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ME/CFS Australia Ltd
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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 2020
Saturday 2 May 2020
Time: 2pm
Speaker: to be announced
Topic: Chemical & Environmental Sensitivities, where we will watch a YouTube video of Dr Anne Steinemann and then discuss personal experiences with MCS – personal products, the home, environmental & chemical exposure, etc.
Venue: 47 King William Rd, Unley SA 5061 (map)
 
Saturday 25 July 2020
Time: 2pm
Speaker: to be announced
Topic: to be announced
Venue: Unley Community Centre
 
Saturday 28 November 2020
Time: 2pm
Speaker: to be announced
Topic: to be announced
Venue: Unley Community Centre
Details for all seminars coming soon…

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

 

Adam's Green Shoot Cultivation For Treatment Of Fibromyalgia

International news

Thursday 2 April 2020

 

From UK newspaper the Isle of Wight Observer:

 

Adam Mawer
Adam Mawer
 

Adam’s green shoot cultivation for treatment of fibromyalgia

By Jade Honey
31 March 2020
© 2020 Isle of Wight Observer.

West Wight farmer with a difference is aiming to put the Island at the centre of a world leading group working on the understanding and treatment of fibromyalgia and related conditions.

Adam Mawer, 44, is entering his second year of cultivating cannabis plants under licence from the Home Office. Working with The Future Clinic in Cowes who specialise in the treatment of fibromyalgia, researchers at the University of Southampton and Cambridge Laboratories he has been investigating the link between the debilitating long-term condition and the relief that medicinal cannabis products can bring.

The precise cause of fibromyalgia is unknown, but it causes intense pain throughout the body and is believed to be related to abnormal levels of chemicals in the brain and changes in the way the central nervous system carries pain messages around the body.

After almost four years of unexplained pain and visits to various specialists, Adam’s partner Laurie was finally diagnosed with the condition around two years ago. Adam had been searching for an alternative to the multiple strong medications she was prescribed which brought unwelcome side-effects, and this eventually led to the launch of a new career for the Island businessman, whose family have lived here for over 40 years.

 

Full article…

 
 
 

Donate To SAHMRI

South Australian news

Thursday 2 April 2020

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…

 
 
 

Find Solace In The Instagram Communities For Women With Chronic Illnesses

International news

Wednesday 1 April 2020

 

From Refinery29:

 

Don't Tell Us How A Sick Girl Should Look
(Image: Instagram)
 

Find Solace In The Instagram Communities For Women With Chronic Illnesses

By Tilly Armstrong
30 March 2020
© 2020 VICE MEDIA GROUP.

"I was suffering so much, and I just remember thinking, Oh my god, this is it now. This is my life." In 2013, when Mimi Butlin was at university, she got viral meningitis. "That was the trigger," she says, "and I just didn’t get better."

Eventually, Mimi was diagnosed with ME, a chronic condition which causes extreme tiredness and difficulty carrying out everyday activities. We all understand how debilitating pain can be, but it is difficult to comprehend it as a permanent state of being. Yet for some, this is a reality.

In the years since her initial diagnosis, 26-year-old Mimi has continually struggled with her health and has also been diagnosed with three other illnesses: fibromyalgia, connective tissue disorder Ehlers-Danlos syndrome and PoTS syndrome, a nervous system disorder which causes fainting.

In early 2019, as a way to deal with constant cycles of pain and discomfort which can leave her unable to get out of bed for days, Mimi started drawing portraits of celebrities who had spoken openly about living with a chronic condition and posting them on her Instagram account – @cantgooutimsick – alongside captions detailing their experiences.

 

Full article…

 
 
 

Homeless Man Living At Heathrow Airport Still Has Nowhere To Go

International news

Tuesday 31 March 2020

 

From UK news outlet Metro:

 

Paul Atherton
Paul Atherton, who has been sleeping in Heathrow Airport,
said the council have refused to find him somewhere to stay.
(Picture: Paul Atherton)
 

Homeless man living at Heathrow Airport still has nowhere to go

By Elisa Menendez
Friday 27 March 2020
© 2020 Associated Newspapers Limited.

A homeless man with disabilities could be sleeping in his wheelchair on the streets tonight, after allegedly being repeatedly turned away by the council amid the coronavirus lockdown.

Paul Atherton, 52, has been homeless for 10 years and has been sleeping in Heathrow Airport’s Terminal 5 on and off for the last two.

But as the building is cleared of non-essential staff and members of the public in a bid to combat the spread of Covid-19, he is now facing the dilemma of not having a roof over his head tonight.

The government asked local authorities in England to house all rough sleepers and those sleeping in hostels and night shelters by the weekend.

However, Paul, who suffers with Chronic Fatigue Syndrome (CFS), said he has been desperately trying with no success to get help from Westminster Council.

He told Metro.co.uk: ‘It’s looking like I’m sleeping on Trafalgar Square in my wheelchair unless anything happens’.

 

Full article…

 
 
 

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

Australian news

Tuesday 31 March 2020

 

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)

 
 
 

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

South Australian news

Monday 30 March 2020

 

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 30 March 2020

 

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

 
 
 

Isolation Of Ultrasmall (Filterable) Bacteria From Patients Suffering From ME, And Patients And Staff Of A Paediatric Hospital

International news

Sunday 29 March 2020

 

From the Saudi Journal of Biological Sciences:

 

Face mask
 

Isolation of ultrasmall (filterable) bacteria from patients suffering from ME, and patients and staff of a paediatric hospital

By Sulaiman Ali Alharbi
https://doi.org/10.1016/j.sjbs.2020.03.012
Available online 13 March 2020
Under a Creative Commons license.

Abstract

A total of 108 blood samples obtained from 28 male and 80 female patients diagnosed with ME were diluted in sterile, Ringer’s Solution and forced (by suction) through 0.2 µm filters.

Of the 28 male samples, 4 yielded filterable bacteria and of the 80 female samples, 18 gave filterable bacteria; as a result, of the total of 124 samples, 22 yielded FB.

Filterable (0.4 and 0.2, but not 0.1micron filterable) bacteria were also isolated from the nose throat and skin of paediatric patients and from the throat and skin of staff at an emergency paediatric hospital.

The highest percentage of bacterial passage occurred through the largest (0.4 µm) pores.

The results show that ultrasmall bacteria occur in ME patients and in paediatric patients and nurses.

The potential pathogenic role of such filterable bacteria is briefly discussed.

Keywords

Ultrasmall bacteria; Filterable bacteria; Nanobacteria; Myalgic encephalomyelitis (ME); Infectious disease

 

Full article…

 
 
 

Online Wellbeing Survey For Chronically Ill Young People

South Australian news

Sunday 29 March 2020

From UPLIFT (via ME/CFS South Australia on Facebook):

 

Survey
 

Online Wellbeing Survey For Chronically Ill Young People

7 March 2020

If you are a 16-25 year old Australian and living with a diagnosed chronic illness, researchers from Telethon Kids Institute and Curtin University want to hear from you.

Participate in an online survey about wellbeing or take part in a study of an online program that will help you build skills to be kinder to yourself. You will receive a voucher for taking part.

The online intervention and wellbeing surveys for young people with chronic conditions are both open for recruitment. Conditions include, e.g. asthma, allergy, arthritis, burns, cancer, diabetes, myalgic encephalomyelitis/chronic fatigue syndrome, diabetes, pots syndrome, IBC/crohns/ulcerative colitis, multiple sclerosis, cystic fibrosis.

Trial of online wellbeing program: https://upliftproject.com.au/…/online-self-compassion-train…

Online wellbeing survey: https://curtin.au1.qualtrics.com/jfe/form/SV_0kdlJL9dgH7kqDb

www.upliftproject.com.au
#TelethonKids #MEcfsResearch

*******

UPLIFT Online Well-Being Program for Young People with Chronic Illness

In this project we want to find out whether an online program improves wellbeing for teens and young adults with a chronic physical illness. If you complete all of the surveys in this study, you will receive two $20 vouchers (your choice of JBHifi or BigW).

Living with an ongoing illness can be very hard. The UPLIFT program provides strategies that people can use to cope with some of these challenges and develop resilience. By participating in this research, you will help us to understand whether this program is helpful for young people with a chronic illness.

We are inviting you to take part in this study if you are:

Aged 16-25 years
Live in Australia
Currently have a diagnosed chronic physical illness, or are in remission

 

Begin the survey…

 
 
 

Petition: #NotEnoughForME

International news

Sunday 29 March 2020

 

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…

 
 
 

NCNED: 2nd ME/CFS International 2020 – Research Innovation And Discovery Conference

Australian news

Saturday 28 March 2020

From Australia's National Centre for Neuroimmunology and Emerging Diseases (NCNED) on Facebook:

 

2nd ME/CFS International 2020: Research Innovation and Discovery Conference

Friday 27 March 2020

Conference

NCNED is excited to announce the 2nd ME/CFS International 2020: Research Innovation and Discovery Conference (RID) to be held at Sea World Resort Conference Centre, Gold Coast, Queensland, Australia on the 19th and 20th of November 2020.

This year's Conference will provide a forum for sharing the latest scientific research data and translation to clinical evidence in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

The 2020 Program and registration link will be available shortly. We look forward to seeing as many of you there as possible.

 

Full article…

 
 
 

Coronavirus (COVID-19) & ME/CFS

International news

Saturday 28 March 2020

 

Advice from US ME/CFS specialist Nancy Klimas, MD:

 

COVID-19 & ME/CFS

NSU Institute for Neuro-Immune Medicine
13 March 2020

 

Full article…

 
 
 

Self-Isolating UK Woman Slams 'Broken' DWP Universal Credit System

International news

Friday 27 March 2020

 

From UK news outlet BristolLive:

 

Rachael and her husband
Rachael and her husband
 

Self-isolating woman slams 'broken' DWP Universal Credit system

“They’ve hung us out to dry. Universal Credit is a broken system”

By Jasper King Live News Reporter
25 March 2020
© 2020 Local World.

A woman from Bristol says her family were “left out to dry” after receiving no Universal Credit for the past two months.

Rachael Powell, 55, lives in Ashton and is currently self-isolating with her husband and daughter.

She is considered by the NHS to be in one of the vulnerable groups who should self-isolate because she suffers from fibromyalgia and ME.

She said her health complications forced her to medically retire from her job in January and claim Universal Credit.

However, since being on the system, she says she has experienced problems with Universal Credit, which she describes as a "broken system".

 

Full article…

 
 
 

Chronic Illness Manifesto Survey

International news

Friday 27 March 2020

 

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…

 
 
 

Fibromyalgia Study Seeking Participants To Complete An Online Survey

International news

Thursday 26 March 2020

 

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…

 
 
 

More In The News


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