Canberra Fibromyalgia
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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.
The Marshall Protocol - interview by Judy Williams with Queensland (Australia) GP Dr Gary Deed about the effectiveness of the Marshall protocol for people with CFS/ME.
Personal experiences of the Campbell self-management course - includes an article by Robyn Harris, facilitator of the first offering of Bruce Campbell's self-help course in Canberra (sponsored and organised by the ACT ME/CFS Society in 2004). "As a community we were able to explore the tough stuff with love, laughter and a beautiful sharing of togetherness."
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.
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, counsellor and Kinesiologist (formerly of the ACT ME/CFS Society).
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.
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.)
Moira's Story
Part 1 - how I got sick.
Part 2 - a "new life", Moira's walking blues, exercise that helps, pain.
Part 3 - dark days; improving , learning to live with it.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.
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 the Australian links page.
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