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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
Topic: Brain structural changes in ME/CFS – recent research findings

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
Annual General Meeting
1:30pm
Speaker: Max Nelson
Topic: Results of the two-day bike test study.
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.

 

A Pocket Guide To Chronic Fatigue Syndrome

International news

Saturday 19 August 2017

 

From MiNDFOOD:

 

Dr Rosamund Vallings
Dr Rosamund Vallings
 

A Pocket Guide To Chronic Fatigue Syndrome

By Donna Duggan
August 15, 2017
© MiNDFOOD 2013. All Rights Reserved.

Dr Rosamund Vallings, author of The Pocket Guide to Chronic Fatigue Syndrome/ME has been a lifeline for sufferers of Chronic Fatigue Sydnrome, helping them manage their symptoms and understand exactly what is going on with their bodies. She talks to MiNDFOOD about the debilitating illness.

What is CFS/ME?

A neuro-immunological illness usually triggered by a viral infection, which causes abnormalities such as overactivity in the immune system – which then leads to a number of symptoms, which can often be severe enough to cause the person to be bedridden. The illness can be diagnosed after 6 months duration, but can last for years. It affects all ages groups. It affects 3-4 people per thousand.

What led to your interest and expertise in the field?

I learnt about the illness at medical school and later on got involved with some early research, which then led to my meeting a number of patients with what was then considered quite a mysterious illness. I became fascinated in this quest for understanding and treatment.

 

Full article…

 
 
 

M.E. Meant This Blog Took Me Several Months To Write

International news

Saturday 19 August 2017

 

From The Huffington Post UK:

 

Woman at a window
(BYEBYETOKYO VIA GETTY IMAGES)
 

M.E. Meant This Blog Took Me Several Months To Write

By Isabel Walter
14/08/2017
©2017 Oath Inc. All rights reserved.

On holiday in the Peak District in June 2007, three months after being diagnosed with ME, I sat down one afternoon with a pile of postcards and discovered I could no longer write. The words were clear in my head, but the pen in my hand made only meaningless scribbles, empty scrawls. The connection between them had been severed. It was many terrifying hours before it returned.

This episode was my first real experience of the cognitive dysfunction that’s a core symptom of ME. ME (also known as chronic fatigue syndrome, or CFS) is a neurological disease affecting 250,000 people in the UK, that impairs both body and brain. It’s a 360 disability. Since 2007, my health has deteriorated – by 2009 I was using a wheelchair, and in 2013 became bed-bound – and as my physical functioning has declined, so too has my cognitive capacity. I have problems with memory, attention, concentration, comprehension and language. I can’t listen to the radio, watch TV or use a computer, can’t hold a conversation for more than a few minutes or read more than a couple of sentences. If you know me, you need to know I’ll forget your birthday, or your married name, or that this time of year is difficult for you because it’s when you lost your father, not because I don’t care, but because my illness makes me someone I’m not. While I was still well enough to go outside, I couldn’t work out money in shops, or judge speed and distance to safely cross a road. These days I can’t coordinate a knife and fork; my husband has to cut up my food.

 

Full article…

 
 
 

Entertainment Book

South Australian news

Saturday 19 August 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 19 August 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)

 
 
 

Young Leader On The Road To Recovery And Helping Others

International news

Friday 18 August 2017

 

From New Zealand news outlet Stuff:

 

Leah Baken
Leah Baken talks about her aspirations to help solve
problems in Palmerston North's community.
(Photo: Murray Wilson / Stuff)
 

Young leader on the road to recovery and helping others

By Georgia Forrester
August 16 2017
© 2017 Fairfax New Zealand Limited

Leah Baken used to spend her days being tired, in bed, in pain and unable to move.

But now she is on the road to recovery and plans to help others along the way.

The 24-year-old from Palmerston North has myalgic encephalomyelitis, known as chronic fatigue syndrome, which is thought to be an autoimmune disease.

 

Full article…

 
 
 

Heart And Soul Went Into Latest Adult-Only Novel From Former Grimsby Boxer

International news

Friday 18 August 2017

 

From UK newspaper the Grimsby Telegraph:

 

Michael Nilsen
Grimsby author, Michael Nilsen, with his latest book,
Gorky, which is available in shops and online now.
 

Heart and soul went into latest adult-only novel from former Grimsby boxer

By Peter Craig
August 17, 2017
© Local World

Former boxer turned poet and teacher, Michael Nilsen said he had put his heart and soul into a new adults-only novel he has had published.

The author has already had two volumes of selected poetry published.

The first, Selected Poetry, came out in 2015, with Volume Two a year later. Both were published through Matador Fiction, a branch of Troubador Publishing Ltd, and Michael was delighted when Troubador agreed to publish his first novel, Gorky.

The book is a fantasy adventure novel set in an alternative temporal-space dreamscape, where there are no limits but imagination. Gorky is a water carrier living in the isolated village of Firkin, who sets out to find the legendary Sacredia healing waters to save his tribe, stricken by a mysterious disease.

...

Michael said: “When I was in secondary school, English was my worst subject. I had poor grammar, spelling, punctuation and vocabulary. It was due to prolonged illness, M.E., in my late twenties, that I set about re-educating myself. I never dreamt I would be capable of writing a novel, but you can surprise yourself if you try.

I’ve put my heart and soul into this project. People who have read Gorky so far agree it is well written, one even saying it is 'brilliant', though admittedly that was my mam! There has been a lot of interest expressed on social media. I wait in anticipation how my novel will be received by the general public.

Michael also has personal experience with debilitating conditions, having been diagnosed with Myalgic Encephalomyelitis. ME, or Chronic Fatigue Syndrome, is a chronic condition with extreme tiredness being the main symptom, among a variety of others. Despite this, Michael says that he was up regularly at 4am, polishing and revising the novel, which had been lying dormant for nearly a decade. “I decided to take another look at it with a renewed perspective, deemed elements of it read well,” he says “and went through a process of rigorously rewriting and amending it.” Gorky was the result.

 

Full article…

 
 
 

Forbidden Love, Reincarnation And Spitfires Help Author Sherrie Lowe Cope With ME

International news

Friday 18 August 2017

 

From UK newspaper The Sentinel:

 

Cheryl Warrilow
Author Cheryl Warrilow, who writes under
the pen name of Sherrie Lowe
 

Forbidden love, reincarnation and Spitfires help author Sherrie Lowe cope with ME

By Richard Ault
August 17, 2017
Copyright © 2017 Local World. All Rights Reserved

Isolated at home after being struck down by an illness which causes chronic fatigue, Cheryl Warrilow used to wait, staring out of the window, for her children to return from school.

After previously being a healthy and active mother of two, with a regular job in a busy shop, Cheryl grew increasingly frustrated at her energy loss, and the crippling migraines which can leave her bed-ridden for days at a time, caused by ME (Myalgic Encephalomyelitis).

So, she began to write – and after publishing two memoirs, and several works of fiction, including Arms of Angels, a runner up in The Sentinel's Too Write competition, Cheryl now has ambitions of earning a living as a novelist.

But perhaps more importantly, she says writing has kept her sane and help to stave off the feeling of isolation she suffered after being struck down by ME, a long term and fluctuating condition which affects people in different ways.

 

Full article…

 
 
 

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

South Australian news

Friday 18 August 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…

 
 
 

FITNET's Internet-Based CBT Is Ineffective And May Impede Natural Recovery In Adolescents With ME/CFS. A Review

International news

Thursday 17 August 2017

 

From the journal Behavioral Sciences:

 

Behavioral Sciences
 

FITNET’s Internet-Based Cognitive Behavioural Therapy Is Ineffective and May Impede Natural Recovery in Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. A Review

Simin Ghatineh1 and Mark Vink2,*

1Biochemist, London TW11, UK
2Family Physician, Soerabaja Research Center, 1096 HH Amsterdam, The Netherlands

*Correspondence:
Received: 6 April 2017 / Accepted: 2 August 2017 / Published: 11 August 2017

Abstract: The Dutch Fatigue In Teenagers on the interNET (FITNET) study claimed that after 6 months, internet based cognitive behaviour therapy in adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), led to a 63% recovery rate compared to 8% after usual care, and that this was maintained at long term follow up (LTFU).

Our reanalysis shows that their post-hoc definition of recovery included the severely ill, the unblinded trial had no adequate control group and it used lax selection criteria as well as outcomes assessed via questionnaires rather than objective outcomes, further contributing to exaggerated recovery figures.

Their decision not to publish the actometer results might suggest that these did not back their recovery claims.

Despite these bias creating methodological faults, the trial still found no significant difference in recovery rates (“~60%”) at LTFU, the trial’s primary goal.

This is similar to or worse than the documented 54–94% spontaneous recovery rates within 3–4 years, suggesting that both FITNET and usual care (consisting of cognitive behaviour and graded exercise therapies) are ineffective and might even impede natural recovery in adolescents with ME/CFS. This has implications for the upcoming costly NHS FITNET trial which is a blueprint of the Dutch study, exposing it to similar biases.

 

Full article…

 
 
 

Inspirational Author Kristi Patrice Carter Releases Illustrated Children's Book "Chronic Illness Can't Beat My Superhero Mommy"

International news

Thursday 17 August 2017

 

From PR Buzz:

 

Chronic Illness Can't Beat My Superhero Mommy
 

Inspirational Author Kristi Patrice Carter Release Illustrated Children's book “Chronic Illness Can't Beat My Superhero Mommy”

Many families wonder how to explain something like fibromyalgia to their children in a way that won't leave them upset or frightened. Kristi Patrice Carter tackles this head on in her new children's book “Chronic Illness Can't Beat My Superhero Mommy” and parents couldn't be more pleased.

August 17, 2017

Fibromyalgia can be a challenge to deal with, especially for a mother with an active child or children. In an effort to compassionately explain the difficulties of the health issue to a youngster, popular self-help author Kristi Patrice Carter has announced the release of “Chronic Illness Can't Beat My Superhero Mommy”, a picture book for children explaining life with fibromyalgia, how it can still be lots of fun and full of adventure, as long as the condition is treated with the respect and concern it deserves.

“I've found story telling to be a magnificent way to break down difficult subjects for kids of all ages to understand,” remarked Carter, author or close to a dozen books. “Mom's who fulfill all their responsibilities with more or less of a smile, while dealing with fibromyalgia are true superheros in every sense of the word, so coming up with the title wasn't hard at all.”

“Chronic Illness Can't Beat My Superhero Mommy” is expertly illustrated in full color by Avoltha, a perfect selection to compliment Carter's heart-touching words. Told from the perspective of a young girl, Danielle, as she's educated about the dual issues of fibro and migraines her mother is facing, both by her mom herself and other loving family members, the book becomes quite difficult to put down either for a child or adult. It also expertly opens up the door to family discussions about these and other health issues, always framing them in a positive and constructive way and avoiding fear-building and other undue negativity.

“Chronic Illness Can't Beat My Superhero Mommy” is available both in paperback and Kindle editions.

Early reviews have given Carter's new books two very enthusiastic thumbs up.

Sarah S., from Indiana, recently said, “Chronic Illness Can't Beat My Superhero Mommy” gave me a way to educate my daughter about my fibromyalgia, that was both caring and compelling. She loved it and so do I. Five stars and fully recommended.”

For more information be sure to visit https://goo.gl/SUiH6r

Contact:
Thang Publishing
332 South Michigan Avenue
Suite 1032-T610
Chicago, IL 60604
http://www.thangpublishing.com/contacts
262-528-6247

 

The above originally appeared here.

 
 
 

Chronic Fatigue Syndrome Is NOT Just In The Mind‚ Say Scientists

International news

Thursday 17 August 2017

 

From South African newspaper the Sunday Times:

 

Woman with headache
Headaches are one of the symptoms
of chronic fatigue syndrome.
(Image: iStock)
 

Chronic fatigue syndrome is NOT just in the mind‚ say scientists

By Tanya Farber
16 August 2017
All material copyright TimesLive. @ 2017 TimesLive. All rights reserved.

A medical breakthrough has put a smile on the tired faces of those with chronic fatigue syndrome‚ often told to simply “get it together‚ exercise and get therapy”.

Sufferers of the condition have much higher levels of a range of cytokines in their blood‚ according to new research.

Cytokines are produced by the immune system‚ and the researchers from Harvard University found that the higher the levels of some inflammatory cytokines‚ the more severe the symptoms.

Simply put‚ this means the link between the disease and inflammation is now set for further investigation.

 

Full article…

 
 
 

A Plea From A Fallen Doctor On Chronic Fatigue Syndrome (ME/CFS)

International news

Wednesday 16 August 2017

 

From Reddit:

 

Stethoscope
 

A plea from a fallen doctor on Chronic Fatigue Syndrome (ME/CFS)

By fallendocR53-82
August 11, 2017

I was educated at Baylor and practiced medicine for 30 years. I had a thriving practice, a rich social life, and excellent physical and mental health. I loved what I did and loved my life. I ran marathons, spoke at conferences, and chaired non-profits.

I am now completely bedridden from post viral CFS.

I am writing this to beg my fellow colleagues to take this disease seriously, understand that it is 100% organic in origin, and that it can happen to anyone.

I used to see CFS patients fairly often in my practice. Some of them were quite debilitated and some semi-functional. I always tried to be sympathetic and did what I could to help, but truth be told there was always a voice in my head questioning if their symptoms were psychosomatic. At times I delayed a diagnosis because the literature told me to wait 6 months. I recommended exercise, antidepressants, and psychotherapy because that had always been the conventional wisdom. And when patients didn't come back, I subconsciously assumed they had gotten better, and that I was justified in my approach. I feel tremendous guilt about this now.

When I got the flu that started this, I thought I would be out of work for 10 days. 10 days turned into 10 weeks, and then 10 months. The virus was gone, my labs were clean, and yet I still felt horribly ill.

My symptoms:

  • I could barely stand up in the shower due to orthostatic intolerance. Later my wife would have to install a shower chair

  • I could not read or write due to cognitive dysfunction

  • I could not walk more than 45 steps without extreme lactic build up in my muscles

  • Any minor extortion would produce an intensifying of symptoms for several days

  • Add on insomnia, sensitivity to noise and light, and uncharacteristic emotional lability and you understand the hell my life became

Every type of conventional medical test came back negative or could not explain symptoms. My own family thought I was crazy (not to mention my friends, cohort, and colleagues).

Of course I tried the standard things I told my patients to do. Antidepressants were hit or miss as they so often are and did not touch the core symptoms. Psychotherapy was helpful for coping. Exercise of any kind was a complete unmitigated disaster that severely and permanently worsened my state.

Finally I did find lab abnormalities. Cytokines. Krebs cycle metabolites. Near zero ADH. As I lay bed-bound I slowly regained the ability to process complex data, and I poured through the research and discovered that yes this is a very real illness with organic abnormalities documented as early as 1932. Why aren't we taught this in medical school?

I tried antivirals, antibiotics, hormone replacement, and yes I'll admit, even some more questionable alternative medicine protocols. Nothing worked.

Finally I went into remission using a combination of monoclonal antibodies (Rituxan, Cosyntex, Enbrel). Remission was glorious. I took my wife to Costa Rica, played with my grandchildren, and learned how to sail. And then I relapsed for no good reason and hell returned. As of yet I have been unable to reproduce the first remission.

I beg other doctors to take this to heart. CFS is a real disease, as bad as end stage AIDS or cancer. It is also treatable, but only through trial and error, and even then nothing is guaranteed.

 

Full article (with many comments)…

 
 
 

Why Are Doctors And Patients Still At War Over ME?

International news

Wednesday 16 August 2017

 

From The Daily Mail:

 

Man at desk
Myalgic encephalomyelitis can leave those affected
bedridden for years. It's linked with as many as
60 symptoms, the most common being a feeling of
constant exhaustion (file pic)
 

Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating condition is one of the most bitterly contested areas in medicine

  • Myalgic encephalomyelitis can leave those affected bedridden for years
  • It's linked with 60 symptoms, most commonly a feeling of constant exhaustion
  • There's been a long-running debate between doctors and patients about cause

By Jerome Burne for The Daily Mail
15 August 2017
© Associated Newspapers Ltd

Myalgic encephalomyelitis (ME) is a debilitating condition that can leave those affected bedridden for years. It's linked with as many as 60 symptoms, the most common being a feeling of constant exhaustion — 'like a dead battery'.

The condition first reached mainstream consciousness in the Eighties following outbreaks in New York and Nevada. By then it was officially known as chronic fatigue syndrome (CFS).

For a time, it seemed everyone knew someone who was affected by it, and it was derisively dubbed 'yuppie flu' because it seemed typically to affect young professionals.

For years there's been a long-running and bitter debate between doctors and patients about its cause and how to treat it.

The lack of a clear physical cause meant many doctors dismissed it as all in the mind. This infuriated patient groups who insisted it was all too real and the result of an infection or immune system failure.

Even now, when it is generally accepted that ME/CFS is a genuine condition, it remains one of the most angrily contested areas of medicine. But the battle lines are no longer drawn just between patients and doctors: the medical community itself is at loggerheads.

 

Full article…

 
 
 

Society Constitution

South Australian news

Wednesday 16 August 2017

 

ME/CFS Society (SA) IncThe Society’s Constitution has been updated:

 

PDF

ME/CFS Australia (SA) Inc Constitution (PDF, 154KB)

 
 
 

Robin: ME/CFS Video Game

International news

Tuesday 15 August 2017

 

From the journal Fatigue: Biomedicine, Health & Behavior:

 

Fatigue: Biomedicine, Health & Behavior
 

Mistaken conclusions about systemic exercise intolerance disease being comparable to research case definitions of CFS: A rebuttal to Chu et al.

By Leonard A. Jason, Madison Sunnquist, Kristen Gleason & Pamela Fox
Pages 1-8 | Received 15 Jun 2017, Accepted 28 Jul 2017, Published online: 07 Aug 2017
Copyright © 2017 Informa UK Limited

ABSTRACT

The recent article by Chu et al. contrasted different case definitions that have been used to describe chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME).

In particular, their study compared the new Institute of Medicine (IOM) criteria for systemic exertion intolerance disease (SEID) with three other ME and CFS case definitions.

We appreciate these investigators attempting to use and operationalize the new IOM criteria; however, we disagree with their main conclusion that the percentage of patients selected by the IOM criteria is comparable to the percentage selected by other research case definitions.

This conclusion could potentially encourage investigators to use the IOM criteria for research purposes. In this commentary, we discuss our observations of the Chu et al. article with respect to their methodology, illustrating how the conclusions of an investigation can be influenced by the manner in which case definitions are operationalized.

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Tuesday 15 August 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

 
 
 

Pop Artist Donates Elvis Portrait To Chester Fibromyalgia Charity

International news

Monday 14 August 2017

 

From UK news outlet the Chester Chronicle:

 

Simon Dixon and his portrait
The Fibromyalgia art exhibition in The Forum, Chester.
 

Pop artist donates Elvis portrait to Chester fibromyalgia charity

By Sallie Ehlen
11 August 2017
© 2017 Trinity Mirror Merseyside

Organisers of a charity art exhibition were delighted to receive a portrait of Elvis by renowned pop artist Simon Dixon.

The exhibition, which was held in The Forum shopping centre in Chester, was organised by David Williams to raise awareness of fibromyalgia.

David, from Upton, set up the charity Rock Off Fibro after his wife Jackie – a fit and healthy long distance runner – was struck down by the incurable condition which has left her needing to use a wheelchair for the rest of her life.

Following a successful music concert back in April, David wanted to continue to raise awareness of the condition and came up with the idea of the art exhibition having received donations of artwork from fellow sufferers and artists.

 

Full article…

 
 
 

Stanford: Scientist Searches For Answer To His Son's Devastating Condition

International news

Monday 14 August 2017

 

From US news outlet East Bay News:

 

Ron Davis and his son Whitney
Ron Davis, director of Stanford’s Chronic Fatigue Syndrome
Research Center
, helps care for his son Whitney, 33.
(Photo courtesy of Ashley Haugen)
 

Stanford: Scientist searches for answer to his son’s devastating condition

By LISA M. KRIEGER | lkrieger@bayareanewsgroup.com | Bay Area News Group
August 12, 2017
© 2017 Digital First Media

As a renowned Stanford scientist, Ron Davis has a deep appreciation for the power of modern medicine.

And yet an explanation for the disease afflicting his own beloved son eludes him.

Son Whitney, 33, suffers from such severe Chronic Fatigue Syndrome that he is bedridden, unable to eat or speak. The handsome man was once a photographer and adventurer. He traveled through the United States, studied Buddhism in India and Nepal, lived in an Ecuadorian rainforest and ran a campaign office for former president Barack Obama. Now he’s returned home to Palo Alto for 24-hour care.

So his father has set out to find the reason behind his mysterious condition — believed to affect 2 million Americans — convinced that science has an answer, and that knowledge will lead to a cure. He is also giving new hope to others.

 

Full article…

 
 
 

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

South Australian news

Monday 14 August 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…

 
 
 

Research Participants Wanted To Develop A Creative Resource About Living With ME/CFS And Fibromyalgia

South Australian news

Sunday 13 August 2017

 

From PhD candidate Gipsy Hosking (via email):

 

University of South Australia
 

Research participants wanted to develop a creative resource about living with ME/CFS and Fibromyalgia

31 May 2017

Researcher: Gipsy Hosking, PhD Candidate, University of South Australia

I’m looking for Adelaide based people, aged 18-30 who are currently living with ME/CFS and/or Fibromyalgia.

If this is you then you are invited to participate in an 8-session group to collectively develop a resource for people living with ME/CFS and Fibromyalgia. This resource will be based on your stories of lived experience and may take a variety of forms such as a booklet, website, short film, photo essay, collection of short fiction etc – it will be up to the group to decide. This is a chance to tell your story, to connect with others and to co-author a much-needed resource both to help others living with these conditions and to educate the general public.

This group is taking place as part of my PhD research project at UniSA on young adult’s lived experiences of ME/CFS and Fibromyalgia. The resource that we create will form the basis of my thesis discussion and analysis.

Please know that I have ME/CFS myself and I am mindful of the debilitating effects of these conditions. I aim to make the group as chronic illness friendly as I can.

For more information please contact me and I will send you a detailed information sheet or if you have facebook you can check out my Facebook page.

If you are interested in taking part or have any questions please contact me at Gipsy.Hosking@myuni.unisa.edu.au or 0408 266 075 or you can message me via the Facebook page www.facebook.com/GHresearch/.

***********************************

DOCX Call for participants plain text.docx (135 KB)

PDF Call for participants flyer.pdf (137 KB)

PDF Participant Info Sheet.pdf (155 KB)

 
 
 

Petition: Stop The Closure Of Welfare Rights Centre SA

South Australian news

Sunday 13 August 2017

 

From Change.org:

 

WRC
 

STOP THE CLOSURE OF WELFARE RIGHTS CENTRE SA

By Stephany Del Canto
1 June 2017

© 2017, Change.org, Inc.
Certified B Corporation

AWARD WINNING SPECIALIST WELFARE RIGHTS CENTRE SA FACING CLOSURE

Welfare Rights Centre SA is a community legal centre which specialises in social security law. The Centre has 30 years of experience and expertise in social security law and Centrelink administration. We provide free legal advice and representation to clients facing Centrelink problems. Our clients are the most vulnerable in our community; including terminally ill clients, systematically abused and significantly mentally ill clients attempting to obtain the Disability Support Payment, young people escaping horrifically violent homes to obtain a payment to afford food and people leaving domestic violence relationships to get payments to start a new life.

...

In the 2015-2016 financial year, we provided legal advice to well over 2,000 clients facing Centrelink issues and saw over 500 clients through the Housing Legal Clinic.

Late on Friday afternoon, 26 May, we received the surprising and shocking news that the Welfare Rights Centre SA was unsuccessful in retaining their funding beyond the 30 June 2017.

This level of expertise does not exist anywhere else in South Australia. All this experience will be lost if the closure goes ahead. The inability to get timely access to secure income support is often at the root of other legal needs, including housing, credit and debt and family violence. We have assisted domestic violence victims, vulnerable minors, people with significant disabilities and those facing homelessness.

 

Full article…

 
 
 

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