ME :: Myalgic Encephalomyelitis
CFS :: Chronic Fatigue Syndrome
FM :: Fibromyalgia
ME/CFS/FM Support Association Queensland Inc..Tropical North Queensland Support Group
Newsletter.
No 13, August 2006.
Greetings.
Awareness Week - what a blast !
It was really great getting the support and exposure from the media. With their help, we have had contact with quite a few new people looking for support and answers to their issues.
THANKS- Thanks again to Rosa Lee Long for her support and assistance.
- Thanks to all the organisations that have donated the use of their meeting rooms.
The ABC TV aired a story about CFS in March 2006, too late for the previous Newsletter.
Australian scientists have found that Epstein-Barr Virus causes Glandular Fever.
Professor Andrew Lloyd from the University of New South Wales (and also from the NHMRC), says that
people who go on to develop Chronic Fatigue Syndrome are likely to have suffered trauma to the brain during their illness.
FREE RADICALS - How They Work
An apple turns brown when cut open. Your car rusts and eventually falls apart. Both problems are due to oxidation. Your skin ages and wrinkles, and over time, the cells in your body literally rust and degenerate due to oxidative stress....More
TREATING CFIDS & FIBROMYALGIA:
Strategies for FatigueHaving a long-term health problem like CFIDS or fibromyalgia means learning to live with symptoms that persist. But the absence of a cure does not mean that there are no treatments. On the contrary, there are many ways to alleviate the symptoms of the two illnesses. While treatments don't heal either disease, they can reduce the effects of symptoms and improve quality of life.....More
WINDOWS TO THE SOUL: Iridology
It has long been said that the eyes are the window to the soul. It is easy to see the emotions that shine out through the eyes and so tell how a person is feeling.
Iridology also uses the eyes as a window into the physical body. Much information can be gathered by studying the markings in a person's iris.....More
The Queensland Association needs our support. The Queensland and Australian CFS organisations can only operate successfully if we join with them as financial members.
NEWSLETTER- Contributions to this newsletter are always welcome: recipes, jokes, personal stories and victories etc.
- If you don't want to receive this Newsletter, or are not interested in our health issues, please mark the Newsletter "return to sender" and send it back to us.
- The State Association is no longer able to subsidise our postage, so donations towards the costs of printing and postage are welcome.
- We need to reduce our postage costs. Please let us know if you have email. If you don't have email, but know somebody else who can receive and print the email for you, please tell us.
We have difficulty keeping up with all the needs of coordinating this growing support network. We already have lots of Area Contacts, and a Webmaster. We need some volunteers:-
- A Newsletter editor, and help with distribution and postage of the Newsletter
- Collecting and collating new printed information
Any Volunteers please?
THANKSA very big thanks to Heather Seccull from Gordonvale. Heather seems to spend most of her life on the Internet, so she was asked if she would like to assist us by "capturing" any breaking news that other people might be interested in. This job was too big for Neil, so that is another function taken care of. Heather can be contacted by email : sherseccull@primus.com.au
MEETINGS:Please note: There are a few changes to meetings.
- Ravenshoe: With the success of the May meeting, we will continue to enjoy the hospitality at the private home of Peter and Angela deHaas, 167 River Road, Millstream Estate.
- Cairns: The Training Room at Irelands worked out well. Some folks came from the front of the car yard instead of entering through the rear gate in O'Leary Street. PLEASE park and enter from O'Leary Street: it is so close to the venue! Look for the sign on the footpath.
- Cardwell: Change to Mondays. Meeting will be held at the QPWL Reef and Rainforest Centre 147 Victoria Street.
- Your ideas and input are always welcome for these Support Group meetings. Please advise if you have special needs, or issues you would like to have raised at meetings.
We have had a considerable number of requests to help connect young people. Apologies for the time it has taken to do this. We provide the following information about people, groups, and websites. We can not comment about them or the accuracy of the information. We welcome your feedback, both positive and negative !
- Queensland:
- Gold Coast Young Adults: Janet Green (07) 5530 3924
- Qld Youth Info John Daly johnwdaly@ourbrisbane.com
- Far North Qld: Bulletin Board http://au.oocities.com/me_not_cfs/
- West Australia:
- Chrysalis Gary (08) 9577 2296
- Damien's message board: www.damientonkin.proboards57.com
- Internet chat groups. http://au.groups.yahoo.com/group/mecfswa
- South Australia:
- SAYME (SA Youth with ME) www.sayme.org.au
- Counsellor - Madeleine mesoc@zip.com.au
- Websites:
- Australian site for teens with ME/CFS groups.yahoo.com/sleepyteenzzz/
- Youth with ME/CFS, FM, orthostatic intolerance www.pediatricnetwork.org
- Canadian ME/CFS Youth www.mefmaction.net
- UK Youth with ME/CFS www.ayme.org.uk
- UK Youth with ME/CFS www.tymestrust.org
- USA site for teens with CFIDS http://us.oocities.com/sleepyteenzzz/index.html
- TNQ Support Group http://au.oocities.com/me_not_cfs/
- TNQ Support Group http://au oocities.com/cfs_me_help_tnq
- Queensland Association website www.users.bigpond.com/mefmtba/
- The Australian Society website www.mecfs.org.au
- Victorian Society website www.vicnet.net.au~mecfs
- NSW Society website www.zip.com.au/~mesoc
Peter has arranged a "Forum" for us to post ideas and questions, and to send messages to each other. This is available on the TNQ Website. Simply log in, register, and we can save phone calls and postage !
EMAIL RECIPIENTS:For people receiving this Newsletter by email: this Newsletter is in "plain text" format. If you would like the full printed version, please ask for one at the meetings or from your local area contact.
Legal support:We have developed an Information Kit for people who are faced with a medical examination to prove their CFS is a Disability. Please make sure you ask for a Kit to give to the physician BEFORE you have a medical, to ensure you get a fair assessment.. You could turn a disaster into a victory.
| Please feel free to call local contacts: | |||
| Atherton: | Neil Reynolds | 4091 2970 | |
| Cairns: | Neville Pedler | 4053 6187 | |
| Cardwell: | Joy Dickson | 4066 0178 | |
| Gordonvale: | Irene Murgatroyd | 4056 1148 | |
| Innisfail: | Gwen Hammerton | 4063 2334 | |
| Lake Eacham | John Cuff | 4095 3063 | |
| Mareeba: | Christel Venturi | 4092 3287 | |
| Mossman: | Sue Dennis | 4098 1637 | |
| Mossman: | Helen Steley | 4098 8143 | |
| Ravenshoe: | Les Buglar | 4097 0132 | |
| Smithfield: | Peter Cummins | 4057 5920 | |
| Townsville: | Mara Hogan | 4779 2478 | |
| Townsville: | Ashley Hinds | 4778 3560 | |
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 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.
Informal meetings:During May, people in the Cairns area asked for a social meeting. So we arranged a coffee morning at the Botanical Gardens Tea Rooms in June, and had an excellent turnout. By unanimous agreement, they wanted a repeat occasion, so another gathering was held in July at the "Fusion Organics" in Grafton Street. One of the participants, Lyn, was asked to write a story about those meetings. Her article is printed below in Page 4. Thanks, Lyn
That just goes to show you, it only takes one person with an idea to tell someone else, and things change.
|
Please come and participate and share your needs. We will offer another screening of the video "Healthy at 100", for anybody who has missed it. | |||
| Saturday | 5th August | Cairns, | 9:30 am at Irelands Training rooms, entry off O'leary St. |
| Wednesday | 9th August | Mossman | 9:30 am at the Community Health Centre |
| Wednesday | 9th August | Smithfield, | 2:00 pm at the Marlin Coast Community Centre |
| Saturday | 12th August | Atherton, | 9:30 am at the Neighbourhood Centre, 38 Mabel Street |
| Saturday | 12th August | Mareeba, | 2:00 pm at the Bowls Club, Anzac Avenue |
| Sunday | 13th August | Ravenshoe, | 2:00 pm at 167 River Road, Millstream. |
| Tuesday | 15th August | Gordonvale | 9:30 am at Warren Pitt's, 94 Norman St |
| Tuesday | 15th August | Innisfail | 2:00 pm at the Brothers Leagues Club |
| Thursday | 17th August | Townsville | 12:30 pm at the Hodel Room, Thuringowa Council Chambers. |
| Monday | 21st August | Cardwell | 2:00 pm at the QPW Reef and Rainforest Information Centre |
This is only a schedule of formal meetings. We encourage social gatherings and networking meetings.
Quite a few socials were held in the last quarter, unfortunately we were only able to notify people with email addresses.
Feel free to arrange your own, but please advise your local area contact and Neil Reynolds on 4091 2970.
Morning Tea, 20th July. By Lyn
The social morning tea on Thursday at 'Fusions' in the city on Grafton Street was excellent. The location was great with the option of sitting outdoors (the option we chose) or inside. The food was delicious and great for us with the menu catering for people with all differing food allergies, me being one of them.
The company was excellent with people sharing about what works for them to try and deal with varying symptoms. Also just a great opportunity to network and talk to different people. It was great to hear of other's family support systems including Neville's little granddaughter. And the challenges faced by different folks including Tina's university studies.
The CFS support group gives us a great opportunity to enlarge our life's limited sphere and to talk to others who know how you feel. I find my family and my church family form my support system, and even though I spend a lot of time alone, I'm not lonely, well, most of the time! Even though I have just started attending the support group, I have really enjoyed meeting new faces. See you at the next morning tea!
Lynnette Chin Fat
- If you're too open minded, your brains will fall out.
- Don't worry what people think, they don't do it too often.
- For every action, there is an equal and opposite Government program.
- If you look like your passport photo, you probably need the trip.
- Bills travel through the mail at twice the speed of cheques.
- No man has ever been shot while doing the dishes.
- A balanced die is a biscuit in each hand.
- Junk is something you keep for years, and throw away a week before you need it.
- Experience helps you to recognise a mistake when you make it again.
- Thou shalt not weigh more then the refrigerator.
- If you have to choose between two evils, try the one you haven't tried before.
- By the time you get where you can make the ends meet, they shifted the ends.
- It is easier to get forgiveness than permission.
- It is not the shirt that makes you look big.
- There is always one more imbecile than you counted on.
- A conscience is what hurts when the rest of you feels good.
- Artificial intelligence is no match for natural stupidity.
- Honking the horn is about as effective as telling the kids to be quiet.
- Middle age is when broadness of mind and narrowness of waist changes places
- Think logically - it will be a contrast to the real world.
- Your nose will itch after you have crawled under your car and started a grease-up.
- You never get a busy tone when you dial a wrong number.
- The phone always rings when you are fully immersed in the bath.
- The last people to arrive always have front row seats at the theatre
- If you change lanes, the one you were in, always moves faster.
INFORMATION PAGES.
FREE RADICALS - How They Work
An apple turns brown when cut open. Your car rusts and eventually falls apart. Both problems are due to oxidation. Your skin ages and wrinkles, and over time, the cells in your body literally rust and degenerate due to oxidative stress.
ANTIOXIDANTS - Why We Need ThemMany research papers show how molecular formations called "free radicals" increase oxidative stress and cause numerous disease conditions associated with aging.1-3
Just what are these free radicals? Understanding where they come from, and why, and how they do so much damage, is essential to understanding what we can do to reduce their effects.
Molecules are made up of atoms joined together by chemical bonds. When a bond is broken, two molecular fragments are created and they each contain an unpaired electron. These molecular fragments are highly charged, highly unstable and highly reactive - we call them "free radicals"
Unfortunately for us humans, the saga of free radicals doesn't end there. Remember, each free radical contains one unpaired electron. Unpaired electrons, like unpaired humans, hate to be alone. They want a partner, and they don't care if they break up another bond to get what they want. Scientists call this process oxidation, and free radicals are masters at it. They don't care where they get their new partners, either. They'll oxidize just about anything that gets in their way - punching holes in cell membranes, destroying key enzymes, and fracturing DNA.
Knowing where these rogues come from helps us to know how to avoid them - or at least how to limit our exposure. Unfortunately, free radicals are everywhere. They're in much of the food we eat, the water we drink, the air we breathe. Even our bodies produce free radicals.
Our bodies are equipped to capture and dispose of free radicals. Fortunately, we have our own army of antioxidants, which are able to neutralize free radicals and render them harmless. The problem is, we usually have more free radicals floating around than our bodies can manage. This can ultimately cause mass destruction throughout the human body. This destruction has been linked to the development of disease and accelerated aging and the food we eat, the water we drink and the air we breathe.
Most of our healing antioxidants come from fruits and vegetables. However, depleted soils, picking before maturity, food processing and storage along with our often poor food choices and preparation restrict the antioxidant protection we receive. In order to reduce the presence of free radicals in our bodies and to replenish and maintain healthy levels of antioxidant protection, we must adopt a healthy diet with lots of fresh fruit and vegetables. We must also minimise our exposure to pollution and cut out alcohol and tobacco.
Recent research has shown Olive Leaf Extract to be a very powerful antioxidant. 400% more powerful than Vitamin C and twice as powerful as the much-acclaimed grape seed extract. So, add Olive Leaf Extract to your balanced diet which should be high in servings of fresh fruit and vegetables. Cut out the use of unhealthful substances and your body's natural antioxidant and repair systems will thank you.
| Oxygen radical absorbance capacity - umol TE/gram | ||
|---|---|---|
 | Vitamin C - 2,100 | |
| Green Tea Extract - 5,937 | |
| Grape Seed Extract - 6,250 | |
| Olive Leaf Extract - 10,465 |
- Barja G. Free radicals and aging. Trends Neurosci. 2004 Oct; 27(10):595-600.
- Junqueira VB, Barros SB, Chan SS, et al. Aging and oxidative stress. Mol Aspects Med. 2004 Feb; 25(1-2):5-16.
- Ashok BT, Ali R. The aging paradox: free radical theory of aging. Exp Gerontol. 1999 Jun; 34(3):293-303.
Reprint from Ole! Newsletter Issue 19, June 2006
TREATING CFIDS & FIBROMYALGIA:
By Bruce Campbell. Source: www. cfidsselfhelp. orgStrategies for Fatigue
Having a long-term health problem like CFIDS or fibromyalgia means learning to live with symptoms that persist. But the absence of a cure does not mean that there are no treatments. On the contrary, there are many ways to alleviate the symptoms of the two illnesses. While treatments don't heal either disease, they can reduce the effects of symptoms and improve quality of life.
This series discusses the major treatment options for four of the most common symptoms of CFS and fibromyalgia: fatigue, pain, poor sleep and cognitive problems. The view of treatment you find here is based on three principles.
Focus on Feeling Better: Because so far there is no cure for either CFS or fibromyalgia, focus on finding things to help you feel better and to give you greater control. The strategies described in this series can help reduce pain and discomfort, bring greater stability, and lessen psychological suffering.
Multiple Strategies: Because most people with CFS and fibromyalgia have more than one symptom and because a given symptom often has more than one cause, it is usually helpful to use multiple coping strategies. These strategies often include both medications and self-management approaches such as pacing, stress management and exercise.
Experimentation: Finding the most helpful combination of treatments often requires experimentation. Because patients are different and because there is no standard treatment for either CFS or fibromyalgia, symptom control is usually achieved by trial and error. Some approaches work better at some times than at others or for some people better than for others. If one strategy doesn't work for you at some point, try another.
Medical treatments for CFS and fibromyalgia can be useful for most patients, but using medication for CFS and FM can be frustrating, because there is no standard treatment for either illness. That means that there is no medication that is predictably effective. If you want to use medications to treat your illness, a sensible approach is to find a sympathetic physician willing to work with you in a process of trial and error to find the drugs that help in your individual situation.
Your success in controlling symptoms, however, will probably depend more upon your efforts and willingness to adapt than on anything a doctor does for you. Making changes in your daily habits, such things as pacing and stress management have several advantages over medications. Such strategies are inexpensive, safe and have a high probability of helping. Most of the patients we have known who have shown marked improvement, or who have recovered, have relied primarily or exclusively on self-management. In the words of CFS/FM physician Dr. Charles Lapp, "There is no drug, no potion, no supplement, herb or diet that even competes with lifestyle change for the treatment of CFIDS or FM."
Treating Fatigue: Fatigue is the central symptom in CFS and a significant problem for most people with fibromyalgia. The word fatigue may be a misleading way to refer to the physical and mental exhaustion that often permeates the lives of patients, making them listless and unable to complete normal activities.
Fatigue can have many causes. One is the illness itself, which uses energy in attempting to heal, leaving you with less energy for your daily activities. In other words, CFS and fibromyalgia impose limits. Perhaps the single most important key to controlling fatigue and the other symptoms of CFS and FM is to adjust your life to those limits. Living successfully with CFS or fibromyalgia requires many practical adaptations. Most patients are willing to make adjustments to their daily routines only after going through a psychological adjustment: acceptance that life has changed on a long-term basis. This acceptance is not resignation, but rather an acknowledgement of the need to live a different kind of life, one which honors the limits imposed by illness. This acknowledgment requires that you develop a new relationship to your body. In the words of one person in our program, "Getting well requires a shift from trying to override your body's signals to paying attention when your body tells you to stop or slow down."
We call this different mode of being "living within the energy envelope" or pacing. Rather than fighting the body, with repeated cycles of push and crash, you seek to understand your body's new requirements and to live within them. The process of accepting limits and learning to live a different kind of life usually takes several years. Part of the challenge is psychological, adjusting to the losses and learning to see your life in a new way. Another part is practical: developing through trial and error a detailed understanding of your new limits, and then gradually adjusting your daily habits and routines to honor those limits. Each person's limits will be different, depending mainly on the severity of their illness. Dr Paul Cheney summarises this approach well when he says, "Proper limit-setting, which is always individualised, is the key to improvement."
Fatigue can also be intensified by poor sleep and pain. Non-restorative sleep leaves you as tired in the morning as you were before going to bed. Pain is inherently tiring and also tends to produce muscle tension, which is both fatiguing. Physical discomfort can also make it difficult to get to sleep or to sleep comfortably. Treating sleep and pain using the strategies described in the next two articles in the series can help you control your fatigue.
The relationship between fatigue on the one hand, and pain and sleep on the other, works in the other direction as well. Feeling tired increases the experience of pain. Fatigue can lead to too much daytime rest or produce the "tired but wired" feeling that makes good sleep difficult. So, just as treating poor sleep and pain can reduce fatigue, treating fatigue can have a positive impact on sleep and pain. The three symptoms interact, affecting one another. An improvement in one symptom can have a positive effect on the other two. Probably the commonest symptom to attack first is sleep.
Other causes of fatigue include:
Too Much Activity: Overactivity intensifies symptoms, leading to cycles of push and crash.
Stress and Emotions: Stress leads to fatigue when energy is spent in worry and lost to muscle tension. Fatigue is a symptom of depression.
Too Little Activity: Reduced activity produces deconditioning, which makes you more tired.
Poor Nutrition: Poor quality or insufficient food, digestive problems and food allergies all contribute to fatigue.
Medication Side Effects: Many drugs create fatigue.
If too much activity is your problem, the most effective response is pacing, as described earlier. Pacing begins with defining your limits. Once you have understood your limits, you can learn to live within them using pacing strategies such as priority setting, rest breaks, short activity periods, living by a schedule, and managing special events like vacations and holidays.
Because stress is so pervasive in chronic illness and because it intensifies other symptoms such as pain and poor sleep, many patients use a variety of strategies to combat it. Like other self-management strategies, stress management techniques improve multiple symptoms.
Powerful emotions are part of chronic illness, a response to the disruption, losses and uncertainty it brings. Emotions can be treated using a combination of self-management strategies, professional help and medications.
If being ill reduces your activity level and leads to deconditioning, you may be able to start a spiral in the other direction with exercise. Exercise produces a higher level of fitness, thus reducing the fatigue caused by inactivity. It also helps combat pain, lessens stress and improves mood. Exercise is usually recommended for fibromyalgia patients and may also be helpful for CFS as well.
CFS and fibromyalgia patients often experience several different kinds of problems getting good nutrition.
First, because of energy limitations, lack of appetite or severity of symptoms, some people may not spend enough time to prepare and eat balanced meals. Eating well can provide energy and boost the immune system.
Second, most patients experience an intolerance of alcohol and many are sensitive to caffeine and/or sweeteners. Cutting down or eliminating these substances may reduce symptoms and mood swings and also improve sleep.
Lastly, about one third of CFS patients and a comparable portion of fibromyalgia patients experience sensitivities to various foods or have difficulty absorbing nutrients. The most effective strategy for controlling food allergies is an elimination diet, in which foods are taken out of the diet and then reintroduced one by one.
Many medications, including some anti-depressants and drugs prescribed for pain, have fatigue as a side effect. To combat this source of fatigue, ask your doctor about fatigue when reviewing medications. A change of medication or a lower dosage may help.
Reprinted from Queensland Communicator, Page 7, June/July 2006 TopWINDOWS TO THE SOUL: Iridology
Written by BJ McDean.It has long been said that the eyes are the window to the soul. It is easy to see the emotions that shine out through the eyes and so tell how a person is feeling.
Iridology also uses the eyes as a window into the physical body. Much information can be gathered by studying the markings in a person's iris.
Iridology is a very useful diagnostic aid which can show us the location of inflammation in the body and other strengths and weaknesses within the organs and body systems. By knowing what areas are under pressure we start to recognise the impact our thoughts, diet, exercise, sleep, work, play and sexual habits are having on us internally. We can identify the causes of our weak spots and implement specific dietary, medicinal and lifestyle changes to start to heal those areas.
The modern history of iridology begins in the early 1800s. A young boy nursed an owl with a broken leg. He noticed that as the owl's leg healed, a striking black line in the owl's iris gradually faded. This boy later became a physician, Dr Von Peczley. He never forgot the incident with the owl and regularly observed the irises of his patients before and after surgery. His study convinced him that there was a reflex relationship between the iris and other parts of the body (just as there are relationships between points on the sole of the foot and the rest of the body as illustrated by reflexology). Von Peczley created the first iridology chart and is considered the official founder of modern iridology.
Iridology can tell us much more than just the mood a person is in and their personality traits. It is easy to see the state of the digestive system, blood, lymph and nervous system by looking in the iris. There are also specific areas on the iris that relate to particular organs and body parts.
Some markings are visible with the naked eye and by looking in the mirror. An iridologist uses an iris torch and magnifier to highlight finer details in the eye and will also check the state of the sclera (the whites of the eyes). Yellowing of the whites often indicates liver disharmony, while reddening is a sign of venous congestion or excess heat in the body. A blue haze around the iris is a sign of poor oxygenation that can lead to fatigue, poor memory and concentration. Heavy overlays of colour in different parts of the iris are often caused by a buildup of toxins in the blood; these colours will gradually lift as a person improves their diet and lifestyle habits. This can take many months so don't be disheartened if you decide to get healthy and don't see immediate iris changes. Just be consistent with your new healthy, loving choices and you will feel better and look better: your eyes will start to shine.
- BJ McDean is a local alternative health practitioner.Reprinted with permission from Connect Magazine, Page 7, May 2006.Top
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