marisa 💜 @lcwithme

23. Creator, Dancer, Artist. #LongCovid since Jan 2022 longcovidmoonshot.com Joined April 2023

Tweets

762
Followers

1K
Following

356
Likes

2K

Meighan Stone | @meighanstone.bsky.social @meighanstone

4 days ago

The 400 million people with #LongCOVID globally got little notice at #UNGA this week. Thanks @PandemicAction for an accessible event & opportunity to ask @WHO @gatesfoundation @WorldBank @wellcometrust @EIB @minsaude leaders a question on urgently needed tests & treatments: 1/x

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Putrino Lab @PutrinoLab

4 days ago

the world is upside down, the appropriate response to deafening silence in the wake of mass-disabling of our children is to scream at the top of your lungs. That's what Violet was doing on Tuesday. That's not anxiety, that's humanity. /end

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Rename MECFS @renamemecfs

3 days ago

Guys this is my GofundMe, I am in the deepest trouble. 28 yo bedridden and non verbal. If you could help means a lot. Thank you! Much love!❤️ gofund.me/a8d042ec9

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marisa 💜 @lcwithme

4 days ago

My bf doesn’t feel comfortable advocating or standing up to my family to help them realize I’ve seriously declined again. No one is taking me serious. I feel so alone :(

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marisa 💜 @lcwithme

4 days ago

Is it normal to cry & grieve your prior healthy life often or pretty much everyday since you’ve gotten disabled with #LongCovid & #MECFS? Let me know how you cope or if you’ve done the same🥺💔

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marisa 💜 @lcwithme

4 days ago

Is it possible for Covid to not show up a PCR test? I had a cold at the beginning of the month did rapids & PCR. All negative. Now I’m experiencing rapid decline, bedridden currently, & experiencing full body paralysis. #MECFS #LongCovid

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Sawyer @SawyerBlatz

3 weeks ago

Whenever I'm feeling down about the state of #LongCovid research (which is often), I re-read this quote from @MichaelPelusoMD 💙

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Sassy @NekomataSassy

3 weeks ago

Eine Weile davor hatte sie eine Covid Reinfektion. Nehmt Covid bitte ernst.

Sassy @NekomataSassy

3 weeks ago

Eine Weile davor hatte sie eine Covid Reinfektion. Nehmt Covid bitte ernst.

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𓆑 @becauseberkeley

3 weeks ago

I have a rare medical condition. The su*cide rate of people with this condition is ~24%. People are starting to get it w/ covid. If I was given the option to avoid getting it by wearing a mask, I would've glued an N95 to my face, or worn a respirator. Mask, for chrissakes.

CyFi @CyFi10

4 weeks ago

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Jack | amatica health @JackHadfield14

3 weeks ago

I think we’d be better off if RECOVER shut down and made their budget a prize for whoever delivers the first treatment for Long COVID at this point.

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Whitney Dafoe @DafoeWhitney

11 months ago

@dysclinic Exercise is a preposterous idea for any ME/CFS patient, mild to extremely severe. Movement is not a bad idea if you are well enough, but not at the cost of crashing or triggering PEM. PEM is what we should all be afraid of, not "lack of movement". We are so deprived of life…

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ME/CFS Science @mecfsskeptic

2 months ago

1) The DecodeME study compared DNA of ca. 15,000 ME/CFS patients and 250,000 controls and found significant differences in 8 regions of our genome. The Manhattan plot below shows the genes and chromosomes involved. Let’s unpack the results 🧵

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eIisa @mildTin

2 months ago

The results from DecodeME are significant because they give scientists a roadmap to uncovering the disease mechanisms behind ME/CFS, and more confidence for funders, regulators and industry partners to get involved.

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Janet Dafoe @JanetDafoe

2 months ago

On severe MECFS day I take a moment of silence to remember the suffering of very severe patients. I remember their caregivers, allies and doctors who care for them. I implore all who don’t believe this disease is real to educate themselves so they can provide appropriate care.

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Ramy2.0 @Ramyisback

2 months ago

I have seen some people hurting, in our feed, mecfs. I myself am struggling. Just to provide some grain of hope, there is a monoclonal trial starting soon in my area I am taking part in. There are treatments being worked on, right now. So please everyone keep the hope up

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Sarah Buckel @sarah_buckel

3 months ago

In tiefster Trauer und Betroffenheit teile ich, Kai (@kai_hrmth), diese Nachricht

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Rename MECFS @renamemecfs

3 months ago

There is a lake from mild to moderate, a sea from moderate to severe, an ocean from severe to very severe, and a universe from very severe to extremely severe. #MECFS

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Diewertje @Diewertje10

3 months ago

The reality of very severe #MECFS : No treatment, no practical help or care, too ill for euthanasia if unable to talk much/at all. Left to slowly starve and dehydrate, without palliative care.