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ME/CFS Australia Ltd
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SAHMRI

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(South Australian Health & Medical Research Institute)

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

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ME/CFS SOUTH AUSTRALIA INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:

PO Box 322,
Modbury,
South Australia 5092

Phone:
1300 128 339

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

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

Disclaimer

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

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

Support

Eco Pest Control

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

 

Society Seminars for 2019
Saturday 23 March 2019
1:30pm
Speaker:
Mark Van Ness (via YouTube)
Topic: Pacing
Venue: SACOSS, 47 King William Rd, Unley
Related videos:
Dr. Mark Van Ness, "Expanding Physical Capability in ME/CFS" Part 1 (of 2)
Dr. Mark Van Ness, "Expanding Physical Capability in ME/CFS" Part 2 (of 2)

Saturday 22 June 2019
1:30pm
Speaker: Dr. Bruce Wauchope
Topic: Where we are at: an update on progress at the clinic
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

Thursday 21 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…

 
 
 

Fibromyalgia Study Seeking Participants To Complete An Online Survey

International news

Thursday 21 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 20 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…

 
 
 

Marijuana Chewing Gum Is Said To Relieve Fibromyalgia Pain

International news

Wednesday 20 November 2019

 

From The Science Times:

 

Chewing gum
(Photo : pixabay)
 

Marijuana Chewing Gum is Said to Relieve Fibromyalgia Pain

By Sieeka Khan
November 18, 2019
© Copyright 2019 The Science Times. All Rights Reserved.

After numerous studies confirming that cannabis oil can help treat inflammation, chronic pain, seizures, and much more, another newly published study discovered that getting cannabis treatment for a year can improve function, pain, cognitive function, and quality of life in patients with chronic pain.

In the case of fibromyalgia, a lot of patients prefer taking medical marijuana to the antidepressants, prescription pain relievers, acetaminophen, and antiseizure medication --- these the usual medical drugs prescribed by patients. In fact, a "marijuana patch" has already been made for these patients. MedChewRx is a marijuana gum specifically made for fibromyalgia patients that contain 5mg of both THC and CBD; they are active compounds in marijuana.

Since smoking has a negative impact on a patient's lung health, and edibles can take a while before it kicks in, chewing gum is a much better, safer, and quicker option. The soft tissues in the mouth absorb the gum's compounds, and it bypasses your liver for fast relief.

 

Full article…

 
 
 

Donate To SAHMRI

South Australian news

Tuesday 19 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…

 
 
 

TOWIE Star Jess Wright Visits Warm And Toasty Club In Colchester

International news

Tuesday 19 November 2019

 

From UK newspaper the Harwich and Manningtree Standard:

 

Jess and Carole Wright
Jess Wright visits Warm and Toasty Club in Colchester.
 

TOWIE star Jess Wright visits Warm and Toasty Club in Colchester

By Tom Dalby
17 November 2019
©Copyright 2001-2019.

TACKLING loneliness and social isolation is a priority in an ageing population.

According to Age UK, 1.2 million older people in England are “chronically lonely”, and 200,000 older people have not had a conversation with friends or family for a month.

There is one club, based in Colchester, which is working to try and put a dent in these unwelcome statistics.

The Warm and Toasty Club runs a weekly Memory Afternoon – when older people are invited to reminisce and take part in activities together.

The project was formed five years ago by Johnno Casson after he was diagnosed with chronic fatigue syndrome and forced to rethink his life.

He said: “I went from being a senior manager and having loads of friends to being unable to move.

“I spent a year housebound and decided to refocus my attention on a project that wasn’t driven by money, but by something that was doing good in our community.”

The club receives funding and support from the National Lottery, which decided to offer its participants a treat to mark World Kindness Day.

TV personality and reality star Jess Wright and her mother Carol hosted a surprise luxury spa day at the club’s Memory Afternoon.

 

Full article…

 
 
 

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

Australian news

Tuesday 19 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 19 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 18 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 18 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…

 
 
 

You Don't Look Sick: 'People Think I'm Too Young To Be Disabled'

International news

Monday 18 November 2019

 

From Metro.co.uk:

 

Colette Morgan
Colette Morgan has CRPS.
(Picture: SWNS for Metro.co.uk)
 

You Don’t Look Sick: ‘People think I’m too young to be disabled’

By Laura Abernethy, Assistant lifestyle editor
Sunday 17 November 2019
© 2019 Metro.co.uk. All rights reserved.

‘But you don’t look sick’ is something that people with chronic illnesses often hear.

Others judge them based on their idea of what disability looks like.

Our series speaks to a different person each week about their experiences of living with a long term condition and how other people treat them.

Colette Morgan, 29, from Nottingham, has coeliac disease, chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and most recently, was diagnosed with complex regional pain syndrome.

Living with chronic illness has also contributed to Colette developing anxiety and depression.

Although she has experienced chronic illness she was diagnosed with CFS/ME as a teenager, her health had improved until surgery on her right ankle in February 2018 triggered CRPS.

CRPS is a rare condition where the body responds abnormally to an injury, causing pain that is persistent, severe and lasting much longer than usual.

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Monday 18 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 17 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…

 
 
 

Tri-Valley Hero: Vidhima Shetty, Sharing Others' Stories

International news

Sunday 17 November 2019

 

From US newspaper the Pleasanton Weekly:

 

Vidhima Shetty
Vidhima Shetty published "An Adolescent's Guide
to ME/CFS" last year and plans to update it as
breakthroughs are made in treating the disease.
(Contributed photo)  

Tri-Valley Hero: Vidhima Shetty, sharing others' stories

Teen author, journalist from San Ramon receives Rising Star award

By Dolores Fox Ciardelli / Pleasanton Weekly
November 15, 2019
© 2019 Pleasanton Weekly. All rights reserved.

Vidhima Shetty, 18, made a name for herself locally with her dogged pursuit to help sufferers of chronic fatigue syndrome.

When she was attending California High School in San Ramon, she became aware of the plight of an afflicted young man in her neighborhood, talked to his family and learned more about the disease. She published an article about it in her school paper, The Californian.

"This disease affects 1.5 million to 2 million people in the United States, but it is not very well-known," Shetty said.

The disease is also known as myalgic encephalomyelitis (ME), which means a neuro inflammation of the brain and the spine.

Shetty said after her story went online, she was surprised by a barrage of emails from people coping with the illness. Compounding the suffering, patients have to deal with people who do not understand it.

"I started getting comments from all over the world, thankful that someone who doesn't have the disease went out of the way to write about it," Shetty said.

In response to the interest, Shetty expanded her research, sought help from medical professionals to review her findings, and last year published a 122-page book, "An Adolescent's Guide to ME/CFS." She donates proceeds to the Open Medicine Foundation, which is doing research to find a cure.

 

Full article…

 
 
 

Petition: Fix The Issues With Accessing The Disability Support Pension

Australian news

Sunday 17 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 lifesstyle that puts them below the poverty line and is causing immense emotional hardship.

 

Full article…

 
 
 

Donate To SAHMRI

South Australian news

Saturday 16 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…

 
 
 

Chronic Fatigue Syndrome: Gradually Figuring Out What's Wrong

International news

Saturday 16 November 2019

 

From Harvard Medical School's Harvard Medical Publishing:

 

Woman
 

Chronic fatigue syndrome: Gradually figuring out what’s wrong

By Anthony Komaroff, MD
Editor in Chief, Harvard Health Letter
November 14, 2019
© 2010 - 2019 Harvard University. All rights reserved.

In 1983, a health professional in her 30s walked into my office and said, “I’ve been healthy all of my life. A year ago, I came down with some kind of virus — sore throat, aching muscles, swollen lymph glands, fever. My fatigue was so bad I was in bed for nearly a week. Many of the symptoms gradually improved, but the terrible fatigue and difficulty thinking have not gotten better. They’re so bad I can’t fulfill my responsibilities at home or at work. This illness is affecting my brain, stealing my energy, and affecting my immune system. It’s keeping me from realizing my dreams.”

There’s a piece of advice attributed to a famous physician, William Osler, that every medical student probably has heard: “Listen to your patient. The patient is telling you the diagnosis.” But I wasn’t sure it applied in this case.

 

Full article…

 
 
 

Petition: #NotEnoughForME

International news

Saturday 16 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 15 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…

 
 
 

Fibromyalgia Patients In Israel To Become Eligible For State Disability Stipend

International news

Friday 15 November 2019

 

From The Times of Israel:

 

Man at window
An illustrative image of pain
(Marjan_Apostolovic; iStock by Getty Images)
 

Fibromyalgia patients to become eligible for state disability stipend

Chronic condition recognized for purpose of state benefits; rocket-battered southern Israel has seen surge in cases over past few years

By TOI Staff
10 November 2019
© Copyright 2019 The Times of Israel.

Fibromyalgia sufferers are now eligible for a disability stipend, the National Insurance Institute announced on Saturday night.

The state will recognize those afflicted with the condition as 50 percent disabled, the NII said, after extensive consultations with patients and healthcare professionals.

The chronic disorder is characterized by widespread musculoskeletal pain, fatigue, sleep, memory and mood issues. Data by the Health Ministry and Asaf, the Israeli fibromyalgia association, suggests that some 4% of Israelis – 240,000 people – are affected by fibromyalgia and its sibling condition, Chronic Fatigue Syndrome, both of which affect more women than men.

 

Full article…

 
 
 

Chronic Illness Manifesto Survey

International news

Friday 15 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…

 
 
 

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