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lavivianaleyva.bsky.social
@lavivianaleyva.bsky.social
Chronic illness. ME (Myalgic Encephalomyelitis) Dysautonomia.

And cats, always cats.
Reposted
“The second you become disabled you cease to be seen as a reliable interpreter of your own life. People will stop believing you.”

MOST people will stop believing you, including people you loved & trusted above all others. It’s absolutely fucking traumatizing. Wear a mask & avoid it if you can
I wish healthy people understood that if you develop a medical condition that doctors don’t understand, you’re gonna be TREATED BADLY BY DOCTORS. And there’s a widely circulating virus that leaves people with incurable medical conditions that doctors don’t understand.
January 30, 2026 at 5:53 AM
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Life is short. Whack someone with your cane today.
January 30, 2026 at 12:53 PM
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39 years of repeating..
"No"
"No, sorry, I can't do that
"No, sorry, I can't do that, because I have #ME
"No, it wouldn't 'do me good', thanks
"No, there's still no treatment for #ME
"No, Drs still aren't medically qualified to treat #pwME
"Yes, #ME can be fatal"
🤦‍♀️😫
January 28, 2026 at 2:33 PM
If the people on Wife Swap were not told to play it up for the cameras, that would mean we were warned of how horrible humanity was in every single episode.

Stoned thoughts as I watch an episode, all cozy on the couch and the tree.
December 30, 2025 at 12:03 AM
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I can't believe I have to say this, but if you have COVID don't go to public gatherings/events.
December 9, 2025 at 10:30 PM
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One of the main ways I see abelism showing up in my life is people will refuse to absorb anything I explain about my disease and then act like any symptoms or things that happen as a result of the disease are character flaws, do other #pwME experience this?
December 8, 2025 at 11:09 PM
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When the gov’t gave you permission to remove your mask & abandon immunocompromised people, it didn’t only harm us

It harmed EVERYONE

They told you that u were better than disabled / immunocompromised ppl & you believed their lie

Health supremacy is a lie

You went along bc you WANT to believe it
April 29, 2025 at 2:08 PM
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living through the rise of fascism lets me know how much of it occurs just because people don’t want to appear alarmist
April 15, 2025 at 5:37 PM
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Best #HandsOff rally sign
April 6, 2025 at 7:05 PM
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Please ignore tired pieces in publications like the Atlantic that are still trying to stigmatize mask wearing.

Wearing a mask to prevent sickness from airborne viruses is a science-informed position, and it has been that way for over 100 years.
April 3, 2025 at 11:16 PM
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Hear, hear. People with #MECFS and #longCOVID are doing much of the hard work of advocacy and education, while trying to live our lives on scant leftover energy. And by living our lives, I'm talking about trying to take a shower, digest a meal, or reading a book without collapsing from fatigue.
An international emergency task force is urgently needed for Severe Long COVID and ME crisis cases. Severe advocates are putting themselves at risk. It’s time for advocacy organizations to step up. bit.ly/42fSrue
April 5, 2025 at 5:46 PM
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“Not only are Very Severe patients in crisis neglected by Long COVID and ME organizations who should be mobilizing to come to their aid, Severe advocates stepping into the breach are put at risk.”
An international emergency task force is urgently needed for Severe Long COVID and ME crisis cases. Severe advocates are putting themselves at risk. It’s time for advocacy organizations to step up. bit.ly/42fSrue
April 5, 2025 at 4:06 PM
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Not all “Hands Off” events were in-person. I attended two virtual events centering chronically ill and disabled people for @motherjones.com, who are terrified about attacks to Medicaid, Section 504, research funding, education and more. www.motherjones.com/politics/202...
For some disabled protestors, “Hands Off” went virtual
"We know we have to teach everyone how to include us."
www.motherjones.com
April 5, 2025 at 9:06 PM
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“Our collective spoons are our greatest asset!” We each are limited but together we have power👇. Do what you can, rest, pace, and stay focused, friends.

Y’all are awesome! Keep it up!👏👏👏
/end
March 28, 2025 at 4:22 PM
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Rule of thumb for shooting at a protest, capture the crowd, not the people.
April 5, 2025 at 7:19 PM
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Covid killed old & sick as well as young & healthy. A virus doesn't give a fuck. It kills with impunity. I was lucky it didn't kill me when I got hit with the Rona early on. Two weeks in bed. I had a Pfizer vaccine, thank my lucky stars. Vaccines save lives. Fuck RFKJ.
RFK Jr. also falsely claimed that “healthy Americans were not dying of Covid... It was a disease that attacked the sick, as with all infectious diseases.”"

1) Well, that's definitely not true.
2) Pretending it were, that would've made it okay that they'd died?

This is just monstrous.
March 30, 2025 at 3:30 PM
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Twenty-three years ago today.
Jerome Burne and the obligatory appearance of Wessely.

#myalgicencephalomyelitis #cfsme #myalgice #mecfs

www.theguardian.com/society/2002...
Battle fatigue
For ME sufferers, the bitter feud between the scientists as to whether it is a genuine physical complaint, or more a disease of the mind, has only added to the dispiriting nature of their ailment. Aft...
www.theguardian.com
March 30, 2025 at 4:29 PM
I really don’t advice opening a Churu with your teeth.
March 14, 2025 at 9:07 PM
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Some people need to stay in their own lanes. They're allowed to have biased and uninformed opinions, but when they air those publicly behind an aura of expertise, they become dangerous. There's too much evidence of the biological basis of #ME-CFS and #longCOVID. Willful ignorance is unforgivable.
2/
Extract from wild psychological speculation in the Irish Independent

"Dr Suzanne O’Sullivan examines the rise in recorded cases of autism, ADHD and long Covid, and how labels can bring new problems"

Paywall:
www.independent.ie/entertainmen...

#LongCovid #PASC
March 14, 2025 at 6:17 PM
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Mike spotted this before the rest of us. 🫡

Publications from 2025 are shared more on Bluesky than on X/Twitter.
About to talk to medical affairs colleagues, with the news that Bluesky is carrying more posts about new journal publications than X #bluesky #altmetrics #x #xparrot
March 13, 2025 at 3:51 PM
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When I’m fully disassociated and I put on my active listening face
March 13, 2025 at 7:15 AM
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Decolonizing mental health requires being open to understanding that spiritual forces require constant and careful attention.

crushingcolonialism.org/indigenous-s...

#indigisky #disability #mentalhealth #spirituality
Indigenous Spirituality: Resilience in Decolonizing Mental Health
As a psychologist and researcher working across Indian country for the past 15 years, notwithstanding significant historical trauma and ongoing systemic challenges, Indigenous people in the so-called ...
crushingcolonialism.org
March 7, 2025 at 11:16 PM
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Artist: ChronicallyMeh on Insta
#chronicillness #chronicallyill #autoimmune
March 7, 2025 at 11:23 PM
Even when I try to go on other social media to distract myself, I keep reading about “healthy”young people, that have blood clots, or strokes, or a kidney disease, a vascular condition, a new cancer diagnosis… and their doctors are perplexed and can’t explain it…
*screams*
March 7, 2025 at 2:04 AM