The ME/CFS Society of NSW Inc.

by Kerri Stephenson

Do onions make you cry? Have you ever peeled back the layers one by one? That’s what my life with ME/CFS/FM (Myalgic Encephalopathy/Chronic Fatigue Syndrome/Fibromyalgia) has been like over the past 14 years; gradually losing layer by layer of my once active, social, independent life until I hit the centre/rock bottom/got right back to the basic routine of sleeping/eating/bathroom and was like a baby needing 24/7 care because I was too weak to move, talk or do anything other than keep breathing.

"Why should I have a holiday?" Take a break from the responsibility of caring with the person you care for (with someone else doing the caring) or take a break by yourself. By phoning the Commonwealth Carer Respite Centre on 1800 059 059 you will be able to talk about any issues you may have about taking a break and learn how you can make it happen.

Dear Members, Friends and Supporters,

We would like to wish everyone a very happy new year and let you know some news from the office...

The office reopened for business yesterday (Monday 11 January), and will be open at the following times during January and February:

9am to 5pm Monday, Tuesday, Wednesday
10am to 6pm Thursday
Closed Friday.

All website registration requests that were made after 19 December have been approved this morning. I apologise for the delay over the break in accepting these. If you registered for a website account but haven't received a confirmation email, please email me at webmaster@me-cfs.org.au to sort it out.

The Society wishes all members a very merry Christmas and a happy, safe new year.

The Society will be closed from 4pm, Friday 18 December 2009. It will reopen at 9am, Monday 11 January 2010.

If you need urgent support during this time call:
Lifeline 13 11 14
Salvo Crisis Line (02) 9331 2000
Telefriend (02) 9419 8622

During January 2010, the office will be open from
9am to 5pm Monday, Tuesday, Wednesday
10am to 6pm Thursday
Closed Friday.

In October 2009, ME/CFS Australia convened a summit in Canberra where it made a number of positive decisions related to its future.

ME/CFS Australia wishes to establish its operations so that it can deliver Nationally-focused programs that will improve the wellbeing of Australians affected by ME/CFS. Before we get ahead of ourselves, we must engage with the Australian ME/CFS Community to test our ideas for support and to assess the feasibility of expansion. We have established a Blog as a means of connecting with everyone with an interest in ME/CFS. http://mecfsaustralia.wordpress.com/

If there are any people in the Australian Capital Territory eager to be involved in Advocacy work, please contact me.
Cheers, Paul Leverenz
ME/CFS Australia
mecfs@mecfs.org.au

Media Release

For immediate release: 16 October 2009

The Judith Jane Mason & Harold Stannett Williams Memorial Foundation announces its 2009 Chronic Fatigue Syndrome and Alzheimer's disease medical and scientific grant recipients

The Judith Jane Mason & Harold Stannett Williams Memorial Foundation (The Mason Foundation) has awarded 18 grants totalling $1,078,136 in its fourth open round of medical and scientific research grants for Chronic Fatigue Syndrome and Alzheimer's disease research.

Researchers from around Australia were invited to apply, with all applications assessed by the ANZ Trustees National Medical Advisory Panel.

Celebration Day for Carers

Do you have, or are you caring for someone with a disability, mental illness, frail aged or suffering from a chronic health condition?

As part of Carers Week 2009, you are invited to relax and enjoy a special day hosted by The Rainbow Room, which is sponsored by ShoreCare.

Date: Wednesday 21st October
Time: 10am-2pm
Where: The Rainbow Room
Located at North Shore Christian Centre
Chatswood Business Park
175 Lower Gibbes St (off Smith St) Chatswood
Plenty of parking available. Wheelchair and Pram access.
(Sydney bus 136 travels between the northern beaches and Chatswood Station
via Eastern Valley Way)

Morning Tea & Lunch Provided

Activities will include:
Mini Manicures
Hand Massages

I thought it might be helpful to get in early and arm you with a scientific
appraisal of the recent article in Science regarding a new retrovirus
discovered in patients with CFS.
The first comment is that the findings are potentially very important to our
understanding of the illness.
The paper describes the detection of genetic material of a virus known as xenotropic murine leukemia virus-related virus (XMRV) in 68 of 101 (67%) patients in the US, described as having illness "fulfilling the 1994 CDC Fukuda Criteria for Chronic Fatigue Syndrome and the 2003 Canadian Consensus Criteria for Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) and presenting with severe disability", compared to 8 of 218 (3.7%) healthy individuals.