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 21, August 2009. Newsletter.

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.

NOTE:- This support group also represents people with Chemical Trauma and Multiple Chemical Sensitivity. We also provide a connection with the Australian Mitachondria Disease Foundation.

DATA BASE UPDATE

We receive regular requests from people for the names of doctors, dieticians, naturopaths, physiotherapists, specialists, medical experts – anybody who can make the lives of sufferers easier. As a public service, we would appreciate it if EVERYBODY could send us the names of their practitioners. New sufferers are desperate for this kind of information. THANK YOU.

EDITORIAL

I offer my sincere apologies for missing 3 Newsletters. An accident in November 08 severely damaged my right foot, put me in hospital for almost 3 months, and followed by another 3 months of rehabilitation. I am now able to wear shoes at last, and at times have a bit of a limp. Once the skin ailment is addressed, I hope for a normal life.

As a result of being laid up for so long, I have had to think hard about my ability to continue as coordinator of this support group. I now call for volunteers for all functions of the group: Coordinator, Newsletter editor, Researcher, meeting arranger, and more Area contacts/ support people. Please let Neil know if you have the capacity and the interest to take on these roles. Ironically, this is Newsletter issue number 21. I hope somebody else will print the next issue.

Ethical: I have discovered a product that is enormously beneficial to my health and recovery, and I have made a decision to market the product. As Coordinator, I should not both market a product and hold a position on the Support group.

SERVICES

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.

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.

FNQ NEWSLETTER

- Contributions to this newsletter are always welcome. Please keep articles brief and to the point. - If you don’t want this Newsletter, please mark it “return to sender” and post it back to us.

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

No meetings are scheduled at this time.
See the last page of this Newsletter about Position Vacant.

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 and/or
www.notcrazy.net/links

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

There are some serious suggestions that most of the ailments of ME/CFS/FMS/MCS could be a subset of Mitochondria.

This could be an explanation or a light at the end of the tunnel for many of our sufferers. Due to the alikeness of the ailments, we now have a connection with the Mitachondria group.

Medical Pages

The Victorian ME/CFS Society Magazine, Emerge, has published an extensive article from the Ninth International IACFS/ME Research and Clinical Conference held at Reno Nevada in March 2009.

With permission from the Victorian Society, we offer this 20 page summary of all the latest information as a separate booklet. This is yours for the asking, posted to you at your home. A donation for postage would be nice, but you can have the article for free!

POSITIONS VACANT

Volunteers
To keep this Tropical North Queensland ME, CFS, FMS, MCS and Mitochondria Support group going.
(Note that the Mitochondria organization has it’s own structure and information system.)
  1. Coordinator/publicity
    Maintain communication with all the Area contacts. Arrange media releases.
  2. Newsletter Editor
    Gather information and contributions for the Newsletter, edit, print and post.
  3. Research assistant
    Gather information, categorise, and file, - ready for access for people’s enquiries or Newsletter.
  4. Meeting and program organizer
    Arrange meetings, book venues, arrange agenda’s and speakers.
  5. Local contacts
    People in all areas of Far North Queensland, who feel comfortable enough to give out information and support.
    Particularly at Atherton, Ravenshoe, Malanda, Mossman, Cairns and Gordonvale.
Please note that support will be available for all positions for a suitable period. Neil will initially be available as a backup for all positions.

For further information and to notify your interest please email Neil at reynoldsn@hotmail.com. For enquiries please call (07) 4091 2970

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