ME   ::  Myalgic Encephalomyelitis
  CFS  ::  Chronic Fatigue Syndrome
  FM   ::  Fibromyalgia
  MCS ::  Multiple Chemical Sensitivity

ABN 67 476 925 016   ME/CFS/FM Support Association Queensland Inc..
Tropical North Queensland Support Group
No 20, November 2008.Newsletter.

Phone (07) 4091 2970   Email: reynoldsn@dodo.com.au
    Website: http://au.geocities.com/me_not_cfs/

Greetings.
We hope your health has improved since the last Newsletter.

What is ME/Chronic Fatigue Syndrome (ME/CFS)?
Myalgic Encephalomyelitis (M.E.) also referred to as Myalgic Encephalopathy, Chronic Fatigue Syndrome, Chronic Post-Viral or Post-Infectious Fatigue Syndrome and Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), is a serious, very debilitating and complex illness that affects multiple systems in the body. Although chronic fatigue is a very common health problem, ME/CFS affects between 0.2 - 0.4 % of the population with a higher rate in females (0.37%) than in males (0.087%). One in 116 women aged 50 to 59 years is affected (a higher rate than cervical cancer) and one in 3000 Australians is severely ill with ME/CFS. As the underlying pathology of ME/CFS is not yet completely understood, there is no single diagnostic test and no known cure. Research is currently directed towards understanding the roles of persistent infection, neurological abnormalities, genetic factors, cardiac abnormalities, genetic factors, gut dysfunction, metabolic disturbances, stress and toxic exposures in causing and/or perpetuating ME/CFS.

CFS OFFICE
We still need volunteers to print and distribute this Newsletter, and also a research volunteer to collect information for the Newsletter and for general enquiries.
Neil has had a health relapse and has been unable to continue providing support at the previous level.
In an effort to hold this group together, two meetings will be facilitated before the end of this year. See below for information.
At this time, the office is not open regularly. If you phone, please leave your name and number, and your call WILL be returned as we are able. If you have requested information and support and are still waiting, please call again so we can attend to your requests.

CONTACT UPDATE
This support group offers information by phone or mail or email, support by phone or personal visit, advocacy and referral, and access to your local contact.   We've got you covered !

SUPPORT GROUP CONTACTS.
Please check the list below, as there have been some changes to the usual contacts. Once again, we thank all who have made themselves available, and those who have had to stand down.
PLEASE: We NEED a new volunteer to be available as the Cairns contact from January 2009.

MEMBERSHIP
The Queensland Association can only operate successfully if we join with them as financial members. It doesn’t cost much, and you will be supporting the CFS network and State Newsletter.

  NEWSLETTER
  • Contributions to this newsletter are always welcome: recipes, jokes, personal stories and victories etc.
  • If you don’t require this Newsletter, please mark it “return to sender” and post it back to us.
  • Please let us know if you have email. It will save us postage.

DONATIONS
We need donations to cover office and Newsletter expenses. They can be paid direct into our Bendigo Bank account. BSB 633-000 A/c No 114 607 336. Your support ensures our financial survival.

  Useful CFS WEBSITES:
Queensland Association websitewww.users.bigpond.com/mefmtba/
The Australian Society websitewww.mecfs.org.au
Victorian Society websitewww.vicnet.net.au~mecfs
NSW Society websitewww.zip.com.au/~mesoc
LOCAL CONTACTS
Please feel free to call local contacts:
Atherton:Neil Reynolds4091 2970email
Cairns:Volunteer pleaseVacantemail
Cardwell:Joy Dickson4066 0178email
Gordonvale:Volunteer pleaseVacantemail
Innisfail:Gwen Hammerton4063 2334email
Lake EachamJohn Cuff4095 3063email
Mareeba:Christel Venturi4092 3287
Mossman:Volunteer pleaseVacantemail
Ravenshoe:Volunteer pleaseVacant
Smithfield:Peter Cummins4057 5920
Townsville:Ashley Hinds4778 3560email
OR;- if there is no group near you, you may wish to become a contact. Please advise Neil ASAP.

Disclaimer: Please note that information provided is given in good faith. No Liability will be accepted, as the information is not intended to replace professional medical help and treatment.

Copyright: Information provided by this group has been given for the education and training of the disabled. This material may be subject to copyright, and as such, the user is only permitted to retain documents for their own use. Any other use or copying must be approved by the copyright holders.

Chemicals: Many people attending our meetings are sensitive to chemicals and scents. For the comfort of others, please refrain from wearing perfumes or strong scents. Please do not bring agricultural chemicals or tobacco odours to the meetings.

MEETINGS
We have scheduled TWO meetings.
One on the coast and one on the Tablelands.

ATHERTON:8th November 2008-10-23
WHERE:ANC meeting room, at the rear of 38 Mabel St Atherton.
TIME:10 am
Meeting/discussion
CAIRNS: 13th November 2008
WHERE: 302 Gatton Street, corner Bosanko St. (at the rear of the S.D.A. Church).
TIME : 4:00 pm
Meeting/discussion followed by nutrition presentation and cooking demonstration.

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Leigh Hatcher LIFE STORIES -
BIG PICTURE by Anna Thompson

Trials can often bring us to a deeper understanding of ourselves and those around us. Media personality Leigh Hatcher reveals how his journey through the wilderness of chronic fatigue syndrome has led him to fresh perspectives, an enlarged view of God and the launch of a powerful online support group for chronically ill people. It's been said there are two types of people with two different philoso­phies on how you look at life. For some, it's in the details, for others it's in the bigger picture. Leigh Hatcher, is a "big picture" person. That's not to say the details go unobserved, or that they're unimportant to him, but for broadcast journalist Leigh, 51, there is always a bigger picture taking shape.

Perhaps it's a quality we're born with, perhaps it comes with age, or perhaps it emerges out of living through some defining experiences that caused you to stop, reflect, analyse and reevaluate what life is all about. Leigh's been through some of those in his time, and he freely admits they have changed him. His philosophy is self-confessed: "Most of our lives are lived looking at what I call a snapshot view of life - what is happening today, without thinking about tomorrow and what's ahead and where is the reason. And God knows that, and God finds it [the reason] and it's always for our good ... I am a person who sees a lot of my life included in the much bigger picture."

It's this last role that Leigh says he relishes the most in the whole of his distinguished career. "I really love my job more than I have any other. It's very interesting; I have had really great opportunities and great experiences. I enjoy the type of work, I enjoy the pace of the work, I enjoy the immediacy of the work and I enjoy the company of the person I read with. We get on like a house on fire."

While Leigh has juggled these roles energetically for the past seven years, prior to that he went through a life-changing, two-year period in which he found himself queuing for welfare benefits, rather than breaking news stories. Amid Leigh's exhaustive media activity, he was suddenly, and bafflingly, struck down by the onset of chronic illness. While on holiday on the NSW Central Coast with his wife and four children, he distinctly remembers the time and date his journey began "into the wilderness" of chronic fatigue syndrome (CFS). At 3pm on 19 January 1998, Leigh woke from his routine 10-minute afternoon nap following an active day on the beach, two hours later than usual and feeling like he'd been hit by a truck.

"The whole thing started at that moment. I was just living my same old, vigorous, normal, happy and enthusiastic life, up until then, and I woke up feeling just terrible. And that turned out to be a viral hepatitis, and that was the start of my saga with chronic fatigue syndrome."

While Leigh says he feels he has recovered 95% of his health now, for two years his whole life was turned upside down. The illness impacted on every facet of his life — his career, his family, his faith, his sense of self, and even his hobbies. The physical nature of CFS can manifest in many different ways, but for Leigh, his doctor says he experienced all the classic symptoms.

"If you imagine yourself with a really bad dose of the flu, where all your body aches, and if you combine in with that, in my case, wave after wave of blood sugar crashes, that's what it felt like. I used to often say, I just felt toxic, as if there was something toxic flowing through all my veins."

Further, Leigh says that a doctor in the United States who specialises in CFS and AIDS, describes a CFS patient on a bad day as being similar to an AIDS patient, two months before they die.
"Not every day was like that for me," he says, "but there were days when I would lay in my bed and I'd wonder if this is what it actually feels like to die. It just hurt so much."

Adding to the physical pain was the emotional trauma of personal losses such as his job with Channel 7 which he could no longer maintain, his self-confidence, and being able to participate in the active pursuits he so enjoyed. Adding yet further burden was the intensely hurtful "baggage" that Leigh says comes with CFS, of it being considered by some as an illness in the mind, or a "lazy person's illness".

"You're really ill," he stresses, "you're as ill as I've just described, and even in the midst of that, you have many people at the very least misunderstanding, and often misjudging, the reality of the illness, and therefore the reality, or really the truth, of your experience.

"When you lose so much, not only of your health, and when it hurts so much ... to be considered as someone who has just copped out, or freaked out, or who is a fraud — because that really is often the kind of logical extension of what some people would say about CFS — it becomes a very, very diminished and alienated world." Leigh reveals that he became depressed for a few months, and the periods in which he trialled anti-depressants were either detrimental to his motivation or physically the worst of his two-year battle.

Adding yet still another layer to what he describes as "suffering upon suffering", was the disruption to family life with his wife Meredith and four children, who were all teenagers at the time. Life as they had always known it was suddenly and forcibly changed, and roles and relationships with it — they too felt losses. Further still, Leigh acutely felt the loss of some friendships, which didn't survive the level of acceptance and understanding that he needed through this time.

A Faith that Sustains

Leigh is quick to point out that at no time did he lose the faith he's held since being a teenager. In fact, it was quite the opposite, and he says it was his faith that sustained him through this upheaval.
"I can honestly say, I was never angry with God and I was never in despair — neither doubting if God is either there or looking after me. I never lost hope, never lost a sense of that bigger picture and never lost the sense of the goodness of God, the kindness and mercy of God and his largeness who works through all things.

"The irony of it all is that in the small picture view of just being at home and in bed for large amounts of every day, God's big picture was blown out and I had this vastly enlarged view of God — [that] God is still here and is working at all levels, so I don't have to be only ever useful... what a liberation."

In his book, Leigh often refers to the Bible's words as steeling him for the trauma he was going through.
"Day after day my personal resources were restocked as I read the Bible, experiencing the same reassurance and comfort that untold thousands have found in it over the centuries," he writes. "From my reading I slowly began to gain a new perspective on the wilderness I was in. Again and again, the Bible records how God uses the experience of the wilderness to shape people for the better. Some of the greatest figures in biblical history, like Abraham, Moses, David, even Jesus himself, knew the wilderness intimately. Sometimes I had a strange sense of being privileged to be in this different zone of life — as if I could learn things here that I couldn't learn anywhere else."

Leigh's passion for Scripture wasn't a new one, having studied "Bible and Missions" at Moore Theological College for a year, but it was an opportunity to re-evaluate his faith. "Now I look back six years after my recovery and see what a deepening of my faith in God that all was, how much stronger it made me under God."

A Voice

Following the painful long year it took to finally get a diagnosis, in his second year of CFS, Leigh followed a suggestion by a fellow CFS sufferer to adopt a diabetic lifestyle. This step was to be the start of a rapid road to recovery. Leigh quickly made breakthroughs in returning to his "normal" lifestyle. Within a week he had registered his freelance company, and less than six months later he was working for Channel 7 as Senior Producer for Olympic Sunrise. Five years down the track, Leigh's first foray into book publishing, with the launch of I'm Not Crazy, I'm Just A Little Unwell, was a successful one. With the book's sales approaching best-seller status, and it winning third prize in the Australian Christian Book of the Year awards last year, the relevance and resonance of the book are apparent.

Leigh didn't feel compelled to write the book for his own cathartic purposes, nor did he feel he had the time to do it, but he did feel compelled to write it for other reasons — to be of some help, support and acceptance for those battling with CFS; to resource those around them; and to give credit where he felt it was due: to God.
Leigh has become Patron for the NSW Chronic Fatigue Syndrome Society, and finds his public media persona is the platform from which he's been able to reach a larger audience.

"I haven't really pursued that position where I become a voice for them. But it's turned out, largely through the book, that I can be a voice for CFS sufferers who are just so often damaged and alienated into such suffering silence. It really is a great thing to be able to say 'this thing is real, and it's devastating, and nobody wants to be there.
"And if I can be a voice for a greater sense of understanding and acceptance, I think my experience will be really well served."

Beyond the book, Leigh is now hosting a web forum for CFS sufferers and related chronic illnesses. "About three weeks after the book was released, there was a huge response to it," Leigh explains. "My webmaster, who was in charge of the book's website, could really see the traffic, and he said I should do something about this, to bring these people together and give them a community in this forum."

"Now there are hundreds of people from all over the world talking to each other online, swapping their stories, their experiences, their highs, their lows, their ups, their downs, their tears, their laughter. It's become a really intimate and remarkable community."

"And one of the great things about it is that it's got a real sense of love and care there, and a really authentic Christian voice — not that everyone there is Christian, and it's not a condition of entry. But ... it's got a really strong and wonderfully hopeful Christian voice, in the midst of great upheaval and disruption and illness. It's an amazing place. "I would've done anything to have some­thing like this in the first year of my illness. When it's so baffling, and so mysterious : and so hard to get a grip on, for me to tap into a community of such love and acceptance but also with such breadth and depth of experience ... it would've been just sensational."

The forum currently has about 500 registered users, and over 50,000 articles posted.
Again, Leigh acknowledges the bigger picture: "There is a much bigger picture than that snapshot in the hour after hour after hour in pain ... it's led to the book, and the book has led to the forum."

Broader still, the book has had a ripple effect, not only touching the lives of those living with chronic illness, but the lives of many who have gone through any major upheaval in their lives.
"What has really amazed me about the response to the book, is how it's spoken to a breadth of people with difficulties, and not just difficulties with illness, but I've had such moving responses to the book from people who have lost children in a miscarriage, suffered alcoholism, suffered depression, suffered marriage breakdown; I mean just as broad as you can imagine."

Today

Leigh greets the world on Sky TV from a fresh perspective. It's one of greater acceptance, compassion, sensitivity and an even greater focus on that bigger picture he so often sees at work in life.

He's ecstatic to have emerged from the upheaval of CFS and returned to his pre-CFS full and busy lifestyle. He strictly adheres to a diabetic lifestyle, which he feels has been the answer for his return to good health, and he's even returned to his active hobbies with gusto — earlier this year he completed the Manly Cole Classic (a 2km ocean swim). He is even contemplating writing a follow-up book to his first.

He freely admits that as he ponders the future, it's a challenge for him to retain some of the spiritual lessons he learnt through the wilderness of CFS. "My goal is on an eternal kind of timeline, so I live this life in accordance with that, wherever God takes me. I think I have seen enough of the changes and chances of this world to just hang a little bit loose for my plans for the future.

I think my great challenge is to keep maintaining the level of dependence on God day to day in the midst of a life that’s busy and distracted and too easily seeming to be self-sufficient. In the midst of my illness, I really learned we are not in control and we are not self-sufficient. So the great challenge remains depending on God for whatever He wants me to do.

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Chronic Fatigue Syndrome (CFS)
According to the globally recognised Centers for Disease Control and Prevention, chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterised by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity.
Persons with CFS most often function at a substantially lower level of activity than they were capable of before the onset of illness.
In addition to these key defining characteristics, patients report various symptoms, including weakness, muscle pain, impaired memory and/or mental concentration, insomnia, and post-exertional fatigue lasting more than 24 hours. In some cases, CFS can persist for years. The cause or causes of CFS have not been identified and no specific diagnostic tests are available. There are no known cures, but some approaches can help.
For more information go to:
www.cdc.gov/cfs
www.notcrazy.net/links

For more information about Leigh Hatcher's experiences with CFS, check out his book website at: www.notcrazy.net or his forum For CFS and chronic illness at: www. notcrazy.net/forum
I'm Not Crazy, I'm Just A Little Unwell, Leigh Hatcher, Strand Publishing, 2005. Cost $19.95 at all good bookstores. Copied with permission, from the Salvation Army publication “Creative Ministry”, pages 8 – 13, April 2007.

Fibromyalgia Syndrome (FMS)
The latest guidelines for medical practitioners have at last been made available.
Photocopies are available by phoning this office.

Multiple Chemical Sensitivity (MCS)
(Incorporating the former Toxic Link support group)
Most of the current information sheets we have are from ASEHA.
There is a constant flow of information on the net, mostly relating to chemicals and the effects on the human body. It will be impossible to list them all.
If this is your area of interest, I strenuously suggest that you subscribe to websites such as www.asehaqld.org.au, or contact them direct at: asehaqld@powerup.com.au or (07) 3284 8742

Mitochondria
For your interest, we enclose an article about Mitochondria from the U.K., and re-presented by ME/CFS/FM Association Qld. This is a newer thought about the structure of chronic illness.
There are some serious suggestions that most of the ailments listed above could be a subset of Mitochondria. Because of the similarities or possible connections, we are currently having discussions about a possible merger with the Mitachondria group.
This could be an explanation or a light at the end of the tunnel for many of our sufferers.

Encouragement
“The physical difficulties of life are only here for a moment. There is life beyond what we have”.
Enquiries and information: Phone Neil 4091 2970

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