| Riverland meeting reminder |
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South Australian news
Wednesday 10 February 2010
 A reminder that the Riverland ME/CFS Support Group’s next meeting will be held this Friday (12 February) at the Riverland Resource Centre, 9-11 Seekamp St, Berri from 1:30pm to 3:30pm.
All are welcome.
For more information, contact Raelene or Simon on 0449 120 715 or email: riverlandcfssupport@gmail.com.
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| Breaking the ME enigma |
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International news
Wednesday 10 February 2010
 Twenty noted UK people associated with ME/CFS have written an open letter that was published in The Daily Telegraph.
The UK's ME Association reports:
'Breaking the ME enigma' - 20 key figures sign letter in the Daily Telegraph today, 6 February 2010
Saturday, 06 February 2010 07:54
A joint letter appealing to the nation to start taking ME seriously appears in The Daily Telegraph today. It is signed by 20 leading figures in the ME debate – including parliamentarians, clinicians, researchers and figures from the ME national organisations and patient support groups.
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| Inpatient program swamped by children with chronic fatigue |
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Australian news
Tuesday 9 February 2010
 Australian newspaper The Age reports on unprecedented demand for a Melbourne CFS inpatient program:
Inpatient program swamped by children with chronic fatigue
JILL STARK
February 7, 2010
A surge in diagnosed cases means desperate families are waiting months for specialist help.
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| SHUT OUT: The Experience of People with Disabilities and their Families in Australia |
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Australian news
Monday 8 February 2010
 The National People with Disabilities and Carer Council has published a report on the experiences of people with diabilities and their families in Australia:
SHUT OUT: The Experience of People with Disabilities and their Families in Australia
National Disability Strategy Consultation Report
prepared by the National People with Disabilities and Carer Council 2009
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| The hallmark of CFS |
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International news
Sunday 7 February 2010
 From the CFIDS Association of America:
Post-exertional malaise is a cardinal feature of CFS that distinguishes it from many other conditions.
A study funded by the CFIDS Association and published by researchers at University of Pacific describes this consequence of modest physical and/or mental activity experienced by most, CFS patients.
Scientific director Suzanne Vernon, PhD, also describes how exercise challenges that provoke post-exertional malaise are being used by other research groups to further our understanding of CFS.
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| Does muscle bioenergetic abnormality cause peripheral fatigue in ME/CFS? |
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International news
Saturday 6 February 2010
 ME Research UK has an article about new research investigating a possible cause of fatigue in ME/CFS:
Does muscle bioenergetic abnormality cause peripheral fatigue in ME/CFS?
In the historical literature, the hallmark of myalgic encephalomyelitis (ME) was marked muscle fatigability often in response to minor degrees of exercise. Muscle cramps, fasciculations (twitching) and extreme muscle tenderness were also common findings. As Dr Ramsay said in the Postgraduate Medical Journal in 1978, “This was sometimes obvious as the patients winced even on light palpitation of the affected muscle; but much more frequently it took the form of minute foci of muscle tenderness which had to be carefully sought and for no ostensible reason were generally found in the trapezii and gastrocnemii. ”
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| ME case study: 'She told me that she did not want to carry on' |
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International news
Friday 5 February 2010
UK newspaper The Independent has an article about teenager Kate Charles:
ME case study: 'She told me that she did not want to carry on'
The mother of an ME sufferer tells Cahal Milmo how the condition debilitated her daughter
At the age of 11, Kate Charles was a promising schoolgirl. Her aptitude for English was such that her teachers said she was ready to sit her GCSE five years early. Then, after a routine tonsil removal, a downward spiral of debilitating symptoms slowly turned this bright energetic child into a bedbound and despairing sufferer of chronic ME.
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| They told dying daughter she was lying, says ME mother Criona Wilson |
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International news
Thursday 4 February 2010
 The UK's Times Online has an article about the difficulties faced by Criona Wilson (pictured) and her daughter, Sophia Mirza:
They told dying daughter she was lying, says ME mother Criona Wilson
As Criona Wilson knelt beside her dying daughter’s bedside, she promised her that her death would not be in vain. Before the frail body of 32-year-old Sophia finally succumbed to the medical complications and ravages of ME, she replied in a whisper: “Then it’s all worth it.”
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| Dr Reeves departs major US CFS research program |
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International news
Wednesday 3 February 2010
 The CFIDS Association of America's Facebook Group reports on the departure of Dr William C Reeves (pictured) from the CDC's CFS Research Program:
Change of leadership announced for CDC's CFS Research Program
The U.S. Centers for Disease Control and Prevention (CDC) has announced that Dr. William C. Reeves, head of the agency's CFS Research Program, will be taking a new position within the agency effective Feb. 14, 2010 and that he will no longer lead the agency's CFS research. Dr. Elizabeth Unger will serve as acting chief of the Chronic Viral Diseases Branch, the unit within CDC that houses the CFS Research Program. On Feb. 14, Dr. Reeves will begin an assignment as Senior Advisor for Mental Health Surveillance in the Public Health Surveillance Program Office within the CDC's Office of Surveillance, Epidemiology, and Laboratory Services.
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| Wii Fit |
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International news
Tuesday 2 February 2010
 Although exercise is a big no-no for many people with ME/CFS (see yesterday's article), at least some physical activity is recommend.
Joey on her Newly Nerfed blog suggests trying a Wii Fit:
Wii Fits into CFS exercise plan
Wii Fit is an exercise game in which you stand on a specially designed balance board and perform activities from four categories: Yoga, Strength Training, Balance Games, and Aerobics. As you play, you unlock new games and exercises as well as more options for the current ones. The game also keeps track of your weight goals and allows you to keep an exercise journal, including activities aside from Wii Fit.
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| Exercise bad for ME/CFS? |
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International news
Monday 1 February 2010
 Art Ayers has written an article about the research showing the adverse effects of exercise for people with ME/CFS:
Exercise Bad for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis?
Recent research shows that CFS/ME elevates expression of inflammation genes, so that even minimal exercise can seem like a marathon.
CFS/ME, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, is an inflammatory disease, but unlike many other inflammatory diseases that display high levels of inflammatory cytokines, this disease shows elevated levels of the receptors for the inflammatory cytokines. Enhanced receptors may explain the enhanced sensitivity of people with CFS/ME to the exercise-induced inflammatory cytokine, IL-6.
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| The Music Works |
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South Australian news
Sunday 31 January 2010
 The Music Works – aka The Dynamic Day Gig – is a monthly event held at the Governor Hindmarsh Hotel. It's organised by and for people with disabilities.
The next edition of The Music Works will be this Tuesday (2 February 2010) from 10:30am to 2:30pm.
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| Ten ways I prevent CFS from stealing my mental health |
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International news
Saturday 30 January 2010
 EmpowHer's Jody Smith has an article about strategies she employs to help cope with CFS:
Ten Ways I Prevent Chronic Fatigue Syndrome From Stealing My Mental Health
When your body betrays you with a long-term disabling illness like Chronic Fatigue Syndrome, it's important to guard your mental health. Some days it's all you have.
Here are ten strategies that have helped me shore up my mental health with hope, over the course of my marathon with CFS.
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| Debunking myths |
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International news
Friday 29 January 2010
 About.com's Adrienne Dellwo has an article about the ways people can combat the perception of Fibromyalgia and CFS as mere laziness:
Debunking Myths: Fibromyalgia & Chronic Fatigue Syndrome are 'Laziness'
Of the many myths about fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), this is probably the most hurtful: the belief that people with these conditions aren't sick at all, but are just lazy.
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| "Doctors, school, friends thought I was faking CFS" |
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International news
Thursday 28 January 2010
 The UK's Times Online has an article about Nicola Warner (pictured) and the current state of ME/CFS in the UK:
‘Doctors, school, friends thought I was faking chronic fatigue syndrome’
As the trial of Kay Gilderdale puts ME back in the spotlight, we ask why more is not being done to help sufferers
Penny Wark
It says a lot about the public perception of myalgic encephalomyelitis (ME) that it is a surprise to find that Nicola Warner is lively, positive and talks a lot. That’s the initial impression anyway. It’s only when you spend a little time in her company that you notice a certain stillness or perhaps sadness in her face and it becomes obvious that she is not entirely well.
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| More news… |
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