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.
Society Seminars for 2020
Saturday 2 May 2020 Time: 2pm Speaker: to be announced Topic: Chemical & Environmental Sensitivities, where we will watch a YouTube video of Dr Anne Steinemann and then discuss personal experiences with MCS – personal products, the home, environmental & chemical exposure, etc. Venue:47 King William Rd, Unley SA 5061 (map)
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 firstname.lastname@example.org.
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.
Laura Hillenbrand with Howard family historian,
Col Michael C. Howard, U.S.M.C. (ret.) in front of
life-size bronze Seabiscuit statue at historic
Howard House- Ridgewood Ranch, Willits, CA
Col Michael Howard was a primary source for
Laura Hillenbrand's best-seller,
Seabiscuit; An American Legend
(Photo: Michael Thompson)
Beloved Author Hillenbrand Battling COVID-19: ‘Please, Please Take This Disease Seriously’
Hillenbrand detailed her 15-day battle with the illness on her Facebook page Tuesday, describing extreme difficulty breathing, fever, chills, and exhaustion. Her symptoms have waxed and waned throughout the past 15 days, at one point necessitating a trip to the emergency room when her blood oxygen levels fell too low. She said she is now at home and “profoundly grateful to be alive” although worries her breathing may again worsen and require another trip to the hospital.
Hillenbrand has been open about her long-running battle with Chronic Fatigue Syndrome but points out she is not in any of the classic high risk groups like elderly patients or those with asthma, heart conditions, kidney or liver disease or other issues.
The precise cause of fibromyalgia is unknown, but it causes intense pain throughout the body and is believed to be related to abnormal levels of chemicals in the brain and changes in the way the central nervous system carries pain messages around the body.
After almost four years of unexplained pain and visits to various specialists, Adam’s partner Laurie was finally diagnosed with the condition around two years ago. Adam had been searching for an alternative to the multiple strong medications she was prescribed which brought unwelcome side-effects, and this eventually led to the launch of a new career for the Island businessman, whose family have lived here for over 40 years.
"I was suffering so much, and I just remember thinking, Oh my god, this is it now. This is my life." In 2013, when Mimi Butlin was at university, she got viral meningitis. "That was the trigger," she says, "and I just didn’t get better."
Eventually, Mimi was diagnosed with ME, a chronic condition which causes extreme tiredness and difficulty carrying out everyday activities. We all understand how debilitating pain can be, but it is difficult to comprehend it as a permanent state of being. Yet for some, this is a reality.
In the years since her initial diagnosis, 26-year-old Mimi has continually struggled with her health and has also been diagnosed with three other illnesses: fibromyalgia, connective tissue disorder Ehlers-Danlos syndrome and PoTS syndrome, a nervous system disorder which causes fainting.
In early 2019, as a way to deal with constant cycles of pain and discomfort which can leave her unable to get out of bed for days, Mimi started drawing portraits of celebrities who had spoken openly about living with a chronic condition and posting them on her Instagram account – @cantgooutimsick – alongside captions detailing their experiences.
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:
ME/CFS South Australia Inc Co-Signs International Open Letter
South Australian news
Monday 30 March 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.
A total of 108 blood samples obtained from 28 male and 80 female patients diagnosed with ME were diluted in sterile, Ringer’s Solution and forced (by suction) through 0.2 µm filters.
Of the 28 male samples, 4 yielded filterable bacteria and of the 80 female samples, 18 gave filterable bacteria; as a result, of the total of 124 samples, 22 yielded FB.
Filterable (0.4 and 0.2, but not 0.1micron filterable) bacteria were also isolated from the nose throat and skin of paediatric patients and from the throat and skin of staff at an emergency paediatric hospital.
The highest percentage of bacterial passage occurred through the largest (0.4 µm) pores.
The results show that ultrasmall bacteria occur in ME patients and in paediatric patients and nurses.
The potential pathogenic role of such filterable bacteria is briefly discussed.
Online Wellbeing Survey For Chronically Ill Young People
7 March 2020
If you are a 16-25 year old Australian and living with a diagnosed chronic illness, researchers from Telethon Kids Institute and Curtin University want to hear from you.
Participate in an online survey about wellbeing or take part in a study of an online program that will help you build skills to be kinder to yourself. You will receive a voucher for taking part.
The online intervention and wellbeing surveys for young people with chronic conditions are both open for recruitment. Conditions include, e.g. asthma, allergy, arthritis, burns, cancer, diabetes, myalgic encephalomyelitis/chronic fatigue syndrome, diabetes, pots syndrome, IBC/crohns/ulcerative colitis, multiple sclerosis, cystic fibrosis.
UPLIFT Online Well-Being Program for Young People with Chronic Illness
In this project we want to find out whether an online program improves wellbeing for teens and young adults with a chronic physical illness. If you complete all of the surveys in this study, you will receive two $20 vouchers (your choice of JBHifi or BigW).
Living with an ongoing illness can be very hard. The UPLIFT program provides strategies that people can use to cope with some of these challenges and develop resilience. By participating in this research, you will help us to understand whether this program is helpful for young people with a chronic illness.
We are inviting you to take part in this study if you are:
Aged 16-25 years
Live in Australia
Currently have a diagnosed chronic physical illness, or are in remission
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
2nd ME/CFS International 2020: Research Innovation and Discovery Conference
Friday 27 March 2020
NCNED is excited to announce the 2nd ME/CFS International 2020: Research Innovation and Discovery Conference (RID) to be held at Sea World Resort Conference Centre, Gold Coast, Queensland, Australia on the 19th and 20th of November 2020.
This year's Conference will provide a forum for sharing the latest scientific research data and translation to clinical evidence in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
The 2020 Program and registration link will be available shortly. We look forward to seeing as many of you there as possible.
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.