1/ New @patientled paper alert!

Reproductive health issues after COVID are well known among #LongCovid patients but are not adequately studied.

For @FrontRehSci, we reviewed studies on repro health impacts of Long COVID & associated conditions in women: doi.org/10.3389/fresc.…
2/ There has been a huge need for this work and we're excited to say it is already the most viewed article published by @FrontRehSci so far in 2023! #LongCovid Four-panel diagram listing ...
3/ Studies show that people with #LongCovid and associated illnesses including ME/CFS, POTS, and CTDs like EDS report multiple menstrual health issues including disabling periods & severe period pain. #pwME #NEISvoid
4/ Some Long COVID symptoms worsen around menstruation, also reported in ME/CFS & POTS.
Pregnancy can trigger or alter the course of illness in ME/CFS & POTS; some improve & others worsen.
Research is needed to understand how sex hormones affect infection-associated illnesses.
5/ Premenopausal women, trans, and gender non-conforming individuals are disproportionately affected by #LongCovid and associated illnesses. However, research focused on the reproductive health of these populations in Long COVID and overlapping illnesses has been limited.
6/ Average diagnostic delays for reproductive health conditions regularly span many years (up to 11 years for endometriosis).

Research efforts and funding haven’t met the pressing needs of patients for symptom alleviation and treatment.
7/ We recommend research priorities & emphasize the importance of studying reproductive health in #LongCovid & associated illnesses, & to address historic underfunding & the significant impact on cis women, trans women, & gender diverse individuals. doi.org/10.3389/fresc.…
8/ Recommended research priorities:

-Sex hormones/differences; why do infection-associated illnesses predominate in women & trans people
-Menstrual cycle impacts on #LongCovid symptoms
-How reproductive health conditions develop after infection; their role in the pathophysiology
9/ We recommend that rehabilitative care & research on #LongCOVID and associated illnesses like ME/CFS, POTS, & connective tissue disorders like EDS include screening patients for reproductive health symptoms and conditions (e.g., endometriosis), as well as overlapping illnesses.
10/ Thank you to all the co-authors of this paper - @ChronicResearch, @vonSaltza, @LisaAMcCorkell, Lucia Santos, @AshHultman, Alison Cohen at @UCSF_Epibiostat, & @leticiasaurus - and to our amazing editor @PutrinoLab!

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More from @patientled

May 15
We have a new paper out in @NatMentHealth on mental health & coping in #LongCovid!

Mental health is historically complex to study in post-viral illnesses, & we were lucky to have this work led by @YochaiReemMD, a psychiatrist with lived experience of Long Covid himself!

1/
Content warning for discussion of suicidal thoughts in thread.

2/
Major findings:

Unsurprisingly, not everyone with LC has a mental health outcome, further communicating that this is not a psychological illness.

Overall, 42.8% of people with LC experienced depression, anxiety, or suicidal thoughts, compared to 28% of those without LC.

3/
Read 36 tweets
Apr 17
Today is our 3 year anniversary working to understand what's happening in #LongCovid.

We are tired and also committed to this fight for our community until answers are found. 1/
In the past year, we've launched a patient-generated hypothesis publication; awarded $5 million in biomedical research; launched a reinfections survey; studied the impact of #LongCovid in LMIC; created scorecards to rate patient engagement in research 2/

patientresearchcovid19.com/patient-led-re…
We've contributed to a range of clinical trials & studies; written papers on reproductive health, mental health, episodic disability, EHR data, a #LongCovid research review, & others; given dozens of presentations & medical provider education 3/

nature.com/articles/s4157…
Read 6 tweets
Jan 17
🚨Attention all those who value patient-led research! 🚨

In partnership with @CMSSmed & funded by @PCORI, we have developed scorecards that evaluate how effective a patient group and research partner collaboration will be at conducting truly patient-led research
The goal of these scorecards is to demonstrate how patient groups and research partners can improve their inclusion of patients in the research process so that the research centers patients and leads to improved outcomes for all.
We're hosting 3 webinars that will explain the scorecards & teach you how they can be used to promote patient-led research. The scorecards were developed based off our experience partnering w/ research organizations, as well as from interviews w/ patients, researchers, & funders
Read 9 tweets
Nov 22, 2022
Big news!

We are *thrilled* to announce the $4.8 million in research awards for #LongCovid & associated conditions from our Patient-Led Biomedical Fund today!

These were decided by a panel of 15 patient-experts & we're funding 9 exceptional projects!

patientledresearch.com/press-releases/ 1/
1) A project looking at microbial metabolites as disease-modifying factors in #LongCovid.

2) A project to unravel the pathophysiology of post-exertional malaise (PEM) in Long COVID and ME/CFS, including looking at blood and muscle biomarkers.

2/
3) A grant to characterize non-restorative sleep in post-viral disease.

4) A project to look at the impact of surgery for stenosis on ME/CFS symptoms. #MESpine

5) A project to look at altered T cell responses in #LongCovid and ME/CFS, including T cell exhaustion.

3/
Read 11 tweets
Jul 29, 2022
We are super excited to announce the Request for Proposals for our $5 million in funding for #LongCovid & associated conditions!

Please RT & circulate to any researchers with ideas for biomedical research! patientresearchcovid19.com/projects/patie… #pwME #NEISvoid

Deadline is September 23rd!

1/ Patient-Led Research Collaborative is awarding $5 million (U
The RFP can be found on our website here:
patientresearchcovid19.com/projects/patie… and here as well: docs.google.com/document/d/1jp…

A webinar will be held on September 1st for Q&A. Any others questions can be sent to team+questions@patientledresearch.com!

2/
An application template is available here: docs.google.com/document/d/11B…

We are aiming for these to be short proposals, for ease of both those sending applications and those evaluating them!

3/
Read 4 tweets
Jul 29, 2022
3:00 pm ET panel on Public Health at IACFS/ME.
Learning objectives
From Dr. Twomey, Outreach materials for survey on ME/CFS in Canada.
Read 11 tweets

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