Mailing address: GPO Box 383,
Adelaide,
South Australia 5001
Office: 266 Port Road,
Hindmarsh,
South Australia 5007
Ph: (08) 8346 3237
('834 MECFS')
Office Hours:
Wednesdays, 10am-3pm
Support Line: (Mondays
and
Thursdays,
10am-3pm)
Ph: (08) 8346 3237
SA country callers:
Ph: 1300 128 339
(local call)
FIBROMYALGIA HELP:
Contact Fibromyalgia SA
at the Arthritis Foundation of SA
118 Richmond Road,
Marleston 5033
Ph: (08) 8379 5711
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 the various research projects, diets, medications, therapies 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.
SOUTH AUSTRALIA ME/CFS Australia (SA) Inc
Postal address: GPO Box 383, Adelaide 5001
Address: 266 Port Road, Hindmarsh, Adelaide 5007
Phone: (08) 8346 3237 ('834 MECFS')
Support line: (08) 8410 8930 or 1300 128 339 for country callers
Web: www.sacfs.asn.au
Email: sacfs@sacfs.asn.au
To further assist busy medical practitioners, Dr Bruce Carruthers, principal author of the ME/CFS Consensus Document and Co-Editor of the FMS Consensus Document, and Marjorie van de Sande, Consensus Coordinator of the Consensus Documents, have written and published Overviews of the Canadian Consensus Documents for ME/CFS and FMS independent of any organisation:
Abstract: Aims: Diagnosis and treatment of fibromyalgia syndrome (FMS) currently focuses on the experience of widespread pain. However, the symptom experience described by patients with FMS in clinical practice is far more diverse.
This study aims to identify the most common and severe symptoms in female patients diagnosed with FMS.
NEWSBRIEF: After being rejected 2 years ago, the drug that many thought would become the first FDA-approved treatment for chronic fatigue syndrome (ME/CFS) apparently isn't off the table. Hemispherx Biopharma Inc. says the FDA has granted an extension that could allow them to make another run at getting Ampligen (rintatolimod) approved.
Here's a little about how the process works: drug companies trying to get a new product approved submit a New Drug Application (NDA) to the FDA. A rejection doesn't mean, "No, go away." It's more of a, "Not based on the current application." When Ampligen was rejected in December 2009, the FDA detailed for the company what more it would need in order to strengthen its application. The company then has a limited time to submit information under the NDA. Ampligen's NDA was due to expire, but now the company has more time to get information in without having to start a new NDA.
Being a UK citizen has some disadvantages when it comes to considering the incredible mess that has been made of solving Chronic Fatigue Syndrome (CFS).
Having the National Health Service (NHS) means that the importance and influence of medical/disability insurance is not always so readily appreciated.
Though it may seem contradictory, I believe this may make the UK an attractive target for insurance companies should they wish to exert influence over CFS policies. This is because in countries like the USA, although insurance companies may already have established links to healthcare providers, those providers in turn, probably have knowledge and experience of the kind of pressures that vested interests could exert. Forewarned is forearmed, as they say.
In the UK, however, doctors may see patients with insurance claims as a small minority of their medical practice. They may encounter pharmaceutical company reps on a daily basis, and be familiar with the strategies they employ. But they may be less prepared to notice, let alone look for, opinions that could be influenced by the vested interests of health insurance companies. This may be especially so when such influences reach them indirectly; i.e. via medical journals or the media.
Mother suffering debilitating condition tells of verbal abuse distress
Saturday, January 21, 2012
A Wells disabled mum subjected to harrowing mimicry and taunts from members of the public has made an impassioned plea for tolerance and understanding.
Gemma Hall has fibromyalgia, a debilitating condition which leaves her with chronic and severe pain and profound fatigue.
It affects the 27-year-old’s walking style and she often uses a mobility frame or scooter.
But Gemma’s determination to lead as normal a life as possible for herself – and her eight-year-old daughter Bethany – has been left distressed by the cruel jibes of members of the public.
Danish photographer Thilde Jensen came to New York City in 1997. Six years later her life and career was cut short by a sudden development of severe Multiple Chemical Sensitivities (MCS). The urban life she had previously navigated with ease transformed into a toxic war zone. Her immune system crashed, forcing her unto a survivalistic journey, unravelling the comfort and construct of her previous life. The ensuing years were a lesson in basic survival – camping in the woods, while wearing a respirator when entering supermarkets, doctors’ offices, and banks. To her surprise an otherwise invisible subculture of people emerged who shared this isolated existence. Her photographs are a personal account of life on the edge of modern civilization as one of the human canaries, the first casualties to a ubiquitous synthetic chemical culture. Of her series ‘Canaries’ Thilde writes:
I got an eReader for Christmas, and not only do I love it, I've discovered several benefits for someone with fibromyalgia or chronic fatigue syndrome.
Convenience. If you've got insomnia, like me, it's great to be able to download a book at 2 a.m. It also saves you a trip to the store, which can be taxing for us.
Light weight. My hands often get achy from holding onto a book, especially a heavy one. My eReader is easier to hold, and when my hands get tired, I can lay it on a lap desk or prop it up on a pillow - something that doesn't work with a book.
Search feature. How often does brain fog strike while you're reading? I frequently find myself coming across a name and not being able to remember who that character is. Now, I can do a quick search and refresh my memory.
Less clutter. We certainly don't need more stuff laying around, gathering dust (which many of us are allergic to.)
Of course, there are some possible drawbacks to consider. eReaders are expensive to buy, but if you read a lot you'll eventually save money because books are cheaper. You do have to learn the technical aspects, which can be difficult for the foggy headed. If you aren't tech savvy, you might want to have someone show you how to navigate. I haven't had any eye strain from the screen, but I know some people do better with paper. For me, since it's not lit up like a computer screen, it's a nice relief from my laptop or the TV.
Allison MacColl, a nurse and
mother
from the Isle of
Lewis
who suffers from ME
and features on the new
BBC
ALBA documentary.
Toxic Tiredness examined on TV
Published on Friday 20 January 2012 12:15
WHAT it is like to have an illness which makes sufferers feel so tired they can’t put one foot in front of the other, or even drink a glass of water, and which many doctors don’t believe even exists, is examined in a new two part BBC ALBA documentary: An Sgiths Nimheil (The Toxic Tiredness).
ME (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome, now affects around 250,000 people in the UK – including a number of islanders – but medical opinion remains split over its cause.
It is characterised by severe fatigue that can leave sufferers unable to continue with normal life.
Some claim its roots are purely physical, occurring post-virally, others believe that psychological triggers are involved.
The truth is unclear and there are wide divisions between the different schools of though, all explored through the new Trusadh documentary.
Authors link personal experiences with fibromyalgia in latest issue of Fibromyalgia & Chronic Pain LIFE™ magazine
January 10, 2012
The January/February 2012 issue of Fibromyalgia & Chronic Pain LIFE™ magazine is now available in print and digital versions, featuring articles on obesity and exercise by authors with fibromyalgia who have both personal and professional experience with the contentious topics.
In her article, “Testing the Link Between Obesity and Fibromyalgia,” author Jean McMillan, who describes herself as “someone recovering from obesity and suffering from fibromyalgia,” interviews several patients and prominent physicians to discuss recent studies that beg the proverbial chicken-vs.-egg question: does obesity cause
fibromyalgia or vice versa?
With exercise also playing a major role in the ongoing obesity and fibromyalgia debate, noted researcher and professor, C. Jessie Jones, PhD, offers her article, “Strategies to Stay Motivated for Exercising in the New Year.” Diagnosed with fibromyalgia in 1998, Dr. Jones writes, “My intention for writing this article is to share strategies that worked for me to once again be physically active when it was the last thing I wanted to do in my depressed, painful, and fatigued state after being diagnosed with fibromyalgia and chronic fatigue syndrome.”
The Society's first seminar for 2012 will be held next Saturday (4 February).
