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ME/CFS Australia Ltd
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Registered Charity 3104


Mailing address:

PO Box 322,
South Australia 5092

1300 128 339

Office Hours:
Monday - Friday,
10am - 4pm

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.


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.


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
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
Speaker: Dr. Bruce Wauchope
Topic: Where we are at
Venue: Sophia House, 225 Cross Road, Cumberland Park

Saturday 7 September 2019
Annual General Meeting
Speaker: Occupational Therapist Andrea Parker
Topic: From Clinician to Client: An Occupational Therapist's Journey With ME/CFS
Venue: Sophia House, 225 Cross Road, Cumberland Park

Saturday 23 November 2019
Speaker: Mike Musker from SAHMRI (SA Health & Medical Research Institute)
Topic: [to be confirmed]
Venue: Sophia House, 225 Cross Road, Cumberland Park
Details for all seminars…

ME/CFS Diagnostic Criteria and Guidelines

www ME: International Consensus Criteria
(Journal of Internal Medicine, Aug 2011)

For GPs:
ME/CFS Primer for Clinical Practioners - 2014 Edition


ME/CFS Guidelines for GPs
(SA Department of Health)


ME/CFS Guidelines for psychiatrists


ME/CFS: A Clinical Case Definition and Guidelines for Medical Practitioners
– An Overview of the Canadian Consensus Document

  Note: See here for an overview on the Canadian Consensus Criteria for Fibromyalgia (PDF, 1.70 MB)
Australian ME/CFS Societies
ME/CFS Australia Ltd.
ACT ME/CFS Society, Inc
Address: PO Box 717, Mawson ACT 2607
Phone: (02) 6290 1984
Fax: (02) 6290 4475
ME/CFS & FM Association NSW
Facebook: ME/CFS & FM NSW Support Group
Facebook: Chronic Fatigue Syndrome NSW
ME/CFS/FM Support Association Qld Inc
Address: c/o Mission Department, St. Vincent’s Hospital, Toowoomba Qld 4350
Phone: (07) 4632 8173
Facebook Page
ME/CFS South Australia Inc
PO Box 322,
Modbury North,
South Australia 5092
Support line: 1300 128 339
Emerge 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


ME Service On The Isle Of Man To Be Implemented This Year

International news

Thursday 25 April 2019


From Isle of Man radio station Manx Radio:


Manx Radio

ME service to be implemented this year

Wednesday, April 24th, 2019
© 2019 Manx Radio and Aiir.

Health Minister confirms plans are in progress

A dedicated service for those suffering with ME on the Isle of Man will be in place by the end of the current financial year.

That's the promise from Health and Social Care Minister David Ashford, after more than 1,200 people signed a petition calling for more to be done to help those with the condition, also known as chronic fatigue syndrome.

Around 350 Manx residents are known to have the illness, and £170,000 has been set aside in this year's budget to develop a pathway for those needing treatment.

However, Mr Ashford insists it's important to get the service right rather than rushing it in:


Full article…


Disabled Worker Repeatedly Made To Move Desks By Islington Council Despite Contrary Medical Advice, Judge Rules

International news

Thursday 25 April 2019


From UK newspaper the Islington Gazette:


Islington Town Hall
Islington Town Hall.
(Picture: Ken Mears)

Disabled worker repeatedly made to move desks by Islington Council despite contrary medical advice, judge rules

Wednesday, April 24th, 2019
© 2019 Manx Radio and Aiir.

A disabled employee was made to “hotdesk” by Islington Council despite repeated calls from medical consultants to give her a fixed place to work, a judge has ruled.

In January Judge McNeill QC upheld a discrimination complaint against Islington Council – ordering the town hall to pay the worker more than £10,000 in compensation, as reported by the Gazette at the time.

But it wasn't until last week the reasons behind the ruling were published. They reveal the claimant sufferers from asthma and fibromyalgia – a long-term condition causing pain all over the body – and that a doctor, occupational health physician and an ergonomist all advised the council to make accommodation for her owing to her disability.

The tribunal heard how the council employee – who has worked there since 1984 – was made to move desks depending on shifts, at her office in Newington Barrow, Finsbury Park. The tribunal heard how, owing to her fibromyalgia, “the position in which she sits at work has a significant impact on her condition”; and that “her asthma is triggered by sitting in the direct path of air conditioning units”.


Full article…


2019 Volunteers Thank You Event - Registrations Are Open

South Australian news

Wednesday 24 April 2019


From the Government of South Australia:


Volunteers Thank You Event 2019

2019 Volunteers Thank You event - Registrations are open

Volunteers Day and Thank You event

Volunteers Day

The South Australian Government values the significant contribution made by volunteers across the State. In recognition of this enormous effort, it has proclaimed a special day in their honour. Volunteers Day is now celebrated on the Queen's Birthday long weekend every year.

Each year, the Department of Human Services hosts a thank you event for volunteers, coinciding with Volunteers Day, to celebrate and thank our state's volunteers. Through this event, we recognise and celebrate the many and varied ways that South Australia's 900,000 volunteers dedicate their time to help others and give back to our community, from patrolling beaches and helping in emergencies, to delivering food and providing companionship to the elderly and isolated.

2019 Volunteers thank you event - Monday 10 June

A free thank you event for volunteers will be held on Monday 10 June 2019.

Volunteers are welcome to attend, registration is essential.

The event will feature presentation of the State Volunteer Awards, and Adelaide Cabaret Festival highlights, including performances from:

Register by 24 May 2019 click here

If you would like to register more than four people please contact us at or phone 8413 8174.

Tickets are limited and will be issued on a first come, first served basis until all available spaces are filled.

The department thanks the Adelaide Cabaret Festival for its generous support of our State's volunteers.

To promote the volunteers thank you event amongst your networks download the event poster (219KB) and display it in your volunteer community or organisation. If you would like an image for sharing on social media please contact us for Facebook and Twitter graphics at

Further information

Contact us


Full article…


'Life Was Fantastic, And Then Overnight I Got Very Sick'

International news

Wednesday 24 April 2019


From Isle of Man radio station Manx Radio:


Craig Morris
Craig Morris

'Life was fantastic, and then overnight I got very sick'

Tuesday, April 23rd, 2019
© 2019 Manx Radio and Aiir.

ME sufferer says condition needs dedicated Island service

A sufferer of ME, who started a petition for a dedicated service on the Island, says the condition changed his life overnight.

Craig Morris lives in Port St Mary and has been dealing with ME, also known as chronic fatigue syndrome, for nine years.

A petition calling to 'establish a select committee to investigate adequacy of provision for ME sufferers', has collected more than 1,100 signatures.

Mr Morris says the condition turned his life upside down:


Full article…


'KNACKERED' Belle And Sebastian Frontman Stuart Murdoch Reveals Becoming Dad Caused ME Flare-Up

International news

Wednesday 24 April 2019


From Scottish newspaper The Scottish Sun:


Stuart Murdoch
Stuart Murdoch revealed his first son caused an ME flare-up

'KNACKERED' Belle and Sebastian frontman Stuart Murdoch reveals becoming dad caused ME flare-up

The Scot also said he had managed to ignore chronic fatigue syndrome for years while he performed with the band

By Sarah Ward
22 April 2019
©News Group Newspapers Limited in England No. 679215.

BELLE and Sebastian frontman Stuart Murdoch told how becoming a dad caused a flare-up of chronic fatigue syndrome.

The Scot, 50, said he had managed to ignore the illness, also known as ME, for years while he performed with the band.

But he revealed having his first son Denny in 2013 led to his extreme tiredness returning.

Stuart — also dad to Nico, two — recalled how he first developed the disease aged 21 while studying at Glasgow Uni.

He said: “It was quite gradual, almost over the course of a summer.

"I did athletics and realised that I was knackered.

“I’d had so much energy but I felt my legs giving, and by the end of summer I’d given up the running.

"Everything caved one after the other.”


Full article…


South Australian Fibromyalgia Research – Healthy Volunteers Wanted

South Australian news

Wednesday 24 April 2019


From Bridges & Pathways:


MRI scan

Fibromyalgia Research Healthy Volunteers Wanted

By Cathie Powell
Copyright © 2018 Bridges & Pathways.

Women, who are healthy, but who exercise vigorously at most once per week or not at all, aged 18 to 65 and on no regular medication, wanted as volunteers for innovative Adelaide research investigating MRI markers of brain inflammation in fibromyalgia syndrome. Must not be biologically related to any one with fibromyalgia or chronic fatigue syndrome.

For more information see Participant Information Sheet and for a summary of previous research see the link.


Full article…


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

Australian news

Tuesday 23 April 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:

Impact of Fatigue in CFS - Study

Contact: Ms Kate Donnelly (
OR Dr Cynthia Honan (
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 23 April 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.

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.

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


The Reality Behind Her Posts Loughborough Instagrammer With 'Invisible Illness' Wants People To See

International news

Monday 22 April 2019


From UK news outlet LeicesterLive:


Lauren Ashmole
Lauren Ashmole, 22, from Loughborough suffers from
fibromyalgia and ME and hopes her honest captions on
Instagram show the reality of an invisible illness.
(Image: Lauren Ashmole)

The reality behind her posts Loughborough Instagrammer with 'invisible illness' wants people to see

She wants people to 'understand that Instagram doesn't really show you real life'

By Katrina Chilver
21 April 2019
© 2019 Local World

Regularly waking up in so much pain you can barely leave bed is a nightmare for anyone.

For Lauren Ashmole it is a reality, and one that leaves her struggling to live life as a normal 22-year-old would.

But from just looking at the bright, colourful, happy photos she posts to her 59,200 followers on her Instagram page, you would probably never guess anything was wrong.

Suffering from fibromyalgia, which causes pain all over the body and Myalgic Encephalomyelits (ME), also known as chronic fatigue syndrome, Lauren's symptoms are very real, but not usually visible from the outside.

Using her Instagram account, where she posts pictures of herself, her outfits, cakes she has baked and snacks she has prepared, Lauren hopes to show the truth behind Instagram.


Full article…


Fibromyalgia Research – Healthy Volunteers Wanted

South Australian news

Monday 22 April 2019


From Bridges and Pathways:


Adelaide University
Robinson Research Institute


Fibromyalgia Research Healthy Volunteers Wanted

Women, who are healthy, but who exercise vigorously at most once per week or not at all, aged 18 to 65 and on no regular medication, wanted as volunteers for innovative Adelaide research investigating MRI markers of brain inflammation in fibromyalgia syndrome. Must not be biologically related to any one with fibromyalgia or chronic fatigue syndrome.

For more information see Participant Information Sheet and for a summary of previous research see the link.

For further information about the fibromyalgia syndrome, please see also the following link.


Full article…


Participants Needed For Online Survey

South Australian news

Monday 22 April 2019


From The CONVERSATIONS Project (via email):


The Conversations Project

Consumer Expectations & Experiences of the Health Care System – An International Study

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

For more information go to



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

South Australian news

Monday 22 April 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…


Australian Federal Election: Applying For A Postal Vote

Australian news

Sunday 21 April 2019


If you're not well enough to travel to and vote at a polling booth on election day you can apply for a postal vote.

From the Australian Electoral Commission website:


Australian Electoral Commission

Apply for a postal vote 2019


Apply for a postal vote

Applications close 6pm 15 May 2019.

What happens next?

Once you have submitted your application for a postal vote, the AEC will send your ballot paper to the postal address you have provided.

The AEC will start mailing voting papers to postal voters when nominations for candidates have been declared and ballot papers are available.

Submitting your ballot papers

Ballot papers must be completed and witnessed on or before election day Saturday 18 May 2019, and posted back to the AEC as soon as possible.

You only have 13 days after the federal election for your ballot papers to be received by the AEC.

2019 Tasmanian Legislative Council elections

This postal vote application is for the federal election only. The Tasmanian Electoral Commission has information for voting at the 2019 Tasmanian Legislative Council elections for the divisions of Montgomery, Nelson and Pembroke.

Who can be an authorised witness for a postal vote?

In accordance with s.193 of the Commonwealth Electoral Act 1918, an authorised witness for postal voting may be:

  • An elector whose name appears on the Electoral Roll
  • Outside Australia, the following persons are authorised witnesses:
    • an officer of the Defence Force or of the naval, military or air forces of a Commonwealth country,
    • a person appointed or engaged under the Public Service Act 1999,
    • a member of the civil or public service of a State or Territory or of a Commonwealth country,
    • a Justice of the Peace for a State or Territory or a Commonwealth country,
    • a minister of religion or medical practitioner resident in a State or Territory or a Commonwealth country,
    • an Australian citizen.

If you are unable to find one of these people, please see the information in your postal voting guide for further instructions.

A person who is a candidate for the 2019 federal election cannot be an authorised witness.

What if I am a general postal voter or a silent elector?

If you are a registered general postal voter, you will automatically receive a postal vote pack in the mail.

If you are registered as a silent elector, and you are not a general postal voter, you can complete a postal vote application or vote in person at an early voting centre or on election day.


Apply for a postal vote…


When 'The Horrible Monster' Called On Kaye

International news

Sunday 21 April 2019


From New Zealand news outlet SunLive:


Bev and Kaye Dickson
Kaye Dickson (right) and her rock, Mum Bev.
“She fought for me and supported me.”

When ‘the horrible monster’ called on Kaye

Saturday 20 April, 2019
Copyright © Sun Media Ltd 2019.

“Yeah, yeah, we know that.”

Bev Dickson has just been reminded of some desperately dark times in her daughter’s 30-year struggle with ME, myalgic encephalomyelitis or chronic fatigue syndrome.

Wretched times that took daughter Kaye, right to the brink. Bev doesn’t really want to go back there. The head goes down.

“You have to understand that 30 years ago we went to a doctor who hinted Kaye had Tapanui Flu,” says Bev. Colloquially called Tapanui flu after a cluster of people in the Otago town suffered debilitating fatigue in the 1988s, it wasn’t recognised as a genuine medical condition. “The doctor hinted, but wouldn’t acknowledge she had it,” says Bev. “He wouldn’t diagnose it. He was frightened to.”

And it caused confusion, frustration and fear for both mother and daughter. “It got very close,” admits Kaye. “And I am certain that had it not been for my parents, I would not be here today.” She had been considering a way out.

Bev nods. She knew about it. “You just wish the ME would go away.” The ‘horrible monster’ she calls it. “But at the same time we have always been here for Kaye.”

Bev’s role changed forever in 1989. The mother to a bubbly, carefree spirit suddenly became a carer when Kaye got glandular fever – often viruses are precursors to chronic fatigue syndrome.


Full article…


Hidden Illness: 'I Had To Retire From Work At 29 On Medical Grounds. I Was Devastated'

International news

Sunday 21 April 2019


From Ireland's Image magazine:



Hidden illness: 'I had to retire from work at 29 on medical grounds. I was devastated'

By Jennifer McShane
18 April 2019
Copyright © 2019 Powered by

Next, in our Hidden Illness series, we meet 29-year-old Sarah from Dublin, whose illness began at age 10 when she was one of the youngest people in the country to be diagnosed with Fibromyalgia. She tells Jennifer McShane of the heartbreaking reality that comes with daily pain management and having to retire from work at only 29.

Sarah's pain and health issues began before she was even a teenager. "I was diagnosed with Fibromyalgia when I was 10, at the time I was told I was one of the youngest people they had seen with it and not a lot was known about the condition. I went from being an extremely healthy and active, bright young child to a child who lived in constant pain and was highly medicated for most of my young adult life."

"I remember being a really active child, horse riding was my number one passion, I had my poor parents pestered for a pony but to no avail! I did lessons every week and pony camps every summer and just loved every second of it. When I was about 10 I remember getting quite a bad virus. Once I had recovered I got back to my usual routine but started noticing that I was getting very tired and lethargic quickly, having trouble concentrating and most of all my legs were in pain. I can remember going to Blanchardstown Shopping Centre vividly and having to stop on a bench in tears because I couldn’t walk any further due to pain. From there I remember seeing the GP and "growing pains" being mentioned but my symptoms got worse. Eventually, I was sent to Temple Street where the consultant diagnosed me with Fibromyalgia."


Full article…


Petition: Fix The Issues With Accessing The Disability Support Pension

Australian news

Sunday 21 April 2019


From Jake Bailey on


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…


US Woman Tries Unusual Treatment For Fibromyalgia

International news

Saturday 20 April 2019


From US newspaper the Record-Courier:


Donna Diemer
Donna Diemer talks about her fibromyalgia, which made it
impossible to enjoy her grandson as much as she wanted to.
(Photo: Kevin Graff, Record-Courier)

Cuyahoga Falls woman tries unusual treatment for fibromyalgia

By Bob Gaetjens, Reporter
April 7, 2019
© Copyright 2006-2019 GateHouse Media, LLC. All rights reserved • GateHouse News.

While many struggle to find solutions to coping with the pain of fibromyalgia, one Cuyahoga Falls woman, Donna Diemer, said she’s found one that works for her.

She takes the expectorant guaifenesin, which is normally used to help clear sinuses and the chest of mucus congestion. She said the medication is available over-the-counter and has helped her overcome the excruciating pain of fibromyalgia.

Diemer, 56, said she went from being a super-fit, diet-conscious person who relished the outdoors to being a borderline invalid.

“I would scream all night long, rolling over because of the pain; I would crawl to get things done because of the pain,” she said.

She had reached the point where she was considering filing for disability, but the disease was affecting her personal life, as well.

“I dive-bombed very quickly; I couldn’t even bend over to pick anything up,” she said. “I have a grandson, and I couldn’t hold him; I couldn’t be there; I couldn’t even kneel on the floor.”


Full article…


Petition: Remove "Afflicted" Docuseries From Netflix Now

International news

Saturday 20 April 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:


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…


Evidence Of Rabbits In UK In Roman Times, Say Academics

International news

Friday 19 April 2019


From the BBC:


Jane Bramley
Jane Bramley

Evidence of rabbits in UK in Roman times, say academics

18 April 2019
Copyright © 2019 BBC.

Rabbits have been hopping around the UK since Roman times, experts have been able to prove for the first time.

Scientific tests on a rabbit bone, found at Fishbourne Roman Palace in West Sussex, have shown the animal was alive in the first century AD.


'Rabbits gave me a reason to live'

Jane Bramley, 64, from Pontefract, west Yorkshire, has been breeding rabbits for more than 30 years and says the animals played a big part in helping her overcome two serious illnesses.

She was diagnosed with cancer aged 30, shortly after the birth of her son, and it was during her recovery from life-saving surgery that her interest in rabbits started.

After taking over a pet shop, she thought she could make some extra money by breeding and selling rabbits.

"Having such a positive hobby to focus my energy on really boosted my recovery," she said.

Ten years later when she was diagnosed with chronic fatigue syndrome, she says her rabbits once again aided her recovery.

"Rabbits gave me a reason to live," she said. "I had to get out of bed every day to go and see them.

"I feel very strongly that my rabbits are therapy and I have devoted my life to them."

Jane currently owns 72 rabbits with her husband Douglas - she has had over 240 in the past - and it takes them two hours a day to feed and water them.


Full article…


Raising Awareness On Myalgic Encephalomyelitis

International news

Friday 19 April 2019


From US newspaper the Moultrie News:



Raising awareness on Myalgic Encephalomyelitis

Apr 8, 2019 Updated Apr 14, 2019
© 2019, Moultrie News, an Evening Post Industries company. All rights reserved.

On April 23, at 5 p.m. at Charleston City Hall, 80 Broad Street, in council chambers, Mayor John Tecklenburg will read the Proclamation declaring May as ME Awareness Month and May 12, as ME Awareness Day. Councilman White recognized the importance of raising awareness about ME and introduced the Proclamation.

ME, previously known as Chronic Fatigue Syndrome, is a severe, chronic neuro-immune disease manifest by dysfunction of the neurological, immune, endocrine and energy metabolism systems. There are no available diagnostic tests, no FDA-approved treatments and no cure. ME affects 16 to 39 thousand SC residents, up to 2.5 million Americans and 17-20 million worldwide. Despite its prevalence, ME has long lived in the shadows and has been stigmatized as a psychogenic illness, with those afflicted viewed as lazy or malingering rather than having a serious medical disease.

All of this changed in 2015 when the Institute of Medicine, now the National Academy of Medicine, declared that “ME is a serious, chronic, complex, systemic disease that can profoundly affect the lives of patients.” And according to Dr. Francis S. Collins, Director of the National Institutes of Health, “Of the many mysterious illnesses that science has yet to unravel, ME has proven to be one of the most challenging.”

Securing a City Proclamation was a grassroots effort by people with ME to raise awareness about the lack of health equality for ME patients, many of whom have spent decades homebound and bedridden with little or no assistance. Some patients are so weak they cannot feed themselves.


Full article…


11 Celebrities With ME/CFS

International news

Friday 19 April 2019


From ProHealth:



11 Celebrities With ME/CFS

By Erica Verrillo
April 12, 2019
Copyright © 2019 ProHealth, Inc. All rights reserved.

Of the 17 to 24 million people worldwide who have ME/CFS (chronic fatigue syndrome), a number are bound to be celebrities. Some have made their struggles with ME/CFS known to the public, while others – usually for the sake of their careers – have preferred to keep quiet.

Here are 11 contemporary celebrities with ME/CFS who have stepped forward and not only spoken about the illness, but raised funds for research, started forums, written books, made films, and done their best to dispel the notion that ME/CFS is “all in their heads.”

We applaud the efforts of these courageous individuals.


Full article…


Chronic Illness Manifesto Survey

International news

Friday 19 April 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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