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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:
By appointment

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: Diana Bordean, a physiotherapist who helps people with Fibromyalgia and ME/CFS.
Topic: What can your physiotherapist do for you?
Plus... ME/CFS Life Hacks. Bring along your favourite disability aid, piece of equipment or device. A Travelscoot and electric wheelchair will be available on the day to try out.

Saturday 11 August 2018
1:30pm
Speaker: Dr Mona Kaur
Topic: Gut Health & ME/CFS
New Venue: SACOSS, 47 King William Rd, Unley

Saturday 24 November 2018
Annual General Meeting
1:30pm
Speaker: Dr Michael Musker, Senior Research Fellow, SAHMRI
Topic: Examining Chronic Fatigue Syndrome using biological markers: A comparison of controls and sufferers
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
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

 

Esther McVey And Her Department Are Now Totally Out Of Control

International news

Tuesday 19 June 2018

 

An opinion piece from UK news outlet The Canary:

 

Esther McVey with the DWP logo
 

Esther McVey and her department are now totally out of control

By Steve Topple
17 June 2018
© Canary Media Limited 2015-18. All rights reserved.

Last year, the UN accused the Department for Work and Pensions (DWP) and successive governments of creating a “human catastrophe” for disabled people in the UK. Since then, the situation has seemingly got worse. The department is now out of control. But is the misery and torture the DWP inflicts on people systematic and by design?

The DWP: in bed with the NHS

As I wrote on 14 June, the NHS and the DWP have been co-working since 2006 on a programme within the health service to get people living with mental health issues back to work. Not satisfied with essentially redefining over 380,000 people’s impairments since 2013 to deny them benefits (a rot which started under New Labour), and forcing nearly two million claimants back to work, the DWP is now invading the holy space of the patient / medical professional relationship. But when you read between the lines, it’s clear why it’s doing this.

Pacing people back to work

The DWP operates systematically in terms of which groups of people it targets to force off benefits and into work – or whose benefits it reduces to such low levels that they quietly eke out their existence on the fringes of society, or die trying. A prime example of this was the now-notorious PACE trial, a research project part-funded by the DWP into treatments for myalgic encephalomyelitis / chronic fatigue syndrome, commonly referred to as ME/CFS or just ME.

It basically said that people living with ME can use talking therapy to think themselves better and that exercise would improve their symptoms. All of this has been dismissed by experts and patients alike but still, bodies like the NHS roll it out as approved treatment (although it’s now under review).

Work or die trying

The thinking behind the PACE trial is clear to me. The causes of ME are still not fully understood. So the DWP and insurance companies in the US saw a win-win situation. No medical professional can, in their eyes, quantifiably prove an ME patient’s illness. This leaves the patient with no strong argument as to why they shouldn’t work. Therefore, by pushing a treatment which suggests ME patients’ symptoms are, in part, psychosomatic, governments can say ‘well, if you can think yourself better then there’s no need for you not to be working, is there?’.

This ultimately reduces health insurance payouts for companies in the US, because people’s illnesses are declared false. In the UK, it forms part of the DWP’s drive to reduce the welfare bill.

 

Full article…

 
 
 

Young Mum Must Now Take 32 Tablets Every DAY After An Insect Bite Near School

International news

Tuesday 19 June 2018

 

From UK newspaper the Mirror:

 

Jordon Craddock
Jordon Craddock needs to take 32 tablets a day.
(Image: Jordon Craddock/BPM Media)
 

Young mum must now take 32 tablets every DAY after an insect bite near school

By Nicholas Dawson and Mark Chandler
17 June 2018
© 2018 MGN Limited

A young mum has to take 32 tablets every single day after being bitten by a tick.

Jordon Craddock, 28, suspects she was attacked by the tiny insect as she played with her three children in woodland near Newlands School in Barwell, Leicestershire.

And since the bite she has been struck down by Lyme disease - a bacterial infection passed on to humans by ticks.

The illness leaves her suffering from bouts of fatigue, dizziness and nausea, forcing her to take scores of pills.

Ms Craddock told the Hinckley Times: "I don’t feel like myself, it’s taken over my body completely.

"Every day is a struggle for me with the tiredness, headaches nausea, brain fog, I am constantly in pain and in and out of hospital.

"If it wasn’t for my family, I don’t think I would be here."

 

Full article…

 
 
 

UK MP Andrea Jenkyns 'Cannot Remember A Day Without Pain' In 15 Years

International news

Monday 18 June 2018

 

From UK newspaper The Yorkshire Post:

 

Andrea Jenkyns and son
Morley and Outwood MP Andrea Jenkyns with her son,
nicknamed "Brexit Clifford" because he was
born on March 29 2017, the day Article 50
was triggered to leave the EU.
 

Tory MP Andrea Jenkyns 'cannot remember a day without pain' in 15 years

By Arj Singh
Saturday 16 June 2018
© 2018 Johnston Publishing Ltd. All rights reserved.

An MP has spoken for the first time about her battle with a condition that causes pain so excruciating it can leave her feeling “paralysed” for days.

Conservative Andrea Jenkyns revealed her experiences with glossopharyngeal neuralgia (GPN), which is similar to trigeminal neuralgia, a condition which has been called “the suicide disease, because they say it’s one of the worst pains known to men”.

Ms Jenkyns also has fibromyalgia, a long term-condition that causes pain all over the body and has meant she “hasn’t had a day free of pain in 15 years”.

The Morley and Outwood MP’s reaction to both conditions is to “just get on with things”, but she is speaking out to raise awareness and encourage research.

 

Full article…

 
 
 

Chronic Fatigue Syndrome Puts Central Florida Woman On A Mission To Help

International news

Monday 18 June 2018

 

From US newspaper the Orlando Sentinel:

 

Mia (right) and Na Anderson
Mia Anderson, who suffers from chronic fatigue syndrome,
with her mother, Na.
(Courtesy Anderson family)
 

Chronic fatigue syndrome puts Central Florida woman on a mission to help

By Mike Candelaria
May 11, 2018
Copyright © 2018, Orlando Sentinel

Mia Anderson knew something was wrong; she just didn’t know what. It was late 2014 and the sophomore pre-med student at the University of Florida was under typical exam stress, she thought.

It was more.

“My brain wasn’t working very well. I was confused,” said Mia, 23, who lives in Maitland. “I was having to put in a lot more effort than my peers. I was napping every other hour. I really didn’t know what was going on.”

It turned out that Mia, like at least 1 million people nationwide and maybe as many as 2.5 million, has myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS). And very few answers.

It isn’t a rare disease. More people in the United States suffer from it than from multiple sclerosis or muscular dystrophy. There is, however, no type of bio-marker to diagnose the disease and no FDA-approved treatments.

Mia’s mother knew all about ME/CFS. After having children, Nancy Anderson was diagnosed with auto immune thyroid disease and “was never really well for 15 years while trying to raise children.” She finally learned it was ME/CFS after a visit to a specialist at Stanford University. She was put on a potent blend of antiviral and anti-inflammation medicines, which brought her functions from “45 to 85 percent,” said Anderson, a nurse whose husband, Mark Anderson, is a doctor.

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Monday 18 June 2018

 

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

 
 
 

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

South Australian news

Monday 18 June 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…

 
 
 

Support Needed At Parliament House This Wednesday (20 June)

South Australian news

Sunday 17 June 2018

 

From ME/CFS Australia (SA) Inc (via email):

 

Sam Duluk
Sam Duluk
 

Support needed this Wednesday.

ME/CFS will be spoken about in the SA Parliament this week.

Sunday 17 June 2018

Sam Duluk, MP for Waite, will be talking on ME/CFS during what is called a Private Member's Grievance session, 3:15 – 4pm. It would be lovely to see as many people as possible in Parliament House this Wed, 20th June, to show our support from the public gallery. (Details below).

Sam supported our recent badge day and became more aware of the plight of pwME, leading him to offer to raise our issues in parliament.

Details:

  • Meet in the Parliament House foyer at 2:45pm, ready to be in the Chamber by 3pm.
  • Wear your #MillionsMissing T-shirt or something red so we stand out in the gallery. If you don't have red then our traditional colour blue. But come, whatever colour you wear!

If you are unable to join us you could send a delegate - family and friends welcome!

 

Full article…

 

 
 
 

Australia's Medical Research Council Questioned On ME And CFS Committee

Australian news

Sunday 17 June 2018

 

From ME Australia:

 

Senator Stirling Griff
Senator Stirling Griff
 

Australia’s medical research council questioned on ME and CFS committee

By Sasha Nimmo
June 15, 2018
© 2018 ME Australia

Australia’s National Health and Medical Research Council (NHMRC) answered questions from Greens, Centre Alliance and Labor senators at Senate Estimates budget hearings. Senator [Stirling] Griff asked if they would add experts in biomedical research to the ME and CFS advisory committee. Senator [Jordon] Steele-John asked if were appropriate concerning if a member of the panel thought that ME or CFS patients could be cured by aqua aerobics. Senator [Murray] Watt asked if the NHMRC will specify criteria or guidelines to be used in the studies it funds.

Prof Anne Kelso, CEO of the NHMRC, was asked about how the Myalgic Encephalomyelitis and chronic fatigue syndrome advisory committee was selected, since nominations were not sought. She believes it is a good mix on the committee, after the NHMRC asked the advice of medical colleges and patient organisations.

“We have formed an expert committee which is made up of people with a particular interest in this sort of issue and with the type of clinical and biomedical skills that are necessary to understand the type of clinical situation,” said Prof Kelso.

When Senator Griff asked if the NHMRC would consider adding members with biomarker and molecular experience, given the importance of biomedical research and the limited experience of the committee, Prof Kelso said she would need to take the question on notice. He noted that on the USA’s equivalent committee, all members have biomedical research expertise.

Prof Kelso said there were two experts, Prof Sonya Marshall-Gradisnik and Prof Andrew Lloyd with research experience, saying he has a ‘long term interest in the relationship between virus infections and chronic fatigue syndromes and is a clinical immunologist and would have a very good understanding of this area.’ While Lloyd has received much of the NHMRC’s funding for CFS research, he has said 90 percent of his work has nothing to do with CFS, it is mostly hepatitis C, and the work he does do on CFS is to rollout CBT and GET training despite the evidence against it.

Senator Griff asked if they sought public expressions of interest for the committees. Prof Kelso said no, but it was possibility and certainly worth considering.

Senator Watt asked, in writing, how the NHMRC planned to include the views of Australia’s leading scientists and clinicians. The NHMRC answered that they had an advisory committee of experts and referred him to the NHMRC’s website.

He asked about making the process more transparent. Again the NHMRC referred him to the same page of their website.

 

Full article…

 
 
 

Petition: Fix The Issues With Accessing The Disability Support Pension

Australian news

Sunday 17 June 2018

 

From Jake Bailey on Change.org:

 

Centrelink is broken
 

Fix the issues with accessing the Disability Support Pension

Jake Bailey started this petition to Minister for Veterans' Affairs Hon. Dan Tehan MP and 3 others
1 March 2018

The current process for people suffering from chronic illness and disability to access social services is flawed in Australia. With waiting times exceeding 9 months for people to be assessed for the Disability Support Pension (DSP) it is forcing those living with a disability in some cases to live a lifestyle that puts them below the poverty line and is causing immense emotional hardship.

 

Full article…

 
 
 

Petition: Stop The Closure Of Welfare Rights Centre SA

South Australian news

Sunday 17 June 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…

 
 
 

Meet A Doctor Who Is A Grandma And A Fighter For Chronic Pain Patients

International news

Saturday 16 June 2018

 

From the National Pain Report:

 

Dr Debbie Nickels Heck
Dr Debbie Nickels Heck
 

Meet a Doctor Who is a Grandma and a Fighter for Chronic Pain Patients

By Ed Coghlan
June 13, 2018
Copyright 2018 National Pain Report

Let me tell you a little secret. Part of how we have tried to grow the National Pain Report is to continually search for important voices. Sometimes they are patients or loved ones who have a story to tell. And sometimes it’s a doctor.

Let me introduce you to Dr. Debbie Nickels Heck from Muncie, Indiana. She was a woman who went to medical school in her 30’s, is a mother of three, a grandmother to seven and a woman with some very strong opinions about the environment in which chronic pain patients are being treated.

We literally met on Twitter [Dr Nickels Heck on Twitter, Ed Coghlan on Twitter] — and I’ve been following her for a while and thought she was intriguing.

So I reached out and said…”hey can we chat?”

She said sure.

Then I didn’t follow up…realized a couple of weeks later I hadn’t and reached out again.

I sent her the following questions:

  1. What is happening to patients?
  2. What is a patient to do?
  3. What alternative therapies do you recommend?
  4. What will the government do?
  5. What should the government do?

Pretty basic, right?

What I received in a response was the following: (I decided not to edit):

 

Full article…

 
 
 

Entertainment Book

South Australian news

Saturday 16 June 2018

 

Order your new Enteraintment Membership!

Dear Friends,

Not sure what you can do to support your ME/CFS community?

Buying an Entertainment Book for yourself or as a gift for others is one way of supporting your Society.

Even if you are unable to dine out, you can save money at selected supermarkets and other retailers. The two for one vouchers come in handy with visitors and children, when using entertainment venues or activity centres.

Let family and friends know they can purchase their new Entertainment Books from us. Not just books covering South Australia; books are available for other states in Australia.

Where to buy:

- At our next Seminar
- Online at https://www.entertainmentbook.com.au/orderbooks/167c042
- For hard copy books (as opposed to digital copies), pay a bit extra for delivery or collect from Parkside – Ph: 1300 128 339 – or email pdelfante@sacfs.asn.au to make arrangements.

 

"The Entertainment Book is great value for such a low price. There are a lot of savings I get back instantly. It more than outweighs the original price. There is something for everyone, casual, fine dining, adventure and family...." - Susan L

 

Entertainment Book

 
 
 

After 25 Years Battling Illness, Actor Prepares To Showcase New Film

International news

Friday 15 June 2018

 

From the Scottish Herald (via the ME Association):

 

Kirsty Strain
Kirsty Strain’s role in ‘And Violet’, a film about adoption,
gave her the idea for her own short film,
Echoes That Remain’.
 

The Herald: After 25 years battling illness, actor prepares to showcase new film | 14 June 2018

By Paul English
14 June 2018
© 2018 Scottish Herald

There have been days when Kirsty Strain’s ME symptoms were so bad, she has been unable to get out of bed. But she is making up for those lost days now.

Over the coming weeks, the actress will see the seeds of her creative endeavours come to fruition with a prolific run of work including a film she conceived, wrote, directed and stars in herself.

The 37-year-old Glaswegian is best known for roles in BBC Scotland programmes such as comedy series Burnistoun and weekly drama River City.

Yet 25 years ago, she first encountered the symptoms of which would eventually lead to her being diagnosed with Chronic Fatigue Syndrome, also known as myalgic encephalopathy.

There is, as yet, no cure for the debilitating condition, which affects an estimated 250,000 people across the UK.

Famous sufferers include former Celtic and Scotland footballer Davie Provan, actor Michael Crawford and American singer-songwriter Randy Newman.

Symptoms include severe tiredness, disordered sleep and reduced cognitive function, with many of those diagnosed rendered unable to work.

For Kirsty, coping with the illness is not so much a battle, as a daily negotiation with her compromised physiology.

 

Full article…

 
 
 

'I Couldn't Be Tickled Or Hugged' Says 19-Year-Old With Invisible Illness Which Makes Her Skin Too Painful To Touch

International news

Friday 15 June 2018

 

From UK news service BristolLive:

 

Charlotte Mole
Tara Davies: "I couldn't go outside on a windy day.
I would cry because it hurt so much."
(Image: BristolLive)
 

'I couldn't be tickled or hugged' says 19-year-old with invisible illness which makes her skin too painful to touch

Bristol teenager Tara Davies has spoken out for the first time about what it's like living with an invisible disability

By Bronwen Weatherby
14 June 2018
© 2018 Local World

Living each day in constant pain and exhaustion is not something you would imagine for a teenager, but this is Tara Davies' reality.

The 19-year-old from Cheswick Village near Filton has spent years managing a hidden illness which at one point become so bad she could not be tickled by her mum without suffering in agony.

Tara has Ehlers-Danlos Syndrome (EDS), a rare genetic condition which affects the connective tissue in her bones, tendons, ligaments, blood vessels and internal organs.

...

Accompanying the EDS, Tara also suffers with Chronic Fatigue Syndrome and Postural orthostatic tachycardia syndrome (POTS) which means when she changes from lying to standing it causes an abnormally large increase in heart rate - making her extremely dizzy.

 

Full article…

 
 
 

Shock Figures In Scotland Show North-East Victim Of Postcode Lottery Of Chronic Pain Treatment Waiting Times

International news

Thursday 14 June 2018

 

From Scottish newspaper The Press and Journal:

 

Abbie Sclater
Abbie Sclater, who is 18, has been
fighting ME for years.
 

Shock figures show north-east victim of postcode lottery of chronic pain treatment waiting times

By Stephen Walsh
13 June 2018
© Aberdeen Journals Ltd 2018. All Rights Reserved.

Chronic pain sufferers in the north-east are waiting far longer for treatment than elsewhere in the country according to the figures, which cover the first three months of this year.

Chronic pain conditions are defined as any illness which stays with someone for the long-term such as fibromyalgia, ME, and chronic pain syndromes.

In Grampian, the average waiting time is 42 weeks – more than double the second-highest, Ayrshire and Arran, at 21.

Among patients who have yet to be seen at the pain clinic in Aberdeen, 54% have been waiting longer than the Scottish Government’s target 18 weeks.

And a whopping 83% who have been seen have waited longer than 18 weeks.

The mother of a teenager who suffers from fibromyalgia, ME and chronic fatigue syndrome has said the lengthy wait makes personalised care difficult.

Elaine Sclater’s daughter Abbie, from Inverbervie, has suffered from chronic pain since she was a child.

 

Full article…

 
 
 

My Battle With Fibromyalgia: Some Days I'm Crippled With Pain But I Won't Let It Hold Me Back

International news

Thursday 14 June 2018

 

From UK news service PlymouthLive:

 

Charlotte Mole
Charlotte Mole
 

My battle with Fibromyalgia: Some days I am crippled with pain but I won't let it hold me back

'Sometimes the pain can be so bad I can't move, other times I’m just so tired that I can't wake up'

By Katie Timms Reporter
12 June 2018
Copyright © 2018

Some days her body aches from head to toe but this "warrior" refuses to let it rule her life.

At the age of 19, Charlotte was diagnosed with Fibromyalgia - a rare condition that causes pain all over the body.

She had already battled a number of health issues during her teenage years and says coming to terms with her diagnosis was tough.

It has forced her to pull out of university three times, once due to bullying because of her condition. She also had to leave a job she loved because she could not fulfil the role requirements.

But despite her often daily struggles she says she is proud of what she has and will achieved - and she says she won't let it ruin her life.

"If you saw me, you wouldn’t know anything was wrong," she says.

"I may look okay, but I’m very good with putting on a mask."

 

 

Full article…

 
 
 

Video: Tips For Carers

International news

Wednesday 13 June 2018

 

From Action for M.E. on YouTube:

 

Action for M.E.
 

Tips for carers

ActionFor M.E.
Published on 12 Jun 2018

Connor, who cares full-time for his partner Sharon, talks about how to support someone who has M.E.

 

 

Full article…

 
 
 

13-Year-Old, Woman's Rescue Of Boy From Drowning In Pool Caught On Camera

International news

Wednesday 13 June 2018

 

From US news service ABC News:

 

Pool rescue
A woman saved a child from drowning at a pool in Minnesota
 

13-year-old, woman's rescue of boy from drowning in pool caught on camera

By M.L. Nestel via GMA
June 10, 2018
Copyright © 2018 ABC News Internet Ventures

A young friend and woman are now considered heroes after they teamed up to perform the incredible rescue of a boy drowning in a pool. The quick thinking of the two, which ultimately saved the boy's life, was all caught on a surveillance camera.

Evan, 12, was swimming with friends at a pool in Rochester, Minnesota, when he sunk to the bottom, while five fellow swimmers were splashing away.

Luckily, 13-year-old Cody Runyon sensed something was awry.

"I went underwater and all of a sudden I see him just lying on the ground just sitting down on 5 feet, just passed out," Cody told "Good Morning America."

The 4-foot-11, 80-pound teen rushed to the bottom of the pool and pulled an unconscious Evan to the shallow end -- the entire scene was caught on a surveillance video.

"I held him around the waist, put his head over my shoulder and I just carried him like that," said Cody of the Wednesday incident.

Desiree Pasko -- who suffers from a severe case of fibromyalgia and can barely walk -- arose from her wheelchair and ran over to the pool edge to assist.

 

Full article…

 
 
 

UK Woman Speaks Of Dealing With ME After GP Tells Her 'It's Not As If You Are Disabled Or Anything'

International news

Wednesday 13 June 2018

 

From UK news service SomersetLive:

 

Nicky Morley
Nicky Morley used to go travelling, hiking and
scuba diving, ride horses and go camping
before her life changing diagnosis.
(Image: Action for M.E.)
 

Bridgwater woman speaks of dealing with M.E. after GP tells her 'It’s not as if you are disabled or anything'

Nicky's life was severely affected following a life changing road accident in January 2012

By Michael Taylor
11 May 2018
Copyright © 2018

“It’s not as if you are disabled or anything” - this is what a GP reportedly told a Bridgwater woman shortly after she was diagnosed with Myalgic Encephalomyelitis (M.E.) and Fibromyalgia.

Nicky Morley, from Othery, Bridgwater, is keen to tell the world about her life changing condition following a road accident in January 2012.

The 48-year-old said: “I had full-body nerve, joint and muscle pain, and could not stop sleeping.

“I went back to A&E a few days later and they said it was just shock.

“I spent the next 12 months seeing various GPs, neurologists and rheumatologists, and was eventually diagnosed with both M.E. and Fibromyalgia.”

 

 

Full article…

 
 
 

Society Constitution

South Australian news

Wednesday 13 June 2018

 

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

 

PDF

ME/CFS Australia (SA) Inc Constitution (PDF, 283KB)

 
 
 

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