I'm not saying you should go back and read all the statements about SARS-CoV-2 from early 2020. I'm saying public health agencies, virologists, epidemiologists, and health reporters should go back and read their own statements about SARS-CoV-2 from early 2020 and reflect just a little bit.

If all the news about the hantavirus outbreak has you searching for something you can do: wear a mask; and if this passes and it turns out you don’t need it to protect yourself from a hantavirus pandemic, it will still protect you from the ongoing coronavirus pandemic.

Watch the full presentation "Long COVID Web: Patient Perspectives on #LongCovid in Primary Care and Clinical Trials" here: www.youtube.com/watch?v=vYGa...

2. She also shared how PLRC’s work is helping to address these limitations — by incorporating patient expertise to strengthen trial design. Two of our latest papers below aim to address the current limitations in the field 👇 • www.thelancet.com/journals/ebi... • www.thelancet.com/article/S147...

PLRC co-lead @leticiasaurus.bsky.social recently presented on the state of #LongCovid clinical trials — and shared that findings from many trials remain inconclusive due to limitations in study design, most notably the widespread failure to account for post-exertional malaise (PEM).

The overruling beliefs in the psychosomatic rehabilitation models that have dominated for decades, to widespread disaster, in treating chronic illnesses like this is that we are lazy, unmotivated, forgot that doing normal activities is easy and refuse to try. They even apply this to pro athletes.

"It is clear much of the media has failed to learn important public health messages in discussing viral illnesses that we’ve gleaned from Long COVID and the ongoing COVID-19 pandemic." #CovidIsAirborne #CovidIsNotOver

“I just didn’t want to accept my career was ending… because of COVID… a virus so out of my control… eventually I got to a point where I was like, I’m 15 months in, I’m still housebound, still mostly bedbound, unable to do most basic things.” #LongCovid thesicktimes.org/2026/04/28/p...

This ep of “A Friend for the Long Haul” features PLRC member @kpbanks.bsky.social (DrPH) She describes a study where non-English speakers reported new health symptoms but hadn’t realized they were connected to their COVID infection, largely because information wasn’t available in their language.

PLRC has revolutionised patient-led research and generated ground-breaking long cocid research, in just 6 years. It is just an amazing, inspiring organisation.

We love our community deeply and appreciate the solidarity you’ve shown over 6 years! If you’d like to support our work and research, please see patientresearchcovid19.com/donate/ 3/

This month marks PLRC’s 6 year anniversary!! 6 years ago, we released the survey that would become the first report about #LongCovid - the first data that showed the world its severity. While it always bewilders us how much time has passed, we’re proud of our work. 1/

In the past year alone, we’ve published 15 papers on #LongCovid topics such as extended use of Paxlovid, access to healthcare in India and outcome measures for clinical trials. We’ve put out an awesome treatment guide, a 2026 fact sheet, and organized international conferences & med ed. 2/

Great news!!! See image 👇 Full 🧵 with list of senators on board: threadreaderapp.com/thread/20452...

Thank you! I just called my Senators @schumer.senate.gov @kirstengillibrand.bsky.social and told them we desperately need #LongCOVID funding 🙏

Thank you @padilla.senate.gov & @schiff.senate.gov for supporting Long COVID & ME patients!

More details about this campaign can be found below /end bsky.app/profile/lcca...

Links again for our free, customizable @lccampaign.bsky.social tools to ask YOUR SENATORS to sign-on to the $210+ million #FundLongCOVID FY27 Appropriations letter: 📞 #FundLongCOVID Senate call tool: tinyurl.com/LongCOVIDCall ☎️ #FundLongCOVID Senate email tool: tinyurl.com/LongCOVIDEmail 5/x

📣📣📣with the deadline extended to Monday, let's keep the emails & calls going! These Senators signed the FY26 #FundLongCOVID letter last year, but haven't yet this year: @kirstengillibrand.bsky.social, @kim.senate.gov , @warnock.senate.gov, @wyden.senate.gov Let's try & grow the list for FY27! 4/x

And these senators have signed on to the #FundLongCOVID letter as well @warren.senate.gov, @welch.senate.gov, & @whitehouse.senate.gov All thanks to your incredible advocacy 👏👏👏3/x

Along with FY27 #FundLongCOVID letter leads @markey.senate.gov @kaine.senate.gov @duckworth.senate.gov, these senators have now signed on too: @alsobrooks.senate.gov, @booker.senate.gov, @klobuchar.senate.gov, @lujan.senate.gov, @padilla.senate.gov, @schiff.senate.gov, @smith.senate.gov …2/x

📣GREAT NEWS📣 Just spoke to Hill champions: your hundreds of calls & emails are making such a difference, they've extended deadline for Senator sign-on to #FundLongCOVID Dear Colleague letter to MONDAY APRIL 20 10am ET! More @lccampaign.bsky.social details incoming, senators now signed: 1/x

Exciting update! The drive to ask Senators to sign a request for Long Covid funding is going so well that the deadline has been extended to Monday—calls and shares this weekend will continue to help! And 13 Senators have already signed on! Ask yours to join: tinyurl.com/LongCOVIDCall

Please call or email your Senators by close of business Friday 4/17 & ask them to sign on to the “Dear Colleague” letter for Long Covid funding: Call tool: win.newmode.net/longcovidcam... Email tool: win.newmode.net/longcovidcam...

Deadline for this is tomorrow! Make a pair of quick calls to ask your Senators to support funding for Long Covid in FY27 Appropriations! Call tool: tinyurl.com/LongCOVIDCall #LongCovid #NEISvoid

Sending an email took me less than a minute via the link in the thread — if you have the energy, please join me! I’m out of talking spoons today but I’m gonna try to call tomorrow! #FundLongCovid

Re-upping this important advocacy opportunity for Americans because Bluesky was not working yesterday. Deadline is today at end of business day!

#pwLC #pwME #POTS #NEISVoid LAST DAY to call! Easy tool with script that routes to your Senators tinyurl.com/LongCOVIDCall Info in thread about appropriations ask here. Please call, like, and reshare. Email tool in next post (if needed)

Last day!

Study links long COVID in kids to worse grades, attention, and social life www.cidrap.umn.edu/covid-19/stu...

imagine what conscientiously maintained air purifiers and—dare i say—an open window or two could change.

🚨📞CALLS needed TODAY! Final push to get Senators to sign on to $210M to fund LC & related conditions in FY27 budget appropriations. This call tool routes to Senators with a script: tinyurl.com/LongCOVIDCall Leave a msg., if needed. More in 🧵on this #FundLongCOVID campaign.👇

If you have the time/energy to make a call by Friday, this is one the best bets for new research funding for #LongCovid. Led by hill wiz @meighanstone.bsky.social — asking your Senators to sign on to this "Dear Colleague" letter is one of most important ways to ask for new funding for FY27.

Why This Campaign Matters 21M+ Americans are living with #LongCOVID — and, right now, there's a critical window to fight for the funding they desperately need. Help us send a powerful message to the Senate that we are still here and we need help NOW. #FundLongCOVID /end

The Senate letter centers patient needs: 1) monies are directed to drug trials, biomarkers, & therapeutics AND 2) LC-related conditions like dysautonomia, POTS, & ME/cfs will be included in research. Let’s remind leaders that THESE are the interventions we want and need. 8/X

If you have additional spoons OR are outside the U.S.… you can also post on socials, tag, & thank Senators Markey (D-MA) @markey.senate.gov, Kaine (D-VA) @kaine.senate.gov, Duckworth (D-IL) @duckworth.senate.gov, & Young (R-IN) for their continued support of the #LongCOVID community. 7/x

3. 📢 Share this thread and these tools with friends, family, and fellow advocates so they too can use them advocate to #FundLongCOVID. Tag those you especially think may want to see it so the algorithm doesn’t prevent views. 6/x

2. ✉️ Email your Senators with the same ask using this handy LCC email tool tinyurl.com/LongCOVIDEmail which provides an email template & sends directly to your 2 Senators asking them to sign on to the Dear Colleague Letter and #FundLongCOVID in 2027 Appropriations. 5/x

#pwLC #POTS #pwME #NEISVoid in the U.S. – Here are THREE WAYS You can help 1. 📞 Calls to Senators' offices make a BIG impact & this handy LCC call tool automatically identifies your 2 senators based on address tinyurl.com/LongCOVIDCall Letter deadline is COB Friday April 17th 4/x

BUT we need more Senators to sign on to the FY 27 “Dear Colleague” appropriations letter. ANY of the 100 U.S. Senators can support this request. EVERY U.S. patient can call or email their Senators to highlight the need to #FundLongCOVID in 2027 appropriations. 3/x

Senators Markey @markey.senate.gov, Kaine @kaine.senate.gov, and Duckworth @duckworth.senate.gov are once again championing a FY27 "Dear Colleague" letter calling for over $210 MILLION in appropriations for research funding at NIH, ARPA-H, and AHRQ clinics #LongCOVID & related conditions. 2/X

📣U.S. Action Item: #pwLC #POTS #pwME #NEISVoid we need your help! Will you contact your Senators & ask them to sign on to the FY27 Senate “Dear Colleague” Letter for over $210 million to #FundLongCOVID in 2027 Appropriations using our EASY low-spoons call/email tool?🧵

Transferring IgG antibodies from patients with #LongCovid to mice recapitulates many symptoms www.sciencedirect.com/science/arti...

I believe this is why Alice was such a remarkable activist and organizer. She welcomed #LongCovid community while many others were very unsure we'd ever appreciate things like Disability Justice, and used DJ to bring us to our best moment. Genius! /8

Loretta Ross said: “When people think the same idea and move in the same direction, that’s a cult. When people think many different ideas and move in one direction, that’s a movement.” — and that we spend too much time arguing with people whom we agree with on 75-90% of issues. /7

I often see so much energy focused on "who is out of step" and "who did what!?" — and not "how can get we get all these people with different immediate priorities to achieve THIS". I'm not sure if we'll achieve anything if we expect everyone to be 100% aligned on every idea. /6

It was without a doubt, in my mind, the most powerful #LongCovid advocacy has been—& it was the result of not going alone, but using everyone's collective power to raise hell. It's self-evident & obvious why, but it's... very hard, & seems to be a rare occasion in this space. /5

Sometimes a trending hashtag does make a difference. #PodSaveJon "this campaign... actually helped push Senator Bernie Sanders to host the first Long COVID Senate hearing just weeks later. This was a huge deal..." #LongCovid

Three weeks later @sfdirewolf.bsky.social casted a spell with #PodSaveJon and had all of us working together in a beautiful and righteous orchestra. It was the first time many of us had seen that level of solidarity in action, and the results? Remarkable. Senate hearing, legislation, op-eds. /4

I constantly heard (often still) things like. "LC patients only want cures" "Disabled ppl only want access" "CC only want masks"—often griping at moments of division, & not the fact all three benefit from better care, access & mitigation—& an evolved POV on disability & illness. /3