Open 2025 Australia: a survey to understand the research priorities of those experiencing, treating or caring for someone with ME/CFS and/or long-COVID

[Dolphin]

https://csiro.qualtrics.com/jfe/form/SV_50apVQ5MHXTReBw




Are you living with, caring for, or treating someone with Long COVID or Myalgic Encephalitis/Chronic Fatigue Syndrome (ME/CFS)?
We want to hear from you!
The Australian E-Health Research Centre (AEHRC) and Monash University have partnered with Emerge Australia to conduct a study seeking to understand the research priorities of people living with, caring for, or treating someone with Long COVID or ME/CFS. We also want to understand the major challenges they currently face in accessing quality care.
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The AEHRC, Monash University and Emerge Australia are currently recruiting participants aged 18 years or older to participate in an online survey which is expected to take around 15 minutes to complete. Participants will also have the option of participating in a further interview, should they choose, expected to take around 30 minutes. The interview can be undertaken over multiple sessions is needed or via email response.
Participation is voluntary and you do not have to take part if you don't want to. You can choose to participate in only the survey if you wish.
For additional information about the project please click the link below to view the Participant Information Sheet and access the survey.
Access the information sheet and survey here
Australian e-Health
CSIRO Research Centre
MONASH University
emerge
australia
Contact Person:
Dr Alana Delaforce, Australian E-Health Research Centre, alana.delaforce@csiro.au 296 Herston Road, Herston, Qld, 4029 P: 07 3253 3647
Survey and Interview flyer_v3_2024.02.12

https://twitter.com/user/status/1900013458441019437

 

[Utsikt]

In the symptom section, you can only pick categories. One is ‘general’ and includes fatigue, weakness, post-exercise malaise, rash, hair loss, and pain.

 

[Yann04]

In the symptom section, you can only pick categories. One is ‘general’ and includes fatigue, weakness, post-exercise malaise, rash, hair loss, and pain.

I understand them not wanting to make a category for every symptom given some pwME have hundreds.

But I really question how they treated PEM there (I mean it is literally the defining symptom of ME/CFS) and the “exercise malaise”. I thought EMERGE was supposed to be an informed charity?

 

[Utsikt]

I understand them not wanting to make a category for every symptom given some pwME have hundreds.

But I really question how they treated PEM there (I mean it is literally the defining symptom of ME/CFS) and the “exercise malaise”. I thought EMERGE was supposed ot be an informed charity?

Yeah, it really should have been exertion.

And PEM warrants its own category.