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ME/CFS Australia Ltd
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SAHMRI

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(South Australian Health & Medical Research Institute)

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

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ME/CFS SOUTH AUSTRALIA INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:

PO Box 322,
Modbury North,
South Australia 5092

Phone:
1300 128 339

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

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

Disclaimer

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

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

Support

Eco Pest Control

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

 

SOCIETY SEMINARS FOR 2020
Annual General Meeting
Date: 26 September 2020
Time: 2 PM
Seminar Topic: Dr Anne Steinemann discussing MCS
Venue: Online (via Zoom)
 
 

ME/CFS Diagnostic Criteria and Guidelines

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

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

PDF

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

PDF

ME/CFS Guidelines for psychiatrists

PDF

ME/CFS: A Clinical Case Definition and Guidelines for Medical Practitioners
– An Overview of the Canadian Consensus Document
(2005)

  Note: See here for an overview on the Canadian Consensus Criteria for Fibromyalgia (PDF, 1.70 MB)
 
 
Australian ME/CFS Societies
AUSTRALIA
ME/CFS Australia Ltd.
Web: mecfs.org.au
Email: mecfsaustralia@gmail.com
AUSTRALIAN CAPITAL TERRITORY
ACT ME/CFS Society, Inc
Address: PO Box 717, Mawson ACT 2607
Phone: (02) 6290 1984
Fax: (02) 6290 4475
Web: www.mecfscanberra.org.au
Email: mecfsadmin@shout.org.au
NEW SOUTH WALES
ME/CFS & FM Association NSW
Web: www.mecfsnsw.org
Facebook: ME/CFS & FM NSW Support Group
Facebook: Chronic Fatigue Syndrome NSW
QUEENSLAND
ME/CFS/FM Support Association Qld Inc
Address: c/o Mission Department, St. Vincent’s Hospital, Toowoomba Qld 4350
Phone: (07) 4632 8173
Web: www.mecfsfmq.org.au
Email: mefmtba@bigpond.com
Facebook Page
SOUTH AUSTRALIA
ME/CFS South Australia Inc
PO Box 322,
Modbury North,
South Australia 5092
Support line: 1300 128 339
Web: www.sacfs.asn.au
Email: sacfs@sacfs.asn.au
VIC/TAS/NT
Emerge Australia
Web: emerge.org.au
WESTERN AUSTRALIA
The ME/CFS Society of WA (Inc)
Address: The Centre for Neurological Support, The Niche, 11 Aberdare Road, Nedlands, Perth WA 6009
Phone: (08) 9346 7477
Fax: (08) 9346 7534
Web: www.mecfswa.org.au
Email: info@mecfswa.org.au

 

'A Life Sentence': The Frightening Trend Emerging In Young Coronavirus Patients

Australian news

Friday 14 August 2020

 

From Yahoo News Australia:

 

Woman in hospital
Thousands of young coronavirus patients have
reported suffering debilitating symptoms weeks
and months after testing positive for the virus.
(Source: Getty)
 

'A life sentence': The frightening trend emerging in young coronavirus patients

By Nick Whigham
13 August 2020
© Copyright 2020 Yahoo News Australia.

Roughly six months into the global coronavirus pandemic a disturbing picture is beginning to emerge of the long-term impact the virus can have on young and once healthy people.

Doctors and researchers in the US – where the virus continues to spread in much of the country – are sounding the alarm about a growing group of people who are presenting with debilitating symptoms of Myalgic Encephalomyelitis (ME), better known as Chronic Fatigue Syndrome.

The disease, which includes a hugely diverse range of symptoms, is notoriously difficult to assess and diagnose making it difficult for patients to get recognition, let alone effective treatment.

As a result, the flood of coronavirus patients still experiencing devastating health effects months on have gathered in groups online where they share experiences, compare notes and vent their frustrations.

 

Full article...

 
 
 

US Business Sells Clothing For Customers With Rheumatoid Arthritis And Fibromyalgia

International news

Friday 14 August 2020

 

From US newspaper the Killeen Daily Herald:

 

Alexandra Marrero
Alexandra Marrero, owner of Scarf and More Boutique
in Killeen shows some of the dresses
she sells in her store, Monday.
 

Killeen business sells clothing for customers with rheumatoid arthritis and fibromyalgia

By Cade Smith | Herald staff writer
August 10, 2020
© Copyright 2020 Killeen Daily Herald, PO Box 1300 Killeen, TX.

Scarf and More Boutique, a Killeen business located at 1805 Florence Road, sells mainly women’s clothing that caters to those who have rheumatoid arthritis and fibromyalgia.

“I have both rheumatoid arthritis and fibromyalgia,” said owner Alexandra Marrero. “I wanted to make clothes that are comfortable and cater to those who have what I have. So I sell clothes that are recommended for people who have either rheumatoid arthritis and fibromyalgia.”

Marrero, who opened the doors to her shop on July 27, said her business started with her selling scarves from her closet in 2013.

“After that, I used my daughter’s room as the warehouse and then eventually I used my garage as the warehouse,” she said. “I would go to events and set up a table to sell my scarves and add other clothing as I got bigger. I made my business online in 2017 and then I finally got my own store where I opened this year.”

 

Full article...

 
 
 

Donate To SAHMRI

South Australian news

Friday 14 August 2020

 

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

 

SAHMRI
 

Donate To SAHMRI

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

Can You Help?

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

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

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

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

 

Donate now…

 
 
 

Two South Australian ME/CFS Surveys

South Australian news

Thursday 13 August 2020

 

From researcher Amy Hill:

 

Survey
 

To whom this may concern,

My name is Amy Hill, a year 11 student.

I am currently doing my SACE Research Project on ME/CFS, and have written two surveys.

They are designed to take less than 10 minutes each.

 

Survey 1 (for ME/CFS sufferers):
Functionality and Lifestyle of ME/CFS sufferers

Survey 1 is only for people clinically diagnosed with ME/CFS.

You may have Fibromyalgia as well, but not Fibromyalgia only.

The link is: https://www.surveymonkey.com/r/ZBHNXWQ

 

Survey 2 (for ME/CFS carers):
Lifestyle of ME/CFS carers

Survey 2 is for carers and family of ME/CFS sufferers.

The link is: https://www.surveymonkey.com/r/M5D7YYZ

 

I appreciate your time.

Kind Regards,

Amy

 
 
 

Survey: Making The Invisible Visible

South Australian news

Thursday 13 August 2020

 

Flinders University / Caring Futures Institute
 

Making the invisible visible: investigating the views and experiences of frail, homebound and bedridden people

Download this document:
Making the Invisible Visible (PDF, 124 KB)
Making the Invisible Visible (DOCX, 65 KB)

Before COVID-19, some members of our Australian community have been living with several health issues that do not allow them to leave their houses or their beds. They have reported the existence of many problems when trying to access care and the medical system. They argue that many other services and opportunities easily provided to other Australians have been extremely difficult to access for them: “I feel like we're just invisible. Like this problem isn't even on anybody's radar because nobody knows we exist.” - Ricky Buchanan.

Ricky Buchanan is the author of the report “Just Invisible: Medical Access Issues for Homebound/Bedridden Persons”. This report was a catalyst for developing and funding this Caring Futures Institute (CFI) research project: ‘Making the invisible visible: investigating the views and experiences of frail, homebound and bedridden people’. The CFI study is investigating consumers’ lived experiences and insights about the above-mentioned issues, as well as documenting potential healthcare disparities, social exclusion, and marginalisation. ‘Making the invisible visible’ is an important first step to tackle these types of reported problems:

• Reduction in overall health (frailty and increase in morbidity and mortality).
• Inability to recover from minor injuries or illnesses.
• Social isolation – “life becomes smaller”.
• Mental health decline.
• Episodic conditions feeding a health deterioration cycle.
• Diminished capacity to reach out to people, to work, to study, to participate in community and family life.

Dr Maria Alejandra Pinero de Plaza is the lead investigator of this project, which involves a multidisciplinary group of investigators: Dr Michael Lawless, Dr Mandy Archibald, Ms Penelope McMillan, Ms Alexandra Mudd, and Professor Alison Kitson. Ms Penelope McMillan (Chair, ME/CFS South Australia and a Director of ME/CFS Australia) is involved in this study as a consumer co-researcher, at peer level with the Flinders researchers. She shares an interest in further describing this population; particularly, those who are living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (includes CFS, ME or ME/CFS diagnoses), which has been defined as a severe, complex, acquired illness with numerous symptoms related mainly to the dysfunction of the brain, gastrointestinal, immune, endocrine and cardiac systems. It impacts the mobility, frailty levels and healthy aging of many Australians.

Identifying the circumstances and experiences that this self-described invisible population is facing is important. Researchers from the CFI believe that working in collaboration with people from these communities will create avenues to respond to their needs with evidence-based and innovative consumer-centred solutions.

An online survey is available for one month, from this article’s publication, to capture people’s views and experiences in relation to the topic:

https://qualtrics.flinders.edu.au/jfe/form/SV_8qW69nZrlqsdviB

The survey is exploring the different social and health issues that people, particularly those who are frail, homebound, and bedridden, are experiencing in Australia.

The survey will give homebound and bedridden participants the opportunity to provide a photograph of something that represents their lived experience alongside a written description.

This information will be used to create a fully anonymous socio-scientific exhibition of posters to be rotated within different museums, social and community locations. The exhibition will be also be posted in an online gallery on the ME/CFS South Australia website and the CFI. Dr Pinero de Plaza was awarded a CFI accelerator grant to undertake this project and translate the findings of this study into a socio-scientific exhibition (posters), which will present better evidence of what it means to be frail and/or eventually become a homebound or bedridden person in Australia.

 

The survey…

 
 
 

COVID-19: 'The Worst Illness I've Ever Had', Medical Expert Says

International news

Thursday 13 August 2020

 

From Radio New Zealand:

 

Professor Paul Garner
Professor Paul Garner of the
Liverpool School of Tropical Medicine.
(Photo: Supplied)
 

Covid-19: 'the worst illness I've ever had', medical expert says

25 July 2020
© Copyright Radio New Zealand 2020.

As a professor of infectious diseases at Liverpool School of Tropical Medicine, Paul Garner is well qualified to talk about disease.

He's also been fighting Covid-19.

"It's the worst illness I've ever had," he told an ABC reporter. "I've had dengue. I've had malaria. I've never been as ill as this and it's been really frightening because it's so unpredictable."

He was on day 59 since being diagnosed, when this interview was recorded.

"The disease comes at you when you least expect it," he said.

"You feel quite well and then suddenly in the afternoon it slaps you round the head like a cricket bat.

"The length of the illness completely floored me. You just pray every day that it will go away."

Professor Garner is still dealing with exhaustion.

"It gives you some of the symptoms that are very similar to chronic fatigue [syndrome], but I am hesitant about calling it that," he said.

"If we call it Covid fatigue we know where we are.

"I have sympathy for people with chronic fatigue syndrome now, and I believe this disease fast-tracks you into experiencing these symptoms."

 

Full article...

 
 
 

Chronic Fatigue Syndrome A Possible Long-Term Effect Of COVID-19, Experts Say

International news

Wednesday 12 August 2020

 

From CNN Health:

 

CNN Health
 

Chronic fatigue syndrome a possible long-term effect of Covid-19, experts say

By Ryan Prior, CNN
August 7, 2020
© 2020 Cable News Network. Turner Broadcasting System, Inc. All Rights Reserved.

(CNN) – Terri Wilder became dreadfully ill in 2014, falling asleep immediately each day after she got home from work and laying in bed all weekend, recovering just enough to drag herself to work the next week.

"I could barely raise my hand to hail a cab," she said.

After nearly two years, Wilder was diagnosed with a disease called myalgic encephalomyelitis, also called chronic fatigue syndrome, a neuroimmune condition with symptoms including brain fog, severe fatigue, pain, immune aberrations and post-exertional malaise.

She had worked for decades as a social worker and activist for marginalized communities, focusing on HIV research and education programs and LGBTQ health. Wilder was shocked to find that ME/CFS lacked a drug approved by the Food and Drug Administration, and scientists studying the disease only received about $5 million annually in research funding from the National Institutes of Health.

At that point, she found herself in an altogether new marginalized disease community, reminiscent of the stigmatized groups she fought for at the height of the AIDS epidemic in the 1980s.

A chronic disease, ME/CFS can last for decades. It often takes root following some form of viral infection, for instance Epstein-Barr virus or Ross River virus. The novel coronavirus is just one more virus that can potentially trigger the onset of this debilitating condition.

Wilder fears that hundreds of thousands of people with Covid-19 could develop the same illness plaguing her. And leading medical experts have the same concern.

"Even after you clear the virus, there are post-viral symptoms. I know, because I follow on the phone a lot of people who call me up and talk about their course," said Dr. Anthony Fauci, the director of the National Institute of Allergy and Infectious Diseases, in a July 17 interview with Medscape.

"It's extraordinary how many people have a postviral syndrome that's very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome."

 

Full article...

 
 
 

Fibromyalgia Study Seeking Participants To Complete An Online Survey

International news

Wednesday 12 August 2020

 

From ProHealth:

 

Woman with tablet
 

Fibromyalgia Study Seeking Participants To Complete An Online Survey

ProHealth.com
October 1, 2019
Copyright © 2019 ProHealth, Inc. All rights reserved.

Editor’s note: Do you feel like some people treat you differently because you have fibromyalgia? And if you take an opioid medication to help ease your pain, do you feel like people are judging you?

Researchers Drs. Andrea Pfalzgraf and Kim Jones are looking into whether people with fibromyalgia feel invalidated or stigmatized, and if so, how that is affecting their lives. If you have fibromyalgia, you can help them by filling out their survey and sharing your experiences.

Have you experienced stigma related to having Fibromyalgia?

National University of Natural Medicine, University of Washington, and Linfield College is conducting research on the topic of invalidation and stigma in adults who have been diagnosed with fibromyalgia. Invalidation refers to “discounting” and a “lack of understanding” which people with fibromyalgia receive from their social environment.

The purpose of this study is to gather information from adults who have been diagnosed with fibromyalgia about the following:

  1. Perceptions of Invalidation
  2. Perceptions of Opioid-Related Stigma

This study involves completing a one-time, online survey which should take about 30 minutes. Please note the survey is completely confidential and no personal identification of your information can be made. Your participation is essential to understand the impact of invalidation and stigma on people with fibromyalgia, particularly in relationship to using opioid pain medications. Your input will provide valuable information which will enhance scientific literature and may ultimately help improve patient care and treatment outcomes.

If you have any questions regarding this survey, please contact the Principal Investigator, Andrea R. Pfalzgraf, MPH, PhD at apfalzgraf@nunm.edu.

Please click on the link below (or copy and paste into a new browser) to complete the fibromyalgia survey and share your experiences.

https://survey.iad1.qualtrics.com/jfe/form/SV_bdwWcD2Pvpscd8x

Thank you in advance for your time and input!

Dr. Andrea R. Pfalzgraf, PhD, MPH
Research Fellow
National University of Natural Medicine & University of Washington

Dr. Kimberly Dupree Jones, PhD, FNP-BC, RN, FAAN
Dean & Professor
Linfield College, School of Nursing

 

Full article…

 
 
 

Kara Jane Spencer: Musicians Help Severely Ill Singer Finish Album

International news

Tuesday 11 August 2020

 

From BBC News:

 

Kara Jane Spencer
Producers worked with vocal tracks recorded
by Kara Spencer from her bed.
 

Kara Jane Spencer: Musicians help severely ill singer finish album

By Gavin Bevis
BBC News, Derby
8 August 2020
Copyright © 2020 BBC.

A singer seriously ill with a severe form of ME has finished recording her debut album following a public appeal for musicians to help.

Kara Jane Spencer, 29, from Derbyshire, was diagnosed with the condition 13 years ago after suddenly losing the ability to walk.

Her movement is now severely restricted and she needs full-time nursing care.

In May she asked for help to complete the recording and more than 100 musicians and producers came forward.

 

Full article...

 
 
 

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

Australian news

Tuesday 11 August 2020

 

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 investigating fatigue and its impact on everyday functioning.

As a participant, you will be asked to complete an online survey, which will ask you questions about your CFS, your experience with CFS and your everyday functioning. The questionnaire should take between 40 and 70 minutes to complete.

Participation in this study is entirely voluntary.

To volunteer or for further information please click on the link or use your QR scanner to complete the following screening questionnaire:

www.surveymonkey.com/r/F523WCY

Impact of Fatigue in CFS - Study

Contact: Ms Kate Donnelly (kated@utas.edu.au)
OR Dr Cynthia Honan (cynthia.honana@utas.edu.au)
College of Health & Medicine, University of Tasmania

This study has been approved by the Tasmanian Health and Medical Human Research Ethics Committee.

 

PDF Download flyer (PDF, 174 KB)

 
 
 

Participants Needed For Online Survey

South Australian news

Tuesday 11 August 2020

 

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

 
 
 

Disabled Activist Claudia Walder Featured In British Vogue's Activism Issue

International news

Monday 10 August 2020

 

From The Mighty (via Yahoo! News):

 

Claudia Walder
Claudia Walder poses in an image for Vogue.
 

Disabled Activist Claudia Walder Featured in British Vogue's Activism Issue

By Julia Metraux
The Mighty
August 8, 2020
© 2020 The Mighty. © 2020 Yahoo! News.

What happened: Disability activist and editor of Able Zine Claudia Walder is among 41 activists featured in British Vogue’s September 2020 issue, “Activism Now.” Walder, who has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), wrote in an Instagram post that her inclusion in British Vogue is “a dream” come true. The British Vogue issue is on stands in the United Kingdom today.

A dream to be recognised for my activism in Vogue. Thank you Edward Enninful and the British Vogue team for believing in me. — Claudia Walder

 

Full article...

 
 
 

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

South Australian news

Monday 10 August 2020

 

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…

 
 
 

How People With Chronic Pain Feel About The 'No Painkillers' Approach

International news

Sunday 9 August 2020

 

From HuffPost:

 

Jennifer Brough
Jennifer Brough
(Photo: Supplied)
 

How People With Chronic Pain Feel About The 'No Painkillers' Approach

New draft guidance advises against painkillers for chronic primary pain. Here's what those who live with it have to say.

By Natasha Hinde
August 6, 2020
Part of HuffPost Lifestyle. ©2020 Verizon Media. All rights reserved.

Listen to Huffpost UK Life’s weekly podcast Am I Making You Uncomfortable? about women’s health, bodies and private lives. Available on Spotify, Apple, Audioboom and wherever you listen to your podcasts.

“Honestly, I wouldn’t function without pain medication,” says Jennifer Brough, 30, who lives with fibromyalgia and endometriosis, two conditions that have “radically” altered her life since she was diagnosed.

Brough is concerned about new draft guidance from the National Institute for Health and Care Excellence (NICE) that suggests painkillers – paracetamol, ibuprofen, aspirin and opioids – should not be prescribed to treat chronic primary pain (CPP), citing evidence they can cause harm, including addiction.

“While I am reticent to take painkillers often, when I have incapacitating flare-ups, medication provides the necessary respite I need to function,” she says.

Chronic primary pain refers to chronic pain as a disease in itself, according to NICE. It includes issues such as chronic musculoskeletal pain, as well as chronic pelvic pain and fibromyalgia. In contrast, chronic secondary pain is where the pain is a symptom of an underlying condition.

The draft guidance suggests there’s “little or no evidence” the commonly used drugs for chronic primary pain make any difference to people’s quality of life, pain or psychological distress. But Brough disagrees. “To suggest painkillers aren’t effective solutions for managing pain is an oversimplification of the issue,” says the editor and writer from Croydon.

While the guidelines indicate some concern around the long-term impacts of taking pain medication, such as addiction, Brough believes removing this as a treatment option “will dramatically affect the physical and psychological wellbeing of vast numbers of the population”.

 

Full article...

 
 
 

Online Wellbeing Survey For Chronically Ill Young People

South Australian news

Sunday 9 August 2020

 

From UPLIFT (via ME/CFS South Australia on Facebook):

 

Survey
 

Online Wellbeing Survey For Chronically Ill Young People

7 March 2020

If you are a 16-25 year old Australian and living with a diagnosed chronic illness, researchers from Telethon Kids Institute and Curtin University want to hear from you.

Participate in an online survey about wellbeing or take part in a study of an online program that will help you build skills to be kinder to yourself. You will receive a voucher for taking part.

The online intervention and wellbeing surveys for young people with chronic conditions are both open for recruitment. Conditions include, e.g. asthma, allergy, arthritis, burns, cancer, diabetes, myalgic encephalomyelitis/chronic fatigue syndrome, diabetes, pots syndrome, IBC/crohns/ulcerative colitis, multiple sclerosis, cystic fibrosis.

Trial of online wellbeing program: https://upliftproject.com.au/…/online-self-compassion-train…

Online wellbeing survey: https://curtin.au1.qualtrics.com/jfe/form/SV_0kdlJL9dgH7kqDb

www.upliftproject.com.au
#TelethonKids #MEcfsResearch

*******

UPLIFT Online Well-Being Program for Young People with Chronic Illness

In this project we want to find out whether an online program improves wellbeing for teens and young adults with a chronic physical illness. If you complete all of the surveys in this study, you will receive two $20 vouchers (your choice of JBHifi or BigW).

Living with an ongoing illness can be very hard. The UPLIFT program provides strategies that people can use to cope with some of these challenges and develop resilience. By participating in this research, you will help us to understand whether this program is helpful for young people with a chronic illness.

We are inviting you to take part in this study if you are:

Aged 16-25 years
Live in Australia
Currently have a diagnosed chronic physical illness, or are in remission

 

Begin the survey…

 
 
 

Petition: #NotEnoughForME

International news

Sunday 9 August 2020

 

From ME Action:

 

#NotEnoughForME
 

#NotEnoughForME

© 2019 The Myalgic Encephalomyelitis Action Network, All Right Reserved.

Join with #MEAction, and tell the NIH Institute Director, Dr. Walter Koroshetz, that his “plan” for Myalgic Encephalomyelitis (ME) is NOT ENOUGH.

This plan is not funded enough, not outcomes-focused enough and not urgent enough for a disease that has been neglected, stigmatized, and misdirected for over 30 years! We cannot wait several more decades to start the work. The NIH must allocate resources NOW to accelerate research!

#MEAction has sent the following letter to Dr. Koroshetz calling on him to take these five actions now:

  1. Provide set-aside funding for ME to accelerate research

  2. Organize meeting of ME experts to reach consensus on patient selection methods and criteria

  3. Fund the identification and validation of biomarkers

  4. Fund a clinical trials network and treatment trials

  5. Address disease stigma and lack of clinicians impeding research

 

Full petition…

 
 
 

COVID-19 Patients Could Be At Risk For Chronic Fatigue Syndrome: 'Your Whole Life Can Change If You Get This'

International news

Saturday 8 August 2020

 

From US newspaper the Chicago Tribune:

 

Sanna Stella
Sanna Stella outside at her home July 7, 2020, in Oak Park.
(Photo: Stacey Wescott / Chicago Tribune)
 

COVID-19 patients could be at risk for chronic fatigue syndrome: ‘Your whole life can change if you get this’

By Darcel Rockett
July 20, 2020
Copyright © 2020, Chicago Tribune.

As the world continues to watch the number of COVID-19 cases increase (and daily records being broken), patients with myalgic encephalomyelitis, aka chronic fatigue syndrome, want to tell those recovering from coronavirus to listen up.

COVID-19 patients may be at risk of developing the neuroimmune condition ME/CFS that depletes one’s energy. ME/CFS, which leaves 75% of those affected unable to work and 25% homebound or bedridden, impacts 15 million to 30 million people worldwide, and symptoms may be triggered by an infection, according to the National Institutes of Health. Dr. Anthony Fauci, director of the National Institute for Allergy and Infectious Diseases, says some diagnosed with coronavirus are showing symptoms that resemble those seen in ME/CFS patients.

“The ME/CFS community is saying 80% of us had some sort of virus and that went away, and we’re still stuck with all of these symptoms,” said Sanna Stella, an Oak Park resident who was diagnosed with ME/CFS. “If you’re a patient, you really have to listen to your body and not all those ‘shoulds’ we tell ourselves. ... Because if you keep pushing, for some of these patients, it really will make things a lot worse.”

 

Full article...

 
 
 

Chronic Illness Manifesto Survey

International news

Saturday 8 August 2020

 

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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