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Surveys

Participate in surveys that are relevant to ME/CFS, related conditions, health care or disability.


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

To register for the survey, sign up here.
Or for a visually quieter page to sign up (less colour, less information, and no moving parts), sign up here.

The surveys will be released monthly, but remain open for a year from May 2021.
All six surveys need to be completed.


Monash University: Measuring movement of people across systems of income support

Each year, hundreds of thousands of Australians are impacted by temporary or permanent physical and mental health conditions that prevent them from working.
The Cross-Sector Systems Project identified at least ten major income support systems that are accessed by people with work disability. But we don’t know much about how people get different types of income support, or how people change between income supports when they need to. Knowing these things could mean it can be made easier to get the income people need when they can’t work due to their health.

Everyone who completes the survey will go into a prize draw to win one of 100 shopping vouchers worth $50 each.

Survey: 20-30 mins


Community gardening accessibility and inclusion - People living with disability

This survey is intended for people living with disability to reflect on their local community gardens. It has been developed by JFA Purple Orange, a South Australian social profit organisation working to enhance the life chances of people living with disability.
The purpose of this survey is for JFA Purple Orange to get a sense of how much interest there is in the disability community to join community gardens; gain an insight into people’s past experiences with community gardens; and find out about possible barriers to joining a community garden.

JFA Purple Orange is also interested to find out whether there is general support for a new model we are currently piloting in North Brighton. Through this pilot, members of the North Brighton Community Garden are connecting with people living with disability who are not able to visit their local garden in person, but are keen to garden from home and become part of the life of the garden.

We will use your answers to establish overall trends and will not publish any specific information about you.

Survey: 3 mins

JFA Purple Orange would also welcome feedback from existing Community Garden members on disability and inclusion.

Survey
: 3 mins

Closes: 31 March 2021


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.

Survey

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 (kated@utas.edu.au) or Dr Cynthia Honan (cynthia.honana@utas.edu.au), College of Health & Medicine, University of Tasmania.

Survey


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: 14 May, 2021