Becca
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longcovidbecca.bsky.social
Becca
@longcovidbecca.bsky.social
45 followers 150 following 0 posts
Long Covid since 2022, ME/CFS and POTS. All damage from one infection. Former functioning person. Navigating the grief that comes with this illness taking so much from us.
#CovidIsAIRBORNE 😷
Posts Replies Media Videos
Reposted by Becca
tomkindlon.bsky.social
"When a Schedule Stops Working: Learning to Live by Rhythm Instead"

onelifelivedwell.substack.com/p/when-a-sch...

Another thoughtful blog post from this sympathetic and knowledgeable occupational therapist who specialises in ME/CFS & long Covid

#LongCovid #MEcfs #POTS #CFS #PwME
When a Schedule Stops Working: Learning to Live by Rhythm Instead Abby Oct 04, 2025 Many people living with Long COVID, ME/CFS, POTS, or other energy-limiting conditions know the frustration of trying to keep a “schedule.” You might make plans, set alarms, build routines that look good on paper, just to crash after, so you rest, recover, and try again. Each week begins with determination and ends with depletion. But what if the problem isn’t you? What if the problem is the schedule itself?
January 14, 2026 at 9:58 PM
Reposted by Becca
neurologistmom.bsky.social
We urgently need to include severe Long COVID patients in research. They are already invisible to many, and sadly to research as well. Excluding them may cost us understanding the disease; they hold the answers to Long COVID.

I wrote for @thesicktimes.org

thesicktimes.org/2026/01/13/s...
Severe people may hold answers to Long COVID. They must be included in research. - The Sick Times
People with the most severe symptoms represent the most clinically urgent population, yet they remain absent from the evidence base that guides care. Their exclusion is not a procedural oversight but ...
thesicktimes.org
January 14, 2026 at 1:43 AM
Reposted by Becca
darthfoo.bsky.social
Another quote from my new piece, The Accounting Error.

“I knew it was coming. I’d done the accounting. What I didn’t expect was what happened after.”

#PEM #MECFS #ChronicIllness #Disabled #Disability
January 14, 2026 at 4:28 PM
Reposted by Becca
darthfoo.bsky.social
A quote from my new piece, The Accounting Error.

“The post-holiday crash hit exactly as expected. The brutal economics of chronic illness don’t lie. You spend energy you don’t have on celebrations and gatherings, and the body presents its bill with interest.”

substack.com/home/post/p-...
The Accounting Error
When Chronic Illness Doesn’t Follow the Script
substack.com
January 14, 2026 at 4:28 PM
Reposted by Becca
michael-hoerger.bsky.social
The size of the winter COVlD wave has been revised upward as post-holiday data come in.

We estimate 1 in 55 people in the U.S. are actively infectious.

🔥WV: 1 in 14
🔥IN: 1 in 15
🔥MI & OH: 1 in 21
🔥MO: 1 in 22
🔥CT: 1 in 24
🔥KS: 1 in 25
🔥MA & IL: 1 in 27

Quick 🧵 1/4
Heat map and PMC estimates, 1 in 55 infectious and 892,000 new daily infections for Jan 12. We expedited the report to release it two days early.
January 10, 2026 at 9:46 PM
Reposted by Becca
broadwaybabyto.bsky.social
When you’re disabled, the holidays can be challenging.

Many of us are alone, in pain or in the hospital.

We’re excluded from celebrations because people don’t want a reminder of “sickness”.

If you’re struggling tonight, please know you’ve got a community behind you
December 25, 2025 at 3:48 AM
Reposted by Becca
abrokenbattery.bsky.social
Christmas can be a difficult time for people with chronic illness. Thinking of everyone with severe #MECFS and #LongCovid, particularly those who are living alone or isolated in darkened rooms.
December 25, 2025 at 10:17 AM
Reposted by Becca
benking01.bsky.social
H A P P Y

P A C I N G

C H R I S T M A S

to all whose lives have been changed by #LongCovid

I'm making our Christmas Dinner - Slowly but surely!

Hoping for some kind of treatment or cure for us all in 2026 🤞🙏
Visible Health heartrate graph showing activities (tagged) and REST in between each one
December 25, 2025 at 12:35 PM
Reposted by Becca
covidchronicles.bsky.social
Day 1201—I am of the millions who've quietly disappeared.

I was the energy, the drive; the snow-fort-building, big-gift giving, adventure-planner. There was nothing I couldn't do.

Now there's nothing I can do. Not without crashing.

COVID robbed me of myself.
Stole me from my family, too.
#MECFS
December 24, 2025 at 5:14 AM
Reposted by Becca
aeforbes.bsky.social
"The inability to participate in daily activities leads to a profound loss of identity. Clinicians must recognize that they are treating a patient whose entire life structure has been destabilized."
December 23, 2025 at 8:25 PM
Reposted by Becca
bhanlon15.bsky.social
LA Times: 'The Diagnostic Challenge of Chronic Fatigue Syndrome'

'ME/CFS is characterized by Post-Exertional Malaise (PEM), where symptoms worsen after minimal activity.'

'The etiology of ME/CFS remains the subject of intense investigation.'

www.latimes.com/doctors-scie...
The Diagnostic Challenge of Chronic Fatigue Syndrome
ME/CFS is a neurological condition characterized by malaise. Diagnosis requires ruling out other systemic illnesses.
www.latimes.com
December 23, 2025 at 4:22 PM
Reposted by Becca
michael-hoerger.bsky.social
PMC COVID Update, Dec 22, 2025 (U.S.)

All indicators are that million of Americans are about to get COVID-19 "surprise" holiday infections.
pmc19.com/data
December 22, 2025 at 8:25 PM
Reposted by Becca
darthfoo.bsky.social
A quote from my recent piece, “The Holiday Tax.” #LongCovid #MECFS #ChronicIllness #Holidays #Disablility

“The guilt compounds like the PEM itself. Every invitation I decline, every gathering I miss, every moment I can’t be present for feels like I’m failing the people who matter most.”
December 22, 2025 at 2:26 PM
Reposted by Becca
covidchronicles.bsky.social
"The biggest problem may be resisting pressures to be more active, from health professionals, family, peers and the need to maintain self-esteem."

The last part of that sentence gave me pause. This is a valuable read. #LongCOVID #MECFS
mecfsskeptic.bsky.social ME/CFS Science @mecfsskeptic.bsky.social · Dec 15
1) New factsheet: ME/CFS - information for medical professionals (6 pages).

Written by Prof. Emeritus Jonathon Edwards and members of the Science for ME forum. A valuable text, useful to bookmark. A couple of quotes from key paragraphs 👇
December 15, 2025 at 11:45 PM
Reposted by Becca
michael-hoerger.bsky.social
www.tiktok.com/@michael_hoe...
PMC COVlD Update, Dec 15, 2025 (U.S.)
TikTok video by Michael Hoerger, PhD MSCR MBA
www.tiktok.com
December 15, 2025 at 10:11 PM
Reposted by Becca
thesicktimes.org
We’re over halfway through our end-of-year fundraiser, and we’re not where we need to be to keep our vital work going. We have three weeks left to hit our goals of $60,000 and 200 monthly supporters.

The #LongCOVID community needs us — we need you! the-sick-times.fundjournalism.org/donate/
Purple background with white text reads: New donations (followed by a thermometer reaching $60K). New monthly supporters (followed by a thermometer reaching 200). Text reads, "The Long COVID community needs us. We need you." Four testimonials from Sick Times readers in speech bubbles: “I desperately need the information you publish and can find it nowhere else.” “The Sick Times does essential work for the Long COVID community.” “You're indispensable and genuine. I trust your dedication to our community.” “I appreciate everything all of you do to keep publishing the truth in a world that cares little for it.”
December 12, 2025 at 5:39 PM
Reposted by Becca
juliadoubleday.bsky.social
2 years in to living with Long COVID, my life has changed drastically- and so have I.

My latest personal essay talks about how a life steeped in crashes and pain lends itself to mindful gratitude in the interludes of quiet relief.

www.thegauntlet.news/p/uneasy-peace
Uneasy Peace
Two years in, I find moments of gratitude and happiness between Long COVID crashes
www.thegauntlet.news
December 8, 2025 at 9:07 PM
Reposted by Becca
chronicillness.bsky.social
colitisunfiltered - Living with a chronic illness is basically playing a game where the rules change daily, your opponent is invisible, and everyone watching thinks you're faking it because you don't 'look sick.'
December 7, 2025 at 2:52 PM
Reposted by Becca
chronicillness.bsky.social
"You seem fine to me."
Thanks. It's called acting.
December 5, 2025 at 12:31 PM
Reposted by Becca
longcovidmommy.bsky.social
This story is about UNC Chapel Hill's #LongCOVID clinic being closed due to funding being cut. Another huge reason for our plea for donations to the @c19lap.bsky.social C-19 Longhauler Advocacy Project 🙏🏾.

www.charlotteobserver.com/charlottefiv...

bit.ly/FR4LC26
Long COVID patients in NC struggle to find care as clinics close their doors
“Like a lot of people, I still have a house payment, I still have car payments, and, you know, I couldn’t just stop working.”
www.charlotteobserver.com
December 5, 2025 at 2:40 PM
Reposted by Becca
thesicktimes.org
Leslie Lee III, an educator, critic, and Long COVID advocate, died on November 10.

“He was one of the few voices in leftist spaces that refused to buy into COVID denialism," Taylor Lorenz told @mileswgriffis.bsky.social. "He was such a strong voice..."

bit.ly/44MICG4
A photo of Leslie Lee III. He is a Black man in his early 40s with a mustache. He wears a ball cap, glasses, and a black shirt. The text reads, "The Sick Times. Leslie Lee III, culture critic and Long COVID advocate, dies at 43. By Miles W. Griffis." A screenshot of a message on X: L., MA @leslieleeiii Nov 14 Please read. -YB. All proceeds from the GoFundMe will go to cover funeral costs and as temporary replacement of loss of income. This is YB, @stuffhedoes Leslie's spouse. I am sad to share with you the tragic news of his passing on Monday, November 10th, aged 43. Leslie Lee Ill was a beloved husband, son, brother, uncle, cousin, nephew, and friend. He left us much too soon. I appreciate your kindness at this time, while we process our grief. If you wish, you can donate directly to his gofundme linked in his profile, any later news I will post from this account. A private service for family is being held this week with a memorial service to be held at a later date in NYC. He was to me, my everything. He was an advocate for others with Long COVID. He was an amazing writer and passionate podcaster.
December 4, 2025 at 6:02 PM
Reposted by Becca
betsyladyzhets.bsky.social
It's #GivingTuesday. At @thesicktimes.org, our end-of-year fundraiser has been lagging behind; we're hoping to raise $10k today to get back on track.

Here are a few recent stories that demonstrate our unique role serving the Long COVID community. the-sick-times.fundjournalism.org/donate/ (1/10)
Purple graphic with white text. Text at the top reads, "Our reporting serves our Long COVID community. Your donation makes it possible." Below, there are two thermometers showing donation progress. The first is titled "New donations" and goes from $0 to $60k; donations so far have reached about $16k. The second is titled "New monthly supporters" and goes from 0 to 200; so far, this number has reached 44. At the bottom right, there are the Sick Times and NewsMatch logos.
December 2, 2025 at 4:52 PM
Reposted by Becca
darthfoo.bsky.social
I’m excited to share my latest work, “The Small Life.” It explores the little things that still bring me joy as I navigate #LongCovid and #MECFS. #ChronicIllness

substack.com/home/post/p-...
The Small Life
Calculating Worth with Diminished Returns
substack.com
December 1, 2025 at 9:28 PM
Reposted by Becca
julialmv.bsky.social
Now >900 LoCITT-T participants.

We're close to a last call for participants!

Still hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...
December 1, 2025 at 5:20 PM
Reposted by Becca
thesicktimes.org
“The problem with Long COVID is that most of society would rather not see it.”

@philipandrewhoover.bsky.social writes that he often feels that he’s living a double life. How can this sick side of him be so central, so enormous, yet so unseen by those who know and love him? bit.ly/4pf80g7
Edvard Munch’s Melancholy depicts a man sitting by himself on the seashore, resting his head on his hand, with a look of deep sadness on his face. The text reads, “The Sick Times. You know someone with Long COVID. They need you to ask about it genuinely. By Philip Hoover.” “The worst part of getting Long COVID was the cruelty of the disease, a punitive unraveling of my health and identity. The next-worst part, and just as heartbreaking, was discovering how few of my friends and loved ones could engage with my illness in ways that felt caring.”
December 1, 2025 at 6:04 PM