Share this page!

Enter URL or ID to Unroll

You can paste full URL like: https://x.com/threadreaderapp/status/1644127596119195649
or just the ID like: 1644127596119195649

How to get URL link on X (Twitter) App

  1. On the Twitter thread, click on or icon on the bottom
  2. Click again on or Share Via icon
  3. Click on Copy Link to Tweet
  4. Paste it above and click "Unroll Thread"!
  5. More info at Twitter Help
@Riemerville Profile picture
@Riemerville
@Riemerville
Clean air enthusiast… probably some typos #CleanAirInSchools #MEMafia #LongCovid
Mar 15 • 7 tweets • 2 min read
Supporting someone with Long Covid or chronic illness isn’t about fixing them.

it’s about learning how to stay present in a life that suddenly has a lot more limits.

Below are a few ways to actually support us👇
1/7
 #LongCovidAwareness Image First: believe them.

even when they “look fine.”
even when symptoms sound strange or inconsistent.

invisible illness means people are constantly doubted

being believed is one of the most powerful kinds of support

2/7
 #LongCovidAwareness #LongCovidKids #LongCovidAwarenessMonth
May 18, 2025 • 5 tweets • 1 min read
Three years ago, I was having a blast in Louisville for my son’s national archery tournament.
We were vaccinated & trusted the guidance. It was the first weekend I started unmasking though still masked in crowded spaces, & always had one in my purse. 🧵1/3

#LongCovid #ME Image That weekend, I caught Covid & never fully recovered.

Since then, I’ve struggled w/ debilitating fatigue, Dysautonomia, breathlessness, POTS, MCAS, brain fog sleep issues, joint and muscle pain, light & sound sensitivities & more. It’s been a daily battle 2/3
Sep 25, 2024 • 8 tweets • 3 min read
Thank you, @LisaAMcCorkell for your amazing presentation on the next steps forward. I really hope the NIH takes it seriously.
In case you missed it, I created a thread of Lisa's presentation 🧵1/8 #NIH #TreatLongCovid Recover-TLC Path Forward *Should reflect the urgency and collaboration of ACTIV and meaningful patient engagement of HIV/AIDS Clinical Trials Network -Agent Submission Portal *Need patient and caregiver representation on panel *Get patient input when choosing who is on the panel *Criteria and scoring/weighting chosen with patient input ***"safety' can have different thresholds and mean different things between a researcher and a patient ***Data is biased, Preclinical and clinical efficacy data can have different levels of quality and meaningfulness to patients ( NO exercise or video ga... Treat Long Covid Path Forward 2/8 #TreatLongCovid #NIH Recover-TLC Path Forward Clear need for both larger platform trials and smaller experimental /proof of concept trials * Need funding mechanism for both and a coordinator, esp. for trials that are done outside of the network/not chosen from agent submission portal (Office for IACCI Research) *Network tone used to also validate smaller trials' findings Trials are great opportunity to do the biologically probing work necessary to characterize, phenotype, etc.
Aug 4, 2024 • 18 tweets • 5 min read
For those insisting that PEM is the only symptom of ME/CFS, please take a look at the full range of symptoms.

I developed ME from Covid, and now I have both Long Covid and ME. I experience all of these symptoms firsthand. #ME

🧵 Thread: Understanding ME/CFS Symptoms 1/18 2/18
Post-Exertional Malaise (PEM): The hallmark symptom. After physical or mental activity, symptoms worsen, often delayed and lasting days or weeks. #LongCovid #ME #PEM #JohnVsJonVsME

For more:
May 28, 2024 • 6 tweets • 2 min read
1/6
 Last night, I felt a PEM crash coming on & realized I hadn’t been drinking my Taurine water. I quickly chugged half a glass and it seemed to help a lot.

Today, I woke up with pre-PEM pain & again felt better after drinking Taurine water.

How does Taurine help w/ PEM? 2/6
 According to Google: Here are some key reasons based on its physiological benefits. #LongCovid #ME #Taurine

1. Antioxidant Properties: Taurine acts as an antioxidant, helping to reduce oxidative stress, which is often elevated in conditions like #ME and #LongCovid.