Participate in surveys that are relevant to ME/CFS, related conditions, health care or disability.
- ANCHOR Study: Quality of Life, social, educational and economic impacts of ME/CFS
- Chronic illness survey adventure
- Researchers from University of SA and Flinders University are looking to understand consumer healthcare needs
- A survey for chronically ill 16-to-25-year-old Australians
- Survey study: Impact of fatigue in CFS
- Chronic illness symptom study
The ANCHOR study is an important opportunity to increase the understanding of quality of life, social, educational and economic impacts of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on people living with the condition and their carers.
The ANCHOR Study has been funded by the Medical Research Future Fund (MRFF). The study is investigating the quality of life, social, educational and economic impacts of ME/CFS on people living with the condition and their carers. This project is a collaboration of researchers from the University of Tasmania, Deakin University, the University of Melbourne and Emerge Australia. The survey has been developed in consultation with people living with ME/CFS and carers, to ensure important impacts of the condition will be investigated.
Participation in the research is voluntary and confidential.
Who: The researchers want to hear from people living with ME/CFS and carers. They want to understand the impacts of ME/CFS from both perspectives.
What: The researchers are asking people to complete an online survey. If you prefer, the researchers will post the forms to you.
The survey includes questions on ME/CFS and general health, quality of life, impacts on your education, employment, income and social relationships. The survey also includes a cost diary. You will be asked about how much you spend because of ME/CFS, including on any medical and health practitioner appointments, medications, supplements, investigations (e.g. blood tests), specialised equipment, hospitalisations, travel and other costs related to your ME/CFS. They will also ask people for permission to link their survey and cost diary to their Medicare/PBS data. This will allow them to accurately estimate costs to government related to medical services and pharmaceutical use.
Please note that all parts of the survey are voluntary and confidential.
The survey will take approximately 45 minutes to complete, and the time for the cost diary will vary depending on how many resources you use.
Both the survey and cost diary can be saved and completed in multiple sittings.
If you would like to ask questions or receive a paper copy, please contact Dr Barbara de Graaff at Barbara.email@example.com or 03 6226 4262.
Chronic illness survey adventure
"The Chronic Illness Survey Adventure (Symptom Cluster Characterization in Complex Chronic Disease) is a survey-based study to probe more deeply into ME/CFS, long COVID, POTS, hEDS, and MCAS. Our survey began by examining the symptoms listed in sets of diagnostic criteria for each illness. Then, we incorporated validated surveys for complex symptoms such as pain or fatigue. But that was just the beginning.
Next, we recruited clinical partners to help recruit participants and validate their own patients’ diagnoses, and partners with lived experience of each of these diseases. Together, we gathered patient-reported symptoms not present in any set of criteria.
Now, we need your help to gather the richest dataset on complex chronic disease ever created. Let’s discover more about what we have in common and more about what makes us unique. Join us on this year-long adventure!"
Survey One: up to 30 mins
Surveys Two - Six: 15-20 mins
The surveys will be released monthly, but remain open for a year from May 2021.
All six surveys need to be completed.
Researchers from University of SA and Flinders University are looking to understand consumer healthcare needs
Your support in this study will help us to understand your healthcare 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.
Survey: 20 mins
A survey for chronically ill 16-to-25-year-old Australians
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.
To learn more about this project and to be considered for future research with the same team, go to https://upliftproject.com.au/.
Survey study: Impact of fatigue in CFS
The University of Tasmania is overseeing a study assessing the impact of fatigue in people with Chronic Fatigue Syndrome.
We are looking for volunteers, aged between 18 and 65 years, with Chronic Fatigue Syndrome (CFS) or healthy individuals without CFS, to take part in a study investigating fatigue and its impact on everyday functioning. Participation in the study is entirely voluntary.
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.
This study has been approved by the Tasmanian Health and Medical Human Research Ethics Committee. For further information, contact: Ms Kate Donnelly (firstname.lastname@example.org) or Dr Cynthia Honan (email@example.com), College of Health & Medicine, University of Tasmania.
Chronic illness symptom study
Principal Investigators: Karl Conroy and Leonard A Jason, PhD
Center for Community Research, DePaul University
What is the purpose of this research?
We are asking you to be in a research study because we are trying to learn more about fatigue in multiple sclerosis, lupus, cancer, myalgic encephalomyelitis, chronic fatigue syndrome, post-polio syndrome, HIV/AIDS, COVID-19, Gulf War Illness due to the first Gulf War of 1990-1991 or illness due to the second Gulf War of 2003-2011. We hope to include about 15,000 people in this research study.
Why are you being asked to be in the research?
You are invited to participate in this study because you are a person with a diagnosis of either multiple sclerosis, lupus, cancer, myalgic encephalomyelitis, chronic fatigue syndrome, post-polio syndrome, HIV/AIDS, COVID-19, Gulf War Illness due to the first Gulf War of 1990-1991 or illness due to the second Gulf War of 2003-2011. You must be age 18 or older to be in this study. This study is not approved for the enrollment of people under the age of 18.
What is involved in being in the research study?
If you agree to be in this study, you will be asked to complete a series of questions related to health symptoms you may be experiencing or have experienced in the past as well as questions related to your medical, occupational, and social history. You will be asked to complete this survey online.
Survey: 45 - 60 mins
Last edited: 20 August, 2021