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: Parkside Baptist Church, 100 Young Street, Parkside
Saturday 7 September 2019 Annual General Meeting
2:00pm Speaker: Occupational Therapist Andrea Parker Topic: What happens in vagus: an exploration of vagus nerve stimulation as a potential therapy for ME/CFS and beyond Venue:Unley Community Centre, 18 Arthur Street, Unley
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.
We are 19 years on now from the year I was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The year a GP said to me in the most patronizing of voices, “you need an exercise bike” during an appointment that I’d been carried into by my stepfather as I couldn’t walk or hold my own body up.
During the years I have lived with ME/CFS, this illness has seen me at varying levels. On one end of the spectrum I have been bedridden and completely unable to care for myself. A stage where I remember wondering how it was possible to feel so unwell and still be alive, every moment was excruciating and I literally felt trapped in my own body. This time saw me unable to feed myself, hold a conversation or sit up unaided.
I have also seen myself at higher functioning levels, stages were I can live a fuller life. Perhaps I’m able to take a gentle stroll in the countryside or meet a friend for a coffee, as long as I pace myself and take care not to over do it. At this level I can often appear perfectly OK to an outsider, especially with my hair and make up done, but beneath the surface symptoms and fatigue are always present. The slightest overexertion beyond my boundaries will see me relapse back into being unable to function once again.
ME/CFS can ruin lives; it can rob people of their dreams. It can stop people from living the life they yearn for. Yet, there is still a huge misunderstanding about the severe physical and psychological implications it imposes on people’s lives.
Our guest columnist this week is Pooja Priyamvada, a columnist who writes regularly about issues related to mental health. Pooja has fibromyalgia, a condition characterised by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Women are more affected and there is no cure.
Some days begin like this, thankfully some to begin with, over the years these become many. You wake up as if in someone else's virtual reality. Like someone, somewhere, in this case my own nervous system is flicking switches I can't control and so I pour salt into my morning tea (which I don't mind), some milk in the red sauce of the pasta I am making for my daughter's lunch (I hope it make the sauce creamy, not sour), sugar into the chutney in the blender which was supposed to be spicy, and then I put the mixer into the fridge. Well almost.
I entered college in the fall of 2010, after having ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) for about two years. I threw myself into difficult classes, signed up for extracurriculars, and did my best to live like a normal college student, despite my ME/CFS symptoms. The strategy worked for a few weeks, until I could no longer run on adrenaline. I found myself floundering mid-semester, trying to balance an intense class schedule while managing a chronic illness.
By the second semester, I realized my strategy of not telling my professors about my serious health problems and then scrambling to catch up on material when I started missing classes was a serious mistake. I eventually learned how to balance school and still keep up with my ME/CFS treatments, and the rest of my college experience was dramatically different. You don’t have to compromise your health in pursuit of academic success.
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.
Some medical conditions are especially frustrating to physicians because they lack not only effective treatments but even a reliable means of diagnosis. One of the most common of these is variously known as myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). As the name suggests, it is a syndrome, a group of symptoms that seem to characterize, or define, an illness, even if we don’t know how they’re related or what causes them. That’s different from better-understood illnesses such as solid tumors, rheumatoid arthritis, or stroke, for example.
The signs and symptoms may include fatigue, loss of memory or concentration, sore throat, swelling of neck or armpit lymph nodes, unexplained muscle or joint pain, headaches, unrefreshing sleep, and extreme exhaustion lasting more than 24 hours after physical exercise or mental stimulation (“post-exertional malaise”). People with ME/CFS are often incapable of performing ordinary activities, and sometimes become completely debilitated, unable even to get out of bed. The symptoms can persist for years.
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 17 September 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.
If you flew abroad this summer, you probably passed through an airport’s duty-free perfume section. Perhaps you paused to spritz yourself with an expensive scent you had no intention of buying, before making the obligatory trip to WH Smith for overpriced crisps and bottles of water.
For most people, the wafting odours of perfume counters are not a problem. But, for some, the trip through duty free is a choking, cloying experience.
Research published this year found that one in three adults claim to have experienced health problems caused by fragranced products, whether perfumes, cosmetics, laundry detergents or soap. The study found that fragrance sensitivity caused migraines, watery eyes and respiratory issues. More than 4,300 people from the UK, the US, Australia and Sweden responded, including 1,100 from the UK. Speaking to the New Scientist, the lead researcher, Dr Anne Steinemann – a professor at the University of Melbourne – characterised fragrance sensitivity as a healthcare epidemic of which we don’t yet know the scale. She suggested that fragrances should carry clear labels about their ingredients.
The decision to have kids is a huge one with many factors to consider.
But while most might have money on their minds, ex-F4 member Ken Chu is more worried about passing on his genes.
Or specifically, he's afraid of his child inheriting fibromyalgia, the rheumatic condition that he admitted to be suffering from in 2016.
Ken, 40, has been told by his doctor that there's a 1 in 8 chance that his child might be diagnosed with fibromyalgia.
The singer told Apple Daily Taiwan on Friday (Sept 13): "I can choose not to care and take a gamble, but if my child inherits the condition, doesn't that mean I've let them down?"
Kim Kardashian
(Photo Illustration by Elizabeth Brockway/The Daily Beast)
How Kim Kardashian Is Erasing the Stigma Surrounding ‘Invisible Illnesses’
The businesswoman and reality TV superstar’s public battle with lupus is shining an important light on the so-called “invisible illnesses” that disproportionately affect women.
The season 17 premiere of Keeping Up with the Kardashians, which aired on Sunday, was largely preoccupied with familiar drama—Kourtney’s emotional distance from her sisters, the seemingly endless Tristan Thompson saga, and Jonathan “Food God” Cheban’s latest attempts to ride on the Kardashian coattails. One of the supplemental plotlines, however, centered on Kim Kardashian West’s recent health issues, culminating in an emotional phone call with her doctor.
...
Lupus is an autoimmune disease with varying symptoms ranging from fatigue and joint pain to headaches and memory loss. In extreme cases, the disorder can lead to kidney failure. It is one of many “invisible illnesses,” including Lyme disease, fibromyalgia, and chronic fatigue syndrome, that disproportionally affects women. These diseases are nicknamed “invisible illnesses” because they often cannot be perceived by others, due to symptoms that are not externally visible and differences in the way the diseases manifest from case to case. In addition to the disruptive pain and discomfort caused by chronic symptoms, sufferers of such conditions often struggle emotionally as they constantly have to prove to others that they are ill.
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 16 September 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.
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.
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.
An Israeli child on May 6, 2019, looks at shattered glass
at the entrance to a building damaged by a rocket strike
from the Gaza Strip, in the southern Israeli city of Ashdod.
(Photo: Jack Guez/AFP)
Red tape hobbles traumatized Gaza border residents hit with fibromyalgia
As medical professionals link stress with the debilitating condition, more citizens within the Hamas missile range are diagnosed, but face a painful fight for treatment
Increasingly frequent clashes between Israel and terrorist groups based in the Gaza Strip have been taking their toll on residents of communities adjacent to the border, where the number of people diagnosed with fibromyalgia has increased exponentially over the past few years.
The disorder is characterized by widespread musculoskeletal pain, fatigue, sleep, memory and mood issues. Data by the Health Ministry and Asaf, the Israeli fibromyalgia association, suggests that some 4% of Israelis – 240,000 people – are affected by fibromyalgia and its sibling-condition, Chronic Fatigue Syndrome, both of which affect more women than men.
There is no known cure for fibromyalgia and daily care focuses on managing its symptoms. It usually includes lifestyle changes and alternative treatments such as hydrotherapy, cognitive and behavioral therapy and in some cases, medication.
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.
A woman from Gainsborough has revealed how she learnt how to stand and walk again following a decade long battle with a neurological disorder.
Jess Standley was just 17 when she began experiencing symptoms of ill health, including exhaustion, feeling run down and a cough that refused to go away.
The 27-year-old was eventually diagnosed with Chronic Fatigue Syndrome, otherwise known as ME, in 2010 while she was completing her A-levels.
"My symptoms were fairly severe but I was still able to complete my A-levels and secured a place at Newcastle to study dentistry, said Jess.
"Living with ME means that the symptoms can be quite varied in intensity and there was a period in 2013 when I had to take six months out of university because my symptoms became quite intense."
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.
The team at Camden Holistic Health Clinic are hosting an open day on Saturday, September 21 to give residents a chance to discover the services they offer.
Dr Sandra Cabot said they would love the chance to show off their leading-edge services and share the joy of getting healthy.
"At our clinic, we see a lot of new patients from the local area, Sydney CBD and suburbs, as well as from regional areas of NSW," Dr Cabot said.
"They come to us because they are seeking a type of medicine that is integrative and modern."
...
Dr Cabot said some cases of "chronic fatigue syndrome" could be caused by adrenal gland dysfunction, hidden infections or low levels of sex hormones in men and women, especially after menopause or childbirth.
"Your body is like an orchestra and needs fine-tuning to work at optimal levels," she said. "Your immune system, your gut and your liver may be overloaded, and this can be helped with natural antibiotics and a detoxification program."
Clinic services include hyperbaric oxygen, ozone therapy and alkaline hydrogen water. There is also a holistic beauty therapist who offers therapeutic massage and ozone saunas and holds relaxation exercise classes.
I know you are overworked, underpaid and taken for granted by our government. I realize you can’t work miracles even if you wanted to and the NHS is on limited funding. All I’m asking is your time and human understanding for a better quality of life.
Unfortunately, I can only recall not even a handful of doctors who have been helpful. I understand there is no specific test and no cure as of yet, and treatment is hard to determine. But, I have reached a point where I am so deflated by going to another appointment and leaving feeling more ill, with more questions, and returning home trying to hold in the tears. I have had so many things told to me by doctors, some of which have been said to other patients in the same boat.
