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
Metabolic fingerprinting for diagnosis of fibromyalgia and other rheumatologic disorders
Kevin V Hackshaw1*, Didem P. Aykas2, Gregory T Sigurdson2, Marcal Plans Pujolras2, Francesca Madiai3, Lianbo Yu 4, Charles A. T. Buffington5, M. Mónica Giusti6 and Luis Rodriguez-Saona2
Diagnosis and treatment of Fibromyalgia (FM) remains a challenge owing to the lack of reliable biomarkers.
Our objective was to develop a rapid biomarker-based method for diagnosing FM by using vibrational spectroscopy to differentiate patients with FM from those with Rheumatoid Arthritis (RA), Osteoarthritis (OA) or Systemic Lupus Erythematosus (SLE), and to identify metabolites associated with these differences.
Blood samples were collected from patients with a diagnosis of FM (n=50), RA (n=29), OA (n=19), or SLE (n=23). Bloodspot samples were prepared, and spectra collected with portable FT-IR and FT-Raman microspectroscopy and subjected to metabolomics analysis by ultra-HPLC (uHPLC), coupled to a photodiode array (PDA) and tandem MS/MS.
Unique IR and Raman spectral signatures were identified by pattern recognition analysis and clustered all study participants into classes (FM, RA and SLE) with no misclassifications (p < 0.05, and interclass distances > 2.5). Furthermore, the spectra correlated (R= 0.95 and 0.83 for IR and Raman, respectively) with FM pain severity measured with fibromyalgia impact questionnaire revised version (FIQR) assessments.
Protein backbones and pyridine-carboxylic acids dominated this discrimination and might serve as biomarkers for syndromes such as FM.
uHPLC-PDA-MS/MS provided insights into metabolites significantly differing among the disease groups, not only in molecular m/z+ and m/z- values but also in UV-vis chromatograms.
We conclude that vibrational spectroscopy may provide a reliable diagnostic test for differentiating FM from other disorders and for establishing serologic biomarkers of FM-associated pain.
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 10 December 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.
Prospective Biomarkers from Plasma Metabolomics of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Implicate Redox Imbalance in Disease Symptomatology
Arnaud Germain1, David Ruppert2, Susan M. Levine1 and Maureen R. Hanson1,*
1Department of Molecular Biology and Genetics, Cornell University, Ithaca, NY 14853, USA 2Department of Statistical Science and School of Operations Research and Information Engineering, Cornell University, Ithaca, NY 14853, USA *Author to whom correspondence should be addressed.
Abstract: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disease of enigmatic origin with no established cure. Its constellation of symptoms has silently ruined the lives of millions of people around the world. A plethora of hypotheses have been vainly investigated over the past few decades, so that the biological basis of this debilitating condition remains a mystery. In this study, we investigate whether there is a disturbance in homeostasis of metabolic networks in the plasma of a female 32-patient cohort compared to 19 healthy female controls. Extensive analysis of the 832-metabolite dataset generated by Metabolon®, covering eight biological classes, generated important insight into metabolic disruptions that occur in ME/CFS. We report on 14 metabolites with differences in abundance, allowing us to develop a theory of broad redox imbalance in ME/CFS patients, which is consistent with findings of prior work in the ME/CFS field. Moreover, exploration of enrichment analysis using www.MetaboAnalyst.ca provides information concerning similarities between metabolite disruptions in ME/CFS and those that occur in other diseases, while its biomarker analysis unit yielded prospective plasma biomarkers for ME/CFS. This work contributes key elements to the development of ME/CFS diagnostics, a crucial step required for discovering a therapy for any disease of unknown origin.
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.
Five Australian universities have joined together, along with the CFS Discovery Clinic, to form the ME/CFS Discovery Research Network or MDRN to collaborate and foster biomedical research into Myalgic Encephalomyelitis.
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.
Living in an Australian society that understands and accepts all forms of disability is no longer a pipedream for New South Wales woman Marni Walkerden.
Ms Walkerden is the brains behind the Think Outside the Chair campaign, which is launching in the NSW central coast region this morning.
The online initiative is encouraging the public to download, print and display a new symbol that encompasses all forms of disabilities — both visible and not.
Ms Walkerden said that the proposed new icon and accompanying hashtag #ThinkOutsideTheChair will be displayed alongside the universal symbol for disability at public spaces.
She said she is optimistic this will help break down the public's perception of what a disability means and looks like.
Could disease labelling have positive effects? An experimental study exploring the effect of the chronic fatigue syndrome label on intended social support
By Samara Nobleabc, Carissa Bonnerabc, Jolyn Herschabc, Jesse Jansenabc, Kevin McGeechanabc, Kirsten McCafferyabc
Objective: Chronic fatigue syndrome (CFS) patients report limited social support, which can affect symptom severity. Friends are a key source of social support for young adults with CFS, but there is limited research on friends’ responses to the CFS label. We explored the potential benefits or harms of the CFS label for shaping the potential for social support from a friend’s perspective.
Method: 207 university students responded to hypothetical scenarios about a close friend experiencing CFS. Participants were randomly allocated to either the CFS-label or no-label conditions. The potential for social support was operationalised as attitude (sympathetic or hostile), intended treatment support and intended behavioural support.
Results: The CFS label elicited a greater potential for social support, with significantly higher sympathetic responses, lower rejecting responses and greater support for active treatment. These effects were significantly greater in men compared to women. There was no effect on intended behavioural support.
Conclusion: This study suggests the CFS label may increase the potential for social support. Young adults, particularly men, held more supportive attitudes towards their friend when the CFS label was used.
Practical Implications: The effects of labels on the potential for social support need to be considered when evaluating the usefulness of a disease label.
Keywords
Chronic fatigue syndrome
Medical label
Social support
Gender differences
‘Meet the Scientists’ is a series of interviews with researchers working on ME and chronic fatigue syndrome. We hear about current research directly from scientists and meet the people doing such important work to improve our health. The series will introduce early career researchers through to interviewing scientists and clinicians who have been working on the problems for decades.
NCNED last month hosted the ‘CFS/ME International Conference’ at Griffith University and announced they have been awarded $2.2 million in fellowships from the Stafford Fox Foundation which will help researchers discover the pathology, develop a diagnostic test for GPs and treatment. This is in addition to $6.1 million NCNED received from the Foundation in the past five years at NCNED.
This is our first major survey capturing the experiences and views of people living with chronic illness. This is an opportunity to stand up (or lie down) and be counted and have your voice heard. Your responses will inform our chronic illness manifesto for change.
This survey is open to anyone with a long-term health condition or impairment that restricts their day to day life.
The survey takes about 20 minutes to complete. You can complete it in stages, coming back to where you left off. Please take breaks when you need to. We appreciate the effort surveys like this can take, and your answers are incredibly valuable. The more responses we get, the stronger our case for change.
The International Alliance for Myalgic Encephalomyelitis (IAFME) has produced a trans-national consensus document covering Myalgic Encephalomyelitis (M.E.). Recognition, research and respect: An agenda for change in M.E has the support of over 60 clinicians, researchers, and non-governmental organisations from 28 different countries.
This document has been sent to the World Health Organisation by the Chair of the IAFME and Chief Executive of Action for M.E., Sonya Chowdhury, and the Executive Director of IAFME, Alexandra Heumber, requesting a meeting with representatives to discuss how they can work together to achieve the aims.
The IAFME is calling on the World Health Organisation (WHO) to take leadership for people living with M.E. worldwide who continue to face poor access to healthcare and support.
This consensus document has three aims;
1) To provide an overview of M.E. and the disease burden
2) To highlight barriers to progressing research in the M.E. field
3) To propose an agenda for change
Dr Heidi Nicholl, CEO Emerge Australia and Vice-Chair IAFME said,“This consensus document is a result of collaborative work from international experts, academics and researchers. It represents an important step forward that will underpin the global advocacy led by the IAFME, and has the broad support from stakeholders around the world. We look forward to hearing from the World Health Organisation in response to the Alliance’s request that they co-ordinate a global public health response to M.E.”
I was proud to formally table in Parliament a petition signed by close to 1,400 people around Australia who are living with Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome).
Up to 240,000 Australians are struggling with ME. It is a chronic, multi-system illness that has a devastating impact. An estimated 25% of people with ME are left bedbound, and 75% are unable to work. Many severely affected sufferers require complex care and disability support services.
Despite this, research is grossly underfunded and people living with ME are routinely rejected for financial support including the NDIS.
It is time for the Australian government to get serious about ME/CFS.
At first Shungu thought ME/CFS was a mitochondrial
disorder but his studies convinced him it was probably
more a disease in which poor microcirculation impaired
the ability of the mitochondria to produce energy.
Could Poor Microcirculation Be Causing Chronic Fatigue Syndrome (ME/CFS)?
Could the microvascular system – the small capillaries and the red blood cells that run through them – hold the key to energy problems in chronic fatigue syndrome (ME/CFS) and perhaps fibromyalgia? The idea that the blood delivery system – not some metabolic derangement per se – is causing the problems with energy production is not new.
Over a decade ago, brain scans from Dr. [Paul] Cheney’s ME/CFS patients caught Dikoma Shungu’s eye. The only other time he’d seen lactate levels like that before was in people with primary mitochondrial disorders.
Three vital seed grants from the Solve ME/CFS Initiative allowed Shungu’s work to proceed – work that is still going on today and that’s mushroomed into millions of dollars in funding from the NIH. That work has produced one of the most consistent findings in all of ME/CFS research: Shungu’s five studies have all found increased lactate levels in ME/CFS patients’ brains.
Over time Shungu developed a startling hypothesis. While ME/CFS brains may look like they have a mitochondrial disease, they don’t. That doesn’t mean the mitochondria are working well – they’re not – but they’re not underperforming because of a metabolic problem. Instead, Shungu believes they’re getting pummeled by oxidative stress, resulting, at least in part, from a dramatic decline in the antioxidant system that’s designed to keep oxidative stress in check.
Shungu believes that an immunological change or pathogen triggers the production of pro-inflammatory cytokines and the potent free radical peroxynitrite. When the muffled antioxidant system fails to mop up peroxynitrite, the free radical smashes into and rips up the lipid membranes of cells, and in doing so forms a major menace in ME/CFS – isoprostanes.
Potent vasoconstrictors, the isoprostanes then compress the blood vessels, reducing blood flow and producing a hypoxic or low oxygen environment. That low oxygen environment forces the cells to rely on anaerobic energy production.
In Shungu’s view, then, ME/CFS is not a mitochondrial or metabolic disease; its much simpler than that – it’s an oxidative stress induced micro-circulatory disease. The oxygen the muscles and other energy intensive tissues such as the brain need to produce abundant amounts of energy? It’s there, but it’s just not getting through.
Previous Phase II trials indicated clinical benefit from B-celldepletion using the monoclonal anti-CD20 antibodyrituximab in patients with myalgic encephalopathy/chronic fatigue syndrome (ME/CFS). The association between rituximab serum concentrations and the effect and clinical relevance of antidrug antibodies (ADAs) against rituximab in ME/CFS is unknown. We retrospectively measured rituximab concentrations and ADAs in serum samples from patients included in an open-label Phase II trial with maintenance rituximab treatment (KTS-2-2010) to investigate possible associations with clinical improvement and clinical and biochemical data.
Methods
Patients with ME/CFS fulfilling the Canadian criteria received rituximab (500 mg/m2) infusions: 2 infusions 2 weeks apart (induction), followed by maintenance treatment at 3, 6, 10, and 15 months. The measured rituximab concentrations and ADAs in serum samples included 23 of 28 patients from the trial.
Findings
There were no significant differences in mean serum rituximab concentrations between 14 patients experiencing clinical improvement versus 9 patients with no improvement. Female patients had higher mean serum rituximab concentrations than male patients at 3 months (P = 0.05). There was a significant negative correlation between B-cell numbers in peripheral blood at baseline and rituximab serum concentration at 3 months (r = −0.47; P = 0.03). None of the patients had ADAs at any time point.
Implications
Clinical improvement of patients with ME/CFS in the KTS-2-2010 trial was not related to rituximab serum concentrations or ADAs. This finding is also in line with a recent randomized trial questioning the efficacy of rituximab in ME/CFS. Rituximab concentrations and ADAs still offer supplemental information when interpreting the results of these trials.
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.
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:
This paper documents that red blood cells are less deformable in ME/CFS patients compared to healthy controls. It potentially could be a biomarker, and we are proceeding to design new devices that will make a clear distinction between patients and healthy controls. These devices will be hand-held and easy to use by doctors in their offices, or in clinical testing labs. Past work has looked primarily at the shape of red blood cells, which is difficult to quantitate. Our approach will give a clear quantitative number. It measures the ability of red blood cells to deform while squeezing into a capillary, something that blood cells must do for healthy flow. We measure hundreds of cells from each patient, so, because of this, even though the number of patients is low, we get a very statistically significant distinction between patient and healthy cells’ deformability. We are putting our energy into developing the new devices as soon as possible.
This critical study has been fully funded by Open Medicine Foundation (OMF) through the support of our generous donors.
Carly Barton, 32, who used to teach fine art, developed fibromyalgia, which leaves her in constant pain, after a stroke in her early twenties.
For years, she has used cannabis illegally to control her symptoms. But in a UK first, Ms Barton was prescribed medicinal cannabis last month by Dr David McDowell, a private pain specialist.
Survey: What Should Be Considered In The Design Of A Clinic To Treat Complex Health Conditions?
South Australian news
Tuesday 4 December 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
