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 Venue:Sophia House, 225 Cross Road, Cumberland Park
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
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 23 April 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
The Reality Behind Her Posts Loughborough Instagrammer With 'Invisible Illness' Wants People To See
Lauren Ashmole, 22, from Loughborough suffers from
fibromyalgia and ME and hopes her honest captions on
Instagram show the reality of an invisible illness.
(Image: Lauren Ashmole)
The reality behind her posts Loughborough Instagrammer with 'invisible illness' wants people to see
She wants people to 'understand that Instagram doesn't really show you real life'
Regularly waking up in so much pain you can barely leave bed is a nightmare for anyone.
For Lauren Ashmole it is a reality, and one that leaves her struggling to live life as a normal 22-year-old would.
But from just looking at the bright, colourful, happy photos she posts to her 59,200 followers on her Instagram page, you would probably never guess anything was wrong.
Suffering from fibromyalgia, which causes pain all over the body and Myalgic Encephalomyelits (ME), also known as chronic fatigue syndrome, Lauren's symptoms are very real, but not usually visible from the outside.
Using her Instagram account, where she posts pictures of herself, her outfits, cakes she has baked and snacks she has prepared, Lauren hopes to show the truth behind Instagram.
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 South Australia Inc Co-Signs International Open Letter
South Australian news
Monday 22 April 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.
Once you have submitted your application for a postal vote, the AEC will send your ballot paper to the postal address you have provided.
The AEC will start mailing voting papers to postal voters when nominations for candidates have been declared and ballot papers are available.
Submitting your ballot papers
Ballot papers must be completed and witnessed on or before election day Saturday 18 May 2019, and posted back to the AEC as soon as possible.
You only have 13 days after the federal election for your ballot papers to be received by the AEC.
2019 Tasmanian Legislative Council elections
This postal vote application is for the federal election only. The Tasmanian Electoral Commission has information for voting at the 2019 Tasmanian Legislative Council elections for the divisions of Montgomery, Nelson and Pembroke.
Who can be an authorised witness for a postal vote?
In accordance with s.193 of the Commonwealth Electoral Act 1918, an authorised witness for postal voting may be:
An elector whose name appears on the Electoral Roll
Outside Australia, the following persons are authorised witnesses:
an officer of the Defence Force or of the naval, military or air forces of a Commonwealth country,
a person appointed or engaged under the Public Service Act 1999,
a member of the civil or public service of a State or Territory or of a Commonwealth country,
a Justice of the Peace for a State or Territory or a Commonwealth country,
a minister of religion or medical practitioner resident in a State or Territory or a Commonwealth country,
an Australian citizen.
If you are unable to find one of these people, please see the information in your postal voting guide for further instructions.
A person who is a candidate for the 2019 federal election cannot be an authorised witness.
What if I am a general postal voter or a silent elector?
If you are a registered general postal voter, you will automatically receive a postal vote pack in the mail.
If you are registered as a silent elector, and you are not a general postal voter, you can complete a postal vote application or vote in person at an early voting centre or on election day.
Bev Dickson has just been reminded of some desperately dark times in her daughter’s 30-year struggle with ME, myalgic encephalomyelitis or chronic fatigue syndrome.
Wretched times that took daughter Kaye, right to the brink. Bev doesn’t really want to go back there. The head goes down.
“You have to understand that 30 years ago we went to a doctor who hinted Kaye had Tapanui Flu,” says Bev. Colloquially called Tapanui flu after a cluster of people in the Otago town suffered debilitating fatigue in the 1988s, it wasn’t recognised as a genuine medical condition. “The doctor hinted, but wouldn’t acknowledge she had it,” says Bev. “He wouldn’t diagnose it. He was frightened to.”
And it caused confusion, frustration and fear for both mother and daughter. “It got very close,” admits Kaye. “And I am certain that had it not been for my parents, I would not be here today.” She had been considering a way out.
Bev nods. She knew about it. “You just wish the ME would go away.” The ‘horrible monster’ she calls it. “But at the same time we have always been here for Kaye.”
Bev’s role changed forever in 1989. The mother to a bubbly, carefree spirit suddenly became a carer when Kaye got glandular fever – often viruses are precursors to chronic fatigue syndrome.
Next, in our Hidden Illness series, we meet 29-year-old Sarah from Dublin, whose illness began at age 10 when she was one of the youngest people in the country to be diagnosed with Fibromyalgia. She tells Jennifer McShane of the heartbreaking reality that comes with daily pain management and having to retire from work at only 29.
Sarah's pain and health issues began before she was even a teenager. "I was diagnosed with Fibromyalgia when I was 10, at the time I was told I was one of the youngest people they had seen with it and not a lot was known about the condition. I went from being an extremely healthy and active, bright young child to a child who lived in constant pain and was highly medicated for most of my young adult life."
"I remember being a really active child, horse riding was my number one passion, I had my poor parents pestered for a pony but to no avail! I did lessons every week and pony camps every summer and just loved every second of it. When I was about 10 I remember getting quite a bad virus. Once I had recovered I got back to my usual routine but started noticing that I was getting very tired and lethargic quickly, having trouble concentrating and most of all my legs were in pain. I can remember going to Blanchardstown Shopping Centre vividly and having to stop on a bench in tears because I couldn’t walk any further due to pain. From there I remember seeing the GP and "growing pains" being mentioned but my symptoms got worse. Eventually, I was sent to Temple Street where the consultant diagnosed me with Fibromyalgia."
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.
Donna Diemer talks about her fibromyalgia, which made it
impossible to enjoy her grandson as much as she wanted to.
(Photo: Kevin Graff, Record-Courier)
Cuyahoga Falls woman tries unusual treatment for fibromyalgia
While many struggle to find solutions to coping with the pain of fibromyalgia, one Cuyahoga Falls woman, Donna Diemer, said she’s found one that works for her.
She takes the expectorant guaifenesin, which is normally used to help clear sinuses and the chest of mucus congestion. She said the medication is available over-the-counter and has helped her overcome the excruciating pain of fibromyalgia.
Diemer, 56, said she went from being a super-fit, diet-conscious person who relished the outdoors to being a borderline invalid.
“I would scream all night long, rolling over because of the pain; I would crawl to get things done because of the pain,” she said.
She had reached the point where she was considering filing for disability, but the disease was affecting her personal life, as well.
“I dive-bombed very quickly; I couldn’t even bend over to pick anything up,” she said. “I have a grandson, and I couldn’t hold him; I couldn’t be there; I couldn’t even kneel on the floor.”
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.
Rabbits have been hopping around the UK since Roman times, experts have been able to prove for the first time.
Scientific tests on a rabbit bone, found at Fishbourne Roman Palace in West Sussex, have shown the animal was alive in the first century AD.
...
'Rabbits gave me a reason to live'
Jane Bramley, 64, from Pontefract, west Yorkshire, has been breeding rabbits for more than 30 years and says the animals played a big part in helping her overcome two serious illnesses.
She was diagnosed with cancer aged 30, shortly after the birth of her son, and it was during her recovery from life-saving surgery that her interest in rabbits started.
After taking over a pet shop, she thought she could make some extra money by breeding and selling rabbits.
"Having such a positive hobby to focus my energy on really boosted my recovery," she said.
Ten years later when she was diagnosed with chronic fatigue syndrome, she says her rabbits once again aided her recovery.
"Rabbits gave me a reason to live," she said. "I had to get out of bed every day to go and see them.
"I feel very strongly that my rabbits are therapy and I have devoted my life to them."
Jane currently owns 72 rabbits with her husband Douglas - she has had over 240 in the past - and it takes them two hours a day to feed and water them.
On April 23, at 5 p.m. at Charleston City Hall, 80 Broad Street, in council chambers, Mayor John Tecklenburg will read the Proclamation declaring May as ME Awareness Month and May 12, as ME Awareness Day. Councilman White recognized the importance of raising awareness about ME and introduced the Proclamation.
ME, previously known as Chronic Fatigue Syndrome, is a severe, chronic neuro-immune disease manifest by dysfunction of the neurological, immune, endocrine and energy metabolism systems. There are no available diagnostic tests, no FDA-approved treatments and no cure. ME affects 16 to 39 thousand SC residents, up to 2.5 million Americans and 17-20 million worldwide. Despite its prevalence, ME has long lived in the shadows and has been stigmatized as a psychogenic illness, with those afflicted viewed as lazy or malingering rather than having a serious medical disease.
All of this changed in 2015 when the Institute of Medicine, now the National Academy of Medicine, declared that “ME is a serious, chronic, complex, systemic disease that can profoundly affect the lives of patients.” And according to Dr. Francis S. Collins, Director of the National Institutes of Health, “Of the many mysterious illnesses that science has yet to unravel, ME has proven to be one of the most challenging.”
Securing a City Proclamation was a grassroots effort by people with ME to raise awareness about the lack of health equality for ME patients, many of whom have spent decades homebound and bedridden with little or no assistance. Some patients are so weak they cannot feed themselves.
Of the 17 to 24 million people worldwide who have ME/CFS (chronic fatigue syndrome), a number are bound to be celebrities. Some have made their struggles with ME/CFS known to the public, while others – usually for the sake of their careers – have preferred to keep quiet.
Here are 11 contemporary celebrities with ME/CFS who have stepped forward and not only spoken about the illness, but raised funds for research, started forums, written books, made films, and done their best to dispel the notion that ME/CFS is “all in their heads.”
We applaud the efforts of these courageous individuals.
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.
I'm Growing My Own Medicinal Cannabis And Asking The Police For Amnesty – Here's Why
Fibromyalgia and a stroke in my 20s leave me in chronic pain – but after my landmark cannabis prescription was overruled, I refuse to go back to my costly prescription
In 1928, following centuries of cannabinoids being used in medicine, the UK made the decision to reclassify cannabis as an illegal substance based on its psychoactive effects, instead opting for other equally psychoactive compounds as legitimate medicine. Examples include anaesthetics, analgesics, anticonvulsants and anti-Parkinson drugs as well as medications used to treat neuropsychiatric disorders, such as antidepressants, anxiolytics, antipsychotics, and stimulant medications.
Almost a year on from access being initiated, patients are no further along in their quest for legal medicine. The Clinical Interim Guidelines confirm that there is not enough evidence for recommendations due to the plant’s historical illegality. The guidelines also state that a doctor is free to make a clinical decision to prescribe. However, following that clinical decision, the prescription goes to a funding panel whose first task is to tick a box that states that there is sufficient evidence to fund this medicine. This system was never going to work.
Because the FDA has not yet approved a drug to treat ME/CFS, current chronic fatigue syndrome treatments focus primarily on managing symptoms. Protocols used may include pharmaceuticals (prescribed off-label), nutritional supplements, a variety of complementary therapies and various coping techniques.
A review in the January 2019 issue of the Biomedicine & Pharmacotherapy journal looked into the role nutrition and nutritional deficits play in the pathogenesis of chronic fatigue syndrome. A team of international researchers analyzed 27 studies related to nutritional interventions for ME/CFS. The authors noted 10 specific nutritional deficiencies that “appear to be important in the severity and exacerbation of CFS symptoms.”
A teaching assistant was harassed and victimised by the headmaster of her school, an employment tribunal found as it ruled in her favour in a disability discrimination case.
From 2015, her relationship with headmaster Jed Gargen began to deteriorate, the Teesside employment tribunal was told. Judge Johnson said the fact Gargen told his employee he could “do whatever he liked” and said he did not want her to return to work after sick leave – among other incidents – amounted to disability discrimination, harassment and victimisation.
The tribunal heard that Clifford, who has fibromyalgia and chronic fatigue syndrome, experienced constant pain on a daily basis, and her health had deteriorated since her first diagnosis around the year 2000.
For many wheelchair users, the idea of air travel can cause a sense of dread and anxiety, with passengers with reduced mobility (PRM)’s poor experiences in airports regularly making headlines. Aiming to make the flying experience easier, Drive DeVilbiss has released a video with simple tips for wheelchair users planning to travel by plane.
Despite great strides having been made in the accessibility of car, bus, train, and boat travel for those with mobility needs, air travel can still prove a daunting and stressful prospect for disabled travellers – particularly for those with powerchairs which must be stored in the hold.
Regularly, stories of wheelchairs and powerchairs being damaged in a plane’s hold or mishandled by cabin crews make headlines, alongside reports of lost mobility devices, inappropriate transfers, long waits, and uncomfortable seating arrangements.
The video may prove a useful, informative resource for retailers keen to share practical advice with customers ahead of the busy summer holiday season.
Millions of Women are Living With 'Invisible Illnesses': Here's What That Means
Millions of women who look perfectly healthy on the outside are grappling with chronic conditions that make “normal” life anything but. This is what it’s really like to have an invisible illness.
It's rare to see Carol Head, a longtime nonprofit executive, without her signature accessory: a sleek, black Fitbit. Like many health-conscious, goal-oriented women, Head relies on the tracker to count her steps—but it’s not because she’s trying to get more exercise. She wants to make sure she doesn’t get too much of it.
“I keep my steps under 4,000 a day,” she says. “I’d love to walk the five blocks to Starbucks on a beautiful afternoon, but if I exceed my threshold, I’ll have a hard time functioning at work the next day.”
Head, 64, is one of the estimated 2.5 million Americans with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome (ME/CFS). And she’s grateful she can work at all. Some of the women she’s met in her role as president and CEO of the Solve ME/CFS Initiative have been housebound for months, or even years, at a time—in part because their vague, complex, and frustrating symptoms have been down- played, misdiagnosed, or ignored by medical providers.
ME/CFS is one of a dozen or more “invisible illnesses”—such as Lyme disease, lupus, fibromyalgia, and Crohn’s disease—that tend to strike women more frequently than men. “There’s no strict medical definition, but invisible illnesses are diseases that affect a person’s ability to conduct her life as she’d like to but that you can’t ‘see,’ ” explains Head. “People with these conditions often seem fine, and that creates all sorts of additional challenges, like being harassed for using a handicapped parking space or struggling to make friends understand the effort it takes to simply go out to dinner.”
Graduate student Didem Peren Aykas uses the
experimental diagnostic tool, which measures metabolic
activity in the blood, distinguishing fibromyalgia from other
chronic pain conditions with near 100 percent accuracy.
Fibromyalgia accurately spotted in experimental blood test
For the first time, researchers have evidence that fibromyalgia can be reliably detected in blood samples — work they hope will pave the way for a simple, fast diagnosis.
The discovery could be an important turning point in care of patients with a disease that is frequently misdiagnosed or undiagnosed, leaving them without proper care and advice on managing their chronic pain and fatigue, said lead researcher Kevin Hackshaw, an associate professor in Ohio State’s College of Medicine and a rheumatologist at the university’s Wexner Medical Center.
Identification of biomarkers of the disease — a “metabolic fingerprint” like that discovered in the new study — could also open up the possibility of targeted treatments, he said.
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.
