Society Logo
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.

Donate Now
   
Become a Member
Word (docx) Application Form
(Interactive Word document, 156KB)
Why become a member?

Facebook
 
 
ME/CFS SOUTH AUSTRALIA INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:

PO Box 322,
Modbury,
South Australia 5092

Phone:
1300 128 339

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

ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

Disclaimer

ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.

Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.

Support

Eco Pest Control

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

 

Society Seminars for 2019
Saturday 23 March 2019
1:30pm
Speaker:
Mark Van Ness (via YouTube)
Topic: Pacing
Venue: SACOSS, 47 King William Rd, Unley
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 December2019
2pm
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

Friday 18 October 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 Benefit Concert With Marian Call

International news

Friday 18 October 2019

 

From Solve ME/CFS on YouTube:

 

Marian Call
Marian Call
 

Fibromyalgia Study Seeking Participants To Complete An Online Survey

SolveCFS
October 17, 2019

Singer-songwriter Marian Call performs at the Mystic Theatre in Petaluma, California on October 5, 2019, in support of efforts to combat ME/CFS.

Singer-songwriter Marian Call makes her home in Juneau, Alaska and has released ten albums since 2007. Her latest album, Standing Stones, is available at mariancall.com, as well as on iTunes, Spotify, Amazon, bandcamp.com and wherever digital music is sold.

 

 

Full article…

 
 
 

Jackie Ellis Became The First Female Roll-Up Champion At Chandlers Ford Snooker Club

International news

Friday 18 October 2019

 

From UK newspaper the Swindon Advertiser:

 

Jackie Ellis
Jackie Ellis shows off her prize.
(Picture: Tim Dunkley.)
 

Jackie Ellis became the first female Roll-Up champion at Chandlers Ford Snooker Club following her success last weekend

By Sports Reporter
17th October 2019
©Copyright 2001-2019.

SHE’S the first female Roll-Up champion in the 25-year history of the competition at Chandlers Ford Snooker Club in Hampshire.

Jackie Ellis overcame her inner demons and survived a tense final night to claim top spot.

The 52-year-old, from Clyffe Pypard near Royal Wootton Bassett, led the six-month money list going into the final handicapped tournament, but a 17-strong field meant any of the top four could have taken the £175 first prize.

However, she was unbeaten in six matches to win her round-robin group.

...

Ellis suffers from chronic fatigue syndrome and fibromyalgia, which causes widespread pain and affects balance, coordination, concentration and short-term memory.

Her World Snooker coach Tim Dunkley said: “Overcoming anxiety and the effects of these two debilitating illnesses is a daily challenge for Jackie.

“So to become the first woman to win the Roll-Up was remarkable.

“Her conditions mean she has to work even harder than her peers. But this title is worth all those hours on the practice table and all those sleepless nights.”

 

Full article…

 
 
 

Chronic Illness Manifesto Survey

International news

Friday 18 October 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 17 October 2019

 

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

 

SAHMRI
 

Donate To SAHMRI

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

Can You Help?

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

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

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

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

 

Donate now…

 
 
 

The 9 TV Characters I Love To Watch Because Of Their Chronic Illness Or Disability

International news

Thursday 17 October 2019

 

From The Mighty (via Yahoo! Lifestyles):

 

Bea Arthur as Dorothy Zbornak on The Golden Girls
Bea Arthur as Dorothy Zbornak on The Golden Girls.
 

The 9 TV Characters I Love to Watch Because of Their Chronic Illness or Disability

By Jessica Woods
The Mighty
October 13, 2019
© 2019 Yahoo-HuffPost Lifestyles Network.

Some TV shows came back recently and I couldn’t have been more thrilled to have my friends back. You can judge me all you want to because I have television characters to keep me company. Being sick all the time means that sometimes those fictional universes are a lot more real to you than the world outside your door. You might not be able to get out of bed that day, but that doesn’t stop you from transporting to Westeros or a desert island or downtown Baltimore.

Television has always been a source of comfort for me, and I absolutely love seeing the less than 100% “normal” people represented on the screen. Whether that’s a disability or an illness, it doesn’t matter because I love seeing “real” life reflected in the fictional.

Here is the list of my favorite performances on television concerning people with less than perfect health:

***

7. Chronic Fatigue Syndrome — “The Golden Girls”

I love doctors, I think that most of them are great, wonderful people who are trying everything in their power to help. However, I think anyone who has ever had a chronic illness has definitely encountered the doctor who dismissed everything you’ve told them. Dorothy Zbornak (Bea Arthur) from The Golden Girls went through this in an episode about her chronic fatigue syndrome. Sure, the symptoms, dismissal and diagnosis all happen within one episode when it could take other people years to find an answer, but this is television. And this bit of television really touches on something that a lot of people have to deal with — denial from medical professionals.

 

Full article…

 

 
 
 

UK Woman To Take On Kilimanjaro In Support Of Sister With ME Diagnosis

International news

Thursday 17 October 2019

 

From UK newspaper the Sutton & Croydon Guardian:

 

Sal Bolton
Sal Bolton is set to take on the challenge from this Sunday.
 

Sutton woman to take on Kilimanjaro in support of sister with ME diagnosis

7th October 2019
©Copyright 2001-2019.

An inspirational Sutton woman has been hard at work as she gets ready to climb the highest mountain in Africa this coming weekend.

Sal Bolton will set off on the six-day climb to the peak of Mt Kilimanjaro on Sunday (October 13) as she attempts to raise awareness and funds for people affected by ME, or chronic fatigue syndrome.

The 36-year-old said: “I'm doing the climb in support of something close to home, to raise funds and awareness for my twin sister’s illness ME, or Chronic Fatigue Syndrome, which she has been battling with for over 10 years.

“I feel there is a lack of awareness for this presently incurable illness which affects the nervous and immune system of over 250,000 people in the UK alone, robbing them of energy to live a normal functioning life.

“ME has been widely misunderstood, you have to imagine running the London Marathon with a flu or being bed-bound after a short walk to the corner shop. It can make sufferers feel very anxious, neglected and isolated from society and the medical profession.”

 

Full article…

 
 
 

Fibromyalgia Study Seeking Participants To Complete An Online Survey

International news

Thursday 17 October 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 16 October 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…

 
 
 

Isle Of Man NHS Promises Better Service For ME & CFS Patients

International news

Wednesday 16 October 2019

 

From the BBC:

 

Man
ME and chronic fatigue affect about
350 people on the Isle of Man.
 

Isle of Man NHS promises better service for ME & CFS patients

Isle of Man / Ellan Vannin
Wednesday 16 October, 2019
Copyright © 2019 BBC.

Manx patients with myalgic encephalopathy (ME) or chronic fatigue syndrome (CFS) will soon benefit from a dedicated service for the first time, the island's health minister said.

David Ashford MHK told Tynwald that a pilot scheme would start next month.

The Isle of Man's National Health Service does not currently provide any specialist services, unlike in England where they are widely available.

About 350 people on the island have either ME or CFS.

Symptoms include fatigue, poor memory, sound hypersensitivity and pain.

An ME Support charity spokesman said that while he was "encouraged" by the announcement, it was "concerning a full service hasn't been announced".

He added that he wanted "a service that recognises how difficult the lives are of people who have ME".

 

Full article…

 
 
 

A Helping Hand For Chronic Pain: Fibromyalgia Will Now Be Recognised For Maltese Sickness Benefits

International news

Wednesday 16 October 2019

 

From Maltese news outlet Lovin Malta:

 

Woman
 

A Helping Hand For Chronic Pain: Fibromyalgia Will Now Be Recognised For Maltese Sickness Benefits

By Julian Bonnici
October 14, 2019
Copyright © 2019 Lovin Media Group.

Fibromyalgia, a source of intense pain for many Maltese people, will finally be recognised for sickness benefits, the government has announced for next year’s budget.

Fibromyalgia is a disorder characterised by widespread pain, accompanied by fatigue, sleep, memory and mood issues. While sufferers also experience high sensitivity to pain and may also suffer from migraines and IBS.

To qualify for the benefit, a person would need to undergo stringent tests to prevent abuse. The condition, unfortunately, is something of a mystery as it can’t be detected with scans or blood tests, yet it causes lifelong pain for millions of people.

 

Full article…

 
 
 

Suffering In Silence: Residents Struggle With Mysterious, Overlooked Chronic Illness

International news

Wednesday 16 October 2019

 

From US newspaper the Leader-Telegram (via newswires):

 

Woman
 

Suffering in Silence: Residents struggle with mysterious, overlooked chronic illness

Leader-Telegram (Eau Claire, WI)
October 13, 2019
© 2019 InsuranceNewsNet.com, Inc. All rights reserved.

Oct. 13--MENOMONIE -- Deborah Smith's life revolves around her family. Spending the past 19 years in Menomonie, the outgoing Smith home-schooled her children, encouraged their interests and helped them become involved at their local church.

For the past several years, though, Smith has taken a less active role in her family members' lives due to a draining, mysterious biological disease. Smith suffers from myalgic encephalomyelitis chronic fatigue syndrome, an illness without a known cause or cure.

She has a debilitating form of ME/CFS that makes it nearly impossible to speak and confines Smith to her bed. She cannot stand on her own and has not left home in more than two years.

Smith, a 52-year-old married mother of four, is not alone. According to a 2015 report from the Institute of Medicine -- now called the National Academy of Medicine -- an estimated 836,000 to 2.5 million Americans suffer from ME/CFS.

The World Health Organization and U.S. Centers for Disease Control and Prevention have acknowledged the illness for decades, but patients like Smith have often felt ignored by the medical community.

 

Full article…

 
 
 

Donate To SAHMRI

South Australian news

Tuesday 15 October 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…

 
 
 

UK Woman, 28, Ditches Her Job As A Funeral Director To Earn £100 An Hour As A Mermaid

International news

Tuesday 15 October 2019

 

From UK newspaper the Basingstoke Gazette:

 

Jasmine Seale
Jasmine Seales
(Photos by Paul Dale)
 

Woman, 28, ditches her job as a funeral director to earn £100 an hour as a mermaid

By Tim Birkbeck
30th September, 2019
©Copyright 2001-2019.

A BASINGSTOKE woman who ditched her job as a funeral director to become a full-time mermaid is looking to make a splash when she represents Hampshire in a national competition.

Jasmine Seales, gave up her job arranging funerals to pursue a life underwater and claims she earns up to £100 an hour.

The 28-year-old, who has fibromyalgia, discovered the unique sport when she was at Bestival on the Isle of Wight one year and became completed transfixed on it.

“There was a girl there doing displays and it just looked really interesting,” said the Brighton Hill resident.

“I got speaking to her and I thought why not give it a go. It has been a life changing decision.”

 

Full article…

 
 
 

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

Australian news

Tuesday 15 October 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 15 October 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 14 October 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 14 October 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…

 
 
 

Norwegian 2-Day ME/CFS Exercise Study Adds Crucial Factor To Exercise Intolerance Findings

International news

Sunday 13 October 2019

 

From Health Rising:

 

Exercise test at Workwell
Maximal exercise test
underway at Workwell.
 

Norwegian 2-Day ME/CFS Exercise Study Adds Crucial Factor to Exercise Intolerance Findings

By Cort Johnson
October 11, 2019
Copyright © 2019 Health Rising.

It’s the toughest and perhaps most discerning test of all. The two-day maximal exercise test requires that one exercise to exhaustion (or nearly so) two days in a row. In truth, the test is over quickly: it starts out with mild pedaling on a bicycle which slowly gets harder as the resistance is increased and is over in just 8-12 minutes.

It is, however, a maximal exercise test – you exercise to your limit – and that’s why it’s so valuable. It determines how much energy a person – not a cell or a tissue – but an entire person, can pump out.

The remarkable thing is that virtually everyone, whether they’re healthy or sick with any manner of serious diseases, are able to get on a bike, pedal to exhaustion and then pump out the same amount of energy the next day. Whether we’re sick or healthy, somehow our bodies almost always retain the ability to produce energy when needed.

But not apparently in one disease. Chronic fatigue syndrome (ME/CFS) appears to be the odd man out. Put some people with ME/CFS on a bike, and their ability to generate energy (e.g. exercise) the next day plummets. That’s an important finding in a disease which introduced the term post-exertional malaise (PEM) to the medical lexicon.

If that finding holds up – and it’s held up in a number of small studies – it would suggest that exercise does things to people with ME/CFS that it doesn’t appear to do to people with other serious diseases.

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Monday 14 October 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 13 October 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…

 
 
 

Horrific Disease Ignored, Unreported In Minority Communities

International news

Sunday 13 October 2019

 

From the White House Chronicle:

 

Woman
 

Horrific Disease Ignored, Unreported in Minority Communities

By Llewellyn King
October 5, 2019
Copyright © 2019 White House Chronicle.

It is a disease hidden in plain sight. It is a disease that destroys caregivers as certainly as it breaks the patient. There is no cure. To get it is a life sentence for those who suffer and for those who love them.

The disease is Myalgic Encephalomyelitis, more commonly known as Chronic Fatigue Syndrome, and now generally referred to as ME/CFS.

I’ve been writing and broadcasting about this disease for more than a decade. I’ve seen the most extreme cases where young people are prone, unable to communicate and drip fed. And I’ve seen those who are afflicted to a lesser degree but can’t work or attend school, must measure their activity and are unable to tolerate exercise, have cognitive problems and are in a state of constant exhaustion, often accompanied by severe headaches, joint pain and intolerance to light or sound, or both. One bedridden young man can’t tolerate a hug from his parents.

Having attended many medical and ME/CFS activist meetings and having met many patients, I thought I had seen in patients a cross section of the patient population. Then my wife, the journalist Linda Gasparello, pointed out that we had never met or seen an African-American or Hispanic patient at any of these many meetings.

We asked Linda Tannenbaum, a tireless campaigner for a cure for ME/CFS as chief executive officer of the Los Angeles-based Open Medicine Foundation (OMF), if she had ever heard from African-American or Hispanic patients? She had not.

 

Full article…

 
 
 

Petition: Fix The Issues With Accessing The Disability Support Pension

Australian news

Sunday 13 October 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 12 October 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…

 
 
 

Peel Marina To Chronic Fatigue: Tynwald Questions At A Glance

International news

Saturday 12 October 2019

 

From the Isle of Man's Manx Radio:

 

Manx Radio
 

Peel Marina to Chronic Fatigue: Tynwald questions at a glance

Friday, October 11th, 2019
© 2019 Manx Radio and Aiir.

First sitting of fourth year of parliamentary term

Peel Marina dredging, public transport for TT visitors and Chronic Fatigue Syndrome are all to be discussed in Tynwald next week.

There are 26 questions up for oral answer on Tuesday, with a further 27 for written response.

Of the 26 questions to be voiced in the chamber, seven come from Onchan MHK Julie Edge and five from Ramsey MHK Lawrie Hooper.

Ms Edge's questions vary from asking why the Laxey Wheel isn't working, to probing Manx Utilities on what flood provisions were made in her constituency and if they failed.

Mr Hooper wants to know about the proposed Ramsey Interchange, as well as what progress has been made with the Manx Gas Regulatory Agreement.

Elsewhere on the question paper politicians are to be challenged on the proposed dredging of Peel Marina, the NSC pool area opening and NHS dentistry services.

Speaker Juan Watterson is asking about the provision of services for people with Chronic Fatigue Syndrome.

Manx Radio will be bringing you Tynwald live on 1368 and online from 10:30am on Tuesday, 15 October.

 

Full article…

 
 
 

Mid Sussex ME Charity Urges People To Seek Out An Early Correct Diagnosis

International news

Saturday 12 October 2019

 

From UK newspaper the Mid Sussex Times:

 

Sussex & Kent ME/CFS Society
Sussex & Kent ME/CFS Society
 

Mid Sussex ME charity urges people to seek out an early correct diagnosis

By Carly-May Kavanagh
Monday 7 October 2019
© JPIMedia Publishing Ltd. All rights reserved.

Sussex ME Society is working to highlight the importance of getting an early correct diagnosis.

Myalgic encephalopathy (ME) or Chronic Fatigue Syndrome (CFS) can overlap with other disorders such as a primary sleep disorder or depression.

According to the NHS, the main symptom of ME/CFS is extreme physical and mental tiredness that is not helped by rest or sleep.

Colin Barton, chair of the ME Society, said: "We are fortunate in Sussex to have a very good NHS specialist service in Haywards Heath for adults where GPs can refer those suspected of suffering from ME for diagnostic assistance.

Full article…

 
 
 

Petition: Remove "Afflicted" Docuseries From Netflix Now

International news

Saturday 12 October 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…

 
 
 

More In The News


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