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

ME/CFS/FM Support Association Queensland Inc..

Tropical North Queensland Support Group
Newsletter.
No 9 July/August 2005.
Greetings.

Another 3 months have passed, and so many things have happened.

Here we grow again!

1. At last we have a volunteer for Mareeba! So finally we have been able to start meetings in Mareeba! Welcome Chrystel!

2. The Townsville group have had to change their meeting venue. Their use of the Gethsemane building was terminated, so they now meet at the Ryan Community church building in Morino Drive, Kirwan. Thanks, Cynthia, for your setting up this group. Welcome to Mara as the new contact person!

3. The Innisfail group, headed by Gwen, are having meetings every 2 months. So now our list of contact persons has grown to 13!

Happenings

· Further submissions have been made to the Department of Disabilities Services, Queensland (DSQ) about access to support services by people with CFS, FMS and MCS. We await with interest the re-write of the Disability Act by the Minister, Warren Pitt. It will be even more interesting to see if this results in funding for support groups and better access to DSQ services.

· It is interesting to follow the Bundaberg Hospital fiasco. The Minister for Health, Gordon Nuttall, is in the firing line again, and has finally been removed.. I found his comments interesting that we on the Atherton Tablelands have "the best buildings, the best services, the shortest waiting lists for elective surgery in Queeensland". It will be interesting to see what our new Minister will do for us, and if he can do any better than offer CFS and FMS sufferers treatment at Public Hospitals.

· We have had further contact with the FNQ Rural Division of General Practice. They have provide us with copies of the original Clinical Practice Guidelines, and the 2002 Update. These are public documents, and we have some spare photo copies available. We also have spare copies of the CFS Clinical Practice Guidelines from South Australia. All of these are available on request by phone. Please consider the cost of postage when making these requests.

We continue to provide the Information Kits:

  • Chronic Fatigue Syndrome (ME & CFS)
  • Fibromyalgia Syndrome (FMS),
  • Women, Childbirth and CFS
  • MCS Kit, which is still in DRAFT mode.
These are available to assist you and your treating doctor. Additional information is available from your area contact, or from Neil Reynolds.

THANKS

Thanks again to the Atherton Neighborhood Centre for ongoing support.
Thanks also to our Politicians for generous amounts of photo copying.
Thanks also to the many organisations who allow us to use their meeting rooms.
Thanks to Peter Cummins, for continued work on our very own website.
And thanks to the media who help us with publicity for our meetings.

MEMBERSHIP

The Qld Association in Toowoomba needs our support. All the State Associations and Societies are connected to the Australian Society, who also need our support. They are our national voice, political lobbyists, and statistics gatherers. I am encouraging all our contacts and participants to please dig deep and sign up for Membership of the Qld Association. Application Forms are available from Area Contacts and at meetings.

ARTICLES

Our information library continues to expand. We have 5 folders with over 200 different articles and information sheets. These generally fall into the categories: CFS, FMS, MCS, Allergies, and General Health. We plan to create a new folder about Nutrition. They are subject to copyright restrictions. We can provide these, but please consider the cost of postage.

CFS and FMS AWARENESS DAY.
Our Annual event.

This is held every year around the world to commemorate the birthday of Florence Nightingale. CFS/FMS movements use this date as Awareness Day because Florence was one of the earliest recorded and recognised cases of CFS/FMS. A biographer said:
"At age 30, she was ready to give up. She wrote in her diary, "My God, what will become of me? I have no desire but to die".
But the dark clouds of despair ( later recognised as CFS) gave way to the light, and in time she discovered a new purpose for living. When she died at age 90, she had left her mark on history by relieving human suffering, and founding the nursing profession.

On our Awareness Day in Tropical Far North Queensland -

  • We distributed pamphlets to the Cairns Base Hospital,
  • Had a booth in the City Mall. Our happy band of volunteers manned this booth from 9:00 till about 2:30 pm.
  • The Innisfail group had an Awareness Day lunch party at the Innisfail RSL. Gwen tells us it was a good rollup, and they had a happy time together.
  • Good publicity through the article in the "Friday Magazine" May 2005, about Johanna Griggs and her struggle with CFS.
  • TV Journalist Leigh Hatcher received publicity for his book "I'm not crazy, just a little unwell" about how his life changed due to CFS. We have been loaned ONE copy of the book by Rev Bill Gray of the Gordonvale Presbyterian Church. This book is a MUST READ, as it is a real-life personal record of the triumphs and tragedies that we face. It could also be a useful tool to educate our friends and family about our disabilities and restrictions. We will make this book available to anyone interested for one week max. We have ordered extra copies, and will have them at meetings for sale at cost.

MEETINGS

Included with this Newsletter is a revised list of the remaining meetings for 2005. There are some changes to venues, and new support groups. We encourage the development of new informal gatherings or "coffee clubs".

Support group updates:
  • Townsville: Please note that this group meets on the first and third Thursdays each month. There is a change of venue from Gethsemane to the Ryan Community Centre, Morindo Drive, KIRWAN. There also is a new contact person, Mara. We will be runing an info session for them on 1st September.
  • Innisfail: This group prints their own Newsletter, and have regular meetings every 2 months. They frequently have speakers, and the venue changes accordingly. Contact Gwen for the latest info.
  • Mareeba: This new group have had their first meeting, and will join the regular meeting schedule.
  • Ravenshoe: Are planning "coffee club" in betweeen scheduled meetings. Phone Les for info.M
  • Gordonvale: Have regular "coffe and chat" in between scheduled meetings. Phone Irene for info.
  • Smithfield/Northern Beaches: One of our members is offering a room if you need a quiet place to meditate. A "morning tea" is planned for late September. Phone Peter for info, and to register.
  • Mossman: Helen is providing a morning tea on 13th or 14th Sept. Phone Helen to book.
  • Cardwell: Joy does not have enough energy to run social "chat" meetings. Any volunteers?
  • Atherton: Neil is too busy. Any volunteers to organise or host a social gathering? Please phone Neil.
  • Earlville/Cairns: Neville has never organised a social. Can anyone help?

MEETING PUBLICITY:

The support group, and the CFS movement, needs your help! Enclosed with this Newsletter, please find CFS Meeting Posters. Can everybody please find a suitable place near where you live, to display them? In most communities there are Notice Boards that can be used. Meeting Calendars are on the site's calendar page or attached to your email.

CONTACTS:
Please feel free to call local contacts:
Atherton: Neil Reynolds 4091 2970 email reynoldsn@dodo.com.au
Ravenshoe: Les Buglar 4097 0132
Smithfield: Peter Cummins 4057 5920 email pcum7668@netscape.net
Lake Eacham: John Cuff 4095 3063 email cufflink@tpg.com.au
Cairns: Neville Pedler 4053 6187 email bronev@austarnet.com.au
Mourilyan: Gwen Hammerton 4063 2334 email farnthqldfibromyalgia@westnet.com.au
Gordonvale: Irene Murgatroyd 4056 1148
Mossman: Sue Dennis 4098 1637
Helen Steley 4098 8143 email steley@austarnet.com.au
Cardwell: Joy Dickson 4066 0178 email rdickson@qldnet.com.au
Townsville: Mara Hogan 4779 2478 email mara.hogan@bigpond.com

EMAIL RECIPIENTS:

People receiving this Newsletter by email: To help transmission, this Newsletter is in "plain text" format, without the logo and original formatting. If you would like the full version, please ask for one at the meetings.

Disclaimer: Please note that any information provided is given in the interests of sufferers. No liability can be accepted, as we do not intend the information to replace professional medical help and treatment.

Copyright: Information provided and distributed 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 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 perfume, strong scented soaps, or agricultural chemicals to the meetings. If you need to smoke, please leave the smell at home, and don't bring it with you on your clothes.

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