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ME/CFS Australia Ltd
Please click here to donate to the society ME/CFS South Australia Inc
 
SAHMRI

Donate to SAHMRI
(South Australian Health & Medical Research Institute)

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

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ME/CFS SOUTH AUSTRALIA INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:

PO Box 322,
Modbury,
South Australia 5092

Phone:
1300 128 339

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

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

Disclaimer

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

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

Support

Eco Pest Control

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

 

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

Saturday 22 June 2019
Time: 1:30pm
Speaker: Dr. Bruce Wauchope
Topic: Where we are at: an update on progress at the clinic
Venue: Parkside Baptist Church, 100 Young Street, Parkside

Saturday 7 September 2019
Annual General Meeting
Time: 2:00pm
Speaker: Occupational Therapist Andrea Parker
Topic: What happens in vagus: an exploration of vagus nerve stimulation as a potential therapy for ME/CFS and beyond (video)
Venue: Unley Community Centre, 18 Arthur Street, Unley

Saturday 14 December 2019
Time: 2:00pm
Speaker: Mike Musker from SAHMRI (SA Health & Medical Research Institute)
Topic: "An analysis of Leptin, Interleukin 6 & Interleukin 1 Beta: A case control study in ME/CFS"
Venue: Unley Community Centre, 18 Arthur Street, Unley
Details for all seminars…

ME/CFS Diagnostic Criteria and Guidelines

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

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

PDF

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

PDF

ME/CFS Guidelines for psychiatrists

PDF

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

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

 

Donate To SAHMRI

South Australian news

Thursday 12 December 2019

 

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

 

SAHMRI
 

Donate To SAHMRI

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

Can You Help?

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

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

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

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

 

Donate now…

 
 
 

Leslie Rose And 'The Picture Of Health'

International news

Thursday 12 December 2019

 

From the Greater Baton Rouge Business Report:

 

Leslie Rose
Leslie Rose
(Photography by Collin Richie)
 

Leslie Rose and ‘The Picture of Health’

By Jef Roedel
Tuesday, December 3, 2019
© Baton Rouge Business Report.

One hundred Facebook comments can mean the end of friendships or the beginning of an expansive art project. In writer Leslie Rose’s case, she’d been suffering symptoms like severe fatigue and muscle cramps, even a stretch of three weeks of complete immobility, from what turned out to be fibromyalgia. That’s when a well-intentioned friend told the 36-year-old, “But you look fine.”

“I remember thinking, ‘I didn’t say I was ugly. I said I was in pain,” Rose recalls.

Rose felt unheard and misunderstood. The seemingly well-meaning remark really hurt. So she took to the social media platform with a simple request: If you are suffering from an invisible illness, post a selfie, and nothing else.

The response was overwhelming, and soon “The Picture of Health” was born with a photo exhibit event at The Healthcare Gallery.

 

Full article…

 
 
 

Disabled UK Mum Feels Like 'Hostage' In Her Own Home Due To 'State Of The Rail Service'

International news

Thursday 12 December 2019

 

From UK news outlet Somerset Live:

 

Katie Robertson and her walker
Katie Robertson and the walker she uses to get about.
 

Disabled mum feels like 'hostage' in her own home due to 'state of the rail service'

She is too scared to attempt to board the packed trains

By Elise Britten
10 December 2019
© 2019 Local World.

A disabled mother says she feels forced to avoid public transport to Bath and Bristol from early November until late January because of the “state of the rail service.”

Katie Robertson, who has lived in Trowbridge for 18 years, says she feels like a “hostage” in her home.

Mrs Robertson, 47, suffers from chronic fatigue syndrome, fibromyalgia, PTSD and anxiety.

She said: “I use a walker to get around so there’s no way I could get onto a train where the doors are rammed with people.

“It’s very frustrating basically being stuck in my own town where there is very little.

“My daughter is five and I would like to be able to take her out places to show her the lights and trees and Santa, but I can’t because public transport is so bad.”

 

Full article…

 
 
 

Fibromyalgia Study Seeking Participants To Complete An Online Survey

International news

Thursday 12 December 2019

 

From ProHealth:

 

Woman with tablet
 

Fibromyalgia Study Seeking Participants To Complete An Online Survey

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

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

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

Have you experienced stigma related to having Fibromyalgia?

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

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

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

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

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

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

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

Thank you in advance for you time and input!

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

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

 

Full article…

 
 
 

Donate To SAHMRI

South Australian news

Wednesday 11 December 2019

 

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

 

SAHMRI
 

Donate To SAHMRI

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

Can You Help?

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

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

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

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

 

Donate now…

 
 
 

USC Research To Diagnose 'Invisible' Illness Faster

Australian news

Wednesday 11 December 2019

 

From the University of the Sunshine Coast (USC):

 

Dr Zack Shan
Dr Zack Shan
 

USC research to diagnose ‘invisible’ illness faster

9 December 2019
© 2019 University of the Sunshine Coast.

A USC researcher has been awarded a prestigious National Health and Medical Research Council grant worth more than $1.2million to help find the underlying neurobiological factors that cause chronic fatigue syndrome and help diagnose it faster.

Also known as myalgic encephalomyelitis, the debilitating illness is often described as an ‘invisible’ health condition and affects between 94,000 and 242,000 Australians.

Symptoms include extreme exhaustion, headaches, and sore or aching muscles. There is currently no single test to diagnose the illness or any approved treatment or cure.

The five-year research grant will support Dr Zack Shan, a Senior Research Fellow from USC’s Thompson Institute, further explore his recent hypothesis that abnormal neurovascular coupling may be the underpinning cause of chronic fatigue syndrome.

 

Full article…

 
 
 

Donate To SAHMRI

South Australian news

Tuesday 10 December 2019

 

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

 

SAHMRI
 

Donate To SAHMRI

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

Can You Help?

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

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

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

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

 

Donate now…

 
 
 

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

Australian news

Tuesday 10 December 2019

 

From the University of Tasmania (via email):

 

University of Tasmania
 

Impact of Fatigue in CFS

Call for Research Participants
Aged between 18 and 65 years

We are looking for volunteers with Chronic Fatigue Syndrome (CFS) or healthy individuals without CFS to take part in a study inevstigating fatigue and its impact on everyday functioning.

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

Participation in this study is entirely voluntary.

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

www.surveymonkey.com/r/F523WCY

Impact of Fatigue in CFS - Study

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

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

 

PDF Download flyer (PDF, 174 KB)

 
 
 

Survey: What Should Be Considered In The Design Of A Clinic To Treat Complex Health Conditions?

South Australian news

Tuesday 10 December 2019

 

Please read the letter below from Cathie Powell at Bridges & Pathways and consider completing the online survey. It only takes about 10 minutes and can really help highlight the need for a round the clock, all in one clinic for all those with chronic complex health conditions.

 

Bridges & Pathways
 

What should be considered in the design of a clinic to treat complex health conditions?

By Cathie Powell
Copyright © 2018 Bridges & Pathways.

We have an urgent request for you to respond to this State Health Survey about ‘the need for a one-stop clinic for people with chronic and complex conditions in South Australia’.

This is a unique opportunity for you to have your say on matters that are important to you about the services you require to manage your chronic condition/s.

While this is not the proposed ME/CFS clinic, it would be complementary and your responses will let the State Health Department know what all South Australians with complex chronic conditions need to manage their health.

We are aware that many of you have difficulty completing online surveys due to the severity of your illness, and that you may also require assistance from family members and / or carers to compile the information. With this in mind we are showing the questions below in printed form, so you have time to think about them before you go online to complete the survey.

As you reply, it is important to remember this is a State Clinic. The aim is to address Service gaps and reduce waiting lists that cause unnecessary stress, disability and the need to go to hospital emergency departments.

Some examples for us might be the lack of:
• GPs and GP clinics that provide continuing and appropriate care with both during the day and after hours access.
• Care Managers, Practice Nurses to coordinate the range of services you need.
• Affordable physiotherapy, exercise physiology, dieticians, occupational therapy, psychologists.
• Holistic providers (many of you have advised us, you use these as part of your care)
• Community education programs, Information, phone and other on-line support from peer groups.

For those of you who are house bound and or live in rural areas,
• The need for 24/7 phone support
Telehealth GP appointments both with the doctor and your Case Manager
• Problems you have with physical access, ambulance, wheel chair, lifters for examination tables.
• Multiple Chemical Sensitivity issues

Any other issues related to the cost of your care e.g.
• The cost of medications
• Cost of tests to guide treatments and help with assessments.
• Services to meet Centrelink and National Disability requirements.

When you open the survey online, you will find the following explanation and 6 questions. As this is an opportunity to have your say, we suggest you to think about the questions before you answer. Thank you!

What should be considered in the design of a clinic to treat complex health conditions? Patients who have chronic and complex health conditions often utilise significant health services, not always at their convenience, through hospitals and emergency departments when access to their GP / other services, cannot be gained. SA Health wants to hear from consumers about what they would like to be considered in the design of a One-Stop Clinic for consumers with chronic and complex conditions.

Questions
1. What professions / healthcare workers would you like to see working there (eg: doctors, nurses, physiotherapist, dietician etc)? (be as specific as you can)
2. What services would you use (eg: physio, wellness and prevention health education, nursing, etc)? (be as specific as you can)
3. What currently makes accessing health services difficult?
4. What would make you go to a ‘one stop clinic’ rather than present to an Emergency Department?
5. What would stop you from going to a ‘one-stop clinic’?
6. Any other comments or suggestions?

Below is the link to the on-line survey about the design of a clinic to treat complex health conditions on behalf of the SA State Health Department. We urgently request you complete it.

https://www.surveymonkey.com/r/CFF2SGZ

Thank you in advance. If you need help please ask your carers to assist you.

Regards Cathie and the SA ME/CFS Fibromyalgia Collaboration Clinic team.
South Australian ME/CFS/FMS Clinical & Research Collaboration
c/- Bridges & Pathways Institute Inc
Office: 08 82704316 or Mobile: 0447 133 682 or AH: 08 8358 6086
Email: bpprojects02@gmail.com

 
 
 

Society Seminar Reminder

Australian news

Monday 9 December 2019

 

The Conversations Project
 

Join us this Saturday 14th December at 2pm for our last seminar for the year.

Due to both Sophia House and SACOSS being currently chemical unfriendly, this event will be held at Unley Community Centre, 18 Arthur St, Unley. Details and map below.

The speaker will be Mike Musker from SAHMRI (SA Health & Medical Research Institute).

The topic will be "An analysis of Leptin, Interleukin 6 & Interleukin 1 Beta: A case control study in ME/CFS".

 

Location: Unley Community Centre is on the eastern corner of Arthur Street and Beech Avenue, Unley. [Map] There is some on-street parking, and extensive off-street parking around Unley Shopping Centre and in the two-storey car-park on Arthur Street.

Unley Community Centre
 

Directions: Bus 190B traverses Unley Road, using Bus Stop 4 located in front of or opposite the Unley City Council Chambers.

We aim to make the afternoon as easy as possible for people to come, so bring whatever you need to be comfortable.

This is a fragrance-free event.

We look forward to catching up with those who can make it.

Unley Community Centre
 

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

Available for purchase/order:
Forgotten Plague DVD: $5
Unrest DVD’s: $23 to pick up & $28 delivered
Entertainment Books: $70

Seminar Videos:
E-copy: Members/Carers - Free, Non-members $5
DVDs: Members/Carers - Free to pick up, $5 by post. Non-members $5 to pick up, $10 by post

 
 
 

Chair's Christmas Challenge For ME/CFS II

Australian news

Monday 9 December 2019

 

From ME/CFS Australia Ltd (via MyCause):

 

Travis Nichols and Laura DeLand
 

Chair’s Christmas Challenge for ME/CFS II

Fundraiser Geoffrey Hallmann
Funds go to ME/CFS Australia
From November 2019
Copyright ©2019. All rights reserved.

IT’S BACK!!!

Last year I introduced the inaugural “Chair’s Christmas Challenge” to raise funds for ME/CFS Australia Ltd.

Support for ME/CFS Australia ensures that your voice is not only heard, but action occurs.

ME/CFS Australia has been active providing funding to grassroots, patient focused commitments, including:

Since 1999 the peak body has been here for patients and those who care for them. ME/CFS Australia is comprised of state organisations, plus Bridges and Pathways. We act in the interests of up to 250,000 Australians impacted by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, a complex neuroimmunological condition.

ME/CFS Australia and its member organisations continue to advocate for the interests of all Australians, including representation on NHMRC committees and panels, applying for the Targeted Call for Research, and writing submissions on federal health, welfare and disability issues.

The Chair’s Challenge is for those who journey with ME/CFS to reach out to their families, friends, team mates, work colleagues and all those others that know of, or support someone with ME/CFS.

I challenge you to raise their awareness of the condition and encourage them to donate to ME/CFS Australia so that we can continue to support you, the patients. All donations are tax deductible.

#MECFS #MECFSSA #PWME #MECFSAUS

 

Donate here…

 
 
 

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

South Australian news

Monday 9 December 2019

 

ME/CFS Australia (SA) Inc
 

ME/CFS South Australia Inc has signed an open letter to the journal Psychological Medicine asking for the 2013 PACE paper to be retracted.

By Deborah Marlin, Committee Member
Originally published on 30 March 2017

No doubt you will remember the PACE trial, a research study conducted in the UK looking at the effectiveness of GET (graded exercise therapy) and CBT (cognitive behaviour therapy) in the treatment of ME/CFS.

In 2013 the research team published a paper in the journal Psychological Medicine, in which they stated that each of these treatments led to recovery in 22% of patients, compared with only 7% in a comparison group. The two treatments, they concluded, offered patients “the best chance of recovery.”

There has been much criticism of the research methods used in this study from other researchers and from the ME/CFS community. ME/CFS South Australia Inc, also, has serious concerns about methodological design flaws in the PACE trial.

 

Read more…

 
 
 

Donate To SAHMRI

South Australian news

Monday 9 December 2019

 

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

 

SAHMRI
 

Donate To SAHMRI

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

Can You Help?

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

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

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

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

 

Donate now…

 
 
 

Participants Needed For Online Survey

South Australian news

Monday 9 December 2019

 

From The CONVERSATIONS Project (via email):

 

The Conversations Project
 

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

The CONVERSATIONS Project
Originally published January 30, 2017

Do you want your voice to be heard?

Participants are needed for an online survey (about 20 mins). Researchers from University of SA and Flinders University are looking to understand consumer health care needs.

Your support in this study will help us to understand your health care needs, determine how responsive your health system is to your needs, and identify areas where health systems could improve to better serve these needs. In appreciation you will be invited to enter a draw to win one of 10 x AU$50 Visa Cards. You will also have the opportunity to receive a copy of the findings.

The survey can be found at https://www.surveymonkey.com/r/CONVERSATIONS-2016.

For more information go to www.conversations-project.info.

#MECFS #MECFSResearch

 
 
 

Donate To SAHMRI

South Australian news

Sunday 8 December 2019

 

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

 

SAHMRI
 

Donate To SAHMRI

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

Can You Help?

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

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

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

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

 

Donate now…

 
 
 

Christchurch Chronic Fatigue Syndrome Sufferer Told It Was All In Her Head

International news

Sunday 8 December 2019

 

From New Zealand news outlet Stuff.co.nz:

 

Gillian Watson
Gillian Watson was diagnosed with chronic fatigue
syndrome in 2017. The debilitating disorder
has had a profound impact on her life.
(Photo: Joseph Johnson/Stuff)
 

Christchurch chronic fatigue syndrome sufferer told it was all in her head

By Oliver Lewis
December 7, 2019
© 2019 Stuff Limited.

An estimated 16,000 to 20,000 people in New Zealand have chronic fatigue syndrome. Despite this, the debilitating condition remains poorly understood. OLIVER LEWIS reports.

Gillian Watson calls it the year she forgot.

The Christchurch woman was struck down with flu in the latter half of 2015 and never really recovered. She didn't know it at the time, but looking back she thinks the illness was the trigger for her chronic fatigue syndrome.

By 2016, she had left her job, exercise made her feel worse, and she was sleeping more and more. An eloquent, well-educated woman, Watson went from dealing with complicated math to struggling to balance her household budget. She was living in a haze.

 

Full article…

 
 
 

Blackburn Mum's Despair Over Cuts To Fibromyalgia Pain Treatment

International news

Sunday 8 December 2019

 

From UK newspaper the Lancashire Telegraph:

 

Nadia Ahmed
'It's like having 100 illnesses in 1'
- mum's despair at cuts to chronic pain treatment funding.
Nadia Ahmed.
 

Blackburn mum's despair over cuts to fibromyalgia pain treatment

By Alima Nadeem
7th December 2019
©Copyright 2001-2019.

A CARE worker with a chronic illness is calling for the government to bring back treatment that helps lessen the pain.

Nadia Ahmed, 35, from Blackburn, is angry she cannot receive any more treatment for Fibromyalgia pain.

Fibromyalgia is a chronic condition causing pain all over the body, affecting sleep, depression, anxiety, and can cause short term memory loss and fatigue.

In June, Mrs Ahmed had NHS treatment at the Beardwood BMI health centre. She had an IV lidocaine infusion released into the blood to block nerve signals.

Mrs Ahmed, who has a 13-year-old son, said: “The surgeon said that due to government cutbacks, we are having to stop all treatment.

“I want justice for me and others who suffer from chronic illnesses. I want to get this petition to the government to ask them to bring back this treatment."

One treatment can cost anything between £1,000 to £3,000 and two a year are needed.

But Mrs Ahmed, senior care assistant at a residential home, said: “I can’t afford it, as a single mum. I feel like I have my life back with the treatment I had last week. I was on so many painkillers, and I have reduced that now. I feel happier and more like the old me again, but I know it won’t last.”

 

Full article…

 
 
 

Petition: Fix The Issues With Accessing The Disability Support Pension

Australian news

Sunday 1 December 2019

 

From Jake Bailey on Change.org:

 

Centrelink is broken
 

Fix the issues with accessing the Disability Support Pension

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

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

 

Full article…

 
 
 

Donate To SAHMRI

South Australian news

Saturday 7 December 2019

 

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

 

SAHMRI
 

Donate To SAHMRI

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

Can You Help?

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

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

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

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

 

Donate now…

 
 
 

Petition: #NotEnoughForME

International news

Saturday 7 December 2019

 

From ME Action:

 

#NotEnoughForME
 

#NotEnoughForME

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

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

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

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

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

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

  3. Fund the identification and validation of biomarkers

  4. Fund a clinical trials network and treatment trials

  5. Address disease stigma and lack of clinicians impeding research

 

Full petition…

 
 
 

Donate To SAHMRI

South Australian news

Friday 6 December 2019

 

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

 

SAHMRI
 

Donate To SAHMRI

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

Can You Help?

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

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

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

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

 

Donate now…

 
 
 

MotoGP, Stoner, Dramatic Confession: "I'm Sick, I Can't Do Anything Anymore."

International news

Friday 6 December 2019

 

From Italian motor sports website GPOne.com:

 

Casey Stoner
 

MotoGP, Stoner, dramatic confession: "I'm sick, I can't do anything anymore."

"I'm always tired, I spend weeks on the couch. Even a simple ride on a motorcycle like the one I did with Alpinestars knocks me out. I'm being treated."

Submitted by GPOne
Translated by Leila Myftija
Wednesday, December 4, 2019
© Partita IVA: 09505981002 - Tutti i diritti Riservati.

Casey Stoner officially retired at the end of 2012 because he couldn't stand the Grand Prix world anymore. Not only the pressure of the races, but also everything that revolved around it, the interviews, and the need to always be a super-champion in the limelight.

In fact, the Australian champion had suffered from chronic fatigue syndrome in previous years that forced him to abandon the races in mid-season in 2009, while he was in Ducati.

When he returned, the diagnosis was a lactose intolerance that, however, did not entirely convince them in Borgo Panigale nor his opponents.

Finally, after his retirement, he took on the role as test rider for Honda (2013-2015) and Ducati (2016-2018), with a last appearance in 2018, before dedicating himself to his two great passions: fishing and bow hunting.

Now, in one of his rare appearances, Stoner gave a revealing interview on Rusty's Garage podcast where he confessed that his physical condition had deteriorated greatly, even admitting that he would be bedridden even for an entire week.

 

Full article…

 
 
 

Chronic Illness Manifesto Survey

International news

Friday 6 December 2019

 

From the UK's Chronic Illness Inclusion Project:

 

Chronic Illness Inclusion Project
 

Chronic Illness manifesto survey

About this survey

This is our first major survey capturing the experiences and views of people living with chronic illness. This is an opportunity to stand up (or lie down) and be counted and have your voice heard. Your responses will inform our chronic illness manifesto for change.

This survey is open to anyone with a long-term health condition or impairment that restricts their day to day life.

The survey takes about 20 minutes to complete. You can complete it in stages, coming back to where you left off. Please take breaks when you need to. We appreciate the effort surveys like this can take, and your answers are incredibly valuable. The more responses we get, the stronger our case for change.

The Chronic Illness Inclusion Project is a research project led by people with chronic illness and supported by the Centre for Welfare Reform. It is part of the DRILL programme of disability research and is funded by Big Lottery Fund. Find out more about DRILL here.

 

Begin the survey here…

 
 
 

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