Participate in Research

If you have an interest in ME/CFS research, you may like to explore:

Current opportunities

ME/CFS Australia thanks USC for giving us the opportunity contribute to the content of the survey.

Researchers from the University of the Sunshine Coast are seeking adults who have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or carers and clinicians (GPs, specialists, exercise physiologists, physiotherapists, psychologists) who support people with ME/CFS, to help understand the experiences of and identify barriers to ME/CFS patients engaging with physical and daily life activity, rest, and pacing.

Participation will involve a 20-minute anonymous survey. Eligible participants will go in the draw to win 1 of 2 $50 eMasterCards.

For more information and if interested in taking part, access the survey via the link below:

https://uniofsunshinecoast.syd1.qualtrics.com/jfe/form/SV_bvLsufrMlDnoCfI

You may also choose to join a focus group to develop a clinical resource and be reimbursed $100 for your time.

If you would like more information, email Sue Broadbent at sbroadbe@usc.edu.au

Ethics approval: A252724

Curtin University and Telethon Kids online wellbeing program for young people

Try out the new Coping Compass online wellbeing program designed for and by young people with chronic conditions, and provide feedback to the researchers.

If you decide to take part, you will choose one of the three modules to complete and provide feedback on, along with completing four short online surveys over one month. Participants will receive a voucher as reimbursement for their time.

The program has three online modules that teach specific skills to help you cope with everyday challenges. Each module takes 60-90 minutes to complete and can be done at your own pace.
 

You are eligible to participate if you are:

• Aged 16-25
• Live in Australia
• Diagnosed with a long-term health condition

For more information, scan the QR code to read the Participant Information Sheet or email asha.parkinson@telethonkids.org.au 

Identification of isotype expression of TRP candidate genes in NK cells from ME/CFS patients

The NCNED has previously reported various Transient Receptor Potential Melastatin 3 (TRPM3) dysregulations in ME/CFS patients, including genetic variations, reduced surface expression and impaired ion channel function. This project aims to identify isotype expression of candidate genes for specific TRPs on NK cells from ME/CFS patients. All participants will be asked to donate 85ml of peripheral blood. Participants will also receive a $5 Coles e-voucher and enter the draw to win $50, $75 and $100 Coles e-vouchers drawn half-yearly.
 

Currently Recruiting: Healthy control participants and Australian citizens formally diagnosed with ME/CFS aged between 18-60 years old.

Please contact NCNED in order to participate: (07) 567 89283 or ncned@griffith.edu.au.

Lead researchers: Prof Sonya Marshall-Gradisnik, Prof Don Staines

Health-related quality of life in patients with ME/CFS: an Australian cross-sectional study

This study aims to further examine the significant impact of sociodemographic and patient symptom characteristics on health-related quality of life (HRQoL) in Australians diagnosed with ME/CFS. The NCNED have previously reported significantly impaired HRQoL scores in ME/CFS patients. This project hopes to provide confirmation of the negative effects ME/CFS have on HRQoL and compare data with past surveys.

NCNED researchers are currently recruiting Australian citizens formally diagnosed with ME/CFS to participate in an online survey seeking information on illness presentation, comorbidities and health-care satisfaction. The survey is open to Australian residents aged between 18-60 years old and will involve the completion of two online surveys. Participants will receive a $5 Coles e-voucher and enter the draw to win $50, $75 or $100 Coles e-voucher drawn half-yearly.

Please contact NCNED in order to participate: (07) 567 89283 or ncned@griffith.edu.au.

Lead researchers: Prof Sonya Marshall-Gradisnik, Prof Don Staines

The economic impacts of ME/CFS in an Australian cohort

The study aims to examine the direct and indirect costs associated with health-care expenditure and loss of income reported by Australian ME/CFS patients. Previously, the NCNED reported that the average annual cost of ME/CFS was estimated at $14.5 billion per year including costs related to health-care, diagnostics, medicines and loss of income. Improved understanding of illness pathology, diagnosis and treatment options may reduce costs and decrease the burden of ME/CFS in Australia.

NCNED researchers are currently recruiting Australian citizens formally diagnosed with ME/CFS to participate in an online survey seeking information on costs directly associated with ME/CFS over a one-month period. The survey is open to Australian residents aged between 18-60 years old and will involve the completion of two online surveys.

Participants will receive a $5 Coles e-voucher and enter the draw to win $50, $75 or $100 Coles e-voucher drawn half-yearly.

Please contact NCNED in order to participate: (07) 567 89283 or ncned@griffith.edu.au.
 

Lead researchers: Prof Sonya Marshall-Gradisnik, Prof Don Staines

Gastrointestinal symptoms and dietary habits among Australian ME/CFS patients

Description: This cross-sectional study aimed to elucidate the role of gastrointestinal manifestations and diet in the clinical presentation of ME/CFS. Results from this study reported a highly prevalence of gastrointestinal disturbances in ME/CFS patients, whereby majority of patients reported that daily activities significantly influence their symptom presentation. Access to healthcare professionals in relation to gastrointestinal symptoms or diet was also commonly observed by patients. Therefore, this cross-sectional study highlights that gastrointestinal symptoms and diet should be strongly considered for the management of ME/CFS.

NCNED researchers are currently recruiting Australian citizens formally diagnosed with ME/CFS to participate in an online survey seeking information on illness presentation, comorbidities and health-care satisfaction. The survey is open to Australian residents aged 18-60 years old and will involve the completion of three online surveys.

Participants will receive a $5 Coles e-voucher and enter the draw to win $50, $75 or $100 Coles e-voucher drawn half-yearly.

Please contact NCNED in order to participate: (07) 567 89283 or ncned@griffith.edu.au.

Lead researchers: Prof Donald Staines, Prof Sonya Marshall-Gradisnik

NCNED: Genotyping Analysis

This project aims to investigate the role of ion channel dysfunction in immune cells of ME/CFS and Long COVID patients through genotyping analysis.
 

We are recruiting the following participants:

• ME/CFS group: participants who have received a diagnosis of ME/CFS (where diagnosis was made using the CCC 2003 or ICC 2011 definitions).
• Post-viral syndrome group: participants reporting chronic symptoms following a known viral infection but have not received a diagnosis of ME/CFS nor other medical explanation for the symptoms.
• Long COVID group: participants meeting the World Health Organization definition.
• Control group: participants who report no health concerns.

The inclusion criteria are as follows:

• Aged 18 to 65 years old
• Non-smoker
• No current diagnosis of serious chronic illness, e.g. autoimmune, cancer, cardiovascular, diabetes or primary psychiatric diseases
• Not pregnant or breastfeeding

This study involves:

• Donation of 14ml of blood
• Completion of an online questionnaire (in English)

Participants will receive a $25 Coles e-voucher and enter the draw to win $75, $100 and $150 Coles e-voucher drawn half-yearly.

If you are interested in participating, please contact ncned@griffith.edu.au or call on (07) 5678 9283.

NCNED: Impact of Illness on Quality of Life

This project aims to follow people with ME/CFS and Long COVID over time to observe changes in symptom presentation and QoL. Further, we aim to make comparisons with other multi-systemic illnesses, such as Fibromyalgia (FM), Multiple Sclerosis (MS), and Rheumatoid Arthritis (RA).
 

We are recruiting the following participants:

• ME/CFS group: participants who have received a diagnosis of ME/CFS (where diagnosis was made using the CCC 2003 or ICC 2011 definitions).
• Post-viral syndrome group: participants reporting chronic symptoms following a known viral infection but have not received a diagnosis of ME/CFS nor other medical explanation for the symptoms.
• Long COVID or Post COVID-19 Condition: meeting the World Health Organization case definition.
• People with Fibromyalgia, Multiple Sclerosis and Rheumatoid Arthritis.
• Control group: participants who report no health concerns.

The inclusion criteria are as follows:

• Aged 18 to 65 years old.
• Non-smoker.
• No history of malignancy within the past 5 years.
• If you are a person with ME/CFS or Long COVID, you will not be able to participate in this research if you have received a diagnosis of an autoimmune disease.
• Not pregnant or breastfeeding.

This study involves:

• Completion of three online questionnaires (in English) every six months.

Participants will receive a $25 Coles e-voucher and enter the draw to win $75, $100 and $150 Coles e-voucher drawn half-yearly.

If you are interested in participating, please contact ncned@griffith.edu.au or call on (07) 5678 9283.

NCNED: Ion Channel Dysfunction

This project aims to investigate the role of ion channel dysfunction in ME/CFS and Long COVID patients as potential diagnostic and therapeutic targets.
 

We are recruiting the following participants:

• ME/CFS group: participants who have received a diagnosis of ME/CFS (where diagnosis was made using the CCC 2003 or ICC 2011 definitions).
• Post-viral syndrome group: participants reporting chronic symptoms following a known viral infection but have not received a diagnosis of ME/CFS nor other medical explanation for the symptoms.
• Long COVID group: participants meeting the World Health Organization definition.
• Control group: participants who report no health concerns.

The inclusion criteria are as follows:

• Australian residents aged 18 to 65 years old
• Non-smoker
• No current diagnosis of serious chronic illness, e.g. autoimmune, cancer, cardiovascular, diabetes or primary psychiatric diseases
• Not pregnant or breastfeeding

This study involves:

• Donations of 84ml of blood
• Completion of an online questionnaire

Participants will receive a $25 Coles e-voucher and enter the draw to win $75, $100 and $150 Coles e-voucher drawn half-yearly.

If you are interested in participating, please contact ncned@griffith.edu.au or call on (07) 5678 9283.

NCNED: Neuroimaging Investigations in ME/CFS

This project aims to collect brain magnetic resonance imaging (MRI) data to investigate changes in ME/CFS and Long COVID patients.
 

We are recruiting the following participants:

• ME/CFS group: participants who have received a diagnosis of ME/CFS (where diagnosis was made using the CCC 2003 or ICC 2011 definitions).
• Post-viral syndrome group: participants reporting chronic symptoms following a known viral infection but have not received a diagnosis of ME/CFS nor other medical explanation for the symptoms.
• Long COVID group: participants meeting the World Health Organization definition.
• Control group: participants who report no health concerns.

The inclusion criteria are as follows:

• Australian residents aged 18 to 65 years old
• Non-smoker
• No current diagnosis of serious chronic illness, e.g. autoimmune, cancer, cardiovascular, diabetes or primary psychiatric diseases
• Not pregnant or breastfeeding

This study involves:

• Attending a brain MRI imaging appointment at NCNED.
• Completion of an online questionnaire

Participants will enter the draw to win $75, $100 and $150 Coles e-voucher drawn half-yearly.

To cover the cost of travel, participants will receive a voucher valued at $50.

If you are interested in participating, please contact ncned@griffith.edu.au or call on (07) 5678 9283.