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ME/CFS Australia Ltd
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ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:
PO Box 28,
Hindmarsh,
South Australia 5007

Office:
Suite 506,
North Terrace House
19 North Terrace,
Hackney, SA, 5069


Phone:
1300 128 339

Office Hours:
Wednesdays, 11am-3pm

ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

Disclaimer

ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.

Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.

Support

Eco Pest Control

ME/CFS Australia (SA) Inc wishes to thank Eco Pest Control for its support of the Society.

BankSA & Staff Charitable Fund

ME/CFS Australia (SA) Inc wishes to thank BankSA & Staff Charitable Fund for its support of Talking Point, the Society’s official journal.

Society Seminars for 2017
Saturday 8 April 2017
1:30pm
Speaker: David Mitchell
Topic: What do genes, hormones and supplement insufficiencies have to do with ME/CFS?

Saturday 24 June 2017
1:30pm
Speaker: Dr Richard Kwiatek

Saturday 26 August 2017
1:30pm
Speaker: Dr Ros Vallings (via live video from New Zealand)
Topic: The Invest in ME Conference held in London in June 2017

Saturday 18 November 2017
1:30pm
(Speaker to be confirmed)
Details for all seminars…

ME/CFS Diagnostic Criteria and Guidelines

www ME: International Consensus Criteria
(Journal of Internal Medicine, Aug 2011)
PDF

For GPs:
ME/CFS Primer for Clinical Practioners - 2014 Edition

PDF

ME/CFS Guidelines for GPs
(SA Department of Health)

PDF

ME/CFS Guidelines for psychiatrists

PDF

ME/CFS: A Clinical Case Definition and Guidelines for Medical Practitioners
– An Overview of the Canadian Consensus Document
(2005)

  Note: See here for an overview on the Canadian Consensus Criteria for Fibromyalgia (PDF, 1.70 MB)
 
Australian ME/CFS Societies
AUSTRALIA
ME/CFS Australia Ltd.
Web: mecfs.org.au
Email: mecfsaustralia@gmail.com
AUSTRALIAN CAPITAL TERRITORY
ACT ME/CFS Society, Inc
Address: PO Box 717, Mawson ACT 2607
Phone: (02) 6290 1984
Fax: (02) 6290 4475
Web: www.mecfscanberra.org.au
Email: mecfsadmin@shout.org.au
NEW SOUTH WALES
ME/CFS & FM Association NSW
Web: www.mecfsnsw.org
Facebook: ME/CFS & FM NSW Support Group
Facebook: Chronic Fatigue Syndrome NSW
QUEENSLAND
ME/CFS/FM Support Association Qld Inc
Address: c/o Mission Department, St. Vincent’s Hospital, Toowoomba Qld 4350
Phone: (07) 4632 8173
Web: www.mecfsfmq.org.au
Email: mefmtba@bigpond.com
Facebook Page
SOUTH AUSTRALIA
ME/CFS Australia (SA) Inc
Postal address: PO Box 28, Hindmarsh SA 5007
Support line: 1300 128 339
Web: www.sacfs.asn.au
Email: sacfs@sacfs.asn.au
VIC/TAS/NT
Emerge Australia
Web: emerge.org.au
WESTERN AUSTRALIA
The ME/CFS Society of WA (Inc)
Address: The Centre for Neurological Support, The Niche, 11 Aberdare Road, Nedlands, Perth WA 6009
Phone: (08) 9346 7477
Fax: (08) 9346 7534
Web: www.mecfswa.org.au
Email: info@mecfswa.org.au

 

Please note: This page reports a wide range of news items about ME/CFS and Fibromyalgia, not all positive or underpinned by science. See our Disclaimer (below left). If you see views that contradict the reality of the illness, please make it known to the writers or publishers of such articles – this will help to spread awareness amongst the general public.

 

Action For M.E. Launches Pharmacy Resource

International news

Monday 29 May 2017

 

From Action for M.E.:

 

Action For M.E.
 

Action for M.E. launches pharmacy resource

May 26, 2017
© 2017 Action for M.E. Charity registered in England and Wales: 1036419. Registered in Scotland: SC040452.

Action for M.E. has launched an M.E. information resource for community pharmacy teams across the UK, M.E./CFS: a guide for pharmacy teams.

In response to the growing need for community pharmacists to take a greater role in the delivery of primary care for people with long-term conditions, this resource includes information on:

  • pharmalogical management of M.E.
  • issues with polypharmacy
  • delivering pharmacy services to people with M.E.

We are hugely grateful to our pharmacist and Action for M.E. volunteer Emily Beardall who wrote the resource, and continues to devote considerable time, energy and expertise to engaging with health professionals and improving outcomes for people with M.E.

PDF Download M.E./CFS: a guide for pharmacy teams

 

Full article…

 
 
 

ME/CFS Australia (SA) Inc Co-Signs International Open Letter

South Australian news

Monday 29 May 2017

 

ME/CFS Australia (SA) Inc
 

ME/CFS Australia (SA) has signed an open letter to the journal Psychological Medicine asking for the 2013 PACE paper to be retracted.

By Deborah Marlin, Committee Member
Originally published on 30 March 2017

No doubt you will remember the PACE trial, a research study conducted in the UK looking at the effectiveness of GET (graded exercise therapy) and CBT (cognitive behaviour therapy) in the treatment of ME/CFS.

In 2013 the research team published a paper in the journal Psychological Medicine, in which they stated that each of these treatments led to recovery in 22% of patients, compared with only 7% in a comparison group. The two treatments, they concluded, offered patients “the best chance of recovery.”

There has been much criticism of the research methods used in this study from other researchers and from the ME/CFS community. ME/CFS Australia (SA), also, has serious concerns about methodological design flaws in the PACE trial.

 

Read more…

 
 
 

Leeds Chronic Fatigue Sufferer: 'No One Really Knows What Causes My Illness'

International news

Sunday 28 May 2017

 

From UK newspaper the Yorkshire Evening Post:

 

Hattie Hodgson-Crome
SPEAKING OUT: Hattie Hodgson-Crome, who is sharing
her experience with chronic fatigue syndrome in the
hope of raising awareness.
 

Leeds chronic fatigue sufferer: ‘No one really knows what causes my illness’

Monday 22 May 2017
© 2017 Johnston Publishing Ltd. All rights reserved.

Feeling extremely fatigued, having time off work, spending weeks in bed and battling for a diagnosis to make professionals accept it.

Those are the symptoms of chronic fatigue syndrome, also known as myalgic encephalomyelitis (ME), a long-term illness that can cause extreme tiredness.

“Getting the diagnosis was such a mixed feeling. On the one hand, it was a huge relief,” says Hattie Hodgson-Crome, from Kirkstall, who suffers from ME.

“I knew that I wasn’t just pathetic, there was something going on that was medically recognised.

“On the other hand, I knew that no one really knows what causes ME, and that there are no real treatments at present.

“I knew that an ME diagnosis was one that meant that I was likely to be ill, and limited, for many years. Possibly my whole life.”

 

Full article…

 
 
 

Entertainment Book

South Australian news

Saturday 27 May 2017

 

ME/CFS Australia (SA) Inc

Dear Friends,

Here is an opportunity to support our community with minimal cost to health.

Please share widely and let family and friends know that they can purchase their Entertainment Books from us.

For many of us who are unable to dine out, there are many other savings available such as discounts from selected supermarkets and other retailers.

The books and/or vouchers come in handy as gifts for others too!

Kind regards,

Management Committee

 

Read more…

 
 
 

UniSA Gaming Study Recruitment

South Australian news

Saturday 27 May 2017

 

From the University of South Australia (via email):

 

Gaming
 

Participants sought for pacing study

Are you 18-65 years old and have been diagnosed by a GP or medical practitioner as having ME/CFS and do not currently play active video games?

If so, you may be eligible to participate in our study titled: 'Pacing to increase physical activity for adults with ME/CFS: Are active video games a feasible and acceptable strategy?'

Pacing is commonly used by people with ME/CFS to manage their available energy and achieve daily activities while avoiding flare-ups. Pacing can also be used to slowly increase physical activity levels – but very little research has investigated this approach. Recently, the rise of active video gaming has also provided an option for people experiencing barriers to physical activity participation – but there is no information whether this is feasible or acceptable for people living with ME/CFS. Understanding the links between physical activity and inflammatory pathways in the body may help us to understand the mechanism behind ME/CFS.

The pilot study involves pacing to manage symptoms, and gradual attempts to increase physical activity by replacing other physically passive activities using conventional activity (such as resistance exercise or walking) or active gaming (Xbox Kinect either sitting/reclining or standing) over a 6 month period. Heart rate monitoring is integral to the study and will be used to assess the safety of activity levels. At the end of the intervention, participants will be able to keep an active gaming console as compensation for their time.

The study protocol has been developed by extensive consultation with the ME/CFS community and a Stakeholder Advisory Group made up of medical specialist, support group representatives and people living with ME/CFS. The study has been approved by the UniSA Human Research Ethics Committee.

If you are interested in this study or would like further information, please contact Daniel Clark from the University of South Australia (email Daniel.Clark@unisa.edu.au) or the UniSA Clinical Trials Facility (ph. [08] 8302 1365). People who cannot tolerate more than five minutes of moving images (e.g. TV) should not apply.

We look forward to hearing from you.

Kind regards,

Daniel Clark
Accredited Exercise Physiologist
Research Assistant
University of South Australia

PDF Download this document (PDF, 83 KB)

 
 
 

South Australian Health And Medical Research Institute (SAHMRI) Calling For Research Participants

South Australian news

Friday 26 May 2017

 

From the South Australian Health and Medical Research Institute (via email):

 

SAHMRI
 

South Australian Health and Medical Research Institute (SAHMRI)

Research participants wanted

Chronic fatigue syndrome: Leptin, interleukin 6 and clinical symptoms.

What is Chronic Fatigue Syndrome?

Chronic fatigue syndrome (CFS) is characterised by a constellation of symptoms in previously healthy and active individuals.

Because of these symptoms, quality of life of people with CFS can be extremely compromised. While the search for a clear-cut cause remains elusive, we believe that we can make a major contribution to a person’s quality of life by elucidating the biological basis of their clinical symptoms.

If the biology underlying the disabling symptoms of CFS is elucidated, we will be able to target treatments aimed at symptomatic improvement.

What is the purpose of this study?

To evaluate the relationship of the hormones (cytokines) Leptin and Interleukin-6 on the symptoms of Chronic Fatigue Syndrome. We can test these by using a blood sample. We are also embarking on the development of a genetic database for CFS.

 

Read more…

 
 
 

Lawsuit At Columbia University Roils Prominent Chronic Fatigue Syndrome Research Lab

International news

Friday 26 May 2017

 

From Science:

 

Ian Lipkin
Ian Lipkin is being sued by his
long-time collaborator Mady Hornig.
[Photo: Joshua Bright/The New York Times]
 

Lawsuit at Columbia University roils prominent chronic fatigue syndrome research lab

By Meredith Wadman
May 23, 2017
Posted in: Scientific Community
DOI: 10.1126/science.aal1226
© 2017 American Association for the Advancement of Science. All rights Reserved.

A sex discrimination lawsuit filed last week has exposed a nasty fight roiling one of the most prominent, and well-funded, labs studying the mysterious condition known as chronic fatigue syndrome/myalgic encephalopathy (CFS/ME). The lengthy list of accusations, the most gossipy of which sparked coverage by the tabloid New York Post, include diversion of federal and foundation grant money.

Ian Lipkin of Columbia University, a well-known virologist who probes links between microbial infections and neuropsychiatric disorders, is being sued, along with the university, by epidemiologist Mady Hornig, his long-term collaborator. In the lawsuit, filed on 15 May in the U.S. District Court for the Southern District of New York, Hornig alleges that Lipkin for years has discriminated against her on the basis of sex and created a hostile work environment, violating U.S. and New York civil rights laws. In particular, it alleges that Lipkin took credit for Hornig’s work; diverted or misused funds, thus delaying the publication of Hornig’s research results; undermined her relationships with external collaborators and potential donors; and improperly added himself as principal investigator to grants.

 

Full article…

 
 
 

Hendon Primary Says #SockItToME

South Australian news

Thursday 25 May 2017

 

From the Society's Facebook page:

 

Aidan
Aidan!
 

Hendon Primary says #SockItToME

Friday 12 May 2017

Last year Pooraka Primary School got the ball rolling, and on May 12th, International ME/CFS Awareness Day 2017, Hendon Primary School held a crazy sock day awareness/fundraiser to say #SockItToME! They spoke about it at an assembly earlier in the week and the students were extremely excited to be creative and wear their crazy socks for the day.

Here is Super Hero Aidan [pictured right] looking cool in his super hero socks and with his teacher, Ms Quinn, they set the scene for a crazy day of socks.

One of the children has a father with ME/CFS so it is especially heartening to see the support from within the school community.

Thank you to Aidan and Tracey Doherty and Hendon Primary School for holding such a successful awareness/fundraiser for our community.

For more of what happened in Adelaide and around Australia for May awareness go to www.May12th.org.au.

 

Full article (with more photos)…

 
 
 

Massachusetts Governor Charlie Baker Issues Proclamation For ME Awareness

International news

Thursday 25 May 2017

 

From US newspaper Danvers Wicked Local:

 

Massachusetts Governor Charlie Baker et al
Danvers resident Elizabeth Potter, vice president of the
Massachusetts CFIDS/ME & FM Association, is holding
the governor's proclamation for ME Awareness Day with
Rep. Ted Speliotis, D-Danvers.
Pictured, from left: Robert Price, ME/CFS advocate;
Rivka Solomon, patient and ME/CFS advocate;
Dr. Michael van Elzakker, ME/CFS researcher MGH and
Harvard Medical School; Leah Williams, parent of
two children with ME/CFS and treasurer of
Massachusetts CFIDS/ME & FM Association; and
Charmian Proskauer, president of the
Massachusetts CFIDS/ME & FM Association.
[Courtesy Photo]
 

Gov. Baker issues proclamation for ME awareness

Posted May 23, 2017
© GateHouse Media, LLC. All rights reserved • GateHouse News

On May 9, at the State House in Boston, with Lt. Gov. Karyn Polito and Sen. Stan Rosenberg, D-Hampshire attending, the state’s first Proclamation for ME Awareness Day, May 12, 2017, was presented to people with the severe neuro-immune disease ME — myalgic encephalomyelitis. The proclamation was issued by Gov. Charlie Baker upon the request of the Massachusetts CFIDS/ME & FM Association.

ME, also known as chronic fatigue syndrome or ME/CFS — a name eschewed by patients and disease experts — is a devastating disease with no diagnostic test, no FDA-approved treatment and no cure. ME/CFS disables 28,000 Massachusetts residents, up to 2.5 million Americans and 17-20 million individuals worldwide. There are an estimated 112 Danvers residents afflicted with ME/CFS, yet it gets little attention and barely any federal research funding, leaving patients severely debilitated for life and with little hope for improvement. Securing state proclamations is a grassroots effort by people with ME to raise awareness about the lack of health equality for ME patients, many of whom have spent decades homebound and bedridden with little or no assistance. Some patients are so weak they cannot feed themselves. To date, state proclamations or resolutions for ME have only been secured in Alabama, Georgia, Illinois and now Massachusetts.

 

Full article…

 
 
 

I Became Chief Executive Of A UK M.E. Charity - And Then My Son Was Diagnosed With M.E. Too

International news

Wednesday 24 May 2017

 

From The Huffington Post:

 

Sonya Chowdhury
Sonya Chowdhury
 

I Became Chief Executive Of A UK M.E. Charity - And Then My Son Was Diagnosed With M.E. Too


By Sonya Chowdhury
Chief Executive of UK charity Action for M.E., working with children, families and adults affected by the neurological condition M.E.
22/05/2017
© 2017 AOL (UK) Limited its affiliates and licensors.

It really didn’t occur to me that it could happen to me. A year into my new role as charity Chief Executive, I had been contacted for information and support by so many parents of children living with the chronic, neurological illness, M.E. And then I became one of those parents myself.

Our youngest son, Danny, had just reached his 11th birthday when he became ill with a chest infection. Despite visits to the GP and all the usual treatments, he never got better. Danny couldn’t get out of bed and for several weeks, laid there with the light off. Despite sleeping so much, he was always exhausted, in pain and couldn’t tolerate noise: the sound of my laugh made him hurt. Any activity seemed to knock him out and make his extreme exhaustion worse for several days. Even getting to the bathroom seemed impossible.

We eventually had a diagnosis of M.E., an illness also frustratingly known as chronic fatigue syndrome, or CFS. I am so fed up of having to explain to people that Danny is not just tired; if only that were the case. We have lost friends, good friends, when we ran out of patience with explaining that Danny was off school so much, not because he had friendship issues or didn’t like his classes, but because he had an illness that seemed to be eating him up from the inside, despite it not really being visible on the outside.

 

Full article…

 
 
 

SMCI Collaborates In The Publication Of New ME/CFS Pediatric Primer With Dr Peter Rowe

International news

Tuesday 23 May 2017

 

From the Solve ME/CFS Initiative:

 

Dr Peter Rowe
Dr Peter Rowe
 

SMCI Collaborates in the Publication of New ME/CFS Pediatric Primer with Dr. Peter Rowe

May 22, 2017
Copyright © 2017 The Solve ME/CFS Initiative

A new primer focusing on the pediatrics aspect of ME/CFS was recently accepted for publication in the Journal Frontiers in Pediatrics. The work was the vision of colleagues at the New Jersey ME/CFS Association who assembled a team of experts to develop this material. Collaborations like this, in which different entities come together to realize a project, will significantly advance the knowledge about this disease.

Dr. Peter Rowe, lead author of this primer, and a member of the SMCI Research Advisory Council, described the genesis and importance of this effort:

“Three years ago, Ken Friedman, Alan Gurwitt, and Rosemary Underhill invited an international group of experienced ME/CFS clinicians to write a comprehensive guide to the diagnosis and management of ME/CFS in adolescents and young adults. The IACFSME had published a guide for adults, but there was no similar publication to help clinicians manage the unique aspects of ME/CFS in children and adolescents.”

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Tuesday 23 May 2017

 

From The CONVERSATIONS Project (via email):

 

The Conversations Project
 

Consumer Expectations & Experiences of the Health Care System – An International Study

The CONVERSATIONS Project
January 30, 2017

Do you want your voice to be heard?

Participants are needed for an online survey (about 20 mins). Researchers from University of SA and Flinders University are looking to understand consumer health care needs.

Your support in this study will help us to understand your health care needs, determine how responsive your health system is to your needs, and identify areas where health systems could improve to better serve these needs. In appreciation you will be invited to enter a draw to win one of 10 x AU$50 Visa Cards. You will also have the opportunity to receive a copy of the findings.

The survey can be found at https://www.surveymonkey.com/r/CONVERSATIONS-2016.

For more information go to www.conversations-project.info.

#MECFS #MECFSResearch

 
 
 

More In The News


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