The updated #LongCovid posters are now up on 🚈 !
Thanks for inviting & I to work on this with you, &
Let’s get more of this everywhere.
Follow
Click to Follow herlifeinpixels
Hannah
@herlifeinpixels
Co-lead for #LongCovid
| Qualitative research | Systems designer | 2x Recovering tech founder | Global citizen & Award-losing artist
Hannah’s Tweets
#TheAcidTest, I'm hoping for some community support!
has the GlucoRx order in the UK, nearly ready to mail to us to distribute to the 67 people around the US who will be contributing to the project
I would cost $2700 to send the full order priority! 😬 ...
12
65
114
Show this thread
This is an excellent survey created by designed to better understand how #COVID-19 infections and reinfections are impacting long-term health outcomes. I encourage anyone who can to participate!…in fact I just filled out the survey myself 😀: uclcovid19.fra1.qualtrics.com/jfe/form/SV_a2
4
109
181
🇨🇦Canadians: Please sign this House of Commons petition to support access to remote work. This will reduce in-person COVID exposures, provide access to financial security and workplace protection for disabled people & caregivers #pwLC #LongCovid petitions.ourcommons.ca/en/Petition/Si
read image description
ALT
1
18
26
Show this thread
New paper by presenting a newly validated questionnaire for quantifying the impact of PEM/PESE on daily activities 👏🏻
Developing tools like this is my main area of expertise, hoping I’ll be able to read this properly one day soon 🤞🏻
content.iospress.com/articles/work/
4
24
86
Thank you so much to our panelists, , Anisha, Melissa, Susie, Mark, Harriet, and for sharing your experiences with the audience today!
Quote Tweet
Agree completely with Hannah Wei’s (@patientled) comment that successful #LongCOVID co-design with patient partners requires researchers to budget for their involvement. As @sunsopeningband put it—“what gets budgeted, gets done!” 
1
7
26
Closing today! This is your last chance to nominate and apply to join our team. Do you want to help shape the future of #LongCOVID #Physiotherapy #GlobalPT
Quote Tweet
Nominations are now open to the #LongCOVIDPhysio Executive Board, including new Committees and Liaisons, from July 2023 to June 2025 #LongCOVID
longcovid.physio/nominations
Show this thread
read image description
ALT
7
12
A study from #Brazil finds 1 in 4 adults who had mild #COVID19 demonstrated cognitive deficits. The average age of study participants was 38. See what happened when they were asked to copy a diagram. We are not prepared for this. #MedTwitter #LongCovid brainfacts.org/diseases-and-d
145
1,722
3,153
Show this thread
FYI After signing, you'll get an email to confirm support before it registers your signature. Don't forget this step!
Electronic petitions need 500+ signatures (we just passed 700!) in order to be presented or tabled in the House of Commons and receive a government response.
read image description
ALT
2
5
Show this thread
🇨🇦Canadians: Please sign this House of Commons petition to support access to remote work. This will reduce in-person COVID exposures, provide access to financial security and workplace protection for disabled people & caregivers #pwLC #LongCovid petitions.ourcommons.ca/en/Petition/Si
read image description
ALT
1
18
26
Show this thread
🗓️One week ago we opened nominations to join #LongCOVIDPhysio executive board, committees and board liaisons.
🗳️Nominations stay open until 21-Apr-2023.
💙We are so pleased to see nominations arriving from around the world #LongCOVID. Do you want to join our team #GlobalPT?
Quote Tweet
Nominations are now open to the #LongCOVIDPhysio Executive Board, including new Committees and Liaisons, from July 2023 to June 2025 #LongCOVID
longcovid.physio/nominations
Show this thread
read image description
ALT
26
40
COVID reinfections are common but little is known about their impact on people's health. With support from Balvi, 's reinfections team has designed a survey to address this pressing gap in public health knowledge. #LongCOVID
uclcovid19.fra1.qualtrics.com/jfe/form/SV_a2
1/
15
288
400
Show this thread
SARS survivors 18 years later had:
1) persisting fatigue & osteoporosis
2) abnormal metabolism of amino acids & lipids
3) B-cell activation
4) cytotoxic CD8+ T cells & reduced immune function of some CD4+ T cells
5) mental health back to normal
thelancet.com/journals/eclin #LongCovid
38
766
1,880
Show this thread
So much wisdom in this thread. 🔥❤️
You're going to love this
Quote Tweet
Feeling the tiniest bit better today but my gut is so so so messed up. Here briefly because I wanted to say a little about @remissionbiome as someone with a Ph.D and who writes about expanding our methodologies, epistemologies, and basically everything we think about “Science”.
Show this thread
1
8
23
A very interesting paper from Dr. Mark Davis’ group shows that in response to the mRNA vaccine, CD8 T cell responses are attenuated in people who had prior COVID compared to uninfected people. What does this mean? (1/)
29
374
985
Show this thread
New from the NIH:
“These findings suggest that COVID infection damages the CD8+ T cell response, an effect akin to that observed in earlier studies showing long-term damage to the immune system after infection with viruses such as hepatitis C or HIV.” 1/
17
395
947
Show this thread
Today, March 15th, is the first #LongCovid awareness day. We invite everyone to join us in a worldwide effort to spread awareness and amplify our collective voice.
Together, we can open more conversations about Long COVID and bring necessary changes within research and policy
1:08
7.6K views
6
156
316
Show this thread
It has been an honor to work with .
On this #LongCovidAwarenessDay, we must commit to working side-by-side with patients to find #LongCovid treatments that work.
Thanks to for the work of 🙏
16
55
Winning the war on disinformation. #LongCovid Our latest session is out The Long Covid Sessions #LongCovidAwarenessDay
0:24
310 views
1
4
22
An overview of funding for #LongCovid in the US FY24 budget request for NIH, AHRQ, CDC, & HRSA, courtesy of :
NIH: $0
AHRQ: $19M for research on LC care delivery
CDC: $25M to continue studying LC
HRSA: $130M to support integrated specialty care & training for PCPs
12
80
143
Show this thread
Friends, we are once again putting out a big call for ANYONE who has had COVID and FULLY RECOVERED (no persistent symptoms) in the NEW YORK CITY area to assist us with a #LongCovid study. If this sounds like you, please contact us at prcovid@mountsinai.org
31
399
466
We are absolutely thrilled to be hosting from during 's Webinar tomorrow, 14 March: "Re-Thinking the Patient's Role in a #LearningHealthSystem." Please join us! Details at iscb.org/cms_addon/acad #OpenScience #PatientLed #LongCovid
Quote Tweet
Excited to be giving a talk tomorrow 11am ET at
the International Society for Computational Biology @iscb's webinar about open science and @patientled model in moving #LongCovid research forward!
Join here (free): iscb.junolive.co/Nucleus/live/m
Recording will be shared afterwards!
1
3
5
Excited to be giving a talk tomorrow 11am ET at
the International Society for Computational Biology 's webinar about open science and model in moving #LongCovid research forward!
Join here (free): iscb.junolive.co/Nucleus/live/m
Recording will be shared afterwards!
1
13
21
, co-founder of the Patient-led research collaborative, will be giving a webinar discussing Long COVID as a case study of the patient-led research model. See iscb.org/cms_addon/acad. Looking forward to it!
1
3
10
Show this thread
I'm collecting studies on the oral microbiome in ME/CFS and #LongCovid - what are the most notable ones out there? Or any studies on oral probiotic use?
cc
19
25
90
Show this thread
Thrilled to share my first "deep dive" research post for my newsletter on microclots in #longCOVID! Please check it out to learn more about the science behind this really important topic and consider subscribing if you want more of these posts! #teamclots
30
375
795
Show this thread
I help run a discord group for young adults (18-33) with #LongCovid and #MECFS, and we're looking for new members. It's a really lovely little community. DM me or to get a link to join. Please retweet and share widely!
16
158
249
Show this thread
Much of the advocacy, support and research on #LongCovid is being led by extremely-ill patients. Which framing is correct?
1. Isn't that inspirational!
2. The situation is desperate and almost no-one else is stepping up
9
34
177
Looking at the wastewater COVID signal over time, the baseline lows keep getting higher and higher so ever since Omicron BA.1 hit a year ago, we have never gone back to low levels of COVID community transmission and now those minimum transmission levels keep getting higher. 6/
read image description
ALT
23
566
1,292
Show this thread
This is a major paper from a strong team of HIV/AIDS researchers. Journalists covering #LongCovid, cover this!
Findings:
*increased CD4+ T cells poised to migrate to inflamed tissues
*exhausted SARS-CoV-2-specific CD8+ T cells
*mis-coordination between T and B cell responses
1/
Quote Tweet
New #UCSF LIINC paper showing SARS-CoV-2-specific CD4 T cells with tissue homing markers and CD8 T cells with exhaustion. Dis-coordinated responses between antibodies and T cells. Also important differences in women. COVID Tissue persistence?
biorxiv.org/content/10.110
28
181
416
Show this thread
Reading: "Making Medical Science More Democratic" by , featuring insights from
1
27
41
Show this thread
Characterizing cyber harms from digital health. #BeLikeLight
Check out new Paper from Eric Perakslis, , and . 👏
nature.com/articles/s4159
10
15
Hi everyone!
I am very excited to announce that I have finally completed a massive #ME/CFS & #LongCOVID treatment survey entitled "TREAT ME"‼️🎉🤩
If enough people respond thoughtfully, I’m confident we may push research in the field forward!🏇
🧵1/3
150
1,133
2,114
Show this thread
9
17
We need philanthropy to step up big time in the health space to fund more around Long COVID, and chronic health research AND advocacy.
Quote Tweet
Most chronic health conditions' research is extremely underfunded, actually.
This is an important caveat when talking and writing about Long COVID. Underfunding is a major issue.
Show this thread
9
39
149
Biomarkers in #LongCovid: A systematic review:
"Our study found significant associations between specific biomarkers & Long Covid symptoms. Further investigations are warranted to identify a core set of blood biomarkers that can be used to diagnose."
6
54
175
Hi all, we're recruiting for another #LongCOVID trial, but we need to tap our FULLY RECOVERED or NEVER INFECTED community for this one. If you know anyone who fits this description, let us know! prcovid@mountsinai.org
Quote Tweet
33
299
336
Today's webinar with + + was full of great moments, but this was a favorite: How funders can use the scorecards.
Learn more about this project: cmss.org/patient-led-re
cc:
read image description
ALT
1
12
26
Final webinar TODAY at 3pm ET!
Learn how to meaningfully collaborate with patients and improve your score on funded scorecards with
Thanks for moderating and supporting this work!
Free registration: tinyurl.com/yckj2b6e
#MedTwitter
10
13
“About 18% of people with #LongCovid hadn’t returned to work for more than a year after contracting Covid, according to a recent study by the New York State Insurance Fund, the state’s largest workers’ compensation insurer. Of this share, more than 3/4 were under 60 years old.”
4
47
116
Show this thread