marisa 💜 @lcwithme

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

Tweets

751
Followers

1K
Following

349
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2K

Whitney Dafoe @DafoeWhitney

10 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

a month 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

a month 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

a month 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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Amy @alexandrite113

a month ago

Fr fr #severeME

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Amy @alexandrite113

2 months ago

This is getting a lot of views, so on the off chance someone feels like it … gofund.me/69973324

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Sarah Buckel @sarah_buckel

2 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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Natasha @curemetogether

3 months ago

Rooting for Ally!! When I met Ally she was moderate and then she got a stomach infection and suddenly became very severe. Shes been like this for a year, maybe even worse off then Dianna was. She’s on a feeding tube. One of the worst Long Covid cases I’ve seen in America. Pray…

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Ror Preston @RorPreston

4 months ago

We need medics, researchers & caregivers to recognise PEM crashes for the very serious events they are 67% of ME patients reported experiencing crashes that have *never* resolved. Thank you to @wecrunchme's latest contributor @unreal_arthur for this visual 🙏 #MECFS #PEM

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Natasha @curemetogether

4 months ago

Missing out on things is obviously the worst part about being sick.

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Ror Preston @RorPreston

4 months ago

Estimates across multiple studies suggest c. 40-60% of Long COVID patients meet the ME diagnostic criteria 🔬 Imo this means it's key to screen for ME (PEM+) in clinical trials, and recognize this as a distinct cohort Both ME & non-ME LC patients will benefit!

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marisa 💜 @lcwithme

4 months ago

My life is over. I’m so empty inside💔

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holdingonME @JoannaWo4

4 months ago

ME/CFS is not rare. It’s ignored. Every May, we raise our voices for the millions who can’t. From 2020 to 2025, nothing has changed fast enough. We’re still here. Still missing. Still fighting. #MillionsMissing #MECFS #InvisibleIllness #MEAwarenessMonth Repost it for awareness !!

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charlos @loscharlos

4 months ago

“Someone with #LongCovid will feel overexerted just from sitting. ‘What we saw in people with LC is they were burning.. 30% more energy than someone we would expect.. we were asking them to sit very still &.. their bodies were working really, really hard to maintain that.’”

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Ror Preston @RorPreston

4 months ago

Our analysis suggests Long COVID, inc. COVID-triggered ME/CFS, now ranks among the most burdensome diseases in the US — ahead of stroke, diabetes & COPD It’s a rough estimate, but the message is clear: this crisis can’t be ignored. We need to scale research, funding & support

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Sissel Sunde 🇳🇴 @Sissel777

a year ago

"Victoria Augustine falls ill from everyday activities like taking a shower or family visits: “I end up bedridden with a feverish feeling and body aches" #MECFS Great Norwegian article by @forskningno translated to English: sciencenorway.no/me/victoria-au…