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.
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.
ME/CFS Australia (SA) Inc wishes to thank Eco Pest Control for its support of the Society.
As our first attempt at having a speaker live from overseas, we did very well. Ros very kindly spent quite a bit of time practicing with me before the event. This now opens up the possibility of having more international experts speak to us live without needing to be in the room which is really exciting.
Key Take-outs of Ros’s Talk:
The first two days of the conference were a colloquium. A brainstorming type event with roughly 60 international researchers and physicians, including Ros, invited to attend. The third day was the conference itself where all the presentations were given.
The important areas of current research include: immunology, biochemistry, brain activity & inflammation, gut/microbiome, metabolome, exercise studies, mitochondria, cardiovascular etc. etc., treatment studies.
The disease is like a molecular jigsaw puzzle we are trying to put together and although we have gaps we now have so much more knowledge than even 5 years ago. Researchers of ME/CFS, unlike other conditions, are all very keen to collaborate and share information which is quite wonderful.
There are several potential biomarkers/tests being investigated at the moment. The 2-day VO2 max test (a.k.a. 2-day bike test) is proving a very reliable way to diagnose ME/CFS.
“I struggle with some health stuff. I have chronic fatigue [syndrome], and when it comes in, that’s just the furthest thing [from what] you ever want,” the “Dancing with the Stars” judge said. “Like, ‘Leave me alone, let’s talk, let’s read a book together, let’s talk about intimate things, let’s find other ways to bond.'”
Using specialized magnetic resonance imaging technology, a study from Taiwan found that patients with fibromyalgia have decreased brain connectivity in specific regions, including the insula and the default mode network.
The insula is part of the cerebral cortex and has been proposed to act as a switching core that relays sensory information. The default mode network (DMN) is a network of interacting brain regions that is normally active when a person is in a “restful” state and not focused on a particular task.
Patients with fibromyalgia are hypersensitive to pain, and studies have shown increased pain responses in the pain network in the brain, including the insula and DMN regions.
Technical limitations have prevented the study of in-depth changes in brain connectivity.
Emily Steffensmeier laughs with her mom, Renee, as they
use blue icing to top cupcakes on Oct. 7 in their State
College home. Steffensmeier has Dysautonomia and
chronic fatigue syndrome and is organizing a walk
to raise awareness and money for research.
(Photo: Abby Drey firstname.lastname@example.org)
Her illnesses kept her bed-ridden for years. Now it’s her mission to raise awareness.
Emily Steffensmeier, of State College, has spent the majority of her adult life battling unrelenting fatigue, unrefreshing sleep, major brain fog and difficulty focusing, malaise and muscle aches. Those are just a few of her symptoms.
Steffensmeier, 42, is among some 70 million people worldwide living with various forms of chronic fatigue syndrome or Dysautonomia, a malfunctioning autonomic nervous system.
For 15 years, she said, she spent many of her waking hours bed-ridden and homebound. But in 2004, after having met with more than 100 doctors to try to find help, Steffensmeier consulted with Dr. Peter Rowe, director of Johns Hopkins Children’s Center’s chronic fatigue in Baltimore.
She said that with medication, he has helped her lead a fuller life, despite her illnesses.
The show BOO! Burlesque will feature a performance from Andover’s Lady May J wearing a special “poppy” suspender belt which was especially designed for women suffering from the condition fibromyalgia by British lingerie brand Ella Vine.
The saucy fundraiser being held on Friday, 20 October is out to raise the profile of the painful, and not well understood condition of fibromyalgia which one in 20 people live with, including international pop diva Lady Gaga.
Designer Ella, who also has ME and fibromyalgia, said: “I’m proud to be able to support this fantastic case and very grateful to Lady May J for kindly holding the flag for all of us sufferers.”
OBJECTIVE: Investigate global and regional grey and white matter volumes in patients with Chronic Fatigue Syndrome (CFS) using magnetic resonance imaging (MRI) and recent voxel-based morphometry (VBM) methods.
METHODS: Forty-two patients with CFS and thirty healthy volunteers were scanned on a 3-Tesla MRI scanner. Anatomical MRI scans were segmented, normalized and submitted to a VBM analysis using randomisation methods. Group differences were identified in overall segment volumes and voxel-wise in spatially normalized grey matter (GM) and white matter (WM) segments.
RESULTS: Accounting for total intracranial volume, patients had larger GM volume and lower WM volume. The voxel-wise analysis showed increased GM volume in several structures including the amygdala and insula in the patient group. Reductions in WM volume in the patient group were seen primarily in the midbrain, pons and right temporal lobe.
CONCLUSION: Elevated GM volume in CFS is seen in areas related to processing of interoceptive signals and stress. Reduced WM volume in the patient group partially supports earlier findings of WM abnormalities in regions of the midbrain and brainstem.
Source: Finkelmeyer A, He J, Maclachlan L, Watson S, Gallagher P, Newton JL, Blamire AM. Grey and white matter differences in Chronic Fatigue Syndrome - A voxel-based morphometry study. Neuroimage Clin. 2017 Sep 28;17:24-30. doi: 10.1016/j.nicl.2017.09.024. eCollection 2018.
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.
The U.S. Food and Drug Administration has approved a new extended-release version of Lyrica for the treatment of neuropathic pain. Lyrica CR is designed to be taken once a day, instead of the two or three doses recommended for Lyrica’s original formulation.
“Lyrica CR was developed to offer patients an effective treatment option with the convenience of once-daily dosing,” said James Rusnak, MD, Chief Development Officer in Pfizer’s Global Product Development. “It provides an important option for patients and health care providers managing these often debilitating pain conditions.”
ME/CFS Australia (SA) Inc Co-Signs International Open Letter
South Australian news
Monday 16 October 2017
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’m looking for Adelaide based people, aged 18-30 who are currently living with ME/CFS and/or Fibromyalgia.
If this is you then you are invited to participate in an 8-session group to collectively develop a resource for people living with ME/CFS and Fibromyalgia. This resource will be based on your stories of lived experience and may take a variety of forms such as a booklet, website, short film, photo essay, collection of short fiction etc – it will be up to the group to decide. This is a chance to tell your story, to connect with others and to co-author a much-needed resource both to help others living with these conditions and to educate the general public.
This group is taking place as part of my PhD research project at UniSA on young adult’s lived experiences of ME/CFS and Fibromyalgia. The resource that we create will form the basis of my thesis discussion and analysis.
Please know that I have ME/CFS myself and I am mindful of the debilitating effects of these conditions. I aim to make the group as chronic illness friendly as I can.
For more information please contact me and I will send you a detailed information sheet or if you have facebook you can check out my Facebook page.
Welfare Rights Centre SA is a community legal centre which specialises in social security law. The Centre has 30 years of experience and expertise in social security law and Centrelink administration. We provide free legal advice and representation to clients facing Centrelink problems. Our clients are the most vulnerable in our community; including terminally ill clients, systematically abused and significantly mentally ill clients attempting to obtain the Disability Support Payment, young people escaping horrifically violent homes to obtain a payment to afford food and people leaving domestic violence relationships to get payments to start a new life.
In the 2015-2016 financial year, we provided legal advice to well over 2,000 clients facing Centrelink issues and saw over 500 clients through the Housing Legal Clinic.
Late on Friday afternoon, 26 May, we received the surprising and shocking news that the Welfare Rights Centre SA was unsuccessful in retaining their funding beyond the 30 June 2017.
This level of expertise does not exist anywhere else in South Australia. All this experience will be lost if the closure goes ahead. The inability to get timely access to secure income support is often at the root of other legal needs, including housing, credit and debt and family violence. We have assisted domestic violence victims, vulnerable minors, people with significant disabilities and those facing homelessness.
Throughout her life, Benedettah Wangui Mwangi has been living with constant body pain. This is because she suffers from fibromyalgia, a health condition without cure. It causes pain all over the body, brings fatigue, and causes problems with the function of the arms, mobility, breathing, swallowing, balance, memory, sleep and mood.
“Wounds would take very long to heal. A little bruise would get septic and spread into a big wound that would take months to heal,” says the single mother of one. If it wasn’t the struggle to heal wounds, Benedettah would be down with hay fever or tonsillitis. Hospital jabs were part of her life.
Until finally she started to meet other people--mostly women--who had the same problem: a misunderstood illness, generically described as "chronic fatigue syndrome" or what used to be called "hysteria." To take control of her life--and to be taken seriously, she started to film herself, others like her and the few experts there are. Her film is called "Unrest."
Are you 18-65 years old and have been diagnosed by a GP or medical practitioner as having ME/CFS and do not currently play active video games?
If so, you may be eligible to participate in our study titled: 'Pacing to increase physical activity for adults with ME/CFS: Are active video games a feasible and acceptable strategy?'
Pacing is commonly used by people with ME/CFS to manage their available energy and achieve daily activities while avoiding flare-ups. Pacing can also be used to slowly increase physical activity levels – but very little research has investigated this approach. Recently, the rise of active video gaming has also provided an option for people experiencing barriers to physical activity participation – but there is no information whether this is feasible or acceptable for people living with ME/CFS. Understanding the links between physical activity and inflammatory pathways in the body may help us to understand the mechanism behind ME/CFS.
The pilot study involves pacing to manage symptoms, and gradual attempts to increase physical activity by replacing other physically passive activities using conventional activity (such as resistance exercise or walking) or active gaming (Xbox Kinect either sitting/reclining or standing) over a 6 month period. Heart rate monitoring is integral to the study and will be used to assess the safety of activity levels. At the end of the intervention, participants will be able to keep an active gaming console as compensation for their time.
The study protocol has been developed by extensive consultation with the ME/CFS community and a Stakeholder Advisory Group made up of medical specialist, support group representatives and people living with ME/CFS. The study has been approved by the UniSA Human Research Ethics Committee.
If you are interested in this study or would like further information, please contact Daniel Clark from the University of South Australia (email Daniel.Clark@unisa.edu.au) or the UniSA Clinical Trials Facility (ph.  8302 1365). People who cannot tolerate more than five minutes of moving images (e.g. TV) should not apply.
We look forward to hearing from you.
Accredited Exercise Physiologist
University of South Australia