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 8 May 2005.
Greetings.

The last 3 months have passed so quickly, and so many things have happened.

Here we grow again!

1. Just prior to the February meetings, we were able to renew some previous contacts we had in Mossman. Just 2 weeks before the meetings began, we had to change all the schedules to fit in one extra meeting for them at Mossman. It was very rewarding to see a group of enthusiastic new contacts turn up, with quite a few apologies because of the short notice. But out of that we now have two ladies who are the local contacts for Mossman. Welcome to Sue and Helen!

2. A similar story from Cardwell. One lady who came to the Innisfail meeting had previously said that she lived in Cardwell, and that she could not keep coming to Innisfail. She also said she would help if there was a group near her. So just after the February meetings had finished, we arranged a special meeting in Cardwell. Joy organised the venue, and we provided 2 speakers and offered a free massage. A very well attended meeting, shame that Joy missed out on her free massage! But welcome, Joy!

3. Some time ago, I received a phone call from Townsville from a lady who wanted to know "How do you start a CFS group?" More calls and emails, we sent a small sample of literature, and we heard no more. Just a few weeks ago, in response to an email, she apologised and said that she had already started having fortnightly meetings with a regular group of 12 or 13 ladies. She has already contacted Toowoomba to let them know! Welcome Cynthia!

4. It is with regret that we announce the passing of the relatively new contact in Ravenshoe. Tony Ferguson was not a sufferer, but decided to support us and set to find out all he could. Just when he was ready, and had attended our first Contact Person's meeting, he unfortunately suddenly became ill and passed away. Our previous host, Les Buglar, has been encouraged to step back into the breach. He has arranged a new venue in Ravenshoe for our meetings. Welcome back Les!

So now our list of contact persons has grown from 4 to 11 in one year!

HAPPENINGS:

· Over the last 12 months I have written to the Department of Disabilities Services, Queensland (DSQ) about access to support services by people with CFS, FMS and MCS. I was under the impression that we could not obtain support because they did not recognise CFS as an illness. I wrote to the Minister, Warren Pitt, then DSQ in Cairns, and then finally to the Director-General, Linda Appelt. I have now received a reply, that all people with chronic disabling conditions can access services, subject to the usual assessment. And of course, they would be prioritised against other applicants. This then depends on their capacity (financial and personnel) to provide help. At least we know that we are not being discriminated against! We have put in a submission to their community consultation about changes needed to provide CFS sufferers with support.

· The Qld CFS Association sent a petition to the Minister for Health, Gordon Nuttall, asking for (1) extra funding support for the CFS Association, (2) funding for a manager, and (3) for a CFS/FMS clinic. We are advised by the Minister that, quote "….people who suffer from CFS and/or FMS can seek medical treatment at any Queensland Public Hospital. Staff including Doctors, Allied Health Professionals and Nurses are able to provide treatment and assistance to patients suffering from Chronic Fatigue Syndrome and/or Fibromyalgia. All Doctors and Nurses working in the public health system receive a basic understanding of CFS whilst completing their qualifications. Clinic staff have access to the latest research and information to update their knowledge and skill base to better understand the need of patients."

· We have been invited to place an advertisement in the MIMS resource for doctors. The TNQ Support group will be listed as a contact for support for ME, CFS, FMS, and MCS. Our phone numbers will be available to doctors who need support for their patients, and for information.

· The same advertisement will be available on the "mydoctor.com" website.

· We mention again the new set of CFS Clinical Practice Guidelines from South Australia. This document has generated significant interest in the CFS community. We will have spare copies available at our meetings, or on request by phone. Please consider the cost of postage when making these requests.

· Our travels around the ME/CFS/FMS/MCS community in Tropical Far North Queensland have revealed significant differences in causes of illness from the mainstream in southern Capital cities. We felt the need to address those issues by recycling and changing the existing pamphlets, and will offer for consideration the new versions of pamphlets about ME/CFS, FMS, MCS, and Allergies.


We continue to provide the Information Kits:
· Chronic Fatigue Syndrome (ME & CFS)
· Fibromyalgia Syndrome (FMS),
· Women, Childbirth and CFS

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 The Atherton Neighborhood Centre for ongoing support.
Thanks also to our local Politician 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 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 would encourage 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.

ARTICLE

We have a new article about SLEEP, which we will distribute at the May meetings. If you can not get to a meeting, please phone your local contact for a copy. Please consider the postage costs and the copyright restrictions.

CFS and FIBROMYALGIA AWARENESS DAY:
Don't forget 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.

Last year we distributed pamphlets from the Cairns Base Hospital, had support meetings, and had a booth in Citiplace. Our happy band of volunteers manned (and womanned!) this booth from 9:30 am till about 2:30 pm.

We have booked the booth again this year. We also hope to have some media publicity and support. So, if you are out and about, come and sit with us to swell the numbers. If you feel up to it, hand out a few pamphlets! It would be a good idea to bring a chair and some water. SEE YOU THERE ! ..? !

The Innisfail group is having an Awareness Day party at the Innisfail RSL. Phone Gwen to book.

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. Additional meetings are being held in Gordonvale, Innisfail, Cardwell and Townsville. We encourage the development of new informal gatherings or "coffee clubs".

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 calendar page.

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: Cynthia Marsh 4775 3131 email gethsemane1@bigpond.com

WEBSITE :

Peter Cummins has put in a lot of work creating our new website, and continues to update as news breaks. http://au.geocities.com/me_not_cfs/ where you are now
Old web site still working at http://peter200015.tripod.com/ while new site being constructed.
Also visit sister site ME International at http://uk.geocities.com/me_not_cfs/

EMAIL RECIPIENTS:

People receiving this Newsletter by email: To help transmission, the logo at the top left has been removed. Your copy will have an empty spot where the logo was!


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