coursed through my body right to the tips of my fingers and toes.
It was so bad that I couldn’t bear my children Willow, then two, and Max, six, or my husband touching my skin.
But this wasn’t a severe case of flu with muscular pains – it was an attack of acute fibromyalgia, a chronic pain condition I’ve battled every day for seven years.
Before fibromyalgia set in, I was in great health. I worked as a senior mental health therapist, and though juggling my career with having a family was hard work, I still managed to fit in daily runs.
But in January 2011, I was bitten by a squirrel in our local park. One of our dogs had picked it up in his mouth, and as I retrieved it, the squirrel bit me on the finger.
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.
