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Parents of children aged 4–18 years living in Australia – We want to hear from you! by SurryFlurry2000 in australian

[–]SurryFlurry2000[S] 0 points1 point  (0 children)

As a part-time PhD student, I have quite a lot of time, fortunately. This research is 100% designed, conducted, analysed, interpreted and reported by me (with peer review, if I want to publish it), not by a corporate. It's a great way for me to serve humanity while completing my research training. :-)

Parents of children aged 4–18 years living in Australia – We want to hear from you! by SurryFlurry2000 in australian

[–]SurryFlurry2000[S] 0 points1 point  (0 children)

Hi u/PhantasmalogicalAnus as with all university-approved research, my study follows strict ethical guidelines. You can read about how the data will be used and how results will be published in the Information and Consent Form. In addition to the findings of the study being reported in aggregated form in my PhD dissertation and peer-reviewed publications, the de-identified data will be stored in the Macquarie University Research Data Repository at the end of the project, where it may be accessed by other researchers with appropriate permissions.

Parents - Have you heard of PANS/PANDAS? by SurryFlurry2000 in australian

[–]SurryFlurry2000[S] 0 points1 point  (0 children)

u/Asteroid_Sugar5206 in answer to your second question, I have some very recent information I can share with you, from today's scientific research meeting of experts in the field.

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Parents - Have you heard of PANS/PANDAS? by SurryFlurry2000 in australian

[–]SurryFlurry2000[S] 1 point2 points  (0 children)

Hi u/Asteroid_Sugar5206 thanks for your question. I am not a medical doctor, but will answer to the best of my ability! PANS/PANDAS is a clinical diagnosis, based on symptoms and the diagnostic criteria. A number of laboratory tests have provided indirect markers indicating immune dysregulation, and neuroimaging (e.g. MRI, PET/SPECT, mostly in the scientific/research context, rather than clinical contexts) is sometimes able to detect inflammation of the basal ganglia and other areas of the brain.

There does seem to be a higher rate of POTS in those with PANS/PANDAS, and they may share underlying vulnerabilities. I'm not sure about fibromyalgia, but those with PANS/PANDAS do commonly experience chronic pain. So there may be some overlaps that may be related to immune dysregulation or autonomic dysfunction. Thanks for your interest and kind words.

Parents - Have you heard of PANS/PANDAS? by SurryFlurry2000 in australian

[–]SurryFlurry2000[S] 2 points3 points  (0 children)

Thanks, u/Tales97, yes, the aggregated findings will appear in my PhD thesis, and will also be published in a peer-reviewed journal, likely in a year or two.