Mailing address:
PO Box 322,
Modbury,
South Australia 5092
Phone:
1300 128 339
Office Hours:
Monday - Friday,
10am - 4pm
(phone)
ME/CFS Australia (SA) 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 Australia (SA) 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 Australia (SA) Inc wishes to thank Eco Pest Control for its support of the Society.
Saturday 24 March 2018
1:30pm Speaker:Carol Hunter of Rose Park Psychology. Topic: Coping strategies for patients, carers and families living with ME/CFS.
Saturday 30 June 2018
1:30pm Speaker:Diana Bordean, a physiotherapist who helps people with Fibromyalgia and ME/CFS. Topic: What can your physiotherapist do for you? Plus... ME/CFS Life Hacks. Bring along your favourite disability aid, piece of equipment or device. A Travelscoot and electric wheelchair will be available on the day to try out.
Saturday 11 August 2018 Annual General Meeting
1:30pm Speaker: Dr Mona Kaur Topic: Gut Health & ME/CFS New Venue: SACOSS, 47 King William Rd, Unley
Saturday 24 November 2018
1:30pm Speaker: Dr Michael Musker, Senior Research Fellow, SAHMRI Topic: Examining Chronic Fatigue Syndrome using biological markers: A comparison of controls and sufferers
Multiple Chemical Sensitivity sufferer Bekah Fly in Afflicted
AN OPEN LETTER ACCUSES NETFLIX'S 'AFFLICTED' OF ABANDONING ETHICS AND SCIENCE
The new documentary series promised compassion for sufferers of poorly understood chronic illnesses. Instead, it peddled the tired narrative that their suffering is "all in their heads."
Last month, Netflix released a new docuseries, Afflicted, which follows "seven people suffering with bizarre chronic illnesses."
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The participants were told the series would explore their conditions—some of which are poorly understood conditions that are sometimes described as "contested illnesses"—through a "compassionate lens." And before its release, there was cautious optimism among patient communities that the series—released on a platform with 300 million viewers worldwide—would bring greater empathy and understanding for those suffering from these extremely marginalized conditions. But once released, those hopes were dashed.
On Tuesday, I joined a group of physicians, scientists, filmmakers, and writers—including Lena Dunham, Monica Lewinsky, and Mario Capecchi, a Nobel Laureate in genetics—in signing an open letter to Netflix detailing many ethical missteps, scientific errors, and omissions evident in the series. Allowing Afflicted to remain on the widely watched platform, the letter states, "will reinforce barriers to appropriate medical care or disability benefits, dampen the support of vital research, and add to the stigma and social isolation of an already profoundly marginalized group of people." Multiplepetitions have been launched calling on Netflix to remove the series.
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.
The effects of myalgic encephalomyelitis, or ME for short, are devastating enough to leave 25 per cent of sufferers housebound or bedbound and an estimated 75 per cent unable to work.
But, there are no government programs supporting ME awareness in Australia, there are no approved pharmaceutical treatments and, sadly, there is no cure.
It's time to take this seriously and increase funding and research for this disease for the hundreds of thousands here and the missing millions around the world.
A group of artists, writers, physicians and scientists including Monica Lewinsky, Lena Dunham, “Unrest” filmmaker Jennifer Brea and designer Ally Hilfiger have signed an open letter to Netflix denouncing its recent documentary “Afflicted” for its portrayal of chronic illness, and asking Netflix executives to immediately remove the series from its platform.
“Afflicted” has been the subject of criticism since it was released on Netflix in August. Several cast members shared tweets, YouTube videos and blogs explaining how they believe the docuseries misrepresented their stories and created a “false narrative” that cast doubt on their illnesses. The show’s producers have not spoken publicly about the series.
The letter, published Monday on Medium, is addressed to Netflix executives Ted Sarandos, Lisa Nishimura, Brandon Riegg and Verna Meyers, and expresses the letter writers’ “profound disappointment” with the docuseries’ “unethical treatment of its subjects and its many factual errors and omissions.” The series follows seven people with chronic illnesses including myalgic encephalomyelitis/chronic fatigue syndrome and chemical and mold sensitivity.
To raise funds and awareness for Fibromyalgia research and treatments.
All proceeds will go to the Fibromyalgia ME CFS Australia Bridges and Pathways clinic in Adelaide.
MY STORY:
Little is known about Fibromyalgia, so I thought.
I’d never even heard of Fibromyalgia up until recently when I was diagnosed with it.
Specialists don’t know what really causes it and if or when there’ll be a cure or an effective treatment available for the millions of people around the world who suffer from it.
...
WHAT THE FUNDS WILL GO TOWARDS:
There is currently no clinic research demonstration centre in Australia where patients can receive the latest treatment and doctors can refer people to access the latest information and resources.
Funds raised from my walk will go towards:
• staff salaries for a new clinic which will be working with universities to pilot Fibromyalgia and Chronic Fatigue Syndrome general practice early intervention care plans and
• evaluating Centrelink and NDIS (disability assessment management criteria).
The money will cover the Clinic doctors’ salary gaps allowing them to spend more time with each patient and to liaise with the researchers to collect the best possible evaluation data. During the pilot practice nurses will be trained to oversee personalised care plans and referrals to other primary care providers.
Once this program has been evaluated for the Australian health care setting, it will be rolled out Australia wide, helping millions of Australians who suffer from this debilitating illness and their health care providers.
Women, who are healthy, but who exercise vigorously at most once per week or not at all, aged 18 to 65 and on no regular medication, wanted as volunteers for innovative Adelaide research investigating MRI markers of brain inflammation in fibromyalgia syndrome. Must not be biologically related to any one with fibromyalgia or chronic fatigue syndrome.
Survey: What Should Be Considered In The Design Of A Clinic To Treat Complex Health Conditions?
South Australian news
Tuesday 18 September 2018
Please read the letter below from Cathie Powell at Bridges & Pathways and consider completing the online survey. It only takes about 10 minutes and can really help highlight the need for a round the clock, all in one clinic for all those with chronic complex health conditions.
What should be considered in the design of a clinic to treat complex health conditions?
We have an urgent request for you to respond to this State Health Survey about ‘the need for a one-stop clinic for people with chronic and complex conditions in South Australia’.
This is a unique opportunity for you to have your say on matters that are important to you about the services you require to manage your chronic condition/s.
While this is not the proposed ME/CFS clinic, it would be complementary and your responses will let the State Health Department know what all South Australians with complex chronic conditions need to manage their health.
We are aware that many of you have difficulty completing online surveys due to the severity of your illness, and that you may also require assistance from family members and / or carers to compile the information. With this in mind we are showing the questions below in printed form, so you have time to think about them before you go online to complete the survey.
As you reply, it is important to remember this is a State Clinic. The aim is to address Service gaps and reduce waiting lists that cause unnecessary stress, disability and the need to go to hospital emergency departments.
Some examples for us might be the lack of:
• GPs and GP clinics that provide continuing and appropriate care with both during the day and after hours access.
• Care Managers, Practice Nurses to coordinate the range of services you need.
• Affordable physiotherapy, exercise physiology, dieticians, occupational therapy, psychologists.
• Holistic providers (many of you have advised us, you use these as part of your care)
• Community education programs, Information, phone and other on-line support from peer groups.
For those of you who are house bound and or live in rural areas,
• The need for 24/7 phone support
• Telehealth GP appointments both with the doctor and your Case Manager
• Problems you have with physical access, ambulance, wheel chair, lifters for examination tables.
• Multiple Chemical Sensitivity issues
Any other issues related to the cost of your care e.g.
• The cost of medications
• Cost of tests to guide treatments and help with assessments.
• Services to meet Centrelink and National Disability requirements.
When you open the survey online, you will find the following explanation and 6 questions. As this is an opportunity to have your say, we suggest you to think about the questions before you answer. Thank you!
What should be considered in the design of a clinic to treat complex health conditions? Patients who have chronic and complex health conditions often utilise significant health services, not always at their convenience, through hospitals and emergency departments when access to their GP / other services, cannot be gained. SA Health wants to hear from consumers about what they would like to be considered in the design of a One-Stop Clinic for consumers with chronic and complex conditions.
Questions
1. What professions / healthcare workers would you like to see working there (eg: doctors, nurses,
physiotherapist, dietician etc)? (be as specific as you can)
2. What services would you use (eg: physio, wellness and prevention health education, nursing, etc)? (be as specific as you can)
3. What currently makes accessing health services difficult?
4. What would make you go to a ‘one stop clinic’ rather than present to an Emergency Department?
5. What would stop you from going to a ‘one-stop clinic’?
6. Any other comments or suggestions?
Below is the link to the on-line survey about the design of a clinic to treat complex health conditions on behalf of the SA State Health Department. We urgently request you complete it.
Thank you in advance. If you need help please ask your carers to assist you.
Regards Cathie and the SA ME/CFS Fibromyalgia Collaboration Clinic team. South Australian ME/CFS/FMS Clinical & Research Collaboration c/- Bridges & Pathways Institute Inc
Office: 08 82704316 or Mobile: 0447 133 682 or AH: 08 8358 6086
Email: bpprojects02@gmail.com
Netflix Users Demand Service Remove Chronic Illness Series 'Afflicted'
Netflix Users Demand Service Remove Chronic Illness Series 'Afflicted'
By Daniel S. Levine
September 16, 2018
Entertainment Tonight/TV Guide Network. Copyright 2017 PopCulture.com. All rights reserved.
More than 7,400 people have signed a petition calling for Netflix to take down Afflicted, a controversial documentary series about people with chronic illnesses released last month.
Since all seven episodes of the series were released on Aug. 10, the show has been widely criticized for its portrayal of the subjects. Some argue that it makes a mockery out of those with chronic illnesses, and others say it ignores scientific studies on the conditions they have. The subjects themselves have also spoken out against the show.
More than 7,400 people have signed a petition calling for Netflix to take down Afflicted, a controversial documentary series about people with chronic illnesses released last month.
Women, who are healthy, but who exercise vigorously at most once per week or not at all, aged 18 to 65 and on no regular medication, wanted as volunteers for innovative Adelaide research investigating MRI markers of brain inflammation in fibromyalgia syndrome. Must not be biologically related to any one with fibromyalgia or chronic fatigue syndrome.
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.
ME/CFS Australia (SA) Inc Co-Signs International Open Letter
South Australian news
Monday 17 September 2018
ME/CFS Australia (SA) 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 Australia (SA), also, has serious concerns about methodological design flaws in the PACE trial.
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 lifestyle that puts them below the poverty line and is causing immense emotional hardship.
Welfare Rights Centre SA is a community legal centre which specialises in social security law. The Centre has 30 years of experience and expertise in social security law and Centrelink administration. We provide free legal advice and representation to clients facing Centrelink problems. Our clients are the most vulnerable in our community; including terminally ill clients, systematically abused and significantly mentally ill clients attempting to obtain the Disability Support Payment, young people escaping horrifically violent homes to obtain a payment to afford food and people leaving domestic violence relationships to get payments to start a new life.
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In the 2015-2016 financial year, we provided legal advice to well over 2,000 clients facing Centrelink issues and saw over 500 clients through the Housing Legal Clinic.
Late on Friday afternoon, 26 May, we received the surprising and shocking news that the Welfare Rights Centre SA was unsuccessful in retaining their funding beyond the 30 June 2017.
This level of expertise does not exist anywhere else in South Australia. All this experience will be lost if the closure goes ahead. The inability to get timely access to secure income support is often at the root of other legal needs, including housing, credit and debt and family violence. We have assisted domestic violence victims, vulnerable minors, people with significant disabilities and those facing homelessness.
Not sure what you can do to support your ME/CFS community?
Buying an Entertainment Book for yourself or as a gift for others is one way of supporting your Society.
Even if you are unable to dine out, you can save money at selected supermarkets and other retailers. The two for one vouchers come in handy with visitors and children, when using entertainment venues or activity centres.
Let family and friends know they can purchase their new Entertainment Books from us. Not just books covering South Australia; books are available for other states in Australia.
"The Entertainment Book is great value for such a low price. There are a lot of savings I get back instantly. It more than outweighs the original price. There is something for everyone, casual, fine dining, adventure and family...." - Susan L
The society's constitution has been updated:
