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ME/CFS Australia Ltd
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ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:
PO Box 322,
Modbury North,
South Australia 5092

Office:
Suite 506,
North Terrace House
19 North Terrace,
Hackney, SA, 5069


Phone:
1300 128 339

Office Hours:
Wednesdays, 11am-3pm

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

BankSA & Staff Charitable Fund

ME/CFS Australia (SA) Inc wishes to thank BankSA & Staff Charitable Fund for its support of Talking Point, the Society’s official journal.

Society Seminars for 2018
Saturday 24 March 2018
1:30pm
Speaker:
Carol Hunter of Rose Park Psychology.
Topic: Coping strategies for patients, carers and families living with ME/CFS.

Saturday 30 June 2018
1:30pm
Speaker: to be announced
Topic: to be announced

Saturday 11 August 2018
1:30pm
Speaker: to be announced
Topic: to be announced

Saturday 24 November 2018
Annual General Meeting
1:30pm
Speaker: to be announced
Topic: to be announced
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 Australia (SA) Inc
Postal address: PO Box 28, Hindmarsh SA 5007
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

 

I Used To Run Marathons But Now There Are Days I Can't Even Dress Myself - The Pain Of Living With Fibromyalgia

International news

Monday 19 February 2018

 

From UK newspaper the Manchester Evening News:

 

Katie Fitzpatrick and Jag Cunliffe
Jag [right] speaking with M.E.N. writer Katie Fitzpatrick
(Image: Eddie Garvey)
 

I used to run marathons but now there are days I can't even dress myself - the pain of living with fibromyalgia

Jag Cunliffe, 35, opens up about living with the debilitating condition that also affects pop icon Lady Gaga - and which has no known cure

By Katie Fitzpatrick
18 February 2018
© 2018 M.E.N Media

Pop icon Lady Gaga recently brought fibromyalgia into the spotlight after she cancelled the last 10 dates of her world tour due to the severe pain it causes her.

A long-term condition that causes pain across the body, the Netflix documentary Five Foot Two had previously explored her struggle with extreme pain and fatigue.

The "Million Reasons" singer was advised by her medical team to cancel the European part of her tour promoting her platinum-selling album Joanne, including her scheduled show in Manchester on February 6.

Jag Cunliffe, 35, from Stalybridge, was diagnosed with the same debilitating chronic pain condition as Lady Gaga after she was involved in a serious car accident in 2012.

Jag, who was due to attend the concert in Manchester, has had her life dramatically changed by the condition.

 

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Monday 19 February 2018

 

From The CONVERSATIONS Project (via email):

 

The Conversations Project
 

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

The CONVERSATIONS Project
Original 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

 
 
 

ME/CFS Australia (SA) Inc Co-Signs International Open Letter

South Australian news

Monday 19 February 2018

 

ME/CFS Australia (SA) Inc
 

ME/CFS Australia (SA) 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 Australia (SA), also, has serious concerns about methodological design flaws in the PACE trial.

 

Read more…

 
 
 

Opioids Are Survival, Not An Epidemic, For Some People

International news

Sunday 18 February 2018

 

From US newspaper The Wichita Eagle:

 

Kirk Seminoff
Kirk Seminoff
 

Opioids are survival, not an epidemic, for some people

By Kirk Seminoff
February 16, 2018
© 2018 The Wichita Eagle

I wrote a column last fall about the opioid epidemic and how it was becoming a bigger problem in Kansas. The point was that many sides – lawmakers, insurance companies, physicians, treatment centers – needed to reach consensus on how to best attack the problem of people abusing the drugs.

A reader reminded me I forgot about a segment of the story: the patients who legitimately need opioids to battle chronic pain and have productive lives.

“It’s real easy to say, ‘Crack down on opioids,’ but at what cost to those of us who actually need them?” said James, a 66-year-old Wichita businessman. “There are some of us who absolutely have to have these drugs or we can be in bed all day in great pain and utterly unproductive and on disability.

“Which is better for society?”

James, by the way, isn’t his real name. He’d rather not reveal his identity. Close friends and co-workers know he has severe spinal-related pain, fibromyalgia and chronic fatigue syndrome, but he doesn’t want the world to know.

 

Full article…

 
 
 

Research Participants Wanted To Develop A Creative Resource About Living With ME/CFS And Fibromyalgia

South Australian news

Sunday 18 February 2018

 

From PhD candidate Gipsy Hosking (via email):

 

University of South Australia
 

Research participants wanted to develop a creative resource about living with ME/CFS and Fibromyalgia

31 May 2017

Researcher: Gipsy Hosking, PhD Candidate, University of South Australia

I’m looking for Adelaide based people, aged 18-30 who are currently living with ME/CFS and/or Fibromyalgia.

If this is you then you are invited to participate in an 8-session group to collectively develop a resource for people living with ME/CFS and Fibromyalgia. This resource will be based on your stories of lived experience and may take a variety of forms such as a booklet, website, short film, photo essay, collection of short fiction etc – it will be up to the group to decide. This is a chance to tell your story, to connect with others and to co-author a much-needed resource both to help others living with these conditions and to educate the general public.

This group is taking place as part of my PhD research project at UniSA on young adult’s lived experiences of ME/CFS and Fibromyalgia. The resource that we create will form the basis of my thesis discussion and analysis.

Please know that I have ME/CFS myself and I am mindful of the debilitating effects of these conditions. I aim to make the group as chronic illness friendly as I can.

For more information please contact me and I will send you a detailed information sheet or if you have facebook you can check out my Facebook page.

If you are interested in taking part or have any questions please contact me at Gipsy.Hosking@myuni.unisa.edu.au or 0408 266 075 or you can message me via the Facebook page www.facebook.com/GHresearch/.

***********************************

DOCX Call for participants plain text.docx (135 KB)

PDF Call for participants flyer.pdf (137 KB)

PDF Participant Info Sheet.pdf (155 KB)

 
 
 

Petition: Stop The Closure Of Welfare Rights Centre SA

South Australian news

Sunday 18 February 2018

 

From Change.org:

 

WRC
 

STOP THE CLOSURE OF WELFARE RIGHTS CENTRE SA

By Stephany Del Canto
1 June 2017

© 2017, Change.org, Inc.
Certified B Corporation

AWARD WINNING SPECIALIST WELFARE RIGHTS CENTRE SA FACING CLOSURE

Welfare Rights Centre SA is a community legal centre which specialises in social security law. The Centre has 30 years of experience and expertise in social security law and Centrelink administration. We provide free legal advice and representation to clients facing Centrelink problems. Our clients are the most vulnerable in our community; including terminally ill clients, systematically abused and significantly mentally ill clients attempting to obtain the Disability Support Payment, young people escaping horrifically violent homes to obtain a payment to afford food and people leaving domestic violence relationships to get payments to start a new life.

...

In the 2015-2016 financial year, we provided legal advice to well over 2,000 clients facing Centrelink issues and saw over 500 clients through the Housing Legal Clinic.

Late on Friday afternoon, 26 May, we received the surprising and shocking news that the Welfare Rights Centre SA was unsuccessful in retaining their funding beyond the 30 June 2017.

This level of expertise does not exist anywhere else in South Australia. All this experience will be lost if the closure goes ahead. The inability to get timely access to secure income support is often at the root of other legal needs, including housing, credit and debt and family violence. We have assisted domestic violence victims, vulnerable minors, people with significant disabilities and those facing homelessness.

 

Full article…

 
 
 

UK Woman With ME/CFS Says She Has Lost Her Life Savings After Amazon Account Hacked

International news

Saturday 17 February 2018

 

From UK newspaper the Plymouth Herald:

 

Sarah Brown
Sarah Brown's Amazon account was hacked and
more than £4,300 of purchases were made.
(Image: Plymouth Herald)
 

Woman says she has lost her life savings after Amazon account hacked

The retail company has since said they have refunded all of the money to Sarah Brown.

By Katie Timms
16 February 2018
© 2018 Plymouth Herald

An artist says she has lost her life savings after her account was emptied when someone hacked into her Amazon account and bought almost £4,500 worth of goods.

Sarah Brown, 51, from Lower Compton says she has been treated "appallingly" by both her bank and the online retail platform, following the fraudulent activity.

...

Miss Brown has chronic fatigue syndrome, general anxiety disorder, and chronic insomnia.

She says that the stress of the situation has had a "huge impact" on her health.

"I have hardly slept in weeks and my fatigue and anxiety has increased immensely.

"I am unable to use my bank accounts unless I physically go into the branch and this increases my fatigue."

 

 

Full article…

 
 
 

Exercise Elevates Blood Signature Difference Between People With, Without Chronic Fatigue Syndrome

International news

Saturday 17 February 2018

 

From Stanford Medicine's Scope:

 

Treadmill
 

Exercise elevates blood signature difference between people with, without chronic fatigue syndrome

By Bruce Goldman
February 15, 2018
© Stanford Medicine 2018

A bout of exercise is about the last thing you'd imagine a person with chronic fatigue syndrome – also known as myalgic encephalomyelitis and often designated by the acronym ME/CFS – would want to endure. And you'd probably be right.

But a new study suggests that a blood test following exercise may be a very good way to differentiate between people who have ME/CFS and people who don't. That's important, because one of the things that have made efforts to treat and, perhaps, cure the debilitating disorder – which according to Stanford ME/CFS expert Jose Montoya, MD, afflicts between 1 million and 4 million people in the United States alone – almost preternaturally difficult has been the difficulty in establishing a definitive diagnosis for it. (That explains the large range in Montoya's estimate of the number of people with ME/CFS: A lot of people who have it don't know they have it – or at least their doctors don't.)

Recent work by Montoya and other Stanford researchers has identified a "signature" consisting of altered levels of as many as 17 different bloodborne substances in ME/CFS patients. But the signature is written in disappearing ink: Patients with an ME/CFS status of longer than three years in duration appear to lose it. Likewise, levels of some of these substances move in opposite directions among patients whose cases are more severe versus patients with less-severe cases.

 

Full article…

 
 
 

Calvin Klein's Runway Highlights Multiple Chemical Sensitivity Disorder. What Is It?

International news

Saturday 17 February 2018

 

From Yahoo! News:

 

Lulu Tenney
Calvin Klein
Model Lulu Tenney opens the Calvin Klein fall 2018 show
wearing a balaclava, an orange cropped safety jacket,
pants, and thigh-high white protective boots.
(Photo: Getty Images)
 

Calvin Klein's runway highlights Multiple Chemical Sensitivity disorder. What is it?

By Julie Tong
Yahoo Lifestyle
February 16, 2018
© Yahoo! News 2018

A controversial disease known as Multiple Chemical Sensitivity (MCS) has become an unlikely point of inspiration for Raf Simons, the creative mind behind Calvin Klein.

During his Tuesday New York Fashion Week show, Simons referenced the 1995 Todd Haynes film Safe, which stars Julianne Moore as Carol. The main character becomes a victim in her own home and the world around her. She is, in short, allergic to her own life, as she begins to develop mysterious symptoms — mystery bleeding, fatigue, and weight loss — all inexplicable to doctors. As Carol becomes increasingly curious about what is causing her pain, she suspects the environment and starts wearing long sleeves and a balaclava to stay protected.

 

Full article…

 
 
 

Dancer Launches New Fitness Studio In The Heart Of Chester

International news

Friday 16 February 2018

 

From UK newspaper The Chester Chronicle:

 

Sarah Mansfield
Sarah Mansfield, dancer and founder of the new CH1 Studios
in Chester. Picture by RJ Bradbury Photography.
(Image: UGC)
 

Dancer launches new fitness studio in the heart of Chester

Sarah Mansfield has set up CH1 Studios at Rufus Court

By Michael Green, Executive Editor Cheshire Weeklies
15 February 2018
© 2018 Trinity Mirror Merseyside

A new Chester fitness studio is about to open its doors to the public and will offer a variety of sessions and workshops that include jazz, contemporary and commercial dance, yoga, and pilates.

Dancer and founder Sarah Mansfield said: “CH1 Studios isn’t a typical fitness studio - our focus is on combining health and wellbeing exercises with expressive arts in a community environment.”

...

At the age of 21, Sarah was diagnosed with chronic fatigue syndrome, a long-term illness which she still lives with today.

She admits to burning herself out working full-time, studying and participating in various extra-curricular activities.

“I was reckless with my body, but I quickly realised that I would have to be conscious of managing my energy levels and safeguarding my health. I had to think about my physical and mental wellbeing.”

 

Full article…

 
 
 

NICE Announces Next Steps In Updating Its Guideline On ME/CFS

International news

Friday 16 February 2018

 

From the UK's National Institute for Health and Care Excellence (NICE):

 

Speech bubbles
 

NICE announces next steps in updating its guideline on ME/CFS

15 February 2018
© NICE 2018. All rights reserved.

A workshop last month with stakeholders marked the formal start of NICE’s collaborative work to update its 2010 guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The workshop was held so that stakeholders, including patient groups for people with ME/CFS and their carers, could help NICE identify at an early stage the issues they consider most important for the development of the new guideline.

Over 45 people attended the workshop, representing 37 different organisations supporting people with ME/CFS.

NICE has also confirmed the next steps in the development of the new guideline, starting with a further workshop with stakeholder organisations on 25 May to discuss the scope of the guideline. Stakeholders will then have the opportunity to comment on the draft scope between 21 June and 19 July. This will coincide with recruitment to the independent guideline committee, which will also begin on 21 June with adverts posted on the NICE website.

Professor Mark Baker, director of the NICE centre for guidelines, said: “We wanted to get the views and insights of as many people as possible who are affected, either directly or indirectly, by ME/CFS to make sure we understand the issues that are important to them.”

 

Full article…

 
 
 

Video Contest Urges People With Invisible Disabilities To Declare #IAmInvisibleNoMore

International news

Thursday 15 February 2018

 

From Nasdaq's GlobeNewswire:

 

I Am Invisible No More
 

Video Contest Urges People with Invisible Disabilities to Declare #IAmInvisibleNoMore

Allsup and Invisible Disabilities Association raise awareness and help people connect through video storytelling

By Tai Prohaska
Source: Allsup
February 14, 2018
© 2018 GlobeNewswire, Inc. All Rights Reserved.

Belleville, Illinois, Feb. 14, 2018 (GLOBE NEWSWIRE) -- The Invisible Disabilities Association (IDA), an organization dedicated to raising worldwide awareness of invisible disabilities, and Allsup, the nation’s premier provider of Social Security Disability Insurance (SSDI) representation, today announced the launch of the #IAmInvisibleNoMore video contest.

Individuals living with invisible disabilities who upload their personal stories on video will be eligible to win prizes including a trip to Denver to attend the IDA Awards in October.

“Living with an invisible disability means struggling to get people to believe you when you explain how your condition affects you,” said IDA founder and CEO Wayne Connell. “Imagine being labeled as lazy or rude because people don’t appreciate how your illness makes certain activities impossible. This disbelief not only affects relationships, it can be a barrier to care and benefits as well.”

 

Full article…

 
 
 

Resilient Caiti Comes Out Firing

Australian news

Thursday 15 February 2018

 

From Australian newspaper the Riverine Herald:

 

Caiti Baker
Caiti Baker
 

Resilient Caiti comes out firing

By Riverine Herald
Wednesday 14 February 2018
© Copyright McPherson Media Group 2018

CALLING Caiti Baker versatile is a serious understatement.

Caiti’s multifaceted melodies and stunning vocals have impressed audiences around the country as she perfectly balances the sounds resonant of soul, R&B, pop and hip hop.

...

Caiti’s album Zinc encapsulates the struggles the songstress faced behind the scenes.

Ranging from her battles with mental and physical illness to her falling out with her musicologist father, the album is a raw insight into her life.

Zinc coincided with my reunion with my father and when, for probably the first time in my life, I was mentally and physically healthy,” Caiti said.

“I had finally been diagnosed and treated correctly for chronic fatigue syndrome and bipolar disorder.

“I was writing a lot about my identity.”

 

Full article…

 

 
 
 

First All-Vegan Cruise Prepares To Set Sail In Australia

Australian news

Thursday 15 February 2018

 

From Green Matters:

 

Ship
(Source: Pixabay)
 

First All-Vegan Cruise Prepares To Set Sail In Australia

By Brian Spaen
Wednesday 14 February 2018
© 2018 Green Matters

This year, an all-vegan cruise is coming to Australia for the first time. The Whole Connection plans to launch a nine-day trip from Sydney that will coast around the Pacific Islands on a five-star cruise ship, The Celebrity Solstice. It’s a voyage to help people discover “optimal health, vitality, and wellbeing” in their life.

Paige Renshaw can up with the idea for all-vegan cruise, as she had recently switched over to a plant-based diet herself. She’s suffered from chronic fatigue syndrome, a mysterious disorder that makes people constantly tired and struggle to recover after resting. Not much is known about the cause, but Renshaw tackled it by changing her eating habits to a plant-based diet.

 

Full article…

 
 
 

Former Barrister Helping Women Regain Control Of Their Lives

International news

Thursday 15 February 2018

 

From UK newspaper The Yorkshire Post:

 

Andrea Morrison
Andrea Morrison Life coach
 

Former barrister helping women regain control of their lives

By Catherine Scott
Wednesday 14 February 2018
© 2018 Johnston Publishing Ltd. All rights reserved.

Eight years ago Andrea Morrison had burnt out. Now she is sharing how she turned her life around. Catherine Scott reports.

“I don’t think I know how to be stressed any more,” says Andrea Morrison.

That is very different to 2010 when Andrea was forced to take time off work as a barrister after being diagnosed with chronic fatigue syndrome.

 

Full article…

 
 
 

Understanding Pain - Fibromyalgia

South Australian news

Wednesday 14 February 2018

 

From ABC Radio Adelaide:

 

ABC
 

Understanding pain - Fibromyalgia

On Afternoons with Sonya Feldhoff
8 February 2018
© 2018 ABC

ABC Radio announcer Sonya Feldhoff interviews Professor Mark Hutchinson, Director of the Centre for Nanoscale Biophotonics, in the School of Medicine, at the University of Adelaide.

 

 

Full article…

 
 
 

Living With ME Is Like Being Stuck In A Waiting Room, Says Belle And Sebastian's Stuart Murdoch

International news

Wednesday 14 February 2018

 

From BBC Scotland:

 

Stuart Murdoch
Belle and Sebastian's Stuart Murdoch
 

Living with ME is like being stuck in a waiting room, says Belle and Sebastian’s Stuart Murdoch

26 January 2018
Copyright © 2018 BBC

Belle and Sebastian’s frontman might look like the picture of health when he’s performing in front of thousands of fans.

But for most of his adult life Stuart Murdoch has been living with Myalgic Encephalomyelitis (ME), or Chronic Fatigue Syndrome (CFS).

He spoke about his struggles with the debilitating condition on Brainwaves.

“Sometimes it’s like the worst hangover you’ve had, and you’re going to have it all day and all next week as well,” he said.

“And then sometimes it’s like the day before you come down with a bad flu. That sort of feeling that persists and persists”.

Touring can be strenuous and Stuart has previously spoken of how Belle and Sebastian cope with his needs.

 

Full article…

 
 
 

Society Constitution

South Australian news

Wednesday 14 February 2018

 

ME/CFS Society (SA) IncThe Society's Constitution has been updated:

 

PDF

ME/CFS Australia (SA) Inc Constitution (PDF, 154KB)

 
 
 

Inspiring Disabled Artist Creates Stunning Exhibition With The Help Of Hull's Homeless

International news

Tuesday 13 February 2018

 

From UK newspaper the Hull Daily Mail:

 

Jason Wilsher-Mills
Jason Wilsher-Mills wants to create a monument
to celebrate Hull's disabled community
 

Inspiring disabled artist creates stunning exhibition with the help of Hull's homeless

Jason Wilsher-Mills hopes to create a monument to celebrate Hull's disabled community after the success of his recent exhibition

By Alex Grove
8 February 2018
© 2018 Local World

...

Jason Wilsher-Mills, 47, uses a wheelchair and is frequently bed-bound by chronic polyneuropathy and chronic fatigue syndrome.

However, despite his ailments, the 47-year-old has been hard at work putting together a colourful exhibition at Artlink in Princes Avenue called ‘Unexpected Engagement.’

The collection features funky pieces such as ‘East Hull Elvis,’ as well as ‘The X-Factor Princess,’ and everything in the gallery has been put together with the help of the homeless and recovering drug users.

 

 

Full article…

 
 
 

In My Chronic Illness, I Found A Deeper Meaning

International news

Tuesday 13 February 2018

 

From The New York Times:

 

Disability (Dadu Shin)
(Image: Dadu Shin)
 

In My Chronic Illness, I Found a Deeper Meaning

By Elliot Kukla
Disability
January 10, 2018
© 2018 The New York Times Company

...

I went from doctor to doctor looking for answers, but overnight I had gone from being a trusted rabbi and chaplain (who works with seriously ill and dying people on hospital medical teams) to a “hysterical” chronically ill person. Though I had seen it happen to my clients, I now understood firsthand that being disbelieved is nearly universal for people with chronic illnesses, especially those that are largely invisible or hard to diagnose or both. I had believed that as a health care professional, equipped with skills and advocates to navigate the system, I would be treated differently. I soon learned how hubristic that was.

Eventually, because of the tireless advocacy of my wife, I was diagnosed with central nervous system lupus (an autoimmune disease that attacks the brain and central nervous system), as well as fibromyalgia, chronic fatigue syndrome and complex migraines. My lupus diagnosis would later be taken away and then given back countless times as suited the needs of health insurance and disability insurance companies to sort and manage me and decide how much care I was entitled to. The needs of my body were virtually irrelevant in this process as my diagnosis become a monetized affair where I had to jump through increasingly difficult hoops to “prove” it.

 

Full article…

 
 
 

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