http://www.masmith.inspired.net.au/aus_info/aus_info.htm
Support groups | Advocacy news and articles |
RESEARCH - Newcastle, Adelaide | Sydney researchers
RACP CFS Clinical Practice Guidelines and more
Penpals, mailing lists & places to talk
Support
Group Directory - organisations, groups and contacts in Australia (and NZ).
ACT ME/CFS Society (Canberra)
A short history of ME/CFS advocacy in Canberra - by Judy Goyen: how the
ACT ME/CFS Society was founded 20 years ago
Toxic
cabin fumes in jet aircraft - the BAe146 Senate enquiry in Australia,
and reports from around the world
ME/CFS/FM
Awareness Week Rally - Parliament House, Canberra, May 10 2000
"Welfare
reform", the world of work and the need for understanding by Ron Fraser (2000)
Jim
Pearce MP on the insurance industry’s biased handling of CFS claims
(2000)
Internet
advocates win Hamilton campaign - island resort's offensive
advertising (1999)
Australia/NZ
Treatment and Research Links
Australian research abstracts
Adelaide
Research Programme - go to the Alison Hunter Memorial Foundation website to
read about proposed research into CFS/FM by Dr. Peter del Fante, Assoc. Prof.
David Torpy and Dr. Richard Kwiatek, and how to support it.
New
discoveries about cerebral blood flow - FM research by Dr Richard
Kwaitek's team at the Queen Elizabeth Hospital, Adelaide. (2001)
Exciting
research in Fibromyalgia - Dr Richard Kwaitek interviewed on
Adelaide's Radio 5RPH (2001)
Adelaide
lactic acid research - research by Prof. Garry Scroop and Dr Richard
Burnet at Adelaide University (1998 onwards)
Links to more information about Adelaide Research
Abstracts
Chronic
Pain and Chronic Fatigue and Related Disorders - by Assoc. Prof
Tim Roberts (2000)
Staphylococci
and CFS/FM (1998, with updates to 2002)
Interpreting
the Bioscreen tests by Dr Gary Deed (1998)
CFS
and the Gut Bugs (1997-98)
Links to more information about Newcastle Research
Abstracts
Note: The article on CFS research and testing at Newcastle University has been deleted. You can find up-to-date information on Getting tested on the Bioscreen website, including a downloadable testing protocols booklet with instructions, request form and symptom questionnaire.
Five
years' funding for Sydney CFS researchers - National
Medical and Health Research Council announces new grants for Drs Hickie, Lloyd
and Wakefield (2001)
A
Critique of the Sydney Researchers by Ted Shaw
Abstracts
CFS Clinical Practice Guidelines (1998 with updates
to Feb 2003)
"CMO's Report" into CFS/ME published in UK
Canadian Guidelines - Canadian clinical definition and
diagnostic and treatment protocols for ME/CFS, 2003 and FMS, 2004
The CFS Guidelines story
CFS Health
Consumer Perspective by Craig Ellis
Consumer Representative's reports by Craig Ellis
Email penpals page
Aussie/NZ mailing lists, forums and chat - for people with
FMS, CFS and related illnesses
OzME
Help Page with Mailing list HINTS AND TIPS
and useful links for beginners
Articles | Book Extracts and Reviews | True Stories
AUSTRALIAN ADVOCACY NEWS AND ARTICLES - Australian issues. Listed on Aus Info page.
AUSTRALIAN RESEARCH ARTICLES - including information about Newcastle, Bioscreen, Adelaide, Sydney research groups and the Royal Australasian College of Physicians CFS Guidelines. Listed on Aus Info page.
School and kids with CFS - helpful ideas for children with a chronic illness and their parents. Mary Campbell offers advice from her own experience on surviving school from primary through college.
The FAST RED test - can the new Belgian test for low molecular weight RNaseL enzyme diagnose CFS?
RNaseL research update 1999: The Molecular Biology of Needing a Bit More Nookie - Dr Barratt, a NSW pathologist, explains the research findings on RNase-L presented at the 1999 Second World Congress on CFS and Related Disorders.
Multidisciplinary pain management and the "bio-psycho-social" explanation for chronic pain and illness. How an enlightened treatment regime for pain became the psychiatrists' favourite prescription for CFS. See also A CFS sufferer's experience of multidisciplinary pain management.
Pacing v Graded Exercise compared - with quotes and comments.
Information
sheets by Dr Ellie Stein.
Patient
info: Energy Management in CFS/FM; Sleep and CFS/FM; Orthostatic
Intolerance; How to Measure your Blood Pressure.
Information
for doctors: Autonomic Function in CFS; Cognitive Function in CFS;
Cardiovascular function and exercise in CFS.
Was it something you ate? by Sabine Spiesser. 20-30% of people with CFS may experience reactions to food. Information on allergies, intolerances and other reactions, from an Australian dietician.
Ambrotose
and Beyond: Dr Darryl See and Mannatech
(revised and updated version of Ambrotose
Study was a Fraud: Mannatech sues discredited researcher), by
Moira Smith.
Fibromyalgia and CFS - what is the Connection?. Opinions from many experts compiled and compared, by Moira Smith. And some new research pointing to some differences.
Know your enemy - Personal observations on the "rehabilitation model" of chronic pain, by Moira Smith.
Coping with CFS: A Guide to the Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. This is the text of a booklet produced by the ACT ME/CFS Society.
Kinesiology - an introduction by Peter Llewellyn, Canberra counsellor and Kinesiologist
Finding a good doctor - advice from former Canberra FM Self Help Group leader, Janine Jeffreys.
The CFIDS & Fibromyalgia Self-Help Book by Bruce Campbell - reviewed by Gregory L. Carr. "This book for CFS/FM sufferers reflects Dr. Campbell’s careful consideration of the experiences of the many hundreds of people who have taken his course, The CFIDS/FM Self-Help Program.
Unraveling a medical mystery. A review of Heather Stott's book, Active Again: Clearing my Chronic Fatigue and Coeliac Minefield, and information on Coeliac Disease. "MY STORY MAY BE ABLE TO HELP YOU. IT IS A STORY OF HOPE" says the author.
Faces of CFS: review of the book by Dr David S. Bell, with quotes.
Kathy Brown presents extracts from her book Soaring with Spirit: Toward the Healing of Body and Soul - "I have worked hard on trying to understand why I became ill and what I needed to do to regain my health. In an effort to understand, I wrote." Many will identify with Kathy's emotional journey ...
Invisible chronic illness and relationships - extracts from Sick and Tired of Being Sick and Tired: Living With Invisible Chronic Illness, by Paul J. Donoghue, PhD & Mary E. Siegel, PhD. Relationships with loved ones become difficult when one of the family is sick and looks well. Sometimes the very people who we turn to most for support are unable to understand what we are going through ... and they have their needs too.
Coping with Chronic Pain - extracts from Back on Deck by Wayne Tickner, who believes that: "With the right information and the right attitude life can be good again, in spite of ongoing pain". In these extracts the author discusses frustration, making changes, accepting help and viewing your life positively.
One Day at a Time - a chapter from Mary Jahne's autobiography The Bitter and the Sweet, in which she tells how she came to terms with living with CFS. Moving and inspirational ...
Excerpts from Energy in the Red: Living with Chronic Fatigue Syndrome by Jacqueline Finch. The excerpts are about getting a diagnosis, communicating with your doctor, what to do about exercise, and coping with other people's reactions to CFS.
Fibromyalgia and Chronic Myofascial Pain Syndrome - from the best-selling American book Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survival Manual by Devin J.Starlanyl M.D. and Mary Ellen Copeland M.A.,M.S. This extract explains what myofascial trigger points are, how they cause pain and other symptoms, and how this interacts with fibromyalgia.
Medications for Fibromyalgia - an excerpt from the 2nd edition of Fibromyalgia and Chronic Myofascial Pain: A Survival Manual by Devin Starlanyl and Mary Ellen Copeland. Adapted for this website with Australian drug brand names.
Coping with Fibromyalgia and Chronic Fatigue - an excerpt from Miryam Erlich Williamson's book Fibromyalgia: What you can do about Chronic Pain and Fatigue. (Now published in an Australian edition by Unwin and Allen.) Topics covered in this extract are: Maintaining Good Emotional Health, Listening to Your Body, and Troubleshooting Fibromyalgia.
You and your Medical Team - from Miryam Erlich Williamson's second book, The Fibromyalgia Relief Book: 213 Ideas for Improving Your Quality of Life. This extract is about finding and communicating with your doctor.
Living with FMS - This chapter from Teresa Kruckenberg's book When the Pain is Real! Fibromyalgia: the Chronic Muscle Pain Syndrome deals with adjusting to life with chronic illness.
(For more true Australian stories on other people's websites, go here.)
Friends and Kindness - by Mary Campbell. "I’ve had so many less than helpful reactions to me explaining my illness for the first time ... They judge me, criticise me, attack me psychologically, or want nothing to do with me. Every time, it hurts ... " But sometimes, we find understanding: "There are special people out there, who will value you, who will see something worthwhile behind the restrictions and problems associated with illness."
Lyme and CFS: Rosemary's story - "In 1979 I was healthy when I married my first husband. He had a rash in one armpit. ... I developed a flu-like illness and never recovered." For years Rosemary was told she had CFS. She has now been diagnosed with Lyme disease, which is caused by a tick bite, but in her case seems to have been sexually transmitted.
Travelling with FMS Lyn tells how doing a Self Management course helped her finally come to terms with having Fibromyalgia.
Ricky's Invisible Disabilities Agora has great stuff, including the very famous Open Letter to Those Without a Invisible Disability or Illness ... "things I'd like them to understand about me before they judge me".
ME: Myalgic Encephalopathy or Metabolic Error? - Bronwyn's story. Her "CFS" turned out to be caused by thiamine (vitamin B1) deficiency, and after nine years she is now totally recovered.
Living with CFIDS: Fernando's story - "When one is chronically ill, life enters into another dimension. The world changes. The sky seems to come down and become unbearably heavy. Even the simplest acts of life - swimming, going out, socializing, working - become extraordinary events."
Pain clinic - by Mary Campbell. A cautionary tale - one CFS sufferer's experience of multidisciplinary pain management.
Kare's story - "Everything I ate, everything I touched and everything I did seemed to make me sick."
All about Kit - Kit's story, and some poems: Life in the slow lane, and Living with M.E.
Dealing with chronic, severe pain - Kit shares her experiences and coping tips.
Unexpected Gains from Experiencing a Chronic Illness by Farrah Tate. "Who would I be without this illness? I certainly would not be the Farrah who I am."
Liz's story - "This is my journey in search of healing. I feel sure others will relate to my experiences ... I met a lot of disbelieving doctors and received a lot of advice to get off my butt and heal myself."
A stitch at a time - the inspiring story of how one CFS/MCS sufferer combatted boredom, pain and isolation by teaching herself embroidery from a book - and discovered talents she didn't know she had.
My Story - by Moira.
The new woman inside - Vera wrote her story as "part of my personal grieving for the woman I knew" as well as to to help others in similar situations.
Living on the Riverbank - Anelie writes about being a young person with CFS.
A mother’s world of pain and frustration - Clytie speaks about being a mother with CFS. This newspaper interview was first published in the South Australian Murray Pioneer as a feature for Mother's Day 1998.
"I can see Sunsets" - Clytie tells of the fear, denial and anxiety that this illness brings; dealing with pain; and finding courage and unexpected joys. Plus Clytie's family photos!
The Rollercoaster Ride - a poem about living with CFS, by Nicole.
Nicky's Story - Nicky has had fibromyalgia since her schooldays.
For more true stories on other websites, go to Personal sites and stories on my Australian links page.
QUICK INFORMATION - the basics about CFS and FM symptoms and treatment.
AUSTRALIAN & NEW ZEALAND links - a directory of Australian web sites of interest to people with CFS and/or FM. Includes: Patient advocacy and support organisations, Medical and research sites , Disability information and services; and Personal sites.
Best overseas CFS/FM sites - mainly USA, Canada, UK and Europe.
Treatment & Research links and AUS/NZ Treatment & Research links
Chronic Pain websites - information and support.
Politics of pain relief - a collection of links to articles, guidelines and policy statements arguing for the use of opioid (narcotic) pain medication as part of a compassionate and practical approach to treating chronic pain.
Managing our chronic pain - information on medications, pain management and coping with pain.
More about chronic pain - more technical articles about the causes and treatment of chronic pain.
Medication information - Australian and overseas sites where you find out about drugs and medications.
Helpful Links for mailing list members - advice for absolute beginners, abbreviations and symbols, Netiquette (list etiquette) plus what to do about spam, junk mail and virus warnings.
Disability and advocacy links - Government departments, legislation (including the Disability Discrimination Act), organisations representing people with a disability. From the A.C.T. Disability, Aged and Carer Advocacy Service (ADACAS)
Accessible website design links.