iiinova — where your digital self keeps evolving

Margaret Sonnemann @auroraaus.bsky.social · 28/08/2025

At the end of the survey, please tell us which of the 3 surveys about daily life you prefer. Their names are at the top of each section. Many members in the Long Covid community have collaborated with the researchers, and your participation is greatly appreciated. 4/5

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Margaret Sonnemann @auroraaus.bsky.social · 28/08/2025

This will help provide better care for all of us. It will help to document symptoms like PEM, which are missed in most scales, and also add some of the sensory experiences like noise and light sensitivity, that came for many with the Long Covid. 3/5

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Margaret Sonnemann @auroraaus.bsky.social · 28/08/2025

This is part of the preparation for measuring outcomes for upcoming large clinical trials in Australia for LC treatments. By participating in this survey, and encouraging people you know WITHOUT Long Covid to complete it, you will be helping to develop LC specific assessment tools in Australia. 2/5

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Margaret Sonnemann @auroraaus.bsky.social · 28/08/2025

SURVEY for: Australians with (or without) Long Covid Deakin Uni is conducting a survey for Aus LC sufferers. Also need those not affected to answer (control group). It has 3 sections and can be completed a bit at a time. 1/5

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Margaret Sonnemann @auroraaus.bsky.social · 18/03/2025

lol. No. I got sucked into Substack and Threads in the interim and haven’t been here. Now I need to spend time trying to figure out how to navigate this platform.

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Margaret Sonnemann @auroraaus.bsky.social · 18/03/2025

Thanks. It seems like a few pages with no posts. I’m not sure if I should start sharing my Aurora posts here but I’m giving it thought.

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Margaret Sonnemann @auroraaus.bsky.social · 29/12/2024

I’m hearing some “farside” rumours…

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Margaret Sonnemann @auroraaus.bsky.social · 29/12/2024

Same. I use the same opening word all the time and it was bound to come around occasionally! I think I read it was the most common opening word?

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Margaret Sonnemann @auroraaus.bsky.social · 27/12/2024

I think I have a lame presence on almost every social media platform. No idea which to focus on. I do have to update my Facebook group nightly, but where is the best place for sciency aurora stuff + long Covid advocacy?

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Margaret Sonnemann @auroraaus.bsky.social · 04/11/2023

Is emerge on bluesky? Not finding.

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Margaret Sonnemann @auroraaus.bsky.social · 30/10/2023

Yes I thought it was an interesting recommendation since she doesn’t have pain issues at all. But I guess it’s just a general anti-inflammatory as well? 🤷🏼‍♀️

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Margaret Sonnemann @auroraaus.bsky.social · 28/10/2023

LC and ME/CFS peeps. My LC granddaughter was just told to get on PEA by her paediatrician. Does anyone have any experience with this? Thanks.

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Margaret Sonnemann @auroraaus.bsky.social · 28/10/2023

I’m guessing they don’t want anyone in Australia…

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Margaret Sonnemann @auroraaus.bsky.social · 19/10/2023

My 14-year-old granddaughter, long Covid since March 2022 but not on social media. LDN has helped me but Pediatrician won’t prescribe it, only Fluoxetine which none of us feel happy about. Her personality is not depressed or anxious but I can see how we could get there… Maybe going to try NAC.

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Margaret Sonnemann @auroraaus.bsky.social · 12/10/2023

Completely infuriating. I have long COVID friends participating. Queuing to participate because it’s a local study!

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Margaret Sonnemann @auroraaus.bsky.social · 11/10/2023

Thanks. It somehow helps to know there are caring, understanding people like you out there.

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Margaret Sonnemann @auroraaus.bsky.social · 11/10/2023

SO glad you are here. Grateful for your voice. I really feel like I have an advocate.

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Margaret Sonnemann @auroraaus.bsky.social · 11/10/2023

14 yo granddaughter 2y LC. No treatment available till she’s 18. Australia.

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Margaret Sonnemann @auroraaus.bsky.social · 11/10/2023

I’m not going to participate. I already know what getting on an exercise bike will do.Australia-wide studies: kind of disturbing?

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Margaret Sonnemann @auroraaus.bsky.social · 11/10/2023

Multiple hugs to Med/LC activist people. LC 8/22; worse after bout 2 (mild cases), 12/22. ME/CFS 1984-1999. An old enemy returned: I know what it’s like with no support & only misinformation. Being super proactive. Prefer to not die like this. 😉 5 vax/antivirals 2x. LDN. 14yo grandgirl LC 2 yrs

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Margaret Sonnemann @auroraaus.bsky.social · 11/10/2023

14 yo granddaughter, LC 2yrs. No more swimming,archery, fencing,drama,violin, harp. Vanishing childhood. Unable to get even mild medications like LDN: because nonexistent studies. 4 more years to go before she gets to try anything. I have LC (some relief with LDN) and am gutted for her.

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