The ME/CFS Society of NSW Inc.

Contact person is Bronwyn: ExperienceCounts@frotelonsbs.com.au (Please be advised that due to work commitments it may take a few days for emails to be replied.)

ESSG offers the following:

• Several cafe meetings per month - weekdays and weekends
• Regular e-newsletter

Support Group Meetings:

ALL MEETINGS START AT 2PM

Kings Cross Cafe Meeting @ Cafe Bondi - Mon 20th July
Weekend Cafe Meeting @ Uliveto - Sat 25th July
Double Bay Cafe Meeting @ Dish - Fri 7th Aug
Kings Cross Cafe Meeting @ Cafe Bondi - Mon 17th Aug
Weekend Cafe Meeting @ Uliveto - Sat 26th Aug CANCELLED
Double Bay Cafe Meeting @ Dish - Fri 4th Sept
Kings Cross Cafe Meeting @ Cafe Bondi - Mon 21st Sept
Weekend Cafe Meeting @ Uliveto - Sat 26th Sept

The Double Bay Cafe Meetings will be held at the Dish Cafe on the first Friday of every month. If the group is small we will have a table at the under cover front terrace of the Cafe (dogs welcome), if the weather is nasty we can move inside the Cafe. The Cafe is located at Shop 5a, 19-27 Cross Street (corner Transvaal Avenue), Double Bay (at the end of a shopping court between the Stamford Plaza Hotel and New South Head Road). You can contact them on 9328-9000 for more accurate directions. There is a covered Car Park up the New South Head Road end of Cross Street, or you can park in the open air behind the Sheaf Hotel/Woolworths in the Council Car Park. The menu is general cafe style, ranging in price from about $8.00 up to $25.00 in price. They serve meals up until 3pm (last order) but you can still order coffees, other drinks and home made gelato after that.

We’re going to try a new venue for our Kings Cross meetings on the third Monday of the month - Café Bondi Kings Cross (which by serendipity opened up only last week!!). They have a huge protected and well heated outdoor area, as well as a big indoor area, an amazing menu, and prices are reasonable. In addition it is slightly closer to the train & bus stops. I’ve attached their menu for you, and the link to their website is http://www.cafebondi.com.au/ .

Café Bondi is a huge café located on the Ward Avenue end of the residential block The Altair at 3 Kings Cross Road, and sits atop the William Street overpass, looking back over fabulous views of Edgecliff and beyond. Kings Cross Road is a one way road running from the City towards Edgecliff.

If you are coming by car from the City, take the Kings Cross Exit off William Street, then go straight across Darlinghurst / Victoria Streets and you’ll be in Kings Cross Road. Café Bondi is over the hill and all the way down to the roundabout, on the right hand side. There is 1 & 2 hour (some metered, some not) parking in Kings Cross Road, or there is undercover parking at the Crescent Hotel (adjacent to Uliveto) on Bayswater Road. If you are coming by car from the eastern suburbs, take the Kings Cross off-ramp. You will be on Craigend Street. The first right hand turn is the Ward Ave overpass and the café is immediately on your left. There is limited parking on Craigend Street, otherwise try Kings Cross Road or the undercover car park in Bayswater Road.

From 27th June, I thought we’d try somewhere different for our Weekend Café Meetings -just to add a bit of spice to the mix. The new location will be Uliveto, not very far away from Café Bondi in Kings Cross, and even closer to the train and bus stops. They have a large, well heated undercover outdoor area, as well as a smaller indoor area. The menu is smaller than Café Bondi, but the food is fabulous and they have lovely cakes, and fairly reasonable prices.I have attached a link for you to read the review of the café if you are interested - http://www.yourrestaurants.com.au/guide/uliveto/ .

Uliveto is located on street level of the Crescent Hotel, beside Dancers Nightclub, and a bit further down hill than Hugo’s Pizza at 33 Bayswater Road. If you are coming by car from the City, take the Kings Cross Exit off William Street, then go straight across Darlinghurst / Victoria Streets and you’ll be in Kings Cross Road. Follow Kings Cross Road over the hill and all the way down to the roundabout, then turn left at the round about. At the next set of traffic lights (Bayswater Road), turn left. There is limited metered on street parking, or park in the undercover parking station. Uliveto is uphill from the parking station. If you are coming by car from the eastern suburbs, take the Kings Cross off-ramp - you will be on Craigend Street. The first right hand turn is the Ward Ave overpass, turn onto Ward avenue, drive through the roundabout, and turn left at the next set of traffic lights (Bayswater Road) as above.

Hope to catch up with you all soon!

FYI You might like to try the Coogee Owls Support Group - see Society website for more information.

Society
While the ME/CFS Society of NSW Inc has government funding that enables us to maintain an office, a social welfare office and to send out quarterly newsletters, we rely heavily on funds raised by membership to put most of our other projects into place, including running seminars for members, promoting awareness amongst GPs, and maintaining support groups. If you are not currently a member of the Society, I strongly urge you to join. If you have a specific reason for not wanting to join, please do let me know. Your feedback will help us become a more supportive Society for everyone.

EMERGE Magazine:

The Society is looking at ways to minimise their costs, and are considering either emailing the EMERGE magazine to those who are interested in receiving it in this manner, or creating a “Members Only” section on the website where the EMERGE magazine (and previous journals) would be available for viewing and download. Both of these arrangements would save on printing and postage costs as well as being environmentally friendly. If you think you would be happy with either of these methods, can you please email the society on mesoc@zip.com.au to let them know your thoughts.

Snippets:

Hyperbaric Oxygen Therapy (raising the levels of oxygen in the blood's plasma) has apparently been useful in combating numerous disorders including allergies, arthritis, ME/CFS, sleeping disorders, etc. The therapy is now available at HypO2 in Woollahra. For more information call them on 02-9388-0074 or log onto their website at: www.hypo2.com.au.
Ionic cell therapy purports to detox your cells via a footbath in 30 minute sessions. One supplier here in Australia is Karpati Esthetique in Double Bay, who charges $65 per session, and recommends a minimum of 10 sessions. Log onto http://www.lumatox.com.au/ for more information. However, as Karpati is a beauty salon and not a registered medical practice, they cannot legally provide analysis of the results. However, there are other suppliers of similar products in Australia, which are apparently quite commonly utilised by naturopaths. I'm trying to get more information on this - if you have any, please let me know.
Neurofeedback is a method whereby the brain learns to reorganise itself to assist in the recovery all forms of Central Nervous System dysfunction and is supposedly quite effective with ME/CFS (up to 40 x 1 hour sessions). The technology has apparently been available for several decades, but it is only recent advancements that have improved its availability and effectiveness. Rosemary Walters, a Neurofeedback and Biofeedback Therapist is now operating out of VitaCentre in Edgecliff. She is offering a free introductory 1 hour session and 10% discounts for up front payments of 10 sessions @ $80 per session. Contact her on 02-9328-1066, 0434-915-739, or www.vitacentre.com.
Posit Science Corporation has 2 programs that help restore brain function, the memory program "Brain Fitness Program Classic" and the spatial program "Insight". Log onto www.positscience.com for more information. While it is very expensive, it has been taken up in Australia by Alzheimer's Australia WA (08 9388 2800) and is available through them for $450 per program. If you would like further info on how it works read: The Brain that Changes Itself, Norman Dodge, MD, Chapter 2, "Redesigning the Brain". It's in bookstores now. Given the similarities in brain decline between long term ME/CFS and Alzheimer's there may be some hope of benefits to ME/CFS sufferers.
The Holdsworth Community Centre in Woollahra launched a book in December called "Opening The Doors: The Hidden Life of Carers". Carers may find the book to be a useful resource. It sells for $12 onsite, or $15 if posted. For more information, log on to: http://www.holdsworth.org.au/events.htm.
For a very balanced discussion with Andrew Lloyd outlining some of the challenges of ME/CFS, log on to:
http://www.abc.net.au/rn/allinthemind/stories/2007/1945419.htm.
The website www.mecfshints.com contains a collection of practical hints for those suffering from ME/CFS including information about services and resources, with contact details to support and assist sufferers, their carers, families, friends, and health care practitioners.
"Life Goes On" is an organisation whose stated aim is to help sufferers of long term illnesses get more ore out of their lives. They have a web site www.lifegoeson.org.au which will shortly have the capacity for online counselling as well as a 24/7 counselling hotline - 1-300-364-673. The Society have investigated this service and apparently the 24/7 hotline is not yet quite on the mark due to a lack of counsellors, so after midnight you will be put through to a message service and your call will be returned next day.
The society has followed up on "Home Instead Senior Care" and apparently they are willing to assist ME/CFS sufferers, but it is an expensive service, so probably only useful for those of independent financial means. While their services are actually tailored to seniors who want to remain in their own homes, their services are also suitable for ME/CFS sufferers. They can do everything from escorting you to appointments etc to light housekeeping, cleaning out cupboards, laundry, ironing, supervision of home maintenance, assisting with airport and travel needs, shopping etc. Their services are apparently available 24 hours a day, seven days a week, and I am assuming are on a chargeable basis - but it would be worthwhile checking if they can offer you any sort of discount or other arrangement in conjunction with other government agencies. They have 3 locations in Sydney - Northern Sydney 02-9144-2322; Eastern Suburbs 02-9387-4800; and North West Sydney 02-9816-1599. Or you might like to get your health care professional to call them on your behalf.
If you need additional help in order to be able to stay at home, contact Commonwealth Carelink Centres on (Freecall) 1-800-052-222 or log on to www.comcarelink.health.gov.au to get information about services in your local area.
If you find you are having trouble making doctor or hospital visits because you can't drive yourself, cannot afford taxis or cannot manage the hours spent on public transport, Sir Roden Cutler Charities may be able to assist you. They have a number of vehicles, some wheelchair capable, and volunteer drivers, and will drive you to and from your appointments. Contact them on 02-9362-4430. I was once the secretary to this organisation when it was in its infancy, and they do a fantastic job. Just be aware that there a many calls for their services, so don't try to use it for non-essential visits. Also, many of the local councils provide transport for some purposes to pensioners. I know one member was allowed one pick up and drop off per month to attend support group meetings. So it is definitely worth contacting them.
Australian Biologics Testing Services Pty Ltd is a company that provides many of the specialised testing procedures that ME/CFS sufferers find more useful than traditional diagnostics. Amongst other things they test for Allergies, Heavy Metals, Nutrient & Mineral Levels, Specific Organ Function, Immune Status, and Digestive Abnormalities. They also put out a booklet of recommended practitioners who support such testing - or who are able to decipher the result and treat accordingly. Call Aust Biologics on 9283-0807, email austbio@mpx.com.au or go to their website www.australianbiologics.com.au to get a copy of the brochure (ref: ABTS C:\Book2 Reception\p25. Among the doctors & clinics recommended is Dr Richard Schloeffel at the Pymble Grove Clinic.
For those of you who have not yet found it, US doctor, Dr David Bell puts out a publication dealing with CFS called the Lyndonville News, log on to www.DavidSBell.com to download past issues or to subscribe to these irregular but interesting papers on his experience in treating CFS.
The company ProHealth also has a CFS Edition of their Immune Support Newsletter. As it is a company, they do flog a number of products, so you may want to exercise a touch of discretion, however, they too have a regular newsletter that you can subscribe to. Log onto www.immunesupport.com and select CFS Edition - CFS & FM Treatment and Research News to see up to date news or to subscribe to their newsletter.

**Please be advised that any neither I or the ME/CFS Society of NSW Inc specifically endorse any of the medical opinions, research, treatments, therapies, services, etc that may be included in this newsletter or discussed by members at meetings. At this point in time there is no confirmed cause/s, universally agreed diagnosis, or cure/s for ME/CFS, and any material provided in this newsletter is provided to you for your information only. We strongly recommend that you obtain a medical confirmation of your illness and discuss any potential changes in your treatment or therapies with your medical practitioner.

Bronwyn M Beere
Eastern Suburbs ME/CFS Support Group
c/- ME/CFS Society of NSW