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.
Society Seminars for 2018
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 Venue: SACOSS, 47 King William Rd, Unley
Fed up with judgemental looks, comments and confrontations, a young South Australian woman living with a debilitating disease is calling for more recognition of 'invisible' disabilities.
Mount Gambier resident Sarah Larcombe, 26, suffers from Crohn's disease, a chronic auto-immune illness that causes inflammation of the bowel.
But despite having undergone seven major surgeries over the past nine years — including one to remove her entire large bowel and replace it with an ileostomy bag — Ms Larcombe does not appear sick or disabled.
"You perceive me to look like a young, healthy individual, and it's the total opposite," said Ms Larcombe, who has been issued a disability permit and is under strict instructions not to carry heavy loads.
Some years ago, when Hilary Robertson was suffering from extreme exhaustion and continuous pain, she visited a medical specialist to try to pinpoint what was wrong.
“You’re almost 70,” he told Robertson, who was then actually 62. “Get on with your life. There’s nothing wrong with you.”
Since that time, Robertson has been diagnosed with myalgic encephalomyelitis (ME), a condition commonly referred to as chronic fatigue syndrome (CFS).
And she’s become an advocate for people with this condition, which is still misunderstood in popular culture.
“There were jokes even on Jimmy Kimmel about yuppie flu and ‘oh, I just don’t feel like going to work today,’” Robertson said earlier this year in a talk to the Rotary Club of Osoyoos.
And while popular culture and even some medical professionals still see those with ME as malingerers, there is now widespread medical recognition that ME is a real and serious condition.
Brain Abnormalities In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Evaluation By Diffusional Kurtosis Imaging And Neurite Orientation Dispersion And Density Imaging
November 16, 2018
The American ME and CFS Society is a 501(c)(3) nonprofit
Abstract:
BACKGROUND: Diffusional kurtosis imaging (DKI) and neurite orientation dispersion and density imaging (NODDI) metrics provide more specific information regarding pathological changes than diffusion tensor imaging (DTI).
PURPOSE: To detect microstructural abnormalities in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS) patients by using DKI and NODDI metrics.
STUDY TYPE: Prospective.
POPULATION: Twenty ME/CFS patients and 23 healthy controls were recruited.
FIELD STRENGTH/SEQUENCE: Three-b value DWI (b-values = 0, 1000, and 2000 sec/mm2 ) and 3D T1 -weighted images were at 3.0T.
ASSESSMENT: Mean kurtosis (MK), neurite density index (NDI), orientation dispersion index (ODI), fractional anisotropy (FA), and mean diffusivity (MD) were calculated.
STATISTICAL TESTING: The two-sample t-test analysis in SPM12 software was used to compare the differences between ME/CFS and control groups.
RESULTS: In the ME/CFS patients, we observed significant FA decreases in the genu of the corpus callosum and the anterior limb of the right internal capsule (P < 0.05), but no significant difference in MD (P = 0.164); there were also significant MK decreases in the right frontal area, anterior cingulate gyrus, superior longitudinal fasciculus (SLF), and left parietal area (P < 0.05). Significant NDI decreases were observed in the right posterior cingulate gyrus, SLF, and left frontal area of the ME/CFS patients (P < 0.05). Significant ODI decreases were seen in the bilateral occipital areas, right superior temporal gyrus, the anterior limb of internal capsule, and the posterior cingulate gyrus (P < 0.05), and significant ODI increases were revealed in the bilateral occipital and right temporal areas (P < 0.05).
DATA CONCLUSION: Right SLF abnormalities may be a diagnostic marker for ME/CFS.
LEVEL OF EVIDENCE: 1 Technical Efficacy: Stage 2 J. Magn. Reson. Imaging 2018.
Source: Kimura Y, Sato N, Ota M, Shigemoto Y, Morimoto E, Enokizono M, Matsuda H, Shin I, Amano K, Ono H, Sato W, Yamamura T. Brain abnormalities in myalgic encephalomyelitis/chronic fatigue syndrome: Evaluation by diffusional kurtosis imaging and neurite orientation dispersion and density imaging. J Magn Reson Imaging. 2018 Nov 14. doi: 10.1002/jmri.26247. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/30430664
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.
UK Teen With ME/CFS Took Her Life On Christmas Eve After Break-Up With Boyfriend
International news
Saturday 17 November 2018
Please note: This article contains references to death. If you have feelings of helplessness, or of suicidal thoughts, seek help immediately. Lifeline is an excellent starting point: Lifeline – Suicide Prevention resources and links.
Bethan Charles, who took her life on the train tracks near
Lostwithiel train station, had said she didn't want to
live her life in pain due to her chronic fatigue syndrome.
Teen with painful condition took her life on Christmas Eve after break-up with boyfriend
Bethan Charles had struggled with mental health and physical conditions including chronic fatigue syndrome
A teenager took her own life by stepping in front of a train on Christmas Eve after struggling with mental health and physical conditions for many years, an inquest has heard.
Bethan Charles, from Lostwithiel was diagnosed with chronic fatigue syndrome at the age of nine and described to family members and health professionals that she was in "pain everyday".
On November 7, SMCI in partnership with the Minnesota ME/CFS Alliance co-sponsored a medical education event at the University of Minnesota campus organized by the Student Interest Group in Neurology (SIGN). The event was designed for professional students in medical fields to educate them about myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS).
National Centre for Neuroimmunology and Emerging Diseases
Welcome to the CFS/ME International Conference for 2018
Our research, innovation and discovery (RID) focused conference is uniting industry researchers and academics to advance research in the field of CFS/ME.
The conference will showcase the research achievements of the National Centre for Neuroimmunology & Emerging Diseases, developments in diagnostic tests, discoveries in treatment and provide a forum for international research leadership.
The Disability Inclusion Practice is powered by Scope Global’s experience in working with people with disabilities throughout Australia and the Asia-Pacific region.
We put people with disabilities at the core of this practice by engaging them as our ‘experts’. We believe that difference drives business and are excited to be able to provide a platform that enables organisations and people to connect and work with these experts.
Through the Disability Inclusion Practice we are proud to be breaking down stereotypes and challenging cultural attitudes about what people with disabilities are capable of achieving.
Work with us
We are looking for people with lived experience of disabilities to work with us. We have a range of opportunities available with flexible working conditions (e.g. at home and office-based) and reasonable accommodations/adjustments can be provided if required. Current opportunities include:
Communications and Marketing Officer
1-2 days / week for approx. 6 weeks, to start in November 2018.
This person will be working with our Communications and Marketing Manager and Disability Inclusion Advisor on a global campaign on disability-inclusive development.
The ideal candidate would be someone with a degree/certificate or experience in media, communications and marketing, international relations, disability or a related field.
Skills required: high level of written and oral communication, be able to work independently and be able to connect and coordinate content and people and source context.
Internship/work placement
1-2 days a week for a period of 2-3 months, flexible start time.
This person will be working with our Disability Inclusion Advisor within the Business Development team and will be supporting the launch of a new line of business for Scope Global.
The ideal candidate would be someone with a degree/certificate or experience in community or international development, international relations, disability, business development, marketing and communications or a related field.
Skills required: high level of written and oral communication, be able to work independently, be able to research and provide executive summaries of findings, business mapping and forecasting.
Experts
We are looking for potential candidates to become our ‘experts’ that will work for Scope Global on particular tasks/jobs, for example providing specialised advice on accessibility, inclusion, human rights, governance, ICT, communications to businesses.
Experts will be highly skilled and experienced in their area of expertise.
Contact us
Please feel free to contact us to learn more about working at Scope Global.
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.
An international collaboration of scientists, including Fane Mensah, Dr Jo Cambridge and Australian Dr Chris Armstrong investigated the relationship between CD24 expression and B cell maturation and found CD24 expression on B cells is related to energy metabolism and that its role differs between B cell subsets.
Debbie has been struggling and had to go to food banks
since she went on to Universal Credit earlier this year.
‘WE CAN’T SURVIVE’ Disabled mum says Universal Credit is driving her to food banks ‘after losing hundreds of pounds a month’
Debbie Clark, 42, from Pontypool, who struggles with fibromyalgia, depression and PTSD says she’s struggled since she went onto the new flagship benefits system earlier this year
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.
For the past two years Richard Barry has lived a nomadic, solitary existence, camping up and down the east coast of NSW in a tent.
The panoramic ocean views are spectacular, but many days he is too ill to enjoy them.
He spends much of his time in a state of hypervigilance, scrupulously monitoring his surroundings to avoid an adverse reaction that could send his health spiralling downhill.
Simply going into a “bad” Woolworths to buy a meal or talking to the “wrong” person can be enough to set his body off, he says.
Mr Barry, 32, is a “mould avoider”, one of a small but growing number of people in Australia who believe the toxin is causing them to become severely ill and going to extreme lengths to avoid it.
As with almost all mould avoiders, Mr Barry spent many years in the mainstream medical system seeking an answer to his chronic illnesses.
“I was diagnosed with chronic fatigue syndrome when I was 17. I went down the rabbit hole with a lot of doctors and specialists trying to recover my health,” he tells nine.com.au.
Survey: What Should Be Considered In The Design Of A Clinic To Treat Complex Health Conditions?
South Australian news
Tuesday 13 November 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
Emerge is proud to host this international research symposium on ME/CFS supported by funding from the Australian Government Department of Health. It presents an immense opportunity for both local and international scientists to share insights and collaborate, and critically serve the needs of the ME/CFS patient community to be informed and heard.
We welcome all those interested in ME/CFS to join us for all or part of the symposium from 12 – 15 March 2019.
12th March – Afternoon arrival & Cocktail Welcome Reception 13th March – Day 1 Scientific programme 14th March – Day 2 Scientific programme & Symposium Dinner 15th March – Day 3 Clinical Focus & Open Day including a Symposia Summary with Q&A
Key speakers will include: Dr. Neil McGregor, Professor Paul Fisher, Associate Professor Brett Lidbury, Professor Sonya Marshall-Gradisnik and Professor Don Staines.
CALL FOR ABSTRACTS
Submissions are invited from now until 15 January 2019 for oral presentations in all fields related to the biomedical basis, diagnosis, treatment and management of ME/CFS. We are interested in hearing from Researchers, PhD Students, and Medical and Allied Health Professionals. Please make your submission using the online form.
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 12 November 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.
I recently went to a new doctor. He looked over my chart: "Chronic fatigue syndrome," he read, and then he glanced up at me. "You don't look tired," he quipped. "There, I made it go away."
I've been sick for 24 years, and I get comments like this a lot.
I've grown accustomed to comments like this because my disease — myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — is a debilitating neuroimmune disease that is poorly understood by most of the medical community.
I was 26-years-old when I first got sick with what seemed to be a flu-like virus. Six months later, I was diagnosed with CFS, as it was known in the 1990s. Every day, I deal with widespread pain, brain fog, low blood pressure, and a slew of other symptoms. Worst of all, even mild physical or cognitive exertion makes me feel sicker. This disease robbed me of my career as an attorney, my plans for a family, and even simple activities such as driving or taking a walk. I never imagined I would still be sick a quarter-century after getting ill.
In recent years, the medical spotlight has increasingly been shining on Lyme disease, the bacterial tick-borne illness that often comes with a host of vague, mysterious symptoms.
The widespread illness is often considered the "great imitator" because its symptoms typically mimic other health conditions like rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, multiple sclerosis, and others.
Getting a proper Lyme disease diagnosis remains challenging because testing is often inconclusive, potentially leaving those impacted to suffer for weeks, months, or years before being correctly treated. Although treatments do exist, there is no cure.
Here are 14 celebrities who have spoken out about their experiences with Lyme disease, helping to shed light on this mysterious tick-borne illness.
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.
The society's constitution has been updated:
