Society Logo
ME/CFS Australia Ltd
Please click here to donate ME/CFS Australia (SA) Inc
   
Become a Member
Word (docx) Application Form
(Interactive Word document, 156KB)
Why become a member?

Facebook
 
 
ME/CFS SOUTH AUSTRALIA INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:

PO Box 322,
Modbury,
South Australia 5092

Phone:
1300 128 339

Office Hours:
Monday - Friday,
10am - 4pm
(phone)

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

 

Society Seminars for 2019
Saturday 23 March 2019
1:30pm
Speaker:
Mark Van Ness (via YouTube)
Topic: Pacing
Venue: SACOSS, 47 King William Rd, Unley

Saturday 22 June 2019
1:30pm
Speaker: Occupational Therapist Andrea Parker
Topic: From Clinician to Client: An Occupational Therapist's Journey With ME/CFS
Venue: Sophia House, 225 Cross Road, Cumberland Park

Saturday 7 September 2019
Annual General Meeting
1:30pm
Speaker: [to be confirmed]
Topic: [to be confirmed]
Venue: Sophia House, 225 Cross Road, Cumberland Park

Saturday 23 November 2019
1:30pm
Speaker: Mike Musker from SAHMRI (SA Health & Medical Research Institute)
Topic: [to be confirmed]
Venue: Sophia House, 225 Cross Road, Cumberland Park
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 South Australia Inc
PO Box 322,
Modbury North,
South Australia 5092
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

 

10 'Golden Girls' Moments That Had Us Like, Whoa, They Went There

International news

Sunday 24 March 2019

 

From PureWow:

 

Golden Girls
 

10 ‘Golden Girls’ Moments That Had Us Like, Whoa, They Went There

By Dara Katz
March 22, 2019
© 2010-2019 Wow Media Products, Inc doing business as PureWow. All rights reserved.

Some may minimize The Golden Girls as a silly show about four old ladies. But the NBC series was a huge critical and commercial success. Over seven seasons, it racked up 68 Emmy nominations, 11 wins and ranked consistently as one of highest-rated programs during its run. Yeah, don’t estimate the power of four strong women with lots of experience.

The reason for the massive success of The Golden Girls? Looking back on the series in the 27 years since its finale, the show was surprisingly progressive. They took on issues of the time that are still relevant today—gay rights, aging, dying with dignity—in ways that felt real and relatable. Here, ten moments the Girls really went there.

...

WHEN DOROTHY CONFRONTS THE NEUROLOGIST WHO GASLIT HER

It’s a problem many women have experienced—doctors don’t believe them and/or think they’re being “hysterical.” In the two-part episode, “Sick and Tired,” Dorothy has been feeling ill for the last few months, but all of her doctors write it off as anxiety over aging. It’s not, though. Eventually, Dorothy gets a diagnosis of chronic fatigue syndrome, and when she bumps into the neurologist who told her she was crazy, she confronts him saying, “I came to you sick. Sick and scared. And you dismissed me.” Moral of the story? Do not come for Dorothy—she’ll drag you.

 

Full article…

 

 
 
 

Petition: Fix The Issues With Accessing The Disability Support Pension

Australian news

Sunday 24 March 2019

 

From Jake Bailey on Change.org:

 

Centrelink is broken
 

Fix the issues with accessing the Disability Support Pension

Jake Bailey started this petition to Minister for Veterans' Affairs Hon. Dan Tehan MP and 3 others
1 March 2018

The current process for people suffering from chronic illness and disability to access social services is flawed in Australia. With waiting times exceeding 9 months for people to be assessed for the Disability Support Pension (DSP) it is forcing those living with a disability in some cases to live a lifestyle that puts them below the poverty line and is causing immense emotional hardship.

 

Full article…

 
 
 

Long-Term Follow-Up Of Young People With Chronic Fatigue Syndrome Attending A Pediatric Outpatient Service

International news

Saturday 23 March 2019

 

From Frontiers in Pediatrics (via ProHealth):

 

Child
 

Long Term Follow Up Of Young People With Chronic Fatigue Syndrome Attending A Pediatric Outpatient Service

ME/CFS in young people has a mean duration of 5 years

By K. S. Rowe
ProHealth.com
March 21, 2019
Copyright © 2019 ProHealth, Inc. All rights reserved.

Abstract

Aim: To determine the reported duration of illness, the functional and educational long-term outcomes, predictive factors for recovery and seek feedback regarding management in pediatric/adolescent myalgic encepahalomyelitis/chronic fatigue syndrome (ME/CFS).

Methods: A cohort observational study of 784 young people, mean age 14.6 (6-18) years, with ME/CFS diagnosed at a specialist pediatric hospital and receiving regular care, was conducted with follow-up for a mean 8 (range 1-21) years after onset. Baseline symptoms, history, depression and anxiety questionnaires were available from 418. The remaining 366, did not have similar standardized baseline information. Questionnaires requested functional rating, persistent symptoms, duration of illness if “recovered,” social engagement and school/work attendance. Feedback was sought regarding management, support services, useful information, helpful interventions or personnel and use of alternative therapies. Reported recovery and function were compared with baseline information and between the two groups.

Results: Follow-up data were returned from 81.8%. There was no significant difference in functional score (if reported recovery) or illness duration related to provision of baseline data. The mean duration of illness was 5 (range 1-15) years in the 50% who reported recovery. By 5 years 38% and by 10 years 68% reported recovery. At 10 years the mean functional score was 8/10 (range 2-10) with 5% scoring <6. Depression, anxiety or severity of illness at diagnosis was not predictive of non-recovery. Designing and monitoring their own management plan that included educational, social, physical and enjoyable activities, as well as having symptom management and understanding professionals were highly valued. However, remaining engaged in an education system that flexibly accommodated their illness and aspirations was consistently reported as crucial for long term functioning.

Conclusions: ME/CFS in young people has a mean duration of 5 years (1-15) with 68% reporting recovery by 10 years. All improved functionally with 5% remaining very unwell and a further 20% significantly unwell. There were no obvious baseline predictors for recovery. However, depression, anxiety, orthostatic intolerance and to a lesser extent pain at follow up were identified as hampering recovery or function. Supportive professionals, remaining engaged in education and management strategies were identified as helpful.

Source: Rowe KS. Long Term Follow up of Young People With Chronic Fatigue Syndrome Attending a Pediatric Outpatient Service. Front Pediatr. 2019 Feb 21;7:21. doi: 10.3389/fped.2019.00021. eCollection 2019. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6393360/ (Full article)

 

Full article…

 
 
 

Petition: Remove "Afflicted" Docuseries From Netflix Now

International news

Saturday 23 March 2019

 

From ME Action:

 

Stop #Afflicted!
 

To: Netflix Executives: Ted Sarandos, Lisa Nishimura, Brandon Riegg, and Vernā Myers

Remove "Afflicted" Docuseries from Netflix Now

Campaign created by Benjamin HsuBorger

PETITION NOTE: On September 18th, a group of concerned writers, activists, artists, filmmakers, physicians, and scientists came together to write an open letter to Netflix to request that Afflicted be immediately removed from the service. Sign this petition to endorse the letter. All signatures will be sent to Netflix. Please note that the below is an excerpt. You are encouraged to read the full text of the letter at: https://medium.com/@afflicted/open-letter-to-netflix-regarding-the-afflicted-docuseries-d2b5263c9eb6

----------

We request that “Afflicted” docuseries be immediately removed from the service. We further request that a formal apology be released that includes a statement of Netflix’s future plans for the programming of documentaries, television, comedy specials, and feature films about disability and projects that include talent, key crew, and/or consultants with disabilities.

We express our profound disappointment with the recently released Netflix docuseries “Afflicted.” We are deeply concerned about its unethical treatment of its subjects and its many factual errors and omissions. Its inclusion on your platform—which reaches three hundred million viewers worldwide—will reinforce barriers to appropriate medical care or disability benefits, dampen the support of vital research, and add to the stigma and social isolation of an already profoundly marginalized group of people.

 

Full petition…

 
 
 

Microbe Discovery Project Merges With CII Center For Solutions

International news

Friday 22 March 2019

 

From The Microbe Discovery Project (via Facebook):

 

The Microbe Discovery Project
 

Microbe Discovery Project merges with CII Center for Solutions

By The Microbe Discovery Project
Thursday, March 21, 2019
© 2019 The Microbe Discovery Project

The Microbe Discovery Project (MDP) is moving forward as part of Columbia University Center for Infection and Immunity (CII) Center for Solutions for ME/CFS.

Our small MDP team started this project more than a few years ago to increase funding and visibility as well as to advocate for more support for desperately needed excellent quality research into ME/CFS. The MDP team and our collective community raised money directly by crowdfunding to help the Columbia University CII world class research team with their projects into this disease and help raise more awareness of the desperate need for funding. These projects are going strong and we’re looking forward to the possible breakthroughs in ME/CFS diagnosis and treatment that can come from them.

It is a certainty that the MDP initiative and the global community driven efforts in support of it has been crucial to the CII’s success in forming the Center for Solutions for ME/CFS. The funds and visible support accumulated helped to springboard their work and provided more of a foundation to their research - so that they were ultimately able to be competitive and successful in obtaining federal funding.

Thanks to the National Institutes of Health funding that the CII has now received, they were able to finally launch their ambitious Center for Solutions for ME/CFS and will be able to sink their teeth into more work. Our community succeeded! Now it’s time for our MDP team of patient volunteers to pass the metaphorical torch over to CII.

 

Full article…

 
 
 

Chronic Illness Manifesto Survey

International news

Friday 22 March 2019

 

From the UK's Chronic Illness Inclusion Project:

 

Chronic Illness Inclusion Project
 

Chronic Illness manifesto survey

About this survey

This is our first major survey capturing the experiences and views of people living with chronic illness. This is an opportunity to stand up (or lie down) and be counted and have your voice heard. Your responses will inform our chronic illness manifesto for change.

This survey is open to anyone with a long-term health condition or impairment that restricts their day to day life.

The survey takes about 20 minutes to complete. You can complete it in stages, coming back to where you left off. Please take breaks when you need to. We appreciate the effort surveys like this can take, and your answers are incredibly valuable. The more responses we get, the stronger our case for change.

The Chronic Illness Inclusion Project is a research project led by people with chronic illness and supported by the Centre for Welfare Reform. It is part of the DRILL programme of disability research and is funded by Big Lottery Fund. Find out more about DRILL here.

 

Begin the survey here…

 
 
 

The Clinician's Coalition: Another Ray Of Light For ME/CFS

International news

Thursday 21 March 2019

 

From Health Rising:

 

Creative idea
 

The Clinician’s Coalition: Another Ray of Light for ME/CFS

By Cort Johnson
March 13, 2019
© 2019 Health Rising

Filling the Landscape of Unmet Needs

After a successful 2017 Working Group meeting at Stanford involving dozens of top researchers, Ron Davis turned to Lucinda Bateman, and said: now you have to do the same thing with doctors.

She did. With Mary Dimmock’s help, Dr. Bateman produced the first ever ME/CFS Clinicians’ Coalition in 2018 and they are about to do it again – and what better place to do it than at the Bateman Horne Center (BHC) – the doctor and patient education center for ME/CFS.

The BHC likes to talk about filling the “landscape of unmet needs in ME/CFS” – a Grand Canyon-sized hole which involves doctor education. The CDC has estimated that up to 85% of people with chronic fatigue syndrome (ME/CFS) remain undiagnosed. That’s a lot of sick people going to doctor’s offices, getting bad advice and getting worse.

It’s also a huge untapped population of people who could contribute to ME/CFS in myriad ways. When I think of them, I think of Mary Dimmock. A former pharmaceutical executive with a son with a severe case of ME/CFS, she’s authored a book on ME/CFS, co-authored a paper on the disease burden in ME/CFS, and has been a driving force in many ME/CFS initiatives over the past five years – including the Clinicians’ Coalition.

I think of Linda Tanenbaum. Linda had zero experience running a research foundation but she had a daughter with ME/CFS and a burning commitment to help out. Just three years later, her foundation – the Open Medicine Foundation – is helping to fund millions of dollars of ME/CFS research a year.

When I think of the many undiagnosed people out there, I think of the Mary Dimmocks and Linda Tanenbaums out there – the many talented people who could and would put their skills to work if only they had the opportunity. I think of the Maureen Hansons and the Paul Gyres – researchers with family members with ME/CFS – who are now participating in our work.

The first step in their path to making a difference in ME/CFS took place in a doctor’s office and a diagnosis of ME/CFS.

 

Full article…

 
 
 

The Establishment Media Has Launched A Vicious 'War' On Chronically Ill People

International news

Wednesday 20 March 2019

 

From The Canary:

 

Millions Missing
 

The establishment media has launched a vicious ‘war’ on chronically ill people

By
19th March 2019
© The Canary 2019

The media has upped the ante on a vicious and abusive war on chronically ill people. Doctors involved in the controversial PACE trial have lashed out, claiming they can’t continue their work because of ‘abuse’ and ‘trolling’ from online activists. Yet, PACE findings left thousands of people in the UK who live with Myalgic encephalomyelitis, commonly referred to as ME, without access to effective treatment. What the establishment media failed to report, is that the findings of the PACE trial are flawed, at best.

“Damaging and ineffective”

On March 13, Reuters reported that Professor Michael Sharpe – one of the PACE researchers – claimed he was the victim of “toxic” online abuse. It also reported that other medical professionals, including Professor Simon Wessely, and Per Fink, could no longer continue their work or research into ME. The report claimed they’d been “hounded by complaints and protests from CFS [chronic fatigue syndrome]/ME activists”.

Both the Times and the Mail picked up on Sharpe’s accusations. On 18 March, Sharpe continued to make similar allegations on BBC Radio 4‘s Today show. And by March 19, Dr Mark Porter again reiterated these claims in the Times.

 

Full article…

 
 
 

ME Patients And The Researchers That Silence Them

International news

Wednesday 20 March 2019

 

From Medium:

 

Shoes
Shoes left during a Millions Missing protest, representing
the M.E. patients missing from their lives.
 

M.E. Patients and the Researchers that Silence Them

By Laura Elliott
March 19, 2019
© 2019 Medium

A lot of things have been written recently about patients living with Myalgic Encephalomyelitis (M.E.), often erroneously known as Chronic Fatigue Syndrome. Last week, Reuters published a long-form piece focused on psychiatrists working in the field, who claimed online activists were silencing their work.

Reuters quotes Professor Michael Sharpe, one of the authors of the controversial PACE trial, which was this year debated in Parliament, and is responsible for the current NICE guidelines that recommend Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) to patients.

“It’s just too toxic [a field],” he says, and Reuters adds their own context to the conversation, writing: ‘For many scientists, [this is] a new normal: From climate change to vaccines, activism and science are fighting it out online.’

As an M.E. patient and campaigner, the only things I felt reading those words were sadness and frustration. In my former life, before sickness struck, I trained and worked as a journalist, and the lack of research involved in framing severely ill patients as anti-science makes my heart ache; both for my former profession, and for the millions of patients given no right of reply.

 

Full article…

 
 
 

FDA Takes Action Against Marketer Of Unapproved Products Claiming To Treat Addiction, Chronic Pain And Other Serious Conditions

International news

Wednesday 20 March 2019

 

From the U.S. Food & Drug Administration:

 

FDA
 

FDA News Release

FDA takes action against marketer of unapproved products claiming to treat addiction, chronic pain and other serious conditions

By Lyndsay Meyer
March 19, 2019
© 2019 U.S. Food & Drug Administration

The U.S. Food and Drug Administration today posted a warning letter to Nutra Pharma Corp. for illegally marketing unapproved products labeled as homeopathic with claims about their ability to treat addiction and chronic pain, including pain associated with cancer, diabetes, shingles, fibromyalgia and other serious conditions.

“One of our most important obligations is to protect consumers from those who would prey on them with bogus claims and fraudulent products. We’ve dedicated new resources to our enforcement work and I consider these activities the cornerstone of our consumer protection mission and one of our most significant institutional obligations. We’re especially focused on those who would exploit Americans harmed by the opioid crisis with the false promise of products that can treat pain or addiction, but that offer no such benefit,” said FDA Commissioner Scott Gottlieb, M.D. “Today, we posted a warning letter to a company preying on patients who may be seeking alternative treatments for chronic pain, cancers, arthritis and autoimmune and neurological disorders. Health fraud scams like these are inexcusable. These patients deserve proven treatments not false promises that can deter them from seeking otherwise effective care, and that can also contain ingredients or contaminations that can threaten their health. We have great concern for the millions of Americans who live with chronic pain or cancer, and for whom traditional treatment options have been exhausted, as well as those battling opioid addiction. They deserve new advances in care that can address pain without the risk of addiction, not the deception of bogus products that offer no proven benefit. We’ll continue our efforts to protect consumers from such false claims, while also working to advance the development of new treatment options, including non-addictive products for pain management and innovative products for the treatment of opioid use disorder.”

The FDA issued a warning letter to Nutra Pharma for their products: “Nyloxin Oral Spray,” “Nyloxin Topical Gel,” “Nyloxin Topical Roll-On,” “Nyloxin Topical Roll-On ES,” “Nyloxin Professional Size Pump Topical Gel” and “Regular Strength Sample Pack.” These products also may confuse consumers because its name is similar to FDA-approved drugs.

Examples of claims made include:

  • “Nyloxin . . . treats conditions that cause chronic pain.”
  • “[C]obra venom saw its primary use in the treatment of cancer and arthritis. Reportedly the venom was used to treat liver cancer, lung cancer, esophageal cancer, skin cancer, and leukemia.”
  • “Today, cobra venom is being studied for treating various forms of pain, cancers, autoimmune and neurological disorders.”
  • “Researchers in China are examining the possibility that cobra venom can be used to treat drug addiction.”
  • “Treatment of the Cobrotoxin in 90 cases with heroin dependence.”

Health fraud scams like these can pose serious health risks. These products have not been demonstrated to be safe or effective and may keep some patients from seeking appropriate, FDA-approved therapies. Selling these unapproved products with claims that they can treat chronic pain is a violation of the Federal Food, Drug, and Cosmetic Act.

In addition to supporting the development of alternatives to opioid analgesics for chronic pain, reducing the number of Americans who are addicted to opioids and cutting the rate of new addiction is one of the Administration’s highest priorities. This work includes promoting more widespread innovation and access to medication-assisted treatment (MAT) for the more than 2 million of Americans with an opioid use disorder (OUD). The FDA is taking steps to make safe and effective MAT available to those who suffer from OUD and to reduce the stigma that is sometimes associated with use of these therapies. Using products with unsubstantiated claims may prevent those addicted to opioids from seeking approved treatments that have been demonstrated to be safe and effective, delay their path to recovery and put them at greater risk of death. In fact, patients receiving FDA-approved medication-assisted treatment cut their risk of death from all causes in half, according to the Substance Abuse and Mental Health Services Administration.

The FDA has requested responses from Nutra Pharma within 15 working days. The warning letter also states that failure to correct violations may result in legal action without further notice, including, without limitation, seizure and injunction.

In December 2017 the FDA proposed a risk-based enforcement approach that prioritizes enforcement and regulatory actions involving drug products labeled as homeopathic that have the greatest potential to cause risk to patients. Given the concerns about the proliferation of potentially ineffective and harmful products labeled as homeopathic, the FDA previously stated it would consider taking additional enforcement and/or regulatory actions, consistent with its current compliance policies, in the interest of protecting the public. Homeopathic products have not been approved by the FDA for any use and may not meet modern standards for safety, effectiveness and quality.

Health care professionals and consumers are encouraged to report any adverse events related to these products to the FDA’s MedWatch Adverse Event Reporting program. To file a report, use the MedWatch Online Voluntary Reporting Form. The completed form can be submitted online or via fax to 800-FDA-0178.

The FDA, an agency within the U.S. Department of Health and Human Services, protects the public health by assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation’s food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.

###

 

Full article…

 
 
 

Handbook Of Sleep Disorders In Medical Conditions: Chapter 15 - Chronic Fatigue Syndrome And Fibromyalgia

International news

Wednesday 20 March 2019

 

From the Handbook of Sleep Disorders in Medical Conditions (via ScienceDirect):

 

Handbook of Sleep Disorders in Medical Conditions
 

Handbook of Sleep Disorders in Medical Conditions

2019, Pages 325-343

Chapter 15 - Chronic Fatigue Syndrome and Fibromyalgia

By Fumiharu Togo, Akifumi Kishi, Benjamin H. Natelson
https://doi.org/10.1016/B978-0-12-813014-8.00015-9
Published: 14 March 2019
Copyright © 2019 Elsevier Inc. All rights reserved.

Abstract

Patients with chronic fatigue syndrome (CFS) and fibromyalgia (FM) often have sleep-related problems.

In this chapter, we will review studies on sleep in CFS and FM patients in order to better understand their sleep problems, effects of treatment of their sleep problems, and differences between these two conditions.

Polysomnographic studies have shown sleep problems in CFS and FM, that is, increased Stage 1 sleep, reduced slow-wave sleep, more arousals, prolonged sleep onset, reduced sleep efficiency, and microarousals or subcortical arousals during sleep, while dynamic aspects of sleep show different patterns between CFS and FM patients.

Studies on pharmacological and nonpharmacological interventions such as antidepressants, graded exercise, and cognitive behavior therapy have been shown to produce improvements in sleep problems.

However, limited research has been conducted on the effects of nonpharmacological interventions on sleep problems in patients with CFS or FM for revealing the optimal strategy for exercise therapy and cognitive behavior therapy in patients with CFS and/or FM.

 

Full article…

 
 
 

Diagnostic Sensitivity Of 2-Day Cardiopulmonary Exercise Testing In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

International news

Wednesday 20 March 2019

 

From the Journal of Translational Medicine:

 

Exercise bike
 

Diagnostic sensitivity of 2-day cardiopulmonary exercise testing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

By Maximillian J. Nelson, Jonathan D. Buckley, Rebecca L. Thomson, Daniel Clark, Richard Kwiatek, and Kade Davison
Journal of Translational Medicine 201917:80
November 26, 2018
https://doi.org/10.1186/s12967-019-1836-0
Received: 9 January 2019
Accepted: 8 March 2019
Published: 14 March 2019
© The Author(s) 2019

Abstract

Background

There are no known objective biomarkers to assist with the diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). A small number of studies have shown that ME/CFS patients exhibit an earlier onset of ventilatory threshold (VT) on the second of two cardiopulmonary exercise tests (CPET) performed on consecutive days. However, cut-off values which could be used to differentiate between ME/CFS patients have not been established.

Methods

16 ME/CFS patients and 10 healthy controls underwent CPET on a cycle-ergometer on 2-consecutive days. Heart rate (HR), ventilation, ratings of perceived exertion (RPE) and work rate (WR) were assessed on both days.

Results

WR at VT decreased from day 1 to day 2 and by a greater magnitude in ME/CFS patients (p < 0.01 group × time interaction). No interaction effects were found for any other parameters. ROC curve analysis of the percentage change in WR at VT revealed decreases of − 6.3% to − 9.8% provided optimal sensitivity and specificity respectively for distinguishing between patients with ME/CFS and controls.

Conclusion

The decrease in WR at VT of 6.3–9.8% on the 2nd day of consecutive-day CPET may represent an objective biomarker that can be used to assist with the diagnosis of ME/CFS.

 

Full article…

 
 
 

South Australian Fibromyalgia Research – Healthy Volunteers Wanted

South Australian news

Wednesday 20 March 2019

 

From Bridges & Pathways:

 

MRI scan
 

Fibromyalgia Research Healthy Volunteers Wanted

By Cathie Powell
Copyright © 2018 Bridges & Pathways.

Women, who are healthy, but who exercise vigorously at most once per week or not at all, aged 18 to 65 and on no regular medication, wanted as volunteers for innovative Adelaide research investigating MRI markers of brain inflammation in fibromyalgia syndrome. Must not be biologically related to any one with fibromyalgia or chronic fatigue syndrome.

For more information see Participant Information Sheet and for a summary of previous research see the link.

 

Full article…

 
 
 

Groundbreaking Blood Test Detects Fibromyalgia

International news

Tuesday 19 March 2019

 

From Medical News Today:

 

Woman rubbing her neck as she talks to physician
People with fibromyalgia experience pain
in many areas of their body.
 

Groundbreaking blood test detects fibromyalgia

By Ana Sandoiu
Fact checked by Paula Field
March 19, 2019
Healthline Media UK Ltd, Brighton, UK.
© 2004-2019 All rights reserved.

New research finds an accurate way of diagnosing fibromyalgia and differentiating it from other related conditions. Using blood samples and innovative techniques, scientists have detected a "molecular fingerprint" that is unique to the condition.

Chronic pain throughout the body is the main characteristic of fibromyalgia. However, many people with the condition often experience a wider range of symptoms, which often have similarities to other conditions.

The fact that the signs and symptoms of fibromyalgia coincide with those of other disorders makes it challenging for doctors to diagnose, and often people living with fibromyalgia "are still sometimes made to feel like it's all in their head."

But, new research may have found a way to rectify this. Scientists have managed to detect fibromyalgia in blood samples and differentiate it from other similar conditions.

Kevin Hackshaw, a professor in the College of Medicine at the Ohio State University in Columbus and a rheumatologist at the university's Wexner Medical Center, led the new research.

Prof. Hackshaw and his colleagues published their study in the Journal of Biological Chemistry.

 

Full article…

 
 
 

Why Chronic Fatigue Syndrome Is A Feminist Issue

International news

Tuesday 19 March 2019

 

From SheKnows:

 

Why Chronic Fatigue Syndrome Is A Feminist Issue
(Image: Camelia Dobrin/Getty Images.
Design: Ashley Britton/SheKnows.
)
 

Why Chronic Fatigue Syndrome Is a Feminist Issue

By 
November 26, 2018
© Copyright 2018 SheKnows Media, LLC, a subsidiary of Penske Business Media, LLC.

I was in my early 20s when I first began experiencing symptoms of what was eventually diagnosed as lupus. Because my most pronounced symptom, especially at first, was extreme exhaustion, I speculated I might have chronic fatigue syndrome (also known as myalgic encephalomyelitis). When I mentioned this to my doctors, I was swiftly dismissed. They had a laundry list of reasons I wasn’t suffering from a real physical illness: I was a young, stressed-out perfectionist working long hours at a competitive corporate job in New York City. I had been diagnosed with anxiety disorder and PTSD in my teens and continued to cope with both illnesses.

Putting these things together, doctors told me, it was no wonder I was so tired. I was wearing myself out by worrying and working hard, and it was as simple as that. For five years, my symptoms gradually worsened, and I was finally diagnosed with lupus by an autoimmune specialist — but my doctors believe I may have a dual diagnosis of either chronic fatigue syndrome or fibromyalgia. (There is no definitive test for either of the two latter illnesses.) Many people are shocked to learn that I waited five years to get a diagnosis and begin treatment, but my story isn’t uncommon. On average, it takes 4.6 years to be diagnosed an autoimmune illness like lupus. And although the CDC estimates that anywhere between 836,000 and 2.5 million Americans have chronic fatigue syndrome, the organization believes the majority have not been diagnosed at all.

 

Full article…

 
 
 

Good Zing Founder Serena Oppenheim On The Strength Of Sharing Your Story In The Startup World

International news

Tuesday 19 March 2019

 

From Forbes:

 

Serena Oppenheim
Serena Oppenheim
 

Good Zing Founder Serena Oppenheim On The Strength Of Sharing Your Story In The Startup World

By Jess Cording
ForbesWomen
Jess Cording is a dietitian and health coach.
March 18, 2019
©2019 Forbes Media LLC. All Rights Reserved.

For Good Zing founder Serena Oppenheim, her own health struggles with chronic fatigue syndrome and fibromyalgia inspired her to create an online platform where people could find and share reliable information. Sharing one’s personal story, however, is not always an easy decision. Here she opens up about choosing to discuss her own journey in the intimidating startup world and how staving off entrepreneur burnout by taking the long view can support the success of a new company.

Jess Cording: What inspired you to start Good Zing?

Serena Oppenheim: The “lightbulb” moment came from a conversation I had one day with my sisters, my mother and some of her friends. They were discussing the best home remedies on how to deal with everything from sunburn to hangovers, to diaper rash to headaches. I thought there must be a platform with information on all these everyday issues, but when I did my research I realized there wasn’t.

I then reflected on my own healthcare journey, dealing with mental and physical health issues like anxiety to my experience beating chronic fatigue syndrome and living with fibromyalgia. I come at health from the patient standpoint—I know what it’s like to be in pain or exhausted, to feel alone, scared, confused and conflicted by the huge amount of information out there. I wanted to build a social impact platform that could make a real difference to people’s lives.

 

Full article…

 
 
 

We Need To Start Taking Women's Illnesses Seriously

International news

Tuesday 19 March 2019

 

From UK magazine Grazia:

 

Woman symbol
(Image: © Getty)
 

'We Need To Start Taking Women's Illnesses Seriously'

By Harriet Kean
17 March 2019
© 2019 Bauer Consumer Media Ltd.

An Instagram community of women documenting their struggles with chronic pain is flourishing - Selma Blair, Lena Dunham and Kirsty Young are amongst the women speaking up.

When Amelia Butlin started @cantgoout_imsick – an Instagram account detailing the suffering and strength of chronically ill individuals – she did not expect Lena Dunham to take note. So, when the Girls creator re-grammed one of her illustrations last week (a painting of Lena, which praised her openness around her health troubles), Amelia was in total shock.

‘Wow, this made me cry,’ Lena wrote, before urging her three million followers to subscribe to Amelia’s account. Lena, like Amelia, 25, suffers from fibromyalgia – a largely misunderstood long-term condition that causes pain all over the body, extreme fatigue, headaches and problems with mental processing. known as ‘fibro fog’. The post also detailed how Lena suffers from chronic pain as a result of endometriosis, where tissue similar to the lining of the womb starts to grow in places such as the ovaries and fallopian tubes (last year, Lena underwent a hysterectomy in an attempt to relieve her pain).

Endometriosis affects one in 10 women, yet it can take years for sufferers to get an official diagnosis, with many claiming that doctors fail to take them seriously. Indeed, Endometriosis Awareness Month, which started last week, aims to educate and therefore decrease the average diagnosis time – currently seven and a half years.

Awareness of such chronic conditions is increasing due to high-profile individuals discussing their pain. Last year, Kirsty Young’s fibromyalgia forced her to stop presenting Desert Island Discs, while in a 2017 documentary, Lady Gaga opened up about living with the debilitating condition, which has forced her to cancel tour dates. And last month, Selma Blair revealed that doctors failed to recognise her multiple sclerosis, as they believed motherhood was the cause of her extreme ‘fatigue’.

 

Full article…

 
 
 

Study: Impact Of Fatigue In CFS – Call For Research Participants

Australian news

Tuesday 19 March 2019

 

From the University of Tasmania (via email):

 

University of Tasmania
 

Impact of Fatigue in CFS

Call for Research Participants
Aged between 18 and 65 years

We are looking for volunteers with Chronic Fatigue Syndrome (CFS) or healthy individuals without CFS to take part in a study inevstigating fatigue and its impact on everyday functioning.

As a participant, you will be asked to complete an online survey, which will ask you questions about your CFS, your experience with CFS and your everyday functioning. The questionnaire should take between 40 and 70 minutes to complete.

Participation in this study is entirely voluntary.

To volunteer or for further information please click on the link or use your QR scanner to complete the following screening questionnaire:

www.surveymonkey/r/F523WCY

Impact of Fatigue in CFS - Study

Contact: Ms Kate Donnelly (kated@utas.edu.au)
OR Dr Cynthia Honan (cynthia.honana@utas.edu.au)
College of Health & Medicine, University of Tasmania

This study has been approved by the Tasmanian Health and Medical Human Research Ethics Committee.

 

PDF Download flyer (PDF, 174 KB)

 
 
 

Survey: What Should Be Considered In The Design Of A Clinic To Treat Complex Health Conditions?

South Australian news

Tuesday 19 March 2019

 

Please read the letter below from Cathie Powell at Bridges & Pathways and consider completing the online survey. It only takes about 10 minutes and can really help highlight the need for a round the clock, all in one clinic for all those with chronic complex health conditions.

 

Bridges & Pathways
 

What should be considered in the design of a clinic to treat complex health conditions?

By Cathie Powell
Copyright © 2018 Bridges & Pathways.

We have an urgent request for you to respond to this State Health Survey about ‘the need for a one-stop clinic for people with chronic and complex conditions in South Australia’.

This is a unique opportunity for you to have your say on matters that are important to you about the services you require to manage your chronic condition/s.

While this is not the proposed ME/CFS clinic, it would be complementary and your responses will let the State Health Department know what all South Australians with complex chronic conditions need to manage their health.

We are aware that many of you have difficulty completing online surveys due to the severity of your illness, and that you may also require assistance from family members and / or carers to compile the information. With this in mind we are showing the questions below in printed form, so you have time to think about them before you go online to complete the survey.

As you reply, it is important to remember this is a State Clinic. The aim is to address Service gaps and reduce waiting lists that cause unnecessary stress, disability and the need to go to hospital emergency departments.

Some examples for us might be the lack of:
• GPs and GP clinics that provide continuing and appropriate care with both during the day and after hours access.
• Care Managers, Practice Nurses to coordinate the range of services you need.
• Affordable physiotherapy, exercise physiology, dieticians, occupational therapy, psychologists.
• Holistic providers (many of you have advised us, you use these as part of your care)
• Community education programs, Information, phone and other on-line support from peer groups.

For those of you who are house bound and or live in rural areas,
• The need for 24/7 phone support
Telehealth GP appointments both with the doctor and your Case Manager
• Problems you have with physical access, ambulance, wheel chair, lifters for examination tables.
• Multiple Chemical Sensitivity issues

Any other issues related to the cost of your care e.g.
• The cost of medications
• Cost of tests to guide treatments and help with assessments.
• Services to meet Centrelink and National Disability requirements.

When you open the survey online, you will find the following explanation and 6 questions. As this is an opportunity to have your say, we suggest you to think about the questions before you answer. Thank you!

What should be considered in the design of a clinic to treat complex health conditions? Patients who have chronic and complex health conditions often utilise significant health services, not always at their convenience, through hospitals and emergency departments when access to their GP / other services, cannot be gained. SA Health wants to hear from consumers about what they would like to be considered in the design of a One-Stop Clinic for consumers with chronic and complex conditions.

Questions
1. What professions / healthcare workers would you like to see working there (eg: doctors, nurses,
physiotherapist, dietician etc)? (be as specific as you can)
2. What services would you use (eg: physio, wellness and prevention health education, nursing, etc)? (be as specific as you can)
3. What currently makes accessing health services difficult?
4. What would make you go to a ‘one stop clinic’ rather than present to an Emergency Department?
5. What would stop you from going to a ‘one-stop clinic’?
6. Any other comments or suggestions?

Below is the link to the on-line survey about the design of a clinic to treat complex health conditions on behalf of the SA State Health Department. We urgently request you complete it.

https://www.surveymonkey.com/r/CFF2SGZ

Thank you in advance. If you need help please ask your carers to assist you.

Regards Cathie and the SA ME/CFS Fibromyalgia Collaboration Clinic team.
South Australian ME/CFS/FMS Clinical & Research Collaboration
c/- Bridges & Pathways Institute Inc
Office: 08 82704316 or Mobile: 0447 133 682 or AH: 08 8358 6086
Email: bpprojects02@gmail.com

 
 
 

UK Couple Continue To Raise Funds For A Health Centre In Flintshire

International news

Monday 18 March 2019

 

From UK newspaper The Leader:

 

David Williams with his wife Jackie
David Williams with his wife Jackie.
 

Deeside couple continue to raise funds for a health centre in Flintshire

By Aaliyah Rugg
Reporter
26th February, 2019
©Copyright 2001-2019.

A HUSBAND and wife team are continuing their journey to help people suffering from chronic pain.

David Williams, of Connah's Quay, has been raising funds with the hopes of opening a health centre in Flintshire after his wife, Jackie, was diagnosed with fibromyalgia.

Fibromyalgia is a lifelong, incurable condition that causes constant pain throughout the body.

They have organised another Rock Off Fibro, which is in its third year, and is encouraging people to attend and raise more funds for the cause.

Mr Williams said: "We really need everyone's support to help make this event a great night.

"Please come and give these fantastic bands the backing they deserve and help us raise awareness for those suffering from Fibromyalgia, PTSD, and depression."

 

Full article…

 
 
 

Fibromyalgia Research – Healthy Volunteers Wanted

South Australian news

Monday 18 March 2019

 

From Bridges and Pathways:

 

Adelaide University
 
 
Robinson Research Institute

 

Fibromyalgia Research Healthy Volunteers Wanted

Women, who are healthy, but who exercise vigorously at most once per week or not at all, aged 18 to 65 and on no regular medication, wanted as volunteers for innovative Adelaide research investigating MRI markers of brain inflammation in fibromyalgia syndrome. Must not be biologically related to any one with fibromyalgia or chronic fatigue syndrome.

For more information see Participant Information Sheet and for a summary of previous research see the link.

For further information about the fibromyalgia syndrome, please see also the following link.

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Monday 18 March 2019

 

From The CONVERSATIONS Project (via email):

 

The Conversations Project
 

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

The CONVERSATIONS Project
Originally published 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

 
 
 

ME/CFS South Australia Inc Co-Signs International Open Letter

South Australian news

Monday 18 March 2019

 

ME/CFS Australia (SA) Inc
 

ME/CFS South Australia Inc 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 South Australia Inc, also, has serious concerns about methodological design flaws in the PACE trial.

 

Read more…

 
 
 

More In The News


Home | Welcome | In the News | ME/CFS Australia (Victoria) | The Society | Become a member | About ME/CFS | Medical | Links | Multimedia | Contact the Society | Volunteer positions
Copyright © ME/CFS South Australia Inc
www.sacfs.asn.au
Privacy Policy
Email: sacfs@sacfs.asn.au
Site maintained by Peter Scott