Patient-Led Research Collaborative
@patientled · joined 21 Nov 2020
Patient-led research and advocacy for #LongCovid and infection-associated chronic conditions!
26 329Followers
697Following
3 757Posts total
54KViews on collected posts
Latest posts
Looking for new posts…
PLRC member @julialmv published a piece in @TheLancetInfDis highlighting how quickly her team completed recruitment for the LoCITT-T clinical trial.
They recruited 1,000 people in less than two months — a feat many other trialists doubted was possible. 🧵 https://t.co/e02x75LtnS
2K views · 41 likes
· 18 reposts · 2 replies
Open on X →
A new PLRC-funded study is out!
The team studied whether inherited haptoglobin phenotypes—a genetic trait that determines how efficiently the body clears free hemoglobin and protects tissues from oxidative stress—could explain part of the variability of severity in #LongCovid 1/
1.4K views · 40 likes
· 14 reposts · 1 replies
Open on X →
A new PLRC-funded study is out from Dr. @RobWust and team 👏
The study compared people with #LongCovid and #MECFS to healthy individuals who underwent 60 days of strict bed rest, and the underlying changes were clearly different! 👇
2.2K views · 30 likes
· 5 reposts · 0 replies
Open on X →
PLRC is wrapping up our summer fundraiser and want to thank everyone who has supported so far! There's still time to give. Your support helps us continue addressing the #LongCovid questions patients care most about.
Donate: https://t.co/tvqoAA9nJO https://t.co/zRSt7V3Y68
1.2K views · 15 likes
· 9 reposts · 1 replies
Open on X →
@D_Bone @_VFK_DAA @Virus2Host Remember when ppl started linking Covid to immune deficiencies?
Hannah Davis @patientled dug up some decades old, worthless paper (authored by MECFS Mafia shill) to try to prove that MECFS had immune deficiency just like HIV.
Findings never again r
737 views · 11 likes
· 3 reposts · 2 replies
Open on X →
For more information, to collaborate, or to cover this paper, please reach out to team@patientledresearch.com! 11/
840 views · 22 likes
· 0 reposts · 1 replies
Open on X →
Enormous thank you to @julialmv for leading and co-authors @ChronicResearch, @ahhrrr, @LisaAMcCorkell, @twjaudon, @TheMegascope, @ahandvanish, and Alison Cohen for their tremendous work! 10/
909 views · 27 likes
· 0 reposts · 1 replies
Open on X →
Finally, patient-led studies and studies with patient scientists and high patient engagement are most likely to meet these recommendations, and support the design of effective and comprehensive research. 9/
577 views · 27 likes
· 2 reposts · 1 replies
Open on X →
Biomedical endpoints should be included alongside other outcomes to discover pathophysiological mechanisms and potentially connect them to treatment responses. 8/
567 views · 28 likes
· 2 reposts · 1 replies
Open on X →
Strong endpoints and outcome measures are possible even in the absence of a specific biomarker. Tools such as the FUNCAP, COMPASS-31, 2-day CPET, specific cognitive dysfunction tests, and cerebral blood flow can measure some of the most debilitating components of #LongCovid. 7/
735 views · 30 likes
· 5 reposts · 1 replies
Open on X →
-Trials must be both rigorous and accessible – for example, parallel triple-blinded randomized trials that can be conducted remotely and/or without participants needing to leave their home. 6/
600 views · 28 likes
· 2 reposts · 1 replies
Open on X →
-Studies should include historically under-represented participants, such as severe housebound and bedbound patients; gender, racially, and ethnically diverse individuals; and those living in rural areas. 5/
641 views · 31 likes
· 3 reposts · 1 replies
Open on X →
-Trial design should consider illness comparator cohorts, as well as multiple therapeutic arms, such as basket, umbrella, and platform trials. 4/
636 views · 25 likes
· 2 reposts · 1 replies
Open on X →
Some other key points:
-Trials should prioritize potentially curative interventions, including repurposed drugs and the development of new drugs.
-Combinations of therapies may be beneficial or necessary, which should be considered in clinical trial design. 3/
740 views · 30 likes
· 3 reposts · 1 replies
Open on X →
It also gives an overview of the promising interventions being trialed (as of May 2024) for #LongCovid and their targets, including viral persistence, immune dysfunction, endothelial dysfunction, and symptom management. 2/ https://t.co/9Qi58zy87l
1.7K views · 40 likes
· 8 reposts · 1 replies
Open on X →
We’ve released a new paper on designing & optimizing clinical trials for #LongCOVID!
Strong, high-impact trials are critical & most current ones are insufficient. The paper gives guidance on treatments, outcomes, design, participant inclusion, & more.
https://t.co/Yp4McFOi7x 1/
38.4K views · 270 likes
· 79 reposts · 10 replies
Open on X →
Against accounts of the same size
4 posts from the last 90 days, next to the 10K–100K follower range. shown far beyond its own audience, and the audience reacts.
Median views1 689this account935median for 10K–100K
Reach, %6.41%this account3.43%median for 10K–100K
Engagement, %2.56%this account1.54%median for 10K–100K
| Metric | This account | Median for 10K–100K | Ratio |
|---|---|---|---|
| Median views per post | 1 689 | 935 | 1.81× |
| Reach (views ÷ followers) | 6.41% | 3.43% | 1.87× |
| Engagement rate | 2.56% | 1.54% | 1.66× |
Others in this range → Compare with another account → How these benchmarks are built →
Growth & engagement
How the posts we collected actually performed: views and reaction rate post by post, what the audience did with them, and where the follower count goes.
Views per post
63622 Aug
641
600
735
567
577
909
840
73717 Jul
2417 Oct
1.2K5 Aug
2.2K14 Aug
1.4K19 Aug
2K25 Aug
Last 14 collected posts, oldest on the left. The scale is logarithmic: one post can outrun the rest a hundred times over.
Engagement rate per post
4.40%22 Aug
5.46%
5.17%
4.90%
5.47%
5.20%
3.08%
2.74%
2.44%17 Jul
8.33%17 Oct
2.00%5 Aug
1.59%14 Aug
4.04%19 Aug
3.12%25 Aug
Reactions — likes, reposts, replies and quotes — divided by views. Median for 10K–100K accounts is 1.54%.
What the audience does
Likes69.6%697 in total
Reposts15.5%155 in total
Replies2.6%26 in total
Quotes1.2%12 in total
Bookmarks11.1%111 in total
Share of every reaction we collected for this account. Replies mean argument, reposts mean endorsement, bookmarks mean the post was worth keeping.
The follower curve appears once this account has two daily snapshots — we take one a day, and this one is on its first.
Similar accounts
T.E. Jentzen ✓
@Faithful2Pray
52.7K followers
· 158.2K posts
Luís Ribeiro ✓
@theluisribeiro
52.7K followers
· 48.3K posts
ZTN
@ZTNPrime
52.7K followers
· 35.8K posts
#Chapeleira🖤💋🎩✡ #LutoPeloBrasil ✓
@nzmendes1
52.7K followers
· 722.2K posts
Jonathan Malagón ✓
@JoMalagon
52.7K followers
· 20.3K posts
SMINTY
@smintyd
52.7K followers
· 19.5K posts
World Wide Web Foundation
@webfoundation
52.7K followers
· 23.7K posts
Vikas Saraswat ✓
@VikasSaraswat
52.6K followers
· 134.2K posts