I AM MADELINE12 Jul 2023

Primer for Parents & caregivers of PVS children, esp those with myalgic encephalomyelitis

This episode I try to pull my thoughts together to speak to parents and caregivers of person's with post viral diseases especially myalgic encephalomyelitis. This was inspired by Andrea Haefele of www.mombehindthelabel.com who very kindly agreed to share what's happening to me with her online community. Her focus(if my beleaguered brain is understanding correctly) is as a parent with a autistic child who also has developmental and physical health challenges, and so does advocacy in that space as a mum, inspired me to make this episode. I was planning, for quite some time, to have this conversation directly to caregivers and parents, but I guess my tired brain kept forgetting, so this seems like the perfect time Some links I talk about in the episode: Article I wrote for the disability Alliance of BC https://disabilityalliancebc.org/article-im-fighting-to-live-but/ Gender bias in research https://pubmed.ncbi.nlm.nih.gov/33232627/ This is the UK journalist whose child died of ME after being sent home by the doctors who told her she was fine https://www.thetimes.co.uk/article/my-daughter-couldnt-be-saved-but-theres-hope-for-other-me-patients-j7lbgg68k There are a lot of longcovid/ME articles out there outside of canada, but perhaps this ATLANTIC article sums things up https://www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/ And since I run out of the GoFundMe money that's been keeping me alive in a few weeks, here's that link https://gofund.me/cff39173 Since this episode is to parents, I thought a childhood picture might be appropriate. This is long before I became health obstacled with post viral diseases at age 12

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Episoder(165)

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medical instruction REST

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