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Kirstie Sivapalan

@kirsties.bsky.social did:plc:dvnjcf2hkqqbs2ccafqyq53q

UK #pwME #pwLC #MECFS #LongCovid #PEM (post-exertional malaise) as well as #Politics and other related chat. I use lists to manage my chats here. Feel free to use them or ask to be added https://writingandme.com/ https://open.substack.com/pub/kirstiesi

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Kirstie Sivapalan (@kirsties.bsky.social) es un usuario de Bluesky que se unió el 19 septiembre 2023. Tiene 2.839 seguidores, sigue a 1.297 cuentas y ha publicado 1.691 posts.

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  • Merrydholl@maryeilmicdom.bsky.social

    I went to the appointment to rule out or in Parkinson's. Once that had been done, best they say nothing else. I'd prefer a 'don't know' to patent nonsense. I still have the tremor; it's just blended in to everything else.

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  • Merrydholl@maryeilmicdom.bsky.social

    Given we spend 22+ hours a day in or in bed, the notion that we don't have a single specialist doctor, never mind a full-scale treatment pathway, available to us it just incredible. 🫂💜🫂

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  • Merrydholl@maryeilmicdom.bsky.social

    ...only so many things you can fight at once. Previous experience has taught me it is *impossible* to correct inaccuracies in consultant letters.

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  • Merrydholl@maryeilmicdom.bsky.social

    I did. The letter spoke of 'functional entrainment' (re a tremor after COVID vaxes) but stopped short of the label. And so much factual inaccuracy despite providing him with a written résumé of diagnoses, symptoms and reason for referral. I did get an MRI though so I decided just to leave it be...

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  • Merrydholl@maryeilmicdom.bsky.social

    Sigh... The last neuro I saw tried to tag me with FND. They steal a living when they see us.

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