marisa 💜 (@lcwithme) header
marisa 💜 (@lcwithme) profile picture

marisa 💜

@lcwithme

24. Creator, Dancer, Artist. #LongCovid since Jan 2022

longcovidmoonshot.com/
Joined April 2023
  • Tweets800
  • Following352
  • Followers1.1K
My #LongCovid billboard is now up & running!!😆 So proud of myself! It’s located in Santa Clara, CA on highway 101 & is on east bound traffic (left side of road) for anyone who’s nearby & wants to see it. So far it has over 17k impressions🙏 1/
Image from marisa 💜 (@lcwithme)
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🚨Been having low BP off & on for the past week & have felt extremely faint, lightheaded, difficulty sleeping, extreme fatigue. List goes on. I did restart Methylene Blue on June 7 so not sure if that’s the cause. Or maybe a bad POTS attack? Any ideas? #longcovid #mecfs 1/2
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I plan on going to the ER if my symptoms persist. Just not quite sure what they can or will do since many doctors are so unfamiliar with me Long Covid & MECFS. Does anyone have suggestions on what to bring to with me to better describe PEM & ME? 2/2
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marisa 💜 retweeted
PolyBio (@polybioRF) profile picture
PolyBio
@polybioRFMay 8
It’s great to see the PolyBio-supported Long COVID tissue bank and LIINC collaborative featured in Men’s Health this week! Collaborating with Dr. Michael Peluso has driven forward PolyBio’s work and the Long COVID field at large. Check out the article 👇🏻 menshealth.com/health/a71130…
Image from PolyBio (@polybioRF)
Image from PolyBio (@polybioRF)
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marisa 💜 retweeted
charlos (@loscharlos) profile picture
charlos@loscharlosMay 6
"The third misconception is that people don't get #LongCovid anymore... we still see plenty of people who develop long COVID after their second, third, fourth, fifth, episode of COVID." — @MichaelPelusoMD menshealth.com/health/a71130…
Millions of People Live With Long COVID. This Researcher Is on a Mission to Find a Cure.

Millions of People Live With Long COVID. This Researcher Is on a Mission to Find a Cure.

Six years ago, Dr. Michael Peluso and his team launched a first-of-its-kind long COVID tissue bank. They’ve been working to understand the disease ever since.

menshealth.com
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This was not the life I imagined for myself. I just know this wasn’t supposed to happen to me. To us. We deserve better. We deserve approved treatments. #mecfs #longcovid #grief
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A healthy person has a thousand dreams. A sick person only has one.
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Valtrex is just making me feel so much worse & decline drastically. Can anyone share their experience please if they have taken it & if so for how long? #MECFS #LongCovid
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marisa 💜 retweeted
Pintu (@Pintuu0) profile picture
Pintu
@Pintuu0Mar 2
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marisa 💜 retweeted
charlos (@loscharlos) profile picture
charlos@loscharlosFeb 21
“She contracted her third case of COVID-19 in the spring of 2025. Since then, she has been house-bound due to severe fatigue and heart issues related to the infection. #LongCovid has not disappeared. People continue to develop the condition after new COVID infections.” — @WHO
WHO/Europe (@WHO_Europe) profile pictureWHO/Europe
@WHO_EuropeFeb 20
Long COVID hasn’t disappeared. People continue to develop it after new infections—yet the myth that it’s “over” still persists. Bára’s story shows the reality: after her 3rd COVID‑19 infection in 2025, she became house‑bound with severe fatigue and heart issues.
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Truth is I’m still disabled, I’m still not recovered, and I’m still living a nightmare four years later after getting a mild covid infection that drastically changed my life. #longcovidawareness #thisneedschange
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It’s very hard to accept this reality even after 4 years. It’s just all happened too soon, too quick. And before I knew it, my life was never the same again. #grief #loss #mecfs #longcovid #chronicillness
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marisa 💜 retweeted
Juul (@tiredjuul) profile picture
Juul@tiredjuulFeb 19
Ally who has been under treatment for 34 at the Spero clinic is writing for the first time again!
Image from Juul (@tiredjuul)
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1. People are surprised when they realise the things I say about my disabilities and how I live my life are true Yes, I do live in my bed Yes, I am in pain 24/7 Yes, I never wake up refreshed Yes, ANYTHING I do causes PEM/PENE Yes, I wake up and go to sleep with a headache
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Who would know that a ME/CFS & Long Covid specialist would look at me crazy when I told them I experience paralysis. Say that’s too big of a word & then describe them as “neurological episodes”.🙃 #mecfs #longcovid #medicalgaslighting 1/3
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They asked me to explain to what that means. I literally said I can’t move any parts or feel my body when that happens. They went on to say that when they think of paralysis they think of ppl w/ Bell’s palsy or are Paraplegic. 2/3
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Not only did I not feel heard or seen but I didn’t think that someone with over 2 decades of experience wouldn’t know that severe/very severe or bedridden patients with ME/CFS can experience that. Has anyone else had a similar experience? 3/3
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marisa 💜 retweeted
PolyBio (@polybioRF) profile picture
PolyBio
@polybioRF23 Dec 2025
A key contribution to the field this year by Dr. Amy Proal, PolyBio President & CEO, was her LA Times Op-Ed—a call-to-arms to both government agencies and private organizations to support Long Covid clinical trials. latimes.com/opinion/story/20… #polybio2026countdown
Image from PolyBio (@polybioRF)
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Sometimes you just can't hold the tears even if you know the price to pay after... #MECFS #LongCovid
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