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ME/CFS Australia Ltd
Please click here to donate to the society ME/CFS South Australia Inc
 
SAHMRI

Donate to SAHMRI
(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
Venue: Sophia House, 225 Cross Road, Cumberland Park

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

Monday 20 May 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…

 
 
 

Radio Interview: Living With ME/CFS – #MillionsMissingAustralia

Australian news

Monday 20 May 2019

 

From Australian radio station 3CR 855 AM Community Radio:

 

ME/CFS Rally in Narrm/Melbourne
ME/CFS Rally in Narrm/Melbourne
 

Living with ME/CFS: #MillionsMissingAustralia

Monday, 20 May 2019 - 8:30am to 9:00am

3CR is proud to acknowledge the Wurundjeri people of the Kulin nation, traditional owners of the land from which we transmit people powered radio.

Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, commonly and collectively known as ME/CFS is a complex, acquired illness with many symptoms whose presentation and severity vary from person to person.

On this show, you will hear experiences from people living with ME/CFS who attended a #MillionsMissing rally hosted by Emerge Australia.

You will also hear a conversation with Dr Lisa Smith, a qualified Medical Practitioner and Teacher who has has suffered herself from ME/CFS all of her adult life.

 

Full article…

 
 
 

Resting-State Functional Connectivity, Cognition, And Fatigue In Response To Cognitive Exertion: A Novel Study In Adolescents With Chronic Fatigue Syndrome

International news

Monday 20 May 2019

 

From Brain Imaging and Behavior:

 

Brain
 

Resting-state functional connectivity, cognition, and fatigue in response to cognitive exertion: a novel study in adolescents with chronic fatigue syndrome

Authors: Elisha K. Josev;
Charles B. Malpas;
Marc L. Seal;
Adam Scheinberg;
Lionel Lubitz;
Kathy Rowe;
Sarah J. Knight
ORIGINAL RESEARCH
First Online: 17 May 2019
© Springer Science+Business Media, LLC, part of Springer Nature 2019.

Abstract

Emerging evidence suggests that central nervous system dysfunction may underlie the core symptoms of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in adults, such as cognitive disturbance, fatigue and post-exertional malaise.

Research into brain dysfunction in the pediatric CFS/ME context, however, is severely lacking. It is unclear whether the adolescent CFS/ME brain functions differently compared with healthy peers, particularly in situations where significant mental effort is required.

This study used resting-state functional MRI in a novel repeated-measures design to evaluate intrinsic connectivity, cognitive function, and subjective fatigue, before and after a period of cognitive exertion in 48 adolescents (25 CFS/ME, 23 healthy controls).

Results revealed little evidence for a differential effect of cognitive exertion in CFS/ME compared with controls.

Both groups demonstrated a similar rate of reduced intrinsic functional connectivity within the default mode network (DMN), reduced sustained attentional performance, slower processing speed, and increased subjective fatigue as a result of cognitive exertion.

However, CFS/ME adolescents consistently displayed higher subjective fatigue, and controls outperformed the CFS/ME group overall on cognitive measures of processing speed, sustained attention and new learning.

No brain-behavior relationships were observed between DMN connectivity, cognitive function, and fatigue over time.

These findings suggest that effortful cognitive tasks may elicit similar levels of energy expenditure across all individuals in the form of reduced brain functioning and associated fatigue.

However, CFS/ME may confer a lower starting threshold from which to access energy reserves and cognitive resources when cognitive effort is required.

 

Full article…

 
 
 

Fibromyalgia Research – Healthy Volunteers Wanted

South Australian news

Monday 20 May 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 20 May 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 20 May 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 19 May 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…

 
 
 

Scientists Find Insulin Resistance Linked To Fibromyalgia Pain

International news

Sunday 19 May 2019

 

From Pakistan news outlet Samaa:

 

Back pain
 

Scientists find insulin resistance linked to fibromyalgia pain

Samaa Digital
May 17, 2019
Copyright © 2019 SAMAA TV. All Rights Reserved.

Scientists have found that insulin resistance is related to the origin of fibromyalgia.

According to the US Centers for Disease Control and Prevention, fibromyalgia is a condition that causes widespread pain, fatigue, sleep problems and distress. It has even affected celebrities like Lady Gaga, who has reportedly canceled concerts due to pain from fibromyalgia.

A group of people affected by the illness were compared with two groups of healthy people, WebMD reported. Researchers noted that people with fibromyalgia had a higher blood sugar level than the healthy people. Insulin resistance develops when the body starts to have difficulty breaking down sugar.

The researchers treated people with high blood sugar levels in the pre-diabetic range with a medication called metformin. People who took the medicine reported lower pain scores.

 

Full article…

 
 
 

Fibromyalgia In Men

International news

Sunday 19 May 2019

 

From U.S. News:

 

Man
 

Fibromyalgia in Men

Though sometimes overlooked in men, this rheumatic condition can cause pain, fatigue and other symptoms.

By Elaine K. Howley, Contributor
May 17, 2019
Copyright 2019 © U.S. News & World Report L.P.

This article is based on reporting that features expert sources including David Trock, MD; Kevin Hackshaw, MD

GENDER DISPARITIES exist in many diseases, from certain types of cancer and heart disease to mental health and autoimmune disorders. One area of medicine where the gender balance of patients is particularly skewed is rheumatology.

Rheumatology encompasses a wide variety of diseases and conditions that affect the joints and soft tissues, the most common of which is osteoarthritis, and many of them are more common among women than men. The Centers for Disease Control and Prevention reports that "women are more likely to develop OA than men, especially after age 50." The same is true for rheumatoid arthritis, an inflammatory form of arthritis that's caused by the immune system mistakenly attacking the body's own tissues. The CDC reports "new cases of RA are typically two-to-three times higher in women than men."

An even greater disparity is seen in fibromyalgia, a disorder the Mayo Clinic reports is "characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues." The National Fibromyalgia Association reports that between 75 and 90 percent of fibromyalgia cases occur in women. But that means some 10 to 25 percent of people with fibromyalgia are men, and the syndrome might sometimes be overlooked in that population.

 

Full article…

 
 
 

Petition: Fix The Issues With Accessing The Disability Support Pension

Australian news

Sunday 19 May 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…

 
 
 

Donate To SAHMRI

South Australian news

Saturday 18 May 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…

 
 
 

Blood Test May Detect Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

International news

Saturday 18 May 2019

 

From the US National Institutes of Health:

 

Woman
Researchers have been working to develop a test to
diagnose ME/CFS, a complex, debilitating disease
that causes profound exhaustion and poor stamina.
(Photo: fizkes / iStock / Getty Images Plus)
 

Blood test may detect myalgic encephalomyelitis/chronic fatigue syndrome

May 14, 2019

At a Glance

  • Researchers developed a blood test that, in a pilot study, accurately identified people with myalgic encephalomyelitis/chronic fatigue syndrome.
  • If validated in larger studies, the assay could one day help diagnose the disease and enable researchers to test potential treatments.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, debilitating disease. People with ME/CFS experience at least six months of profound exhaustion and extremely poor stamina that doesn’t improve with rest. Other symptoms may include joint and muscle pain, sleep problems, tender lymph nodes, a sore throat, headaches, GI issues, and problems with thinking and cognition.

The cause of this disease is unknown. Sometimes it starts after a person has flu-like symptoms. Studies have suggested that infections, stress, or immune system changes may be involved.

One of the main characteristics of ME/CFS is that symptoms get worse within 12 to 24 hours following physical or mental exertion, which is known as post-exertional malaise. When you exert mental or physical energy, cells need to consume ATP, a small molecule that provides energy for cells to carry out their functions. Some studies have found that the ability to use ATP may be impaired in people with ME/CFS.

There are currently no diagnostic tests for ME/CFS. To test whether they could use ATP consumption to identify individuals with ME/CFS, a team led by Dr. Ron Davis at Stanford University developed a technique called a nanoelectronics assay that can measure the electrical responses of cells in real time. Support for development of the device was initially provided by NIH’s National Human Genome Research Institute (NHGRI). Results were published on April 29, 2019, in the Proceedings of the National Academy of Sciences.

 

Full article…

 
 
 

14 Aspects Of Chronic Illness We're Not 'Lucky' To Experience

International news

Saturday 18 May 2019

 

From The Mighty:

 

14 Aspects
 

14 Aspects of Chronic Illness We're Not 'Lucky' to Experience

By Paige Wyant
May 11, 2019
© 2019 Mighty Proud Media, Inc. All Rights Reserved.

Picture it: You’re tossing and turning on your couch in the middle of the day, unable to get comfortable because of the excruciating pain jolting through your body. The debilitating fatigue makes your limbs feel like they’re made of concrete, and you’re too exhausted to do anything besides breathe. Maybe nausea, vertigo, heart palpitations, incontinence or any number of other symptoms are adding to your pain and discomfort.

Suddenly, you get a text from your friend: “Ugh, going to be stuck late at the office again. You’re so lucky you get to stay home all day!”

“Lucky” probably doesn’t feel like the right word, does it?

Though many of our healthy friends and loved ones typically mean well, off-handed comments like this can still hurt. When someone says a person with chronic illness is “lucky,” it’s likely they haven’t thought through the full reality of the situation.

In the example above, the friend might be stressed from working long hours at her job and dream of having a few days at home to relax — which is completely valid! However, it’s important to consider that for a person with chronic illness, staying home all day to manage symptoms isn’t relaxing, or a vacation. It’s often a necessity and many may wish they were able to work.

Being told you are “lucky” can feel invalidating, as it trivializes the very real challenges people with chronic illness face on a daily basis. To help others better understand this reality, we asked our Mighty community to share an aspect of chronic illness that makes people say, “You’re so lucky!” — and why that couldn’t be further from the truth. Let’s show our chronically ill loved ones the support and understanding they deserve.

Here’s what our community shared with us:

1. Not Having to Pay Taxes

“When people learn that I don’t have to file or pay taxes, they get really jealous. Since my only income is disability (SSDI), which is tax-free, and I have no savings accounts — or anything of financial value that earns interest — I have no reason to file taxes every year. By the way, I had this verified by H&R Block. I would much, much rather be out there working, even part-time, earning money and contributing to society, even if it meant filing taxes every year. I have no problem whatsoever ‘rendering unto Caesar’ what is due to there.” — Sherry W.

 

Full article…

 
 
 

Petition: Remove "Afflicted" Docuseries From Netflix Now

International news

Saturday 18 May 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 17 May 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…

 
 
 

Trial By Error: A Plea To Fiona Godlee On A Familiar Topic

International news

Friday 17 May 2019

 

From Virology Blog:

 

Virology Blog
 

Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

By David Tuller, DrPH
16 May 2019
© 2019 Virology Blog.

On Wednesday [15 May 2019], I sent the following to Dr Fiona Godlee, editorial director of BMJ. The topic, once again, was the ethically and methodologically challenged Lightning Process study, which was published two years ago in Archives of Disease in Childhood, a BMJ journal. My letter was prompted by the recent appearance of a review paper that cited this Archives report and called the Lightning Process “effective.”

**********

Dear Fiona—

As you know, I have been pressing Archives of Disease in Childhood, a BMJ journal, to address problems with a 2017 paper called “Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial.” More than a year ago, I reported on Virology Blog and informed Archives of Disease in Childhood that the investigators, a team from Bristol University, recruited 56% of the participants before trial registration, swapped primary and secondary outcomes based on early results, and then failed to disclose these details in the published paper.

 

Full article…

 
 
 

Fibromyalgia Once Made Walking A Struggle. Now, He's Running Ultras

International news

Friday 17 May 2019

 

From Runner's World:

 

Jimmy Fernandez
Jimmy Fernandez
(Photo: CJ Rivera)
 

Fibromyalgia Once Made Walking a Struggle. Now, He’s Running Ultras

After adding physical activity to his treatment plan, Jimmy Fernandez crushed six marathons and two half Ironmans in one year.

By Emily Shiffer
May 15, 2019
© 2019 Hearst Magazine Media, Inc. All Rights Reserved.

For more than 20 years, Jimmy Fernandez, now 42, dealt with the uncomfortable, and at times incapacitating, symptoms of fibromyalgia: chronic joint and muscle pain, spasms in his neck, arms, and back, fatigue, brain fog, and poor sleep.

“Even with an 8 to 9-hour sleep schedule, I would sometimes wake up feeling like I had not slept at all,” he tells Runner’s World. “At my worst, I would pass out from exhaustion. When getting home from work, I would have just enough energy to eat, and then I would pass out for the night.”

His symptoms led to muscle stiffness and coordination issues, which made simple tasks like walking difficult.

The stiffness in his legs caused falls, two of which resulted in head injuries. So he turned to Hatha yoga for physical relief.

Yoga provided me with the perfect activity to reset not just my body, but my mind, too. In Hatha yoga practice, you hold your pose for several breaths,” he said. “It helped me let go of my fear of injuring myself and become more flexible over the years. It also made me feel normal for the first time in my life with pain that was finally manageable.”

 

Full article…

 
 
 

Chronic Illness Manifesto Survey

International news

Friday 17 May 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 16 May 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…

 
 
 

UCI Researchers Help Invent Blood-Based Assay To Detect Chronic Fatigue Syndrome

International news

Thursday 16 May 2019

 

From the University of California, Irvine's UCI News:

 

Rahim Esfandyarpour
Rahim Esfandyarpour, UCI assistant professor of
electrical engineering & computer science, holds up
a device that he and colleagues developed for detecting
a biomarker for chronic fatigue syndrome,
which has been notoriously difficult to diagnose.
 

UCI researchers help invent blood-based assay to detect chronic fatigue syndrome

May 15, 2019
© 2019 UC Regents.

About 2 million people in the U.S. suffer from a mysterious illness known as myalgic encephalomyelitis, or chronic fatigue syndrome.

One of the challenges healthcare professionals have faced in diagnosing it has been the lack of a clear biomarker, something in a patient’s bloodstream to signal the cause of the problem.

Researchers at UCI and Stanford University have developed a blood-based assay tool that has shown early signs of being an effective test for the condition in humans.

The team’s findings were published recently in Proceedings of the National Academy of Sciences.

The new technology developed by lead author Rahim Esfandyarpour, UCI assistant professor of electrical engineering & computer science, and his collaborators relies on the different responses to stress exhibited by blood cells of ME/CFS sufferers versus blood cells of healthy individuals.

Aggravating the cells in both samples with a dose of salt, the researchers then applied electric current and measured the results.

Among the cells of those feeling the symptoms of fatigue, there was a marked change in the current, an indication that the cells were affected by ME/CFS.

The assay device relies on advancements in nanotechnology, microfabrication, and direct electrical detection of cellular and molecular properties.

Test results are further refined through artificial intelligence and machine learning algorithms.

“We still have further experiments to conduct to understand the contributing mechanisms and whether the responses are specific to ME/CFS,” Esfandyarpour said.

“We envision integrating the nanoelectronic sensing arrays with the data acquisition and AI-based computing units to create a portable and handheld diagnostic and preclinical drug-screening platform that can be used by doctors, physicians and other researchers.”

 

Full article…

 
 
 

How Poetry Helps Me Face An Invisible Illness

International news

Thursday 16 May 2019

 

From Sojourners:

 

Chloe Hoy-Bianchi
Chloe Hoy-Bianchi
 

How Poetry Helps Me Face an Invisible Illness

By Chloe Hoy-Bianchi
May 10, 2019
Unless otherwise noted, all material © Sojourners 2019.

I wrote the poem “I don’t want to be in my body no more” for myself. I needed to come to terms with what my body is experiencing. If I’m being honest, I still haven’t fully accepted it. The years of disbelief from medical professionals have shifted the way I see myself.

“There is nothing wrong with you. You’re fine.” I heard those eight words over and over again from doctors, lab technicians, nurse practitioners; I even had a couple of chiropractors tell me that I was just tense from hunching over my computer or carrying too many books. I have been told that the pain I feel is caused by stress, that the extreme dizziness and migraines are simply vertigo or dehydration. I have been told that my memory issues stem from exhaustion. I have been told that my excruciating, full-body pain during sex is normal because I’m young and inexperienced. I have been told that I may be infertile, and the pain and trauma I carry surrounding that possibility has been swept entirely under the rug. I have been told, I have been told, I have been told.

Rarely have I been heard.

A scientific study confirmed the existence of fibromyalgia as a medical condition in 1981. Nearly four decades later, there is still a gaping hole of knowledge in the medical community. A common mistake in diagnosing patients with invisible illnesses is treating symptoms as individual issues rather than seeing how they fit together. A combination of symptom-specific treatments and misdiagnoses made my journey to a diagnosis of fibromyalgia last over a decade. This is a common story for people with chronic and invisible illnesses. My story began at a very young age.

 

I don't want to be in my body no more: a visual poem


I don't want to be in my body no more: a visual poem from Sojourners on Vimeo.

 

Full article…

 
 
 

Skylight ME/CFS Mental Health & Wellbeing Group

South Australian news

Thursday 16 May 2019

 

From Skylight (via ME/CFS South Australia):

 

Skylight ME/CFS Mental Health & Wellbeing Group...

Tuesday 7 May 2019

Skylight is supporting those with ME/CFS by providing an opportunity to meet together over 6 weeks.

All details are in the flyer below or click on the image to go to the event web page.

For anyone who can't attend, Skylight can still support you. Call them on 8378 4100 to discuss your needs.

 

Skylight ME/CFS Mental Health & Wellbeing Group

 
 
 

Donate To SAHMRI

South Australian news

Wednesday 15 May 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…

 
 
 

CanaryPod: Topple Uncaged Meets… The Millions Missing: All Six Episodes

International news

Wednesday 15 May 2019

 

From The Canary:

 

CanaryPod: #ToppleUncaged meets...
 

CanaryPod: Topple Uncaged meets… the Millions Missing: all six episodes

By Steve Topple
13 May 2019
© The Canary 2019.

THIS PODCAST CONTAINS LANGUAGE AND CONTENT SOME PEOPLE MAY FIND OFFENSIVE. THE VIEWS EXPRESSED IN THIS EPISODE ARE THE OPINIONS OF THE HOST AND GUESTS.

Welcome to a special series of episodes of #ToppleUncaged!

Every week, The Canary will be bringing you a new podcast on the media landscape; hosted by me, Steve Topple. But last week was different. Because it was both Millions Missing and ME Awareness week. So The Canary and I brought you content across seven days.

Millions Missing

Myalgic Encephalomyelitis, commonly referred to as ME, is a chronic systemic neuroimmune disease. It affects an estimated 17 million people at least worldwide and around 250,000 people in the UK. It has been fraught with controversy. For decades – and often still to this day – the medical profession has not properly recognised it. People living with ME have been disbelieved, stigmatised, given incorrect treatment, or told it’s ‘all in their heads’. But campaign group ME Action Network (#MillionsMissing) and charity ME Association (#MEAwarenessWeek) aim to change this.

Six podcasts. One important message.

So to support both groups and raise awareness of ME, I published six podcasts with six different guests. Below, you can find each of the episodes with just the interviews only. Because many people living with ME have both aural sensitivity and cognitive impairment, it’s often important to them to have just talking without any external sources, like music. So here are my stripped back podcasts.

Episode One

Episode one was with campaigner and mother of a child with ME, Tina Rodwell. We discussed how the disease affects children, how government departments deal (or don’t) with them and their families, and the countless barriers and prejudice they face:

 

Full article…

 
 
 

UK Teen Tells How Life Changing Illness Kept Her Bed-Bound For Nine Months

International news

Wednesday 15 May 2019

 

From UK news outlet Staffordshire Live:

 

Maddie Sharpe
Maddie Sharpe has spoken to Staffordshire Live
about her daily struggles.
(Image: Maddie Sharp)
 

Stafford teen tells how life changing illness kept her bed bound for NINE months

The brave 18-year-old is raising awareness about the condition

By Nigel Slater
14 May 2019
© 2019 Local World.

A Stafford teenager who was home-bound for two years and had to miss school due to suffering from a life changing illness is now running her own business after showing remarkable bravery.

Maddie Sharpe, now 18, was unable to get out of bed for nine months when she was diagnosed with an illness called M.E at the age of 13.

Her symptoms were so severe that at the age of 13, she had to rely on her mum to shower her everyday and change her clothes.

The illness, which affects around 250,000 people across the UK, stands for Myalgic Encephalomyelitis and is described as “a devastating multi-illness which causes energy depletion and severe physical and cognitive limitations”.

Fighting the illness was hard as it made Maddie very tired everyday – sometimes when she had done little activity - but she managed to start college in 2016 and did two years part time. Though a struggle this got Maddie back on track.

And now Maddie, with the help of her family, is using her skills and courage to run her own business which involves designing metal artwork.

 

Full article…

 
 
 

Too Tired To Live: A Canadian Woman's Struggle With Chronic Fatigue Syndrome

International news

Wednesday 15 May 2019

 

From Canadian newspaper the Maple Ridge-Pitt Meadows News:

 

Tashia Weeks
Blewett’s Tashia Weeks suffers from
myalgic encephalomyelitis, a disease
that brings about severe fatigue and
several other life-altering symptoms.
(Photo: Tyler Harper)
 

Too tired to live: A B.C. woman’s struggle with chronic fatigue syndrome

Tashia Weeks wants to get the word out about the disease

By Tyler Harper
May 14, 2019
© 2019, Maple Ridge News and Black Press Group Ltd.

A good day for Tashia Weeks is one when she can get a little sun on her face, or perhaps walk around her home without feeling dizzy.

She might be able to hold a conversation with her seven-year-old son, and maybe do a few light chores.

But those days are few and far between.

“If I’m out of bed, I am suffering,” she says.

Weeks, 45, suffers from myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. Little is known about the disease, which causes severe fatigue, sleep dysfunction, headaches, sensitivity to lights and sounds and a slowing of cognitive functions that include concentration lapses and short-term memory loss.

The disease affects over half a million adult Canadians, the majority of whom are women, according to the Public Health Agency of Canada.

But there’s no accurate way of diagnosing ME, its causes remain unknown, and there’s no treatment.

It has also destroyed Weeks’ life.

 

Full article…

 
 
 

South Australian Fibromyalgia Research – Healthy Volunteers Wanted

South Australian news

Wednesday 15 May 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…

 
 
 

Donate To SAHMRI

South Australian news

Tuesday 14 May 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…

 
 
 

Fibromyalgia: Is Insulin Resistance 'The Missing Link?'

International news

Tuesday 14 May 2019

 

From Medical News Today:

 

Woman
Researchers have managed to diminish fibromyalgia-
related pain using a drug for insulin resistance.
 

Fibromyalgia: Is insulin resistance 'the missing link?'

By Maria Cohut
Fact checked by Isabel Godfrey
May 14, 2019
© 2004-2019 All rights reserved.

Researchers have noticed that a drug that doctors commonly use to treat insulin resistance can also address the pain of fibromyalgia, which has provided them with a new clue about this chronic condition.

According to the Centers for Disease Control and Prevention (CDC), fibromyalgia affects 4 million people in the United States alone, which equates to about 2% of the population. However, researchers still have no idea what causes this widespread condition.

Recently though, researchers from The University of Texas Medical Branch in Galveston made an intriguing find.

In collaboration with colleagues from other institutions, the researchers identified a connection between fibromyalgia and insulin resistance. They were also able to treat fibromyalgia-related pain by using a drug that doctors commonly prescribe to help the body regulate blood sugar levels.

 

Full article…

 
 
 

British Home Medical Marijuana Cultivators Must Walk A Legal Tightrope

International news

Tuesday 14 May 2019

 

From Weedmaps:

 

Carly Barton
Featured Image: Carly Barton, of Sussex, is in legal limbo
for cultivating medical cannabis, even though she is the
first adult patient in the United Kingdom to receive a
medical cannabis prescription to manage
her chronic fibromyalgia.
(Photo courtesy of Carly Barton)
 

British Home Medical Marijuana Cultivators Must Walk a Legal Tightrope

By Maureen Meehan
May 13, 2019
Copyright © 2019 Weedmaps.

When Carly Barton became the first adult patient in the United Kingdom to receive a medical cannabis prescription to manage her chronic fibromyalgia pain, she declared that her need for opioid-based painkillers was about to be over.

However, when Barton learned that her prescription would cost her 1,400 pounds, or about US$1,814, per month and would not be covered by England's traditionally generous National Health Service (NHS), she decided she had no other choice but to grow her own, despite warnings from the police that she was “openly breaking the law,” and that they “would not look the other way.”

“The whole country is in the same situation,” Barton said in a phone conversation. “If you can afford a couple of thousand pounds a month, then you're classified as a patient. If not, you're regarded as a criminal. It's beyond ridiculous.”

Cultivation of marijuana in England can carry up to a 14-year prison sentence.

That has not stopped the 32-year-old, who taught sculpture at Brighton University for three years until the pain became too much.

 

Full article…

 
 
 

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

Australian news

Tuesday 14 May 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 14 May 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

 
 
 

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