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ME/CFS Australia Ltd
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SAHMRI

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(South Australian Health & Medical Research Institute)

Your generous donation today will transform the lives of over 100,000 Australians living with ME/CFS.

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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
Related videos:
Dr. Mark Van Ness, "Expanding Physical Capability in ME/CFS" Part 1 (of 2)
Dr. Mark Van Ness, "Expanding Physical Capability in ME/CFS" Part 2 (of 2)

Saturday 22 June 2019
1:30pm
Speaker: Dr. Bruce Wauchope
Topic: Where we are at: an update on progress at the clinic & links with Open Medicine Foundation and others nationally
Venue: Parkside Baptist Church, 100 Young Street, Parkside

Saturday 7 September 2019
Annual General Meeting
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 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

 

Donate To SAHMRI

South Australian news

Saturday 20 July 2019

 

From the South Australian Health & Medical Research Institute (SAHMRI):

 

SAHMRI
 

Donate To SAHMRI

Your support can help improve the lives of people suffering with ME/CFS

Can You Help?

Can you imagine living every day where every system in the body is affected so that you become housebound or bedridden?

On Sunday, 12 May the South Australian Health and Medical Research Institute (SAHMRI) joined a global day of action campaign to raise awareness and funding for Dr Michael Musker's research studies in Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).

Your generous donation today will transform the lives of over 100,000 Australians living with this debilitating disease.

"We aim to complete meaningful clinical research projects in collaboration with the ME/CFS community that will enhance the scientific knowledge, developing evidence that can grow over time, and be shared through publication enhancing the international research in this space. It is our vision to promote evidence of biological changes in those who are suffering from ME/CFS at different stages of wellness. Informing diagnostic intelligence and enhancing biological exploration of ME/CFS."
– Dr Mike Musker.

 

Donate now…

 
 
 

Advances In Understanding The Pathophysiology Of Chronic Fatigue Syndrome

International news

Saturday 20 July 2019

 

From the American Medical Association's medical journal JAMA:

 

Dr Anthony L Komaroff
Dr Anthony L Komaroff
 

Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome

By Anthony L. Komaroff, MD1
1Brigham and Women’s Hospital, Harvard Medical School, Boston, Massachusetts
July 5, 2019
JAMA. aPublished online July 5, 2019. doi:10.1001/jama.2019.8312
© 2019 American Medical Association. All Rights Reserved.

When does an illness become a disease? When the underlying biological abnormalities that cause the symptoms and signs of the illness are clarified.

The illness now called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was first described in the mid-1980s. At that time, nothing was known about its underlying biology. Indeed, because many standard laboratory test results were normal, some clinicians explained to patients that “there is nothing wrong.” There was, of course, an alternative explanation: the standard laboratory tests might not have been the right tests to identify the underlying abnormalities.

Over the past 35 years, thousands of studies from laboratories in many countries have documented underlying biological abnormalities involving many organ systems in patients with ME/CFS, compared with healthy controls: in short, there is something wrong. Moreover, most of the abnormalities are not detected by standard laboratory tests. In 2015, the Institute of Medicine of the National Academy of Sciences concluded that ME/CFS “is a serious, chronic, complex systemic disease that often can profoundly affect the lives of patients,” affects up to an estimated 2.5 million people in the United States, and generates direct and indirect expenses of approximately $17 billion to $24 billion annually.1

Over the past several years, the National Institutes of Health (NIH) has expanded its research efforts directed toward this disease. It has initiated an unusually comprehensive multisystem study at the NIH Clinical Center, funded 3 extramural ME/CFS research centers and 1 data coordinating center, awarded supplemental support to 7 existing grants, and held regular telebriefings on the illness (as has the Centers for Disease Control and Prevention).2

A 2-day conference at the NIH in April 2019 highlighted recent progress. New research was presented that both reinforced and expanded on previous reports. Equally important, several plausible models were proposed that could explain many of the abnormalities that have been described.

 

Full article…

 
 
 

Is Fibromyalgia Hereditary?

International news

Saturday 20 July 2019

 

From Harvard Women's Health Watch:

 

Harvard Health Publishing
 

Is fibromyalgia hereditary?

Ask the doctors

By Hope Ricciotti, M.D., and Toni Golen, M.D.
Editors in Chief, Harvard Women's Health Watch
Published: August, 2019
© 2010 - 2019 Harvard University. All rights reserved.

Q. My mother has fibromyalgia, and I think I'm starting to experience similar symptoms. Is fibromyalgia hereditary?

A. Yes. Fibromyalgia, a chronic pain condition that affects some six million or more Americans, can run in families. In fact, one of the most important risk factors for fibromyalgia is a family history of the disorder. Fibromyalgia is sometimes known to affect multiple members of the same family. Your risk rises if you have a first-degree relative — a parent, a brother, sister, or child — with the condition.

A 2004 study in the journal Arthritis & Rheumatology found that first-degree relatives of a person with fibromyalgia were 8.5 times more likely to have fibromyalgia than first-degree relatives of people with rheumatoid arthritis. Experts think that this may be the case because a specific chromosome region appears to be involved in fibromyalgia risk. However, while your genes may put you at higher risk for fibromyalgia, environmental factors may also be at play.

If you suspect you may have fibromyalgia, pay a visit to your doctor. The diagnosis will take into account whether you have widespread body pain, especially in specific areas that are typically affected by fibromyalgia, including the back of the head, elbows, knees, hips, shoulders, back, and upper chest. Your doctor will also want to know whether you are experiencing other common symptoms of fibromyalgia, such as fatigue and problems with sleep and concentration.

— by Hope Ricciotti, M.D., and Toni Golen, M.D.
Editors in Chief, Harvard Women's Health Watch

 

Full article…

 
 
 

Petition: Remove "Afflicted" Docuseries From Netflix Now

International news

Saturday 20 July 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…

 
 
 

Donate To SAHMRI

South Australian news

Friday 19 July 2019

 

From the South Australian Health & Medical Research Institute (SAHMRI):

 

SAHMRI
 

Donate To SAHMRI

Your support can help improve the lives of people suffering with ME/CFS

Can You Help?

Can you imagine living every day where every system in the body is affected so that you become housebound or bedridden?

On Sunday, 12 May the South Australian Health and Medical Research Institute (SAHMRI) joined a global day of action campaign to raise awareness and funding for Dr Michael Musker's research studies in Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).

Your generous donation today will transform the lives of over 100,000 Australians living with this debilitating disease.

"We aim to complete meaningful clinical research projects in collaboration with the ME/CFS community that will enhance the scientific knowledge, developing evidence that can grow over time, and be shared through publication enhancing the international research in this space. It is our vision to promote evidence of biological changes in those who are suffering from ME/CFS at different stages of wellness. Informing diagnostic intelligence and enhancing biological exploration of ME/CFS."
– Dr Mike Musker.

 

Donate now…

 
 
 

Edinburgh Kiltwalk 2019: Bethany Christian Trust Volunteer Living With Fibromyalgia To Raise Funds For Capital's Homeless

International news

Friday 19 July 2019

 

From Scottish newspaper the Edinburgh Evening News:

 

Emma Dolphin and Joe Lee
Emma Dolphin will be joined by Joe Lee and dog Seb
on the 26-mile walk as she aims to raise funds
for the Bethany Christian Trust.
 

Edinburgh Kiltwalk 2019: Bethany Christian Trust volunteer living with fibromyalgia to raise funds for Capital's homeless

By 
Wednesday 17 July 2019
©2019 JPIMedia Ltd. All rights reserved.

A YOUNG woman living with a life-limiting physical condition is set to go the extra mile for the Capital’s homeless population after signing up for a marathon charity challenge.

Emma Dolphin wants to “push herself to the limit” in September as she joins thousands of other kilt-clad competitors for the annual Edinburgh Kiltwalk.

The 26-year-old, who lives with fibromyalgia, will be joined by fiancé Joe Lee and dog Seb on the 26-mile walk as she aims to raise funds for the Bethany Christian Trust.

The condition causes pain all over the body as well as extreme fatigue, muscle stiffness, difficulty sleeping and problems with memory and concentration.

However, despite the “unthinkable” task ahead of her, Emma, 26, hopes to inspire others to overcome their physical barriers.

She said: “This walk is going to be a major challenge for me – I suffer from fibromyalgia which makes extensive physical exercise a challenge.”

 

Full article…

 
 
 

Chronic Illness Manifesto Survey

International news

Friday 19 July 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…

 
 
 

Donate To SAHMRI

South Australian news

Thursday 18 July 2019

 

From the South Australian Health & Medical Research Institute (SAHMRI):

 

SAHMRI
 

Donate To SAHMRI

Your support can help improve the lives of people suffering with ME/CFS

Can You Help?

Can you imagine living every day where every system in the body is affected so that you become housebound or bedridden?

On Sunday, 12 May the South Australian Health and Medical Research Institute (SAHMRI) joined a global day of action campaign to raise awareness and funding for Dr Michael Musker's research studies in Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).

Your generous donation today will transform the lives of over 100,000 Australians living with this debilitating disease.

"We aim to complete meaningful clinical research projects in collaboration with the ME/CFS community that will enhance the scientific knowledge, developing evidence that can grow over time, and be shared through publication enhancing the international research in this space. It is our vision to promote evidence of biological changes in those who are suffering from ME/CFS at different stages of wellness. Informing diagnostic intelligence and enhancing biological exploration of ME/CFS."
– Dr Mike Musker.

 

Donate now…

 
 
 

Celebrities You Didn't Know Are Battling Medical Conditions

International news

Thursday 18 July 2019

 

From Mommyish:

 

Cher
Cher
(Image: Instagram / @cher)
 

Celebrities You Didn’t Know Are Battling Medical Conditions

By Holly Scudero
July 18, 2019
Copyright © 2019 Mommyish.

Those of us obsessed with Hollywood probably think we know everything about our favorite stars, old and new. Even if you’re not particularly interested in celebrity culture, chances are you hear tidbits here and there on the news or over social media, or even just from tabloid headlines while waiting in line at the store. There are plenty of reasons why so many love watching the stars. We love seeing their takes on fashion and food. We love hearing their opinions on culture and the movies they are in or the shows that they watch.

We also love hearing about how they’re like us. On a superficial level, many love to know where celebrities go on vacation and how they choose to parent their kids. But one important way celebrities connect with the average person is when they open up about their own health. Anyone who has struggled with any kind of medical problem finds comfort in connecting with others who have the same issue. And celebrities can shine a spotlight on medical conditions in a way the average person usually cannot. Read on for a list of some celebrities that you may not know have been dealing with their own issues.

...

Cher

When you think of the fabulous pop icon Cher, you probably think of the clothes, the hair, and the music! What many people don’t ever think about is fatigue. Specifically, chronic fatigue syndrome, which is what Cher was officially diagnosed with in 1991. CFS is a disorder that many like to make fun of, not understanding that it’s a real problem that can’t be cured with a few extra naps. It’s a tricky disorder that is hard to diagnose but can be treated with a combination of lifestyle changes and, sometimes, medication. Ultimately, the diagnosis hasn’t slowed the singer down, although she was forced to take a break for several years while figuring out how to manage her symptoms. Cher is still touring, still singing, and still making her fans happy.

 

Full article…

 
 
 

Donate To SAHMRI

South Australian news

Wednesday 17 July 2019

 

From the South Australian Health & Medical Research Institute (SAHMRI):

 

SAHMRI
 

Donate To SAHMRI

Your support can help improve the lives of people suffering with ME/CFS

Can You Help?

Can you imagine living every day where every system in the body is affected so that you become housebound or bedridden?

On Sunday, 12 May the South Australian Health and Medical Research Institute (SAHMRI) joined a global day of action campaign to raise awareness and funding for Dr Michael Musker's research studies in Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).

Your generous donation today will transform the lives of over 100,000 Australians living with this debilitating disease.

"We aim to complete meaningful clinical research projects in collaboration with the ME/CFS community that will enhance the scientific knowledge, developing evidence that can grow over time, and be shared through publication enhancing the international research in this space. It is our vision to promote evidence of biological changes in those who are suffering from ME/CFS at different stages of wellness. Informing diagnostic intelligence and enhancing biological exploration of ME/CFS."
– Dr Mike Musker.

 

Donate now…

 
 
 

Being A Mom With Fibromyalgia Means Teaching My Kids The Importance Of Kindness

International news

Wednesday 17 July 2019

 

From Hello Giggles:

 

Samantha Chavarria and her children
(Photo: Samantha Chavarria, HelloGiggles)
 

Being a mom with fibromyalgia means teaching my kids the importance of kindness

By Samantha Chavarria
July 16, 2019
Copyright © 2019 Meredith Corporation. All Rights Reserved.

Motherhood—and mothers’ voices—should be celebrated every day. But that also means having conversations about the complexities of parenting. In our weekly series, “Millennial Moms,” writers discuss the simultaneously beautiful and daunting responsibilities of motherhood through the lens of their millennial experiences. Here, we’ll be discussing things like burnout from the several side hustles we work to provide for our kids and pay our student loans, dating app struggles as young single moms, rude comments from other parents at daycare, and so much more. Stop by every week for a judgment-free space on the internet where women can share the less rosy aspects of motherhood.

I was more prepared than most when I was diagnosed with fibromyalgia. Sure, I was nervous and scared, but I knew what to expect. My dad had the condition as well—diagnosed in his late 30s when I was a preteen. Because of this, I knew just how harsh the transition from able-bodied to disabled could be.

A haunting moment stands out in my memory; the point when I realized something was seriously wrong with my dad. We were on the second floor of our apartment complex when it happened. My dad suddenly fell down the stairs; toppling down two floors of concrete and finally coming to a stop on the stone landing. My sister and I—the only people with him—immediately went into disaster mode.

We panicked, screamed, and cried—begging for someone to come help our dad. In turn, he tried to hush us; reassuring us that he was fine. Feeling somewhat annoyed and completely betrayed by his body, my dad struggled to stand up. We pulled at his arms and pushed him forward until we were able to get him upright. Getting him back up the stairs was an additional struggle, and he was left beat up by the accident.

That was the first time I realized my dad was sick. Of course, I knew factually that he had a condition, but I didn’t register what that meant. Sure, he would come home struggling to walk sometimes, but he would still envelop me in his wide chest with his strong arms. He was still the person I went to first with a problem or a triumph. My dad was no different than he was before his fibromyalgia diagnosis.

 

Full article…

 
 
 

Epstein-Barr Virus May Be Turning On Pathogenic Genes In ME/CFS

International news

Wednesday 17 July 2019

 

From Simmaron Research:

 

B-cell with EBV budding out of it
 

Epstein-Barr Virus May Be Turning On Pathogenic Genes in ME/CFS

By Cort Johnson
June 29, 2019
Copyright 2019 Simmaron Research.

If there was ever a “prodigal virus” in ME/CFS it would surely be the Epstein-barr virus (EBV). Since the first EBV ME/CFS study 1984 no less than 51 ME/CFS or post-infectious viral studies have featured either Epstein-Barr virus or infectious mononucleosis in their titles. (That leaves out a considerable number of viral and immunological studies which didn’t put EBV in their titles.) While hypotheses of chronic viral reactivation in ME/CFS have lost favor the virus is too complex, too fascinating, and simply too problematic for it not to continue to be studied.

A PubMed search brings up over 500 EBV citations associated with multiple sclerosis and over 30,000 citations associated with the virus. To get an indication of how broad EBV research continues to be – one of the latest EBV studies determined if the stress of space flights results in increased levels of EBV reactivation in astronauts. (It did and they advised astronauts to stay away from immunocompromised individuals upon return home…)

The research community clearly continues to find EBV – one of the few viruses our bodies are unable to kick out – a fascinating and important topic. Check out the first in a series of two blogs on EBV’s possible contributions to ME/CFS.

 

Full article…

 
 
 

Lower Stress Predicts Significant Pain Improvement In Fibromyalgia

International news

Wednesday 17 July 2019

 

From Healio Rheumatology:

 

Healio
 

Lower stress predicts significant pain improvement in fibromyalgia

Bergenheim A, et al. BMC Rheumatol. 2019;doi:10.1186/s41927-019-0072-9.
July 15, 2019
©2019 Healio All Rights Reserved.

Reduced stress levels, and high pain intensity at baseline, predict an increased likelihood of significantly improved pain after 10 to 12 years among patients with fibromyalgia or chronic widespread pain, according to data published in BMC Rheumatology.

“There is limited knowledge of why some patients achieve substantial improvement in pain over time while others do not,” Anna Bergenheim, PhD, of the University of Gothenburg in Sweden, and colleagues wrote. “A Swedish postal survey showed that higher health related quality of life at baseline in persons with chronic pain increased the chances of no longer having chronic pain after 3 years.”

“On the other hand, factors such as being a woman, having lower education, high body mass index (BMI), higher levels of depression and anxiety, worse sleep, being former smoker or having other concomitant disorders have been found to predict an increased risk of still having [chronic widespread pain] after 11years,” they added. “Most follow-up studies have been conducted after 3 to 6 years, and the knowledge of the course of symptoms in [fibromyalgia] and [chronic widespread pain] over a longer period appear to be scarce.”

 

Full article…

 
 
 

Donate To SAHMRI

South Australian news

Tuesday 16 July 2019

 

From the South Australian Health & Medical Research Institute (SAHMRI):

 

SAHMRI
 

Donate To SAHMRI

Your support can help improve the lives of people suffering with ME/CFS

Can You Help?

Can you imagine living every day where every system in the body is affected so that you become housebound or bedridden?

On Sunday, 12 May the South Australian Health and Medical Research Institute (SAHMRI) joined a global day of action campaign to raise awareness and funding for Dr Michael Musker's research studies in Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).

Your generous donation today will transform the lives of over 100,000 Australians living with this debilitating disease.

"We aim to complete meaningful clinical research projects in collaboration with the ME/CFS community that will enhance the scientific knowledge, developing evidence that can grow over time, and be shared through publication enhancing the international research in this space. It is our vision to promote evidence of biological changes in those who are suffering from ME/CFS at different stages of wellness. Informing diagnostic intelligence and enhancing biological exploration of ME/CFS."
– Dr Mike Musker.

 

Donate now…

 
 
 

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

Australian news

Tuesday 16 July 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.com/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 16 July 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

 
 
 

Donate To SAHMRI

South Australian news

Monday 15 July 2019

 

From the South Australian Health & Medical Research Institute (SAHMRI):

 

SAHMRI
 

Donate To SAHMRI

Your support can help improve the lives of people suffering with ME/CFS

Can You Help?

Can you imagine living every day where every system in the body is affected so that you become housebound or bedridden?

On Sunday, 12 May the South Australian Health and Medical Research Institute (SAHMRI) joined a global day of action campaign to raise awareness and funding for Dr Michael Musker's research studies in Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).

Your generous donation today will transform the lives of over 100,000 Australians living with this debilitating disease.

"We aim to complete meaningful clinical research projects in collaboration with the ME/CFS community that will enhance the scientific knowledge, developing evidence that can grow over time, and be shared through publication enhancing the international research in this space. It is our vision to promote evidence of biological changes in those who are suffering from ME/CFS at different stages of wellness. Informing diagnostic intelligence and enhancing biological exploration of ME/CFS."
– Dr Mike Musker.

 

Donate now…

 
 
 

The Trials Of Travelling With A Disability - And How It Can Be Improved

International news

Monday 15 July 2019

 

From UK newspaper The Telegraph:

 

Travels
'It's hard, with nothing obvious to indicate to
those around you that you are struggling.'
(Credit: Getty)
 

The trials of travelling with a disability - and how it can be improved

By Telegraph Travel
14 July 2019
© Telegraph Media Group Limited 2019.

As part of our Safer, Fairer, Better campaign, five travellers tell us about the accessibility challenges they face on the road.

...

Priority seating is a flawed system

Hannah Turner

I’m 31 and have chronic fatigue syndrome (CFS; also known as ME). With a range of debilitating symptoms including widespread pain, muscle weakness, extreme fatigue and cognitive impairment, CFS is best described as feeling like you permanently have mild flu.

But despite the fact that at least 250,000 people in the UK currently suffer with CFS, awareness and understanding remains quite low.

One of the many challenges of living with this condition is that it is an invisible illness, with nothing obvious to indicate to those around you that you are struggling. This can make accessing help challenging and nowhere is this more true then when you are travelling.

Sometimes – on public transport, for example – there is a priority seats scheme, designed to assist the elderly, disabled and pregnant woman in getting a seat. But it is a flawed system and not well enough enforced.

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Monday 15 July 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 15 July 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…

 
 
 

Donate To SAHMRI

South Australian news

Sunday 14 July 2019

 

From the South Australian Health & Medical Research Institute (SAHMRI):

 

SAHMRI
 

Donate To SAHMRI

Your support can help improve the lives of people suffering with ME/CFS

Can You Help?

Can you imagine living every day where every system in the body is affected so that you become housebound or bedridden?

On Sunday, 12 May the South Australian Health and Medical Research Institute (SAHMRI) joined a global day of action campaign to raise awareness and funding for Dr Michael Musker's research studies in Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).

Your generous donation today will transform the lives of over 100,000 Australians living with this debilitating disease.

"We aim to complete meaningful clinical research projects in collaboration with the ME/CFS community that will enhance the scientific knowledge, developing evidence that can grow over time, and be shared through publication enhancing the international research in this space. It is our vision to promote evidence of biological changes in those who are suffering from ME/CFS at different stages of wellness. Informing diagnostic intelligence and enhancing biological exploration of ME/CFS."
– Dr Mike Musker.

 

Donate now…

 
 
 

Chronic Fatigue Syndrome (ME/CFS) Article Rocks Top Medical Journal

International news

Sunday 14 July 2019

 

From Health Rising:

 

Tony Komaroff
It took Tony Komaroff over thirty years to get
another ME/CFS paper published on JAMA.
This new paper, though, is a hit…
 

Chronic Fatigue Syndrome (ME/CFS) Article Rocks Top Medical Journal

By Cort Johnson
July 11, 2019
Copyright 2019 National Pain Report.

It took Tony Komaroff over thirty years to get this done but it may have been worth it. Komaroff, Harvard doctor, researcher and ME/CFS advocate, has been studying, writing about and advocating for ME/CFS research since at least 1987 when he was the senior author on no less than four studies.

Over his long research history, he’s examined pathogens, the immune system, brain scans, hormones, the autonomic nervous system, cognition and others. His huge 1996 “health status” study demonstrated that people with ME/CFS were more functionally inhibited than people with congestive heart failure, type II diabetes mellitus, heart attack, multiple sclerosis, and depression. All in all, Komaroff has co-authored over 80 studies on ME/CFS.

Only three times has he been able to get something published in JAMA. Ironically, his first “ME/CFS” study – on chronic Epstein-Barr virus – way back in 1987 landed in JAMA. Except for a comment he got published in 1997, that was it until this year when he got “Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome” article published.

Komaroff’s been doing overviews of ME/CFS for years. In 2015, he scored a coup when he got “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Real Illness” published in the most widely read general internal medicine journal – the Annals of Internal Medicine.

This is different – this is JAMA, the flagship journal of the American Medical Association – “the professional organizationfor physicians in the United States.” Reportedly “the most widely circulated general medical journal in the world”, JAMA is not a specialty journal; it doesn’t focus on neurology or immunology – it’s a general medical journal aimed primarily at doctors and medical students.

It gets around. JAMA states that its Impact Factor (51.3) is one of the highest in medicine and science, that its website gets almost 25 million visits a year, and that it has more than 750,000 followers on Twitter and Facebook.

Getting this article published in JAMA means more than quite a few doctors and medical students are getting a new view of ME/CFS. It also means the editorial staff of JAMA believes Komaroff’s message – that ME/CFS is a real disease – has merit and that doctors should be exposed to it – a good sign.

 

Full article…

 
 
 

Duke And Stanford Opioid And Fibromyalgia Study Published

International news

Sunday 14 July 2019

 

From National Pain Report:

 

Study Result
 

Duke and Stanford Opioid and Fibromyalgia Study Published

By Ed Coghlan
July 12, 2019
Copyright 2019 National Pain Report.

When I saw this tweet from Stanford University Pain this week, I was intrigued.

Stanford and @Duke Anesthesia researchers find brain data to explain why fibromyalgia patients may feel benefit from opioids even though opioids may not work better to reduce chronic pain.

They referred to this article, which I suggest you read.

While the use of long-term opioid medications might not be beneficial for chronic pain per se (i.e., in terms of not improving physical function and not reducing pain interference for example), it is possible that opioid medications could be benefiting brain reward processing and associated reward behavior in patients with chronic pain.

Because the piece was specifically about fibromyalgia, it prompted me to ask Dr. Ginevra Liptan in Oregon what she thought of the study and its conclusion. Her comment was characteristically direct.

“Although it seems you hear nothing but bad news about opioids these days, a new study reports a beneficial effect of opioids on the fibromyalgia brain! Scans demonstrated that those patients taking chronic opioids had normal neural reward responses compared to abnormal responses in those not taking opioids.”

 

Full article…

 
 
 

Petition: Fix The Issues With Accessing The Disability Support Pension

Australian news

Sunday 14 July 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…

 
 
 

More In The News


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