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.
Please note: This page reports a wide range of news items about ME/CFS and Fibromyalgia, not all positive or underpinned by science. See our Disclaimer (below left). If you see views that contradict the reality of the illness, please make it known to the writers or publishers of such articles – this will help to spread awareness amongst the general public.
FITNET's Internet-Based CBT Is Ineffective And May Impede Natural Recovery In Adolescents With ME/CFS. A Review
FITNET’s Internet-Based Cognitive Behavioural Therapy Is Ineffective and May Impede Natural Recovery in Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. A Review
Simin Ghatineh1 and Mark Vink2,*
1Biochemist, London TW11, UK 2Family Physician, Soerabaja Research Center, 1096 HH Amsterdam, The Netherlands
Received: 6 April 2017 / Accepted: 2 August 2017 / Published: 11 August 2017
Abstract: The Dutch Fatigue In Teenagers on the interNET (FITNET) study claimed that after 6 months, internet based cognitive behaviour therapy in adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), led to a 63% recovery rate compared to 8% after usual care, and that this was maintained at long term follow up (LTFU).
Our reanalysis shows that their post-hoc definition of recovery included the severely ill, the unblinded trial had no adequate control group and it used lax selection criteria as well as outcomes assessed via questionnaires rather than objective outcomes, further contributing to exaggerated recovery figures.
Their decision not to publish the actometer results might suggest that these did not back their recovery claims.
Despite these bias creating methodological faults, the trial still found no significant difference in recovery rates (“~60%”) at LTFU, the trial’s primary goal.
This is similar to or worse than the documented 54–94% spontaneous recovery rates within 3–4 years, suggesting that both FITNET and usual care (consisting of cognitive behaviour and graded exercise therapies) are ineffective and might even impede natural recovery in adolescents with ME/CFS. This has implications for the upcoming costly NHS FITNET trial which is a blueprint of the Dutch study, exposing it to similar biases.
Inspirational Author Kristi Patrice Carter Release Illustrated Children's book “Chronic Illness Can't Beat My Superhero Mommy”
Many families wonder how to explain something like fibromyalgia to their children in a way that won't leave them upset or frightened. Kristi Patrice Carter tackles this head on in her new children's book “Chronic Illness Can't Beat My Superhero Mommy” and parents couldn't be more pleased.
August 17, 2017
Fibromyalgia can be a challenge to deal with, especially for a mother with an active child or children. In an effort to compassionately explain the difficulties of the health issue to a youngster, popular self-help author Kristi Patrice Carter has announced the release of “Chronic Illness Can't Beat My Superhero Mommy”, a picture book for children explaining life with fibromyalgia, how it can still be lots of fun and full of adventure, as long as the condition is treated with the respect and concern it deserves.
“I've found story telling to be a magnificent way to break down difficult subjects for kids of all ages to understand,” remarked Carter, author or close to a dozen books. “Mom's who fulfill all their responsibilities with more or less of a smile, while dealing with fibromyalgia are true superheros in every sense of the word, so coming up with the title wasn't hard at all.”
“Chronic Illness Can't Beat My Superhero Mommy” is expertly illustrated in full color by Avoltha, a perfect selection to compliment Carter's heart-touching words. Told from the perspective of a young girl, Danielle, as she's educated about the dual issues of fibro and migraines her mother is facing, both by her mom herself and other loving family members, the book becomes quite difficult to put down either for a child or adult. It also expertly opens up the door to family discussions about these and other health issues, always framing them in a positive and constructive way and avoiding fear-building and other undue negativity.
“Chronic Illness Can't Beat My Superhero Mommy” is available both in paperback and Kindle editions.
Early reviews have given Carter's new books two very enthusiastic thumbs up.
Sarah S., from Indiana, recently said, “Chronic Illness Can't Beat My Superhero Mommy” gave me a way to educate my daughter about my fibromyalgia, that was both caring and compelling. She loved it and so do I. Five stars and fully recommended.”
I was educated at Baylor and practiced medicine for 30 years. I had a thriving practice, a rich social life, and excellent physical and mental health. I loved what I did and loved my life. I ran marathons, spoke at conferences, and chaired non-profits.
I am now completely bedridden from post viral CFS.
I am writing this to beg my fellow colleagues to take this disease seriously, understand that it is 100% organic in origin, and that it can happen to anyone.
I used to see CFS patients fairly often in my practice. Some of them were quite debilitated and some semi-functional. I always tried to be sympathetic and did what I could to help, but truth be told there was always a voice in my head questioning if their symptoms were psychosomatic. At times I delayed a diagnosis because the literature told me to wait 6 months. I recommended exercise, antidepressants, and psychotherapy because that had always been the conventional wisdom. And when patients didn't come back, I subconsciously assumed they had gotten better, and that I was justified in my approach. I feel tremendous guilt about this now.
When I got the flu that started this, I thought I would be out of work for 10 days. 10 days turned into 10 weeks, and then 10 months. The virus was gone, my labs were clean, and yet I still felt horribly ill.
I could barely stand up in the shower due to orthostatic intolerance. Later my wife would have to install a shower chair
I could not read or write due to cognitive dysfunction
I could not walk more than 45 steps without extreme lactic build up in my muscles
Any minor extortion would produce an intensifying of symptoms for several days
Add on insomnia, sensitivity to noise and light, and uncharacteristic emotional lability and you understand the hell my life became
Every type of conventional medical test came back negative or could not explain symptoms. My own family thought I was crazy (not to mention my friends, cohort, and colleagues).
Of course I tried the standard things I told my patients to do. Antidepressants were hit or miss as they so often are and did not touch the core symptoms. Psychotherapy was helpful for coping. Exercise of any kind was a complete unmitigated disaster that severely and permanently worsened my state.
Finally I did find lab abnormalities. Cytokines. Krebs cycle metabolites. Near zero ADH. As I lay bed-bound I slowly regained the ability to process complex data, and I poured through the research and discovered that yes this is a very real illness with organic abnormalities documented as early as 1932. Why aren't we taught this in medical school?
I tried antivirals, antibiotics, hormone replacement, and yes I'll admit, even some more questionable alternative medicine protocols. Nothing worked.
Finally I went into remission using a combination of monoclonal antibodies (Rituxan, Cosyntex, Enbrel). Remission was glorious. I took my wife to Costa Rica, played with my grandchildren, and learned how to sail. And then I relapsed for no good reason and hell returned. As of yet I have been unable to reproduce the first remission.
I beg other doctors to take this to heart. CFS is a real disease, as bad as end stage AIDS or cancer. It is also treatable, but only through trial and error, and even then nothing is guaranteed.
Myalgic encephalomyelitis (ME) is a debilitating condition that can leave those affected bedridden for years. It's linked with as many as 60 symptoms, the most common being a feeling of constant exhaustion — 'like a dead battery'.
The condition first reached mainstream consciousness in the Eighties following outbreaks in New York and Nevada. By then it was officially known as chronic fatigue syndrome (CFS).
For a time, it seemed everyone knew someone who was affected by it, and it was derisively dubbed 'yuppie flu' because it seemed typically to affect young professionals.
For years there's been a long-running and bitter debate between doctors and patients about its cause and how to treat it.
The lack of a clear physical cause meant many doctors dismissed it as all in the mind. This infuriated patient groups who insisted it was all too real and the result of an infection or immune system failure.
Even now, when it is generally accepted that ME/CFS is a genuine condition, it remains one of the most angrily contested areas of medicine. But the battle lines are no longer drawn just between patients and doctors: the medical community itself is at loggerheads.
The recent article by Chu et al. contrasted different case definitions that have been used to describe chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME).
In particular, their study compared the new Institute of Medicine (IOM) criteria for systemic exertion intolerance disease (SEID) with three other ME and CFS case definitions.
We appreciate these investigators attempting to use and operationalize the new IOM criteria; however, we disagree with their main conclusion that the percentage of patients selected by the IOM criteria is comparable to the percentage selected by other research case definitions.
This conclusion could potentially encourage investigators to use the IOM criteria for research purposes. In this commentary, we discuss our observations of the Chu et al. article with respect to their methodology, illustrating how the conclusions of an investigation can be influenced by the manner in which case definitions are operationalized.
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.
David, from Upton, set up the charity Rock Off Fibro after his wife Jackie – a fit and healthy long distance runner – was struck down by the incurable condition which has left her needing to use a wheelchair for the rest of her life.
Following a successful music concert back in April, David wanted to continue to raise awareness of the condition and came up with the idea of the art exhibition having received donations of artwork from fellow sufferers and artists.
As a renowned Stanford scientist, Ron Davis has a deep appreciation for the power of modern medicine.
And yet an explanation for the disease afflicting his own beloved son eludes him.
Son Whitney, 33, suffers from such severe Chronic Fatigue Syndrome that he is bedridden, unable to eat or speak. The handsome man was once a photographer and adventurer. He traveled through the United States, studied Buddhism in India and Nepal, lived in an Ecuadorian rainforest and ran a campaign office for former president Barack Obama. Now he’s returned home to Palo Alto for 24-hour care.
So his father has set out to find the reason behind his mysterious condition — believed to affect 2 million Americans — convinced that science has an answer, and that knowledge will lead to a cure. He is also giving new hope to others.
ME/CFS Australia (SA) Inc Co-Signs International Open Letter
South Australian news
Monday 14 August 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.
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
A new survey suggests chronic fatigue syndrome may be far more prevalent in Canada than previously thought, and more widespread than many more well-known conditions.
The suggestion is based on a Statistics Canada survey in which respondents were asked whether their doctor had diagnosed them with chronic fatigue or its more recently introduced name, myalgic encephalomyelitis (ME). The survey shows some 560,000 Canadians report that they have the disease -- a 36.7 per cent increase over previous results from 2014. The number also suggests the disease may be more common than breast cancer, Parkinson's disease and multiple sclerosis combined.
Advocates say the results are a call to action for federal and provincial governments, whom they say need to step up their funding for chronic fatigue research.
South Australian Health and Medical Research Institute (SAHMRI)
Research participants wanted
Chronic fatigue syndrome: Leptin, interleukin 6 and clinical symptoms.
What is Chronic Fatigue Syndrome?
Chronic fatigue syndrome (CFS) is characterised by a constellation of symptoms in previously healthy and active individuals.
Because of these symptoms, quality of life of people with CFS can be extremely compromised. While the search for a clear-cut cause remains elusive, we believe that we can make a major contribution to a person’s quality of life by elucidating the biological basis of their clinical symptoms.
If the biology underlying the disabling symptoms of CFS is elucidated, we will be able to target treatments aimed at symptomatic improvement.
What is the purpose of this study?
To evaluate the relationship of the hormones (cytokines) Leptin and Interleukin-6 on the symptoms of Chronic Fatigue Syndrome. We can test these by using a blood sample. We are also embarking on the development of a genetic database for CFS.