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Kirstie Sivapalan

@kirsties@mastodon.world
mastodon 4.7.3
  • Open on mastodon.world

#pwME #writing

Writing about life with M.E.

Interested in #politics #socent #UBI, #DoughnutEconomics, #EthicalLiving, #EcoLiving, #poetry, #PostViral conditions, #astrology #DisabilityTechnology #ComplementaryTherapy and #EnergyMedicine

250 Followers
286 Following
13 Posts
Joined November 04, 2022
Weekly blog about M.E, politics and social angst:
https://writingandme.com/2022/09/30/mini-roll-m-e-life-politics-and-social-angst/
How I manage my time/energy with M.E.:
https://writingandme.com/2022/09/22/dear-m-e-ally-its-about-time/
Living with M.E. Links & Resources:
https://writingandme.com/living-with-m-e/
DEAL profile:
https://doughnuteconomics.org/members/17105
Open post
Kirstie Sivapalan @kirsties@mastodon.world
· 38mo ago

Had a useful discussion with friends at the weekend on FB who don't have LC/ME about challenging underlying/unconscious ableist assumptions. As I seem to have got their attention, I am asking them to reflect to uncover these basic truths:

#pwME #pwLC #LongCovid #MECFS #ChronicIllness #ChallengingAbleism #Friendship #CommunitySupport

mastodon.world

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Open post
Kirstie Sivapalan @kirsties@mastodon.world
· 37mo ago

New blog post/poem-prose/lament:

Ignoring Long Covid will be an global act of self-harm

Fair warning: Not funny, nor fun nor uplifting, but does contain a glimmer of hope. May be triggering

https://writingandme.com/2023/09/13/my-historical-record/

#pwME #pwLC #LongCovid #MECFS

writingandme.com
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Open post
Kirstie Sivapalan @kirsties@mastodon.world
· 37mo ago

Can I ask a favour?
IF you want to help people with M.E, Long Covid & other conditions that make them vulnerable to infection, what would really make a difference is if you could *please* wear a mask in any healthcare settings.
Even if doesn't seem necessary for you, or people in your life, it's essential for others around you who you might not know or who you might interact with.
By doing this small thing you show you support vulnerable people & you will model this behaviour for others 🙏

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Open post
Kirstie Sivapalan @kirsties@mastodon.world
· 37mo ago

This started as a mini-roll post and ended up as a call to action for #MEAllies. Based on FB interactions with non pwME friends this week.

Why #pwME #pwLC can't do this on our own. Why need help, helpfully.

5-8 min read

https://writingandme.com/2023/09/01/sink-or-swim-how-to-help-people-with-m-e-helpfully/

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Open post
Kirstie Sivapalan @kirsties@mastodon.world
· 39mo ago

I am boycotting The Guardian until the latest poorly written utterly skewed article about #pwME #pwLC is either retracted or amended. I have had enough and this was the last straw.  No longer subscribing or supporting nor will I share anything they do.

Their track record has been the most appalling of the mainstream papers. Not good enough for a so called progressive publication to behave this way and get away with shoddy work

If you want to join in please use hashtag

#MEBoycottTheGuardian

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Open post
Kirstie Sivapalan @kirsties@mastodon.world
· 47mo ago
Replying to
@rachelcoldicutt@mastodon.social You can edit a toot?! That's me sold! 😁
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Open post
Kirstie Sivapalan @kirsties@mastodon.world
· 38mo ago

Full article from The Times

NHS has been told to stop dismissing and stigmatising patients with myalgic encephalomyelitis.

DHSC plan for ME open for consultation

https://archive.li/2023.08.09-064549/https://www.thetimes.co.uk/article/me-chronic-fatigue-syndrome-nhs-funding-research-disorder-uk-2023-smr6qbbl7

archive.li
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Open post
Kirstie Sivapalan @kirsties@mastodon.world
· 36mo ago

BPS/FND lot have been at it again briefing useful idiot churnalists eager to cut and paste some press releases to minimise LC and M.E.

Have had more than enough of this, so have written a robust response to anyone who comes up with this nonsense. Will be using this as a time saver in the future.

https://writingandme.com/2023/09/25/to-all-fnd-bps-opinion-piece-generators/

#pwME #pwLC #medicalgaslighting #MECFS

To all FND/BPS opinion piece generators
Writing and M.E.

To all FND/BPS opinion piece generators

Please go away. Leave people with M.E. alone. We see you now and nearly every other rational, responsible scientist sees you too.  You are abusive, ego-driven little children who cannot deal w…

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Open post
Kirstie Sivapalan @kirsties@mastodon.world
· 37mo ago

Why #pwME #pwLC need help to be heard & create the change we need. And why it's definitely not lack of will or skill.

https://writingandme.com/2023/09/01/sink-or-swim-how-to-help-people-with-m-e-helpfully/

Sink or Swim: How to help people with M.E, helpfully.
Writing and M.E.

Sink or Swim: How to help people with M.E, helpfully.

Help. What is being helpful? I contemplated this after issuing another plea to people for help with advocacy who do not live with energy limiting/exertion punishing conditions such as M.E. and now …

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Open post
Kirstie Sivapalan @kirsties@mastodon.world
· 38mo ago

Brain fog down, everything else up = new and very sarcastic mini-roll post to channel my pain.
Featuring the usual shoehorned analogies between living with M.E. and inept government.

https://writingandme.com/2023/08/16/mini-roll-pem-plans-and-the-cut-and-paste-press/

#pwME #pwLC #MyalgicEncephalomyelitis #LongCovid #MECFS #Politics #UKPolitics #Community

Mini-Roll: PEM, plans and the cut-and-paste Press
Writing and M.E.

Mini-Roll: PEM, plans and the cut-and-paste Press

I really wanted to write a wee mini-roll post today. For a while now I’ve been thrashing about in the murky seas of Twitter, now the unenigmatic “X”, as well as the pristine, sani…

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Open post
Kirstie Sivapalan @kirsties@mastodon.world
· 47mo ago
Replying to
@chrisabides@infosec.exchange @SturdyAlex@toot.community I saw you were looking for guidance on CWs. Hope this helps
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Open post
Kirstie Sivapalan @kirsties@mastodon.world
· 37mo ago

Insomnia + chilling statements about being immunocompromised = new poem!

👇

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Open post
Kirstie Sivapalan @kirsties@mastodon.world
· 38mo ago

Has this been shared on here yet? If not, boost boost boost!

This is the definitive journalistic article from one of our best #pwME #pwLC allies covering what fatigue doesn't even begin to cover what is going on.

"[PEM is] the annihilation of possibility"

Free to read here:

https://archive.li/yFpFc

mastodon.world

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