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

Bei Bluesky seit 19 September 2023

Follower: 2.839
Folgt: 1.297
Posts: 1.691
Tage in Ranglisten: 0

Zusammenfassung

Kirstie Sivapalan (@kirsties.bsky.social) ist seit 19 September 2023 auf Bluesky. Das Konto hat 2.839 Follower, folgt 1.297 Konten und hat 1.691 Posts veröffentlicht.

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Merrydholl@maryeilmicdom.bsky.social02.11.2026 12:47
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.social02.11.2026 12:47
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.social02.11.2026 12:00
...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.social02.11.2026 12:00
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.social02.11.2026 11:38
Sigh... The last neuro I saw tried to tag me with FND. They steal a living when they see us.
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