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 18, December 2007.Newsletter.

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

Greetings.
This Newsletter is later than usual, so welcom to the very first Christmas Newsletter! We wish everybody a happy and joyful Christmas, and a healthy and prosperous New Year.. My last 4 months have been a blur of activity and generally good health. There is only a faint reminder of where my health has come from, and I continue to enjoy good energy levels and concentration, and sufficient memory!

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 an office assistant. 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. The office is fully equipped thanks to a number of Grants. We even have a VOIP phone which enables 10 cent untimed calls to landline numbers.

MEETING UPDATE
My employment commitments continue to delay the resumption of meetings. We hope that will all change around Easter next year. In the meantime, this support group still 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.
We owe many thanks to Helen and Sue who have been contacts in the Mossman area. For many and varied reasons, unfortunately they have had to remove their names from the contact list.
We applaud you both for your efforts and your support over the years.
We are always open to having new contact persons. If there are none in YOUR area, please give some thought to starting something – perhaps with another person near you to share the load?

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

LIBRARY
  We are STILL missing several books.
Please check to see if you have “Chronic Fatigue Syndrome – A Treatment Guide”, by Verillo and Gellman. Please return all books that you have out on loan.
Martin Truman has donated a relaxation CD that is available for loan.

LOCAL CONTACTS
Please feel free to call local contacts:
Atherton:Neil Reynolds4091 2970email
Cairns:Neville4053 6187email
Cardwell:Joy Dickson4066 0178email
Gordonvale:Irene4056 1148
Innisfail:Gwen Hammerton4063 2334email
Lake EachamJohn Cuff4095 3063email
Mareeba:Christel Venturi4092 3287
Mossman:Volunteer pleaseVacantemail
Ravenshoe:Les4097 0132
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.

QUOTES

  1. “You won’t get health if you keep talking about how sick you are. What you say is what you get. Start talking about how healthy you want to be – your faith in your future will bring you health. Believe it, speak it, and you will have it” Joyce Meyer, 27th June 2007
  2. “The Government Health system is not in place to prevent illness, it is there to treat symptoms. Prevention techniques using plant products and food can not be patented, and Doctors receive little or NO training using this method. Life saving health information is not made freely available to the public. We have the choice of allowing the medical profession to treat us with chemicals and drugs, or finding plant-based methods to treat ourselves”. …… Phillip Day, Health Wars.
INFORMATION PAGES.

Do you want kids with that?   By Jennie Sharpe

Screaming babies in the night, terrible two-year-olds in the day; just how do sufferers cope?
We put our questions to four parents who gave us their take on parenting with ME/CFS/FM.

While Christina's three children were all teenagers when she first became ill; Liz, Simone and Maria, Greg's wife, all faced the effects of pregnancy on their ME/CFS/FM.

Maria, Greg says, noticed a marked improvement in her health when she became pregnant with their first child three years ago. Yet pregnancy was not a lasting cure. Six months after the birth of their daughter, she suffered a severe relapse. Two years later, juggling ME/CFS with caring for a toddler, she did not experience the same remission during her second pregnancy. Rather than improving, her health deteriorated further.

Liz first became ill just six months before falling pregnant with her first, and only, child. Although she managed to continue working, she found herself suffering from orthostatic intolerance: "I was sales repping at the time, which was a bit fraught for my poor customers when I began to 'go' in the middle of their store!" she says.

Simone's FM has been ongoing since her late teens. Her pregnancies were fraught with infections, back pain and unstable pelvis with post-natal recovery proving lengthy and difficult.

How did your children react when they realised their parent was ill with ME/CFS/FM?

Greg: Our eldest child first noticed something was wrong with my wife's health when she was around two-and-a-half years old. She would become withdrawn and upset until Maria's heath improved.

Liz: My daughter was (is!) strong willed and I found all that worked was to give her the complete freedom of the house and to lock myself in my room, which kept her safely outside my door trying to get in while I frantically rested. I used to lie exhausted on the floor next to her cot (more frantic resting) whilst she pelted me with soft toys in her frustration at my lack of response. Once she even gave me a shiner (which I have photographic evidence of). She was about two-and-a-half. You still don't hear much about 'frantic resting' but I'm sure plenty of mothers are using it.

Simone: My kids don't know anything. I guess they are too small, five and three.

Christina: The reaction was mixed. I tried not to tell them much and behaved as normally as possible once I was over the worst period—about two-and-a-half years. I was able to do this by resting when they weren't at home. My older daughter was studying or not home much so didn't experience it a lot. My younger daughter and son were disturbed and upset at times.

What support system did you set up to help you?

Greg: Initially we didn't have any support system as Maria's parents live in Canberra and my parents live in Melbourne. When Maria's health deteriorated six months after the birth of our first child, both our parents took turns to stay with us on a weekly basis to support Maria while I was at work. As this was not a sustainable solution we identified an agency which places au pairs with host families. We have relied on au pairs for the last two-and-a-half years.

Liz: None. I stumbled through using day care a few days a week while I tried to work part-time. I had no diagnosis so officially I was well and I kept on trying. My husband used to take my daughter out on weekends while I slept, as I have no family here and his didn't want to know. They had all sorts of adventures that they still reminisce about 17 years later. It made their bond closer. Mum would come from New Zealand when she could and lived with us for a few months at a time to help out. It was very difficult.

Simone: First born: basically no support. No parents to help and a partner that worked (works) hard. I struggled with a lot of muscular pain, foot pain, wrist pain and breastfeeding was a hugely painful experience because I have Reynaud's syndrome and find it very difficult to hold the baby and sit still for long periods.

Christina: My best support was finding out as much as possible about the illness after I was diagnosed (two years after I became ill), seeking out doctors and going along to a ME/CFS support group. For the first few years I tried to fight on but when I couldn't do that successfully I began to try natural methods of supporting my immune system, relaxation techniques, multivitamins and doing some mental gymnastics to try to keep my brain from totally phasing out and resting for an hour every morning and afternoon. I didn't have family members around other than my husband and children. My husband worked long hours so couldn't do much extra to help.

How have you been treated by other parents?

Greg: Maria's mothers' group is understanding. We have to reduce our social life to cope with Maria's illness and at times we miss important social events held by family and friends who do not always understand. My sister-in-law and my wife's aunt are not very understanding and ignore Maria at times.

Liz: The longer they knew me the odder I seemed as I was so erratic and sick—but I looked all right! I remember one day I cut a deal with my seven year old: all right, we will go to the park but I can only push you twice on the swing. She was used to our deals and it was agreed. I pushed her twice, and that was it; all cut up inside with guilt I lay in the grass exhausted, while my daughter hung around the swing. A mother from her school was pushing her son and, without saying anything, she began to push my daughter as well. My emotions were many, but most of all I was so grateful to her. I lay in the grass with hot tears streaming down my face.

Simone: I don't discuss my FM with people.

Christina: Most other parents didn't know I was ill and as many others couldn't attend for work reasons my absence wasn't that noticeable. As my children were all excellent students and I attended almost all the parent-teacher nights even if I was not exactly functioning and could sometimes barely get through, most believed I was showing sufficient interest and were fine with me. They did think I was very reserved as I didn't attend social functions. It meant I didn't make many friends among the parents though.

Does any particular event stick out in your mind?

Greg: When our eldest daughter was six months old and Maria called me at work to say she couldn't pick her up from her cot and that we were going to have to give her away as she couldn't look after her. I felt completely helpless and alone, not knowing how I could support my wife and daughter whilst performing my job at work.

Liz: It was the '80s, at the height of the AIDS hysteria in Australia. I arrived at day care to drop off my daughter and no one else was there. A rumour had gone around I had AIDS so all the mothers, who were as nice as pie to my face, had banded together to pull their children out of day care.

Simone: Usually after births and after operations I have a fallback and when recently my dad passed away, I had two consecutive miscarriages. I always cope though. One way or the other, the blow always comes when I let it come and not when I am in the middle of a difficult time.

Was there ever a time when ME/CFS/FM worked in your favour?

Greg: We believe that we have a more fulfilling relationship because we have a more measured, slower lifestyle focused on our relationship and children and less on our social and work lives.

Liz: Recently, my daughter told me she saw my shortcomings as a positive in her life. She always knew where I was (in bed), she always knew I would be home; I was totally predictable. She had no problems with having a mother who was ill, as she knows nothing else. It gave her stability in her home!

Simone: My husband now understands and that is working in my favour every day! He lets me lie in my bed a bit longer, because I take longer to get out of bed. When I am really tired, he understands now. He will always attend to the kids in the middle of the night. That is a big plus, isn't it?!

Christina: When my younger daughter was very sick for months I was able to be there for her, understand some of her pain and share it.

In hindsight, what would you do differently?

Liz: A lot. I would not have pushed myself; I would not have listened to other people's expectations or advice; I would have listened to my body; I would not have felt so guilty about my limitations; I would have learned to say "no"; I would not have been so hard on myself. I would have found some sort of household help.

Simone: I have to keep exercising, meditating, but I don't make time, still don't...

Christina: I would have treated myself better when I was really ill, instead of pushing on and not giving my body a chance to recover. I would not be so impatient, but that comes with knowledge I didn't have at the time. I would ask for help.

Do you have any advice for couples who may be battling ME/CFS/FM and wondering about parenthood?

Greg: Not to be afraid of becoming a parent as it is the most wonderful experience to hold your baby and to watch them grow up. However, be better prepared than we were with your first child regarding a support network. If you are planning on having a second baby, ensure you wait until your first child is older and more self-sufficient so they are able to understand why mummy and daddy can't always give them as much attention as they received when they were an only child.

Liz: Make sure you have your support systems in place and then go for it! Pregnancy can make ME/CFS/FM better, worse or have no effect at all on the mother's health. There has not been much research done, and certainly not any recently (the last research was in the '80s), but there could be help out there to get you through pregnancy if you have a good doctor. In my experience the hardest times are when they are young and before you are able to reason (yes, read that as bribe) with them. Teach them to cook early and get them in the habit of bringing you meals (learn from my mistake!). Some things in life are worth every sacrifice and just have to be done, shouldering the burden of this illness. Kids are at the top of that short list.

Simone: I advise everyone to get help in. I am a very strong believer in nannies and au pairs. Forget about anything else you want or need to buy, invest in au pairs or nannies when your kids are young. You will enjoy your kids so much more when you have help, feel sane and happy. For me, that beats driving a beautiful car or living in a perfect house or wearing designer clothes. I do understand that it is not for everyone, I know I am lucky, but if you feel you could afford it, do it. It is the best decision I have ever made. And one I didn't make at first, because I was against it in the beginning; like every mum, you think you can, and need, to be able to do this yourself. I don't think like that anymore. It is not a task you should do by yourself.

Christina: Be well informed before making your decision. Plan and organise well in advance of the pregnancy and birth. Organise as much support as you can beforehand. Try to find a supportive GP. Gather knowledge about the disease and how best to manage it. Learn to be patient, particularly with each other. Accept that parenthood is not easy for anyone and will be harder for someone with a chronic illness and his/her partner. But parenthood can be very rewarding.

Copied from M.E. and You journal, ME/CFS Society of NSW Inc.

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BATTLING “THE SYSTEM”

battling the system
”Yes, I know you have had ME/CFS since you were 45, but we still say your condition is temporary”.

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Info pages from Bruce Campbell.
Mailout copies of this Newsletter include 17 pages of lifestyle information by Bruce Campbell. Email recipients should phone 4091 2970 if you would like to add this reference material posted direct for you to add to your files.

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