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
ME/CFS South Australia Inc Co-Signs International Open Letter
South Australian news
Monday 17 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.
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.
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 brave mum who lives with chronic pain and is told her illness isn't real
Heather has suffered from the condition which causes intense chronic pain for the past 20 years and she is still being told that her illness is not real
"It's all in your head." That's what Heather Martin-Goff was told by her doctor when she said her whole body was in pain.
Despite suffering from intense chronic pain for nearly 20 years, Heather, 41, is still being told that her illness is not real.
"Every single doctor I have seen, apart from one, has told me that my condition is not real" she says. "They mention my weight or how much I exercise and they don't listen to me."
Heather suffers from fibromyalgia, a condition causing intense pain around the body, on differing scales from person to person.
For Heather, her fibromyalgia means she is in pain every day - with some days better than others.
Most mornings, Heather is woken up by pain, if she is able to sleep at all.
She says: "A bad day is me in bed, with lots of medications.
"Then that can last for weeks and weeks. You just feel so exhausted and the smallest movement can cause pain."
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
WHEN Derry author Claire Allan began experiencing pain in both her hands four years ago, she initially put it down to a flu-like virus working on her. A newspaper journalist at the time, whose work entailed taking shorthand notes and typing up stories, having sore hands was an huge inconvenience.
But when no cold or flu developed and the pain continued to cause problems, the mum-of-two sought the advice of her doctor. Blood tests showed her inflammatory markers were slightly raised but everything else appeared normal.
After developing pains in her legs and her hips which hindered her mobility, Claire found herself having to walk with the aid of a stick. Fed up and frustrated, she was referred to a rheumatologist who diagnosed her with with fibromyalgia, a condition which causes widespread pain throughout the body as well as sleep problems, fatigue, brain fog, depression and digestive issues.
Now a full-time author, who published her fourth psychological thriller, The Liar's Daughter, just last month, Claire (43) is still coming to terms with the diagnosis and adapting her lifestyle to help her cope with the ongoing symptoms.
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.
At this Fibromyalgia event, practical life solutions, coping strategies and support for symptom control are all offered to sufferers, their extended family and friends and a wider audience.
Fight Fatigue and Fibromyalgia event comes to Limerick This February
In 2015 Fibromyalgia was recognized by the World Health Organization as an official long-term illness affecting 20% of the global population, this illness affects as many as 2% of the Irish population, with no official recognition or direct subvention in its primary care by the Irish Government.
With upcoming elections and in a pitch to create awareness, whilst invoking national change, a group of Limerick healthcare professionals, namely the Ambassador for Arthritis Ireland and the Nutritional Therapists Organisation of Ireland (NTOI), have rallied together to create an awareness event that takes this illusive illness ‘Out Of The Dark.’
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.
When Isobel Rogers, 29, who has chronic fatigue syndrome and myalgic encephalomyelitis (ME), was offered her first job at a law firm she was “thrilled and really optimistic”. But it wasn’t long before the bullying started. Rogers told her new employer about her disability and asked for reasonable adjustments, which included a request to occasionally leave the office before 7pm. “After that [my managers] would deliberately schedule meetings at 6.55pm,” she says. “When I did leave the office earlier, as agreed, I’d get texts saying I had to go back. I’d be in pain, fatigued, and alarmed by the way the situation was escalating, but I’d have to go.”
The long working hours and stress made Rogers’s pain worse. “I felt completely hopeless,” she says. “I was waking up at 4am with the worst pain I’ve ever had. It was worse than when I had brain surgery, but the victimisation was the most horrible thing.” She left after just a few months.
More than half of disabled lawyers have experienced “ill treatment” such as bullying or discrimination in the workplace, and most say it was because of their disability, according to research by Legally Disabled, a copartnership between Cardiff University and the Law Society. The research was based on 55 interviews and nearly 300 survey responses, making it the largest study of its kind in the UK. Many respondents said they had experienced “ridiculing or demeaning language” (40%) and “exclusion or victimisation” (47%).
Fibromyalgia is a lifelong, incurable condition that causes constant pain throughout the body and the initial idea was to raise funds to open a health centre in Deeside to help those with the condition.
Progress was made in setting up a centre, however, the building was subsequently taken over by the NHS.
David explained: “Originally raising funds for a health centre in Deeside, we had got that going but it stopped, the NHS took the centre over. We are now going to start to either raise funds for the Walton Centre or look at donating to other good causes related to fibro. We can help pay for these people that need specialist treatment.”
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:
