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ME/CFS AUSTRALIA (SA) INC

Registered Charity 698

Email:
sacfs@sacfs.asn.au

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

Office:
Closed while relocating

Phone:
1300 128 339

Office Hours:
Wednesdays, 10am-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 2016
Saturday 20 February 2016
1:30pm
Dr Katia Ferrar and Ms Minh Pham from the University of South Australia discuss the research study “Physical activity and time use patterns of adults with chronic fatigue syndrome”.

Saturday 9 April 2016
1:30pm
A screening of the ME/CFS documentary, Forgotten Plague.

Saturday 25 June 2016
1:30pm
Dr Ian Buttfield discusses the ANRES website.
Mr Max Nelson discusses his PhD and two-day bike test study.
Dr Katia Ferrar presents an information document on her research.

Saturday 27 August 2016
Annual General Meeting
1:30pm
Dr Bruce Wauchope gives an update on a proposed ME/CFS clinic [download pamphlet], and talks about the stepped, problem-solving approach to their treatment protocol.

Saturday 19 November 2016
1:30pm
Dr Rachel Wells talks about the new Autonomia Clinic at the Royal Adelaide Hospital and what they are doing about POTS and other dysautonomia symptoms common in ME/CFS.
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 – Adult & Paediatric:
International Consensus Primer for Medical Practitioners
(2012)

PDF

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

PDF

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

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
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: (08) 8346 3237 or 1300 128 339 for country callers
Web: www.sacfs.asn.au
Email: sacfs@sacfs.asn.au
VICTORIA
TASMANIA
NORTHERN TERRITORY

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. Please 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.

 

Tribunal Was Right To Order Release Of Chronic Fatigue Trial Data

International news

Sunday 28 August 2016

 

From The Conversation:

 

Gavel
 

Tribunal was right to order release of chronic fatigue trial data

Jo Edwards, UCL
August 27, 2016

After nearly four months deliberation a tribunal has dismissed an appeal made by Queen Mary University of London (QMUL) against a requirement to release data from the PACE trial – a trial that investigated treatments for chronic fatigue syndrome. This is an important step towards the increased transparency we need for balanced analysis of clinical trials where the methodology is questionable.

Chronic fatigue syndrome (CFS), otherwise known as myalgic encephalomyelitis, is a disabling condition affecting about one in 500 people. We know almost nothing about its causes, but in some cases it appears to follow infection or involve disturbances to the immune system. The key feature of the syndrome is an intolerance of physical exertion with a worsening of fatigue, sometimes a considerable time after exertion, often referred to as a crash.

Without evidence for a mechanism, treatment is by trial and error. The PACE trial compared cognitive behavioural therapy (CBT), graded exercise therapy (which uses a progressive increase in exercise), self-pacing and standard care (chiefly a leaflet containing advice). PACE was large and participants were randomly assigned to treatment groups but it was unblinded and so not in a true sense controlled. Patients knew which were favoured treatments (CBT and graded exercise) and which were intended to be the dummies (pacing and standard care). The outcome was then measured by questionnaire.

An unblinded trial with a subjective measure for the outcome would not normally be acceptable in medicine and clinical pharmacology, but seems to be in psychiatry. Specifically, the trial was criticised on the basis that chosen measures of treatment success were changed midway through the trial and criteria for recovery overlapped with criteria for being ill enough to enter the trial.

The findings of the PACE trial were published in The Lancet in 2011. The authors claimed a benefit for CBT and graded exercise, but not for self-pacing. After its publication, several applications were made through Freedom of Information Act (FOI) legislation to review the raw data to allow re-analysis.

Patients and carers are concerned that graded exercise may make things worse for those with the condition and dislike the message that continued illness is due to false beliefs and unhelpful behaviours (such as avoiding activity), which seem to be the target of CBT. Both patients and scientists are concerned that the trial results were overstated as showing a useful effect of CBT and graded exercise. In particular, a follow up study by the PACE group was interpreted as showing continued benefit from these treatments when in fact it shows no difference between groups.

People
The results of CBT were overstated. Photographee.eu/Shutterstock

Until recently, access to data has been declined, but a recent request under the FOI by Alem Matthees, a CFS sufferer from East Perth, Australia, was approved by the UK’s information commissioner. QMUL appealed but their appeal has now been dismissed by the information rights tribunal.

Good science doesn’t need protection

The detail of the tribunal report is interesting; it reveals the complexity of data protection and the arguments on both sides. QMUL claimed that releasing data would breach patient confidentiality, might jeopardise follow up studies and damage the reputation of the college. Matthees pointed out, and the commissioner agreed, that since the QMUL team had already made the data available to chosen colleagues the first argument was unconvincing. It was unclear why access by other researchers to the data would threaten follow up studies. Matthees argued that QMUL would be more likely to damage its reputation by losing patient trust.

The core of the dispute appears to be that the QMUL authors feel they are entitled to protect their study from those who might wish to discredit their interpretation. Hopefully, we are moving towards a consensus that there is no such entitlement. If scientific interpretation is poor it deserves no protection. If it is good it needs none.

The essence of the response from the information commissioner was that the QMUL authors had overstated their case in terms of likely damage from release of personal data. The authors and one witness painted a picture of irresponsible animal rights-type activists who might deliberately target trial patients as part of a political smear campaign. Essentially the authors were claiming that because those asking for data were patients or others associated with them they should not be considered responsible enough to have access to anonymised data. In the end they had to admit they had no grounds for this view.

From my perspective the importance of this decision is in emphasising that everyone has the right to access to scientific data and to express their opinion. Confidentiality of patient identity is essential but should not be used as a smokescreen. If scientists knew when they entered data into workbooks or spreadsheets that everyone would be entitled to scrutinise them the quality of data collection and interpretation might improve a great deal.

Jo Edwards, Professor emeritus, UCL

This article was originally published on The Conversation. Read the original article.

 

Full article…

 
 
 

Stressful Events In The Onset Of Chronic Fatigue Syndrome

International news

Sunday 28 August 2016

 

From PubMed:

 

PubMed.gov
 

Stressful Events in the Onset of Chronic Fatigue Syndrome.

[Article in English, Spanish]

Gimeno Pi I1,
Guitard Sein-Echaluce ML2,
Rosselló Aubach L3,
Torres Puig-Gros J4,
Fernández Solà J5.

1Centro de Atención Primaria 1er de Maig. Institut Català de la Salut. Lleida, España
2Facultad de Enfermería y Fisioterapia. Universidad de Lleida, Lleida. España.
3Unidad de Reumatología. Hospital Universitario Santa María. Lleida. España.
4Servicio de Vigilancia Epidemiológica. Departamento de Salud. Lleida. España.
5Unidad de Fatiga Crónica. Hospital Clínic. Universidad de Barcelona. España.

BACKGROUND:

Chronic Fatigue Syndrome (CFS) is a complex and multifactorial disease. Stressful situations experienced could be related to the presentation of the disease. Few studies have determined which factors could trigger CFS. The main objective of this study was to explore the stressful situations which can be associated with CFS presentation.

METHODS:

Retrospective observational case-control study with CFS diagnosed patients according to the Fukuda's criteria. Controls were matched to cases by sex, age and educational level with a 1:1 ratio. Participants aged between 18 and 75 years from the province of Lleida. Information was obtained through personal questionnaires. The measure of association was the odds ratio.

 

Full article…

 
 
 

Society AGM Reminder

South Australian news

Saturday 27 August 2016

 

A reminder that the Society's Annual General Meeting for this year will be held today (Saturday 27 August 2016):

 

ME/CFS Australia (SA) Inc
 

Society Seminar

Saturday 27 August 2016
1:30 pm

Location: Sophia House, 225 Cross Road, Cumberland Park

Speaker:

Dr Bruce Wauchope gives an update on a proposed ME/CFS clinic [download pamphlet], and talks about the stepped, problem-solving approach to their treatment protocol.

 

Details…

 
 
 

The Society's New Office

South Australian news

Friday 26 August 2016

 

Society office
 

The new office for ME/CFS Australia (SA) Inc is now open on Wednesdays between 11 am and 3 pm in Suite 506, 19 North Terrace, Hackney.

Take the lift to the fifth floor, and turn right as you leave the lift. The office is the second door on the right. The date of an “Official Opening” will be announced soon.

On-street parking is available on North Terrace, Nuffield Lane (east of building) and Westbury Street to the north. While roadworks are in progress there is no access to Westbury Street from Hackney Road.

Hackney Gourmet Café & Snack Bar is located on the ground floor.

 

Read more…

 
 
 

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

South Australian news

Friday 26 August 2016

 

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…

 
 
 

Society AGM Reminder

South Australian news

Thursday 25 August 2016

 

A reminder that the Society's Annual General Meeting for this year will be held this Saturday (27 August 2016):

 

ME/CFS Australia (SA) Inc
 

Society Seminar

Saturday 27 August 2016
1:30 pm

Location: Sophia House, 225 Cross Road, Cumberland Park

Speaker:

Dr Bruce Wauchope gives an update on a proposed ME/CFS clinic [download pamphlet], and talks about the stepped, problem-solving approach to their treatment protocol.

 

Details…

 
 
 

UK High School A-Level Student Over The Moon With An A* And Two As Despite Suffering From Chronic Fatigue

International news

Wednesday 24 August 2016

 

From UK newspaper Stroud News & Journal:

 

Jessica Bragg
Jessica Bragg
 

Stroud High School A-level student Jessica Bragg over the moon with A* and two As despite suffering from chronic fatigue

By Megan Titley, Reporter
19 August 2016
©Copyright 2001-2015

BATTLING sleep deprivation is part and parcel of studying for exams but for an A-level student at Stroud High School exhaustion never left her.

Jessica Bragg, who studied psychology, music and English literature, was over the moon with her grades, an A* and two As.

She will go on take a degree in psychology in Cardiff as a result.

 

Full article…

 
 
 

Researchers Who Claimed Chronic Fatigue Is "All In The Mind" Forced To Disclose Data

International news

Tuesday 23 August 2016

 

From What Doctors Don't Tell You:

 

Woman
 

Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data

By Bryan Hubbard
August 22nd 2016
© 2010 - 2016 WDDTY Publishing Ltd. All Rights Reserved.

Researchers of a controversial study, which had effectively implied that chronic fatigue syndrome (CFS) is ‘all in the mind’, have been forced by a tribunal to release their data so that independent researchers can assess their findings.

The action had been started by a CFS patient, Alem Matthees, under Freedom of Information legislation, who says the case had cost him greatly in time, energy and health, and as a result, he was now bed-ridden.

 

Full article…

 
 
 

Volunteers Wanted For UniSA Research

South Australian news

Tuesday 23 August 2016

 

From the University of South Australia's Max Nelson (via email):

 

University of South Australia
 

UniSA 2-day testing study

Researchers at the University of South Australia are looking for ME/CFS sufferers and healthy controls aged 18-65 to take part in a study which aims to investigate how non-invasive heart rate measures can be used to monitor post-exertional malaise. The study employs a 2-day maximal testing protocol, which has previously been shown to provide information on post-exertional malaise in ME/CFS patients, and may in addition be able to provide evidence on a reliable biomarker within the ME/CFS population.

Testing will all take place at the University of South Australia High Performance and Exercise Physiology Clinic located at the UniSA City-East campus on the corner of North Terrace and Frome Road. Testing will consist of one short familiarisation session (45 minutes), and two maximal testing sessions (90 minutes each). The maximal testing sessions need to be completed on consecutive days.

Appointments are available 7 days a week, at any time between 8am and 6pm.

The 2-day testing protocol is very strenuous, and the current study aims to determine if the need for 2 physically taxing exercise tests can be reduced through the use of heart rate monitoring. We understand that the testing will be physically taxing, so we have beds available to recover on following the maximal testing sessions.

This research has the potential to both generate further evidence of a diminished capacity for physical exertion in ME/CFS sufferers and to provide an additional biomarker that can be used to illustrate the presence of ME/CFS. All participants will be provided with a detailed report on their performance and the presence of post-exertional malaise which can be given to their specialists.

The researchers are also looking for matched healthy control participants to take part in the study. Healthy controls need to be healthy and injury free, and of a similar age/body mass index/gender as the CFS/ME participants.

The ME/CFS patients will get a detailed report on their post-exertional malaise, and for the healthy participants they get information on their VO2 max and overall fitness. Usually a consult of this type costs $150 at our clinic, so they get that part for free!

For further information, please see the information sheets below, or contact:

Mr Daniel Clark (Daniel.Clark@unisa.edu.au, ph 8302 1365); or
Mr Max Nelson (Max.Nelson@unisa.edu.au, ph 8302 1502).

Download:

DOC ME 2-day test Info sheet (DOCX, 26 KB)
PDF ME 2-day test Info sheet (PDF, 442 KB)

DOC ME-CFS Advertising Material (DOCX, 18 KB)
PDF ME-CFS Advertising Material (PDF, 219 KB)

 
 
 

International ME/CFS Conference Airs Exciting Research Prospects

International news

Monday 22 August 2016

 

From New Zealand's Stuff:

 

Dr Rosamund Vallings
Dr Rosamund Vallings
 

International ME/CFS conference airs exciting research prospects

By Meghan Lawrence
August 19, 2016
© 2016 Fairfax New Zealand Limited

After a recent international ME conference in London, ME/CFS patients are closer to a future of understanding and recognition than ever before.

Dr Rosamund Vallings​, of Howick Health and Medical Centre, in Auckland, attended the conference in June and has returned home excited about the prospects of various international research paths.

 

Full article…

 
 
 

More In The News


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