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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: an update on progress at the clinic
Venue: Parkside Baptist Church, 100 Young Street, Parkside

Saturday 7 September 2019
Annual General Meeting
2:00pm
Speaker: Occupational Therapist Andrea Parker
Topic: What happens in vagus: an exploration of vagus nerve stimulation as a potential therapy for ME/CFS and beyond (video)
Venue: Unley Community Centre, 18 Arthur Street, Unley

Saturday 14 December 2019
2:00pm
Speaker: Mike Musker from SAHMRI (SA Health & Medical Research Institute)
Topic: "An analysis of Leptin, Interleukin 6 & Interleukin 1 Beta: A case control study in ME/CFS"
Venue: Unley Community Centre, 18 Arthur Street, Unley
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

Tuesday 12 November 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 12 November 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 12 November 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 11 November 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…

 
 
 

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

South Australian news

Monday 11 November 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…

 
 
 

Participants Needed For Online Survey

South Australian news

Monday 11 November 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

 
 
 

Donate To SAHMRI

South Australian news

Sunday 10 November 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…

 
 
 

Can Melatonin Put Your Chronic Pain To Sleep?

International news

Sunday 10 November 2019

 

From the Pain News Network:

 

Dr Richard Medlicott
 

Can Melatonin Put Your Chronic Pain to Sleep?

By A. Rahman Ford, PNN Columnist
November 7, 2019
Copyright © 2019 Pain News Network.

Melatonin is popularly known as the sleep hormone. Less known is its potential to alleviate chronic pain and inflammation.

Melatonin is a natural hormone produced by the pineal gland in the brain. During the day the pineal gland is inactive, but at night it begins to produce melatonin and helps us sleep.

As a supplement, melatonin is widely promoted for its efficacy as a sleep aid. However, its role in reducing inflammation – a major contributor to chronic pain – may be much more important. Many chronic pain conditions are a result of underlying inflammation.

In a recent Nature article, melatonin was called a “master regulator” of inflammation. Several studies have shown that melatonin can regulate activation of the immune system, reducing chronic and acute inflammation.

Research shows that melatonin supplements can modulate inflammation by acting as powerful antioxidants and free radical scavengers. Uncontrolled free radicals in the body can lead to oxidative stress, which can cause inflammation and culminate in diseases that cause chronic pain.

There is a large body of evidence that melatonin is a potent antioxidant, even more potent than vitamins C and E. It’s been successfully used to treat fibromyalgia and irritable bowel syndrome, diseases associated with high levels of oxidative stress.

Full article…

 
 
 

Petition: Fix The Issues With Accessing The Disability Support Pension

Australian news

Sunday 10 November 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 9 November 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…

 
 
 

Petition: #NotEnoughForME

International news

Saturday 9 November 2019

 

From ME Action:

 

#NotEnoughForME
 

#NotEnoughForME

© 2019 The Myalgic Encephalomyelitis Action Network, All Right Reserved.

Join with #MEAction, and tell the NIH Institute Director, Dr. Walter Koroshetz, that his “plan” for Myalgic Encephalomyelitis (ME) is NOT ENOUGH.

This plan is not funded enough, not outcomes-focused enough and not urgent enough for a disease that has been neglected, stigmatized, and misdirected for over 30 years! We cannot wait several more decades to start the work. The NIH must allocate resources NOW to accelerate research!

#MEAction has sent the following letter to Dr. Koroshetz calling on him to take these five actions now:

  1. Provide set-aside funding for ME to accelerate research

  2. Organize meeting of ME experts to reach consensus on patient selection methods and criteria

  3. Fund the identification and validation of biomarkers

  4. Fund a clinical trials network and treatment trials

  5. Address disease stigma and lack of clinicians impeding research

 

Full petition…

 
 
 

Donate To SAHMRI

South Australian news

Friday 8 November 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…

 
 
 

Altered Microbiome Composition In Individuals With Fibromyalgia

International news

Friday 8 November 2019

 

From the medical journal Pain:

 

Woman back pain
 

Altered microbiome composition in individuals with fibromyalgia

Minerbi, Amira,*; Gonzalez, Emmanuelb,c; Brereton, Nicholas J.B.d; Anjarkouchian, Abrahame; Dewar, Kenc,f; Fitzcharles, Mary-Anna,g; Chevalier, Stéphaniee,h,i; Shir, Yorama

PAIN: November 2019 - Volume 160 - Issue 11 - p 2589-2602
doi: 10.1097/j.pain.0000000000001640
Research Paper

Copyright © 2019
International Association for the Study of Pain.

Abstract

Fibromyalgia (FM) is a prevalent syndrome, characterised by chronic widespread pain, fatigue, and impaired sleep, that is challenging to diagnose and difficult to treat.

The microbiomes of 77 women with FM and that of 79 control participants were compared using 16S rRNA gene amplification and whole-genome sequencing.

When comparing FM patients with unrelated controls using differential abundance analysis, significant differences were revealed in several bacterial taxa.

Variance in the composition of the microbiomes was explained by FM-related variables more than by any other innate or environmental variable and correlated with clinical indices of FM.

In line with observed alteration in butyrate-metabolising species, targeted serum metabolite analysis verified differences in the serum levels of butyrate and propionate in FM patients.

Using machine-learning algorithms, the microbiome composition alone allowed for the classification of patients and controls (receiver operating characteristic area under the curve 87.8%).

To the best of our knowledge, this is the first demonstration of gut microbiome alteration in nonvisceral pain.

This observation paves the way for further studies, elucidating the pathophysiology of FM, developing diagnostic aids and possibly allowing for new treatment modalities to be explored.

 

Full article…

 
 
 

Chronic Illness Manifesto Survey

International news

Friday 8 November 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 7 November 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…

 
 
 

Battling Chronic Fatigue Syndrome Through Music

International news

Thursday 7 November 2019

 

From UK newspaper the Bognor Regis Observer:

 

Alice Ella
Alice Ella
 

Battling chronic fatigue syndrome through music

Singer-songwriter Alice Ella – who grew up in Horsham and now lives in Brighton – describes the joy of escaping in her new single Somewhere Else.

By Phil Hewitt
Tuesday, 5th November 2019
©JPIMedia Publishing Ltd. All rights reserved.

The context for Alice is years of struggling with ME/chronic fatigue syndrome – an ongoing battle.

“Somewhere Else is about the feeling that you get when you are immersed within the intimacy of a relationship, that escapism you get when you are kissing or doing the deed!

“It is about escaping your troubles and your body when you are in that special moment with someone.

“It’s about good escapism.

“Personally I mean escape from my health. I feel trapped in a body which doesn’t do what I want it to, but in those moments you feel free and you escape from yourself.

“I feel really passionate about raising understanding and awareness of ME and CFS.”

 

Full article…

 

 
 
 

Get A Life, Chloe Brown Is An Exploration Of Romance, Chronic Pain, And Living On Your Own Terms

International news

Thursday 7 November 2019

 

From UK website FanSided:

 

Get A Life, Chloe Brown
 

Get a Life, Chloe Brown is an exploration of romance, chronic pain, and living on your own terms

By Sarah Perchikoff
6 November 2019
© 2019 FanSided Inc. All Rights Reserved.

Talia Hibbert’s new novel, Get a Life, Chloe Brown, is sure to be the romance everyone is talking about. It’s delightful, sexy, and utterly refreshing.

Get a Life, Chloe Brown by Talia Hibbert might be the most-awaited romance this year. Not only is it from one of the best romance authors of our time, but it’s also #OwnVoices. The main character, Chloe Brown, is a Black woman with fibromyalgia.

And while fibromyalgia may have stopped Chloe from living her life at one point, after seeing her life flash before her eyes in a near-miss car accident, she decides to take her life into her own hands. She starts a “Get a Life” list to start living her life the way she wants.

 

Full article…

 
 
 

Fibromyalgia Study Seeking Participants To Complete An Online Survey

International news

Thursday 7 November 2019

 

From ProHealth:

 

Woman with tablet
 

Fibromyalgia Study Seeking Participants To Complete An Online Survey

ProHealth.com
October 1, 2019
Copyright © 2019 ProHealth, Inc. All rights reserved.

Editor’s note: Do you feel like some people treat you differently because you have fibromyalgia? And if you take an opioid medication to help ease your pain, do you feel like people are judging you?

Researchers Drs. Andrea Pfalzgraf and Kim Jones are looking into whether people with fibromyalgia feel invalidated or stigmatized, and if so, how that is affecting their lives. If you have fibromyalgia, you can help them by filling out their survey and sharing your experiences.

Have you experienced stigma related to having Fibromyalgia?

National University of Natural Medicine, University of Washington, and Linfield College is conducting research on the topic of invalidation and stigma in adults who have been diagnosed with fibromyalgia. Invalidation refers to “discounting” and a “lack of understanding” which people with fibromyalgia receive from their social environment.

The purpose of this study is to gather information from adults who have been diagnosed with fibromyalgia about the following:

  1. Perceptions of Invalidation
  2. Perceptions of Opioid-Related Stigma

This study involves completing a one-time, online survey which should take about 30 minutes. Please note the survey is completely confidential and no personal identification of your information can be made. Your participation is essential to understand the impact of invalidation and stigma on people with fibromyalgia, particularly in relationship to using opioid pain medications. Your input will provide valuable information which will enhance scientific literature and may ultimately help improve patient care and treatment outcomes.

If you have any questions regarding this survey, please contact the Principal Investigator, Andrea R. Pfalzgraf, MPH, PhD at apfalzgraf@nunm.edu.

Please click on the link below (or copy and paste into a new browser) to complete the fibromyalgia survey and share your experiences.

https://survey.iad1.qualtrics.com/jfe/form/SV_bdwWcD2Pvpscd8x

Thank you in advance for you time and input!

Dr. Andrea R. Pfalzgraf, PhD, MPH
Research Fellow
National University of Natural Medicine & University of Washington

Dr. Kimberly Dupree Jones, PhD, FNP-BC, RN, FAAN
Dean & Professor
Linfield College, School of Nursing

 

Full article…

 
 
 

Donate To SAHMRI

South Australian news

Wednesday 6 November 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…

 
 
 

'Afraid To Ask For A Seat': Push To Help Commuters See Hidden Disabilities

Australian news

Wednesday 6 November 2019

 

From Australian newspaper The Age:

 

Olympia Sarris
Olympia Sarris takes public transport to work but
has an invisible disability: ankylosing spondylitis
and says public transport needs to have
disability signs that are more inclusive.
(CREDIT:JASON SOUTH)
 

'Afraid to ask for a seat': Push to help commuters see hidden disabilities

By Nicole Precel
November 1, 2019
Copyright © 2019.

Catching the tram can be a confronting experience for Olympia Sarris.

Sometimes she takes a heat pack with her to ease the pain in her hip and the resulting nausea but often she is left standing in agony.

The 23-year-old from Coburg has an invisible condition: autoimmune thyroiditis and ankylosing spondylitis, which can result in reduced flexibility in her spine and pain in her joints and back.

"As a young woman who appears fit and healthy on the outside, I am ashamed and afraid to ask for a seat," she said.

The hidden suffering of commuters like Ms Sarris is behind a push by advocacy group #thinkoutsidethechair for new public transport signs that acknowledge invisible disabilities such as rheumatoid arthritis, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome or Meniere's Disease that, while debilitating, are not outwardly obvious.

Ms Sarris thinks the sign that pictures a wheelchair split with a standing man would make it easier for her to travel on public transport.

 

Full article…

 
 
 

Fibromyalgia Linked To Worse Cognitive Function, 'Fibrofog'

International news

Wednesday 6 November 2019

 

From Healio Rheumatology:

 

Woman
 

Fibromyalgia linked to worse cognitive function, 'fibrofog'

Kratz AL, et al. Arthritis Care Res. 2019;doi:10.1002/acr.24089.
November 5, 2019
©2019 Healio All Rights Reserved.

Patients with fibromyalgia demonstrate worse objective and subjective cognitive function — sometimes called “fibrofog” — compared with individuals without the disease, according to data published in Arthritis Care & Research.

“This is the first study to examine both subjective, or perceived, as well as objective, or performance, aspects of cognitive dysfunction in the daily lives of people with fibromyalgia,” Anna L. Kratz, PhD, of the University of Michigan, in Ann Arbor, told Healio Rheumatology. “Prior to this study, cognitive functioning in fibromyalgia has been studied exclusively in the laboratory, using standard neuropsychological testing protocols, administered by a trained examiner in a quiet, controlled testing environment.”

“The protocols are limited by the artificial testing environment, which is very unlike the natural environment that people live their lives and in which ‘fibrofog’ is experienced,” she added. “The other limitation of lab-based testing is that it is unable to capture natural fluctuations in cognitive functioning. This way of measuring cognitive functioning is in stark contrast to how people experience fibrofog — reporting good times, when their thinking is relatively fast and clear, and bad times, when their thinking is foggy and slow.”

To analyze cognitive function, as well as the association between subjective and objective aspects of cognition, among patients with and without fibromyalgia, Kratz and colleagues recruited 100 adults from the University of Michigan. Among the participants, 50 had a diagnosis of fibromyalgia while the remaining 50 were controls who were matched based on age, sex and education.

 

Full article…

 
 
 

I'm A 22-Year-Old With Fibromyalgia | Invisible Illness | Health

International news

Wednesday 6 November 2019

 

From US news outlet Twin State Health & Wellness:

 

Twin States Health & Wellness
 

I'm a 22-Year-Old With Fibromyalgia | Invisible Illness | Health

November 1, 2019
© Copyright 2019 Kankakee Valley Publishing.


Bel Banta, 22, shares her journey of living with fibromyalgia, a condition common for middle-aged women.

 

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