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.
Saturday 22 June 2019
1:30pm Speaker: Dr. Bruce Wauchope Topic: Where we are at: an update on progress at the clinic & links with Open Medicine Foundation and others nationally Venue:SACOSS, 47 King William Rd, Unley
Saturday 7 September 2019 Annual General Meeting
1:30pm Speaker: Occupational Therapist Andrea Parker Topic: From Clinician to Client: An Occupational Therapist's Journey With ME/CFS Venue:Sophia House, 225 Cross Road, Cumberland Park
Saturday 23 November 2019
1:30pm Speaker: Mike Musker from SAHMRI (SA Health & Medical Research Institute) Topic: [to be confirmed] Venue:Sophia House, 225 Cross Road, Cumberland Park
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.
“I used to do a lot of walking and family days out, most Sundays we would go on walks to forests and beaches.
“I would spend time with friends and have sleepovers. I don’t see my friends any more. I had to leave college. Having no energy every day is the worst part.”
Katie Wyatt, 17, from Bognor Regis, has ME (myalgic encephalomyelitis, sometimes known as chronic fatigue syndrome or CFS/ME). This chronic, fluctuating neurological condition affects thousands of young people and is the most common cause of health-related long-term school absence.
People with ME experience severe, persistent fatigue – very different from ordinary tiredness – associated with post-exertional malaise, the body and brain’s inability to recover after expending even small amounts of physical and mental energy.
This leads to a flare-up in symptoms including chronic pain, difficulties with concentration, thinking and memory (known as ‘brain fog’) and problems with the nervous and digestive system.
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.
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.
A disabled woman has slammed Bristol's shoppers for being uncharitable after she raised just £10 during a day fundraising.
Helen Wood, who has M.E., which is also know as chronic fatigue syndrome, spent almost six hours at Cribbs Causeway to raise money and awareness for a charity supporting people with her condition.
But after a gruelling five and half hours sitting at a stand with her mother Liz, who acts as Helen's carer, the pair only collected £10.
The 29-year-old, from Thornbury, said even walking through the shopping centre left her in pain due to her muscles aching.
She said: "It was shocking. We were there for five and half hours and I think to myself 'for what?'.
"I don’t know if it was due to the weather but I did hear a few people say to themselves ‘what is M.E?’.
"That alone just shows not enough publicity is made about M.E.
A Dublin mum has opened up about the reality of living with Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome.
Sarah O'Connell is mother to an eight-year-old and a four-year-old, and, like any mum to young kids, her life is always 'go, go, go!'.
However Sarah's life took a drastic turn in 2013 when she was struck down with the winter vomiting bug - and never recovered.
She was diagnosed with ME/CFS just over a year later. She managed to work for about a year after her diagnosis but had to quit because her symptoms got too severe.
"The big reason I had to give up work was due to my physical symptoms definitely but actually it just became impossible to work because of my cognitive symptoms," she told RSVP Live.
"It means that it gets difficult to think clearly, to think of the right words, just memory problems in general.
"I'd be working away and forget what I was working, forget what I was saying in a meeting."
ME/CFS affects all systems of the body. Sarah now suffers from chronic gastritis, ovarian cysts among other physical and cognitive symptoms of the condition.
PETITION NOTE: On September 18th, a group of concerned writers, activists, artists, filmmakers, physicians, and scientists came together to write an open letter to Netflix to request that Afflicted be immediately removed from the service. Sign this petition to endorse the letter. All signatures will be sent to Netflix. Please note that the below is an excerpt. You are encouraged to read the full text of the letter at: https://medium.com/@afflicted/open-letter-to-netflix-regarding-the-afflicted-docuseries-d2b5263c9eb6
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We request that “Afflicted” docuseries be immediately removed from the service. We further request that a formal apology be released that includes a statement of Netflix’s future plans for the programming of documentaries, television, comedy specials, and feature films about disability and projects that include talent, key crew, and/or consultants with disabilities.
We express our profound disappointment with the recently released Netflix docuseries “Afflicted.” We are deeply concerned about its unethical treatment of its subjects and its many factual errors and omissions. Its inclusion on your platform—which reaches three hundred million viewers worldwide—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.
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.
It is not an illness that is widely understood but it is far from uncommon. Whilst it is believed Burns' diagnosis has been detected early and Queensland and Cricket Australia medical staff are expecting him to make a swift and strong recovery, the news made former Australia Under-19 captain and Western Australia batsman Rob Baker shudder.
"I get a sick feeling in my stomach," Baker told ESPNcricinfo.
Baker was a rising star among a golden generation of WA batsmen in the 1990s. He captained Australia's U-19s on a tour of India in 1994, leading a squad featuring Michael Hussey, Brett Lee, Jason Gillespie and Andrew Symonds, against an India line-up with VVS Laxman in their middle order.
Baker broke into the strong WA Sheffield Shield side and made 83 in the 1995-96 Shield final, where South Australia held on for a thrilling draw. In 1998-99 he made a century and three half-centuries in 13 innings, averaging a tick under 50, and played in WA's last Shield-winning final, against Queensland.
But just as his career was set to take off in 1999-2000 after a solid start to the season, he was struck down with illness ahead of a tour match against Pakistan.
Thank you for your interest in the ME/CFS Genes Study!
We are currently recruiting ME/CFS patients AND Healthy Controls for this completely web based study to create a one of a kind genetic database for individuals with ME/CFS.
Participation for this study requires you to have a computer with internet access, an email account and your agreement to map your genes through the use of a publicly available genetic testing websites. If you agree to participate, you will provide us with your raw genetic data for us to compile in a one of a kind, ME/CFS Genetic Database.
Besides providing us with your genetic data, participants will be completing online surveys at your own pace. As all communication is done via secure email server, NO travel is necessary and participation can be done in the comfort of your home!
Below, please find all the information you will need to better understand the purpose of this completely web based study including how to participate, and how you will be receiving information regarding this study.
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.
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.
A South Australian doctor has admitted his claims that "migraine is no longer a mystery" and he could heal conditions like Alzheimer's disease and chronic fatigue using laser therapy were misleading and false advertising, court documents have revealed.
In his written response to professional misconduct allegations from the Medical Board of Australia, Dr Mark Rogers said his claims about low-level laser therapy (LLLT) were based on his "opinion" and "belief" rather than "hard scientific evidence".
Court documents — released by the SA Health Practitioners Tribunal this week — said Dr Rogers promoted LLLT on his website, saying he was "using focused medical technologies to diagnose and heal".
Claims made on his website included "migraine is no longer a mystery" and "our research into migraine reveals they are often caused by referred nerve pain that's a result of longstanding, chronic injury to the base of your skull".
"Adrenaline is the hormone of memory," another claim by Dr Rogers stated.
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.
Most of us are guilty of complaining we're tired, but few of us know the reality of extreme exhaustion.
Chronic fatigue syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is a neuro-immune condition that can range from mild to severe, and can cause profound disability.
...
Symptoms of CFS can include sleep disruption, widespread pain, memory loss, dizziness, recurrent flu-like symptoms, bloating or IBS, or sensitivities to food and medication.
"When people have MECFS, what most people are really surprised to hear is that about 25 per cent of people with it are either housebound or bed-bound," said CEO of Emerge Australia Dr Heidi Nicholl.
"It's a chronic, complex condition, and people can be unwell for a really long time, with an array of symptoms."
Previously, there had been debate about whether MECFS was real - but research has legitimised the condition.
Widespread pain, a common feature among many chronic disorders, is thought to be caused by an underlying disease that triggers a state of central sensitization — where patients develop pain hypersensitivity because of repeated pain episodes.
“However, this argument is currently limited by evidence that has not sufficiently captured the temporal nature of the relationship between diagnosis of the underlying disease and onset of widespread pain,” the investigators wrote.
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.
“Now we can put this to rest,” says researcher Øystein Fluge.
He is referring to the idea that the cancer drug rituximab, which affects certain cells of the immune system, was thought to be helpful in treating chronic fatigue syndrome (ME/CFS).
Recently, Fluge and his colleagues published the results of the latest study of this drug in Annals of Internal Medicine. It marked the end of a nearly 15-year-long research story that began with great hope and enthusiasm, but ended in disappointment.
Now, the researchers have to look for other possibilities.
“You have to respect the results you get and adjust course,” says Fluge, who still believes it would be interesting to do more research on the immune system's role in ME/CFS.
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:
Survey: What Should Be Considered In The Design Of A Clinic To Treat Complex Health Conditions?
South Australian news
Tuesday 11 June 2019
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
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.
ME/CFS South Australia Inc Co-Signs International Open Letter
South Australian news
Monday 10 June 2019
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.
