@Riemerville Profile picture
Mar 15 7 tweets 2 min read Read on X
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
Don’t take cancellations personally.

when someone with Long Covid cancels plans, it usually means their body hit a wall.

trust me when I say they are more disappointed than you.
3/7
#LongCovidAwareness
Learn their energy limits.

some days they might have two good hours.
some days they have none.

Long Covid often means carefully budgeting energy & feels like a crap shoot

4/7
#LongCovidAwarenessMonth
Offer specific help

“let me know if you need anything” sounds nice, but it puts the work back on them.

try:
“i’m at the store, want groceries?”
“can i bring you dinner?”
small practical help matters a lot

5/7
#LongCovidAwareness
Include them even when they can’t participate.

send the invite.
text them anyway.
share photos from the hangout.

Long Covid is extremely isolating. Small reminders that they’re still part of your life matter🩵
6/7
#LongCovidAwareness
Random acts of kindness

a text to say “i’m thinking about you”
freshly picked flowers on their door step
a handwritten card
a funny meme

When you do that, we feel seen and loved.

I hope these tips help🙏

7/7
#LongCovidAwareness

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More from @Riemerville

May 18, 2025
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
I never imagined a virus could leave me disabled. I had no underlying conditions.

Long Covid is still a threat & you don’t know about it because public health officials failed to warn you.

If you’re experiencing mysterious symptoms after your latest cold, It’s Long Covid 3/3
Read 5 tweets
Sep 25, 2024
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.
Choosing Interventions 3/8 #TreatLongCovid #NIH Choosing interventions *Curative top priority *Accessible *Wide array *Need both new drug development and repurposing *Consider end goal/last mile
Read 8 tweets
Aug 4, 2024
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:
3/18
Chronic Fatigue: Persistent, overwhelming fatigue that isn't relieved by rest, affecting daily life significantly. #LongCovid #ME #JohnVsJonVsME
Read 18 tweets
May 28, 2024
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.
3/6

2. Anti-inflammatory Effects: Taurine has anti-inflammatory properties, potentially reducing inflammation.
#Taurine #LongCovid
Read 6 tweets

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