Patient-Led Research Collaborative
@patientled
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Patient-led research and advocacy for #LongCovid and infection-associated chronic conditions!
Joined November 2020
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Pinned Tweet
COVID reinfections are common but little is known about their impact on people's health. With support from Balvi,
@patientled
's reinfections team has designed a survey to address this pressing gap in public health knowledge.
#LongCOVID
1/
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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!
1/
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We are excited to share that we have received $3 million from Balvi for research into
#LongCovid
!
Balvi is a direct giving fund, established by
@VitalikButerin
, for high-impact COVID projects.
See our full announcement here:
1/
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We are thrilled to announce that after 13 months of work, our 3rd paper on
#LongCOVID
is officially peer-reviewed & published by
@TheLancet
's
@EClinicalMed
!
"Characterizing long COVID in an international cohort: 7 months of symptoms and their impact":
1/
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Good morning! We’re live tweeting today’s hearing on Long Covid from the Senate Health, Education, Labor & Pensions Committee.
Follow this thread – or watch the live stream here:
#LongCovid
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Super excited to see new
#LongCovid
research out that our
@patientled
Research Fund funded!
Amyloid deposits were found in skeletal muscle tissue during Post-Exertional Malaise:
Wonderful to see the
@RobWust
team at the
#KSLongCoVID24
symposium. They found amyloid deposits, identified by ThT in the muscle. Perhaps due to movement of the amyloid deposits via the damaged vasculature?
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We're putting together a regular publication of patient-generated research hypotheses, published for researchers to pursue!
If you have a hypothesis & are a patient with
#LongCovid
, ME/CFS or a related condition, submit here by Oct 31:
Please RT!
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We're super excited to announce the panelists for our Patient-Led Research Fund, which will decide on $5 million in grants for research into
#LongCovid
& associated illnesses.
All 15 panelists are patient-researchers who have Long Covid and/or ME/CFS!
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Today a coalition of clinicians, researchers, RECOVER PIs, patient & disability orgs, and more sent an open letter to President Biden, urging him to address the crisis of
#LongCovid
& other infection-associated chronic conditions in his FY25 budget
1/
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We’re excited to announce that the 1st issue of the Patient-Generated Hypotheses Journal is available as a pdf on our website!
This issue includes 6 hypotheses + poll results created by patients w/
#LongCOVID
or associated conditions (or caregivers).
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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!
#pwME
#NEISvoid
Deadline is September 23rd!
1/
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Members of
@patientled
are joining
@MEActNet
today to fight for support and treatments for
#pwME
and
#LongCovid
!
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We are proud to have helped fund this amazing research into the detrimental impacts of exercise in
#LongCovid
- published today!
After a long wait, our longitudinal long COVID study is finally published in
@NatureComms
: . We find a skeletal muscle alterations in patients with
#longcovid
, which worsen with exercise. 1/n
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@SenSanders
"The symptoms of Long COVID are not minor inconveniences...Here is was far too many do not know. Long COVID can effect anybody...If you're under the impression that once you've gotten COVID you don't need to worry about it again – you are mistaken."
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We will be presenting a proposal for an ICD-10-CM code for post-exertional malaise (PEM)/post-exertional symptom exacerbation (PESE) at the September 13 ICD-10 Coordination & Maintenance Committee meeting, with clinical questions being answered by the amazing
@sunsopeningband
!
Update: the PEM/PESE ICD-10-CM code proposed in March was not approved. It will be revisited at the upcoming September meeting with minor changes in response to feedback. We do not yet have final details on what the changes will be but will share when we do.
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Viral persistence is one of the leading hypotheses on what causes
#LongCovid
. Over the years we've done a lot of work to highlight, support, & grow this line of research. Some of this work:
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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/
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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/
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The PolyBio Symposium starts shortly! We'll be live-tweeting through the day - follow this thread.
1/
#LongCovid
The PolyBio Fall Symposium is this Friday! Join us for an afternoon of
#infection
-associated chronic disease project updates, insights, and discussion.
Check out the schedule & register here:
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6) A deep learning/computational modeling project to identify drugs to repurpose for
#LongCovid
.
7) A project on microclots, analyzing microclot burden in patients over time and looking at the impact of infection & vaccination on microclot levels.
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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/
It's hard to believe, but one year ago today, we launched our first
#LongCOVID
survey out of the
@itsbodypolitic
support group. Today is our anniversary! 🎉
A few things we've achieved in the past year:
1/
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Did you know there is no specific ICD code for the symptom of post-exertional malaise (PEM)/post-exertional symptom exacerbation (PESE)?
PLRC is proposing the addition of an ICD-10-CM code for PEM/PESE, which will be presented to the US's CDC this Wednesday, March 8.
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8) A deep dive into multi-omic profiling of
#LongCovid
.
9) A clinical trial on Low Dose Naltrexone (LDN).
5/
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We at
@patientled
are hiring a part-time grant writer at 20 hours/week!
Applicants with lived experience of chronic illness or disability are particularly welcome!
Pay is $4000-$6250/month!
Please RT & distribute widely!
#LongCovid
#NEISvoid
#pwME
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This fund and awarded projects are distinctly meaningful for four major reasons:
1st: A panel of 15 patient researchers with
#LongCovid
, ME/CFS, & dysautonomia decided how the $4.8m in research funding should be allocated (the below +
@ales_frost
)
6/
We're super excited to announce the panelists for our Patient-Led Research Fund, which will decide on $5 million in grants for research into
#LongCovid
& associated illnesses.
All 15 panelists are patient-researchers who have Long Covid and/or ME/CFS!
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We hope the
#LongCovid
,
#pwME
, dysautonomia, and
#NEISVoid
communities are happy with these decisions, and look forward to sharing the research results as they come out! 11/
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We are thrilled to have provided funding from our Patient-Led Research Fund to this
@UCSF
clinical trial that aims to target viral persistence in
#LongCovid
!
Our first
@UCSF
#LongCOVID
clinical trial targeting viral persistence with monoclonal antibodies featured by
@NanetteAsimov
in the
@sfchronicle
today.
I am grateful to
@AeriumTx
@patientled
@polybioRF
for supporting this effort.
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Prof. Akiko Iwasaki
@VirusesImmunity
of
@Yale
@YaleMed
is the keynote speaker of
#IACFSME
conference, presenting today on the immunology of Long COVID.
#viruses
#immunology
#CovidIsNotOver
#mecfs
#LongCovid
#COVID19
@itsbodypolitic
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including calling for specific areas of research in the RFP.
This is a change from the typical power dynamic of biomedical research, especially in chronic illness, where large organizations decide where funding should go, and patients have no input into what is studied. 7/
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Next up, the amazing
@VirusesImmunity
!
She suggests 4 possible causes for
#LongCovid
:
viral reservoir, autoimmunity, tissue damage/dysfunction, latent virus reactivation.
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3rd: these projects showcase the many investigative paths that
#LongCovid
& ME/CFS patients would like to see pursued, including microclots, spinal-structural abnormalities, immunologic dysfunction, microbiome changes, sleep dysfunction, drug repurposing, and a clinical trial. 9/
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2nd:
#LongCovid
research has fallen short of its promise to improve patient health & has largely disregarded decades of research into infection-associated illnesses. The awarded projects have an emphasis on impact & are well informed by existing research. 8/
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4th: Each project that doesn’t already have patient representatives on the project will receive 1-2 paid patient representatives from PLRC to inform study design. This will ensure that the lived experience of patients are incorporated in all steps of the research process. 10/
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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!
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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:
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We're happy to release a new patient-led paper on returning to work & episodic disability in
#LongCovid
!
Thank you to
@BStelson
for leading, and contributors Devanshi Dash,
@LisaAMcCorkell
,
@rcalwilson
,
@GinaAssaf
,
@YochaiReemMD
, &
@herlifeinpixels
!
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We've released an open letter on the
@NIH
's RECOVER program to study
#LongCovid
. This includes a list of concerns as well as a proposed patient engagement structure.
We invite LC orgs to sign on with us & LC patients to add comments via the linked form.
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"Each infection puts you at risk of developing
#LongCovid
, even if you have fully recovered in the past or have been vaccinated.
Data from
@patientled
's reinfection survey shows the impact of COVID infections can be cumulative."
-Megan L Fitzgerald, PhD
#LongCovidAwarenessDay
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Protestors have blocked off Connecticut and I St:
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We are thrilled about
@SenSanders
' proposed legislation for a
#LongCovid
moonshot of a mandatory $10b in research funding!
Please see our joint press release with
@LCMoonshot
here:
Truly could not be more excited for this 😭
Thank you
@SenSanders
for your leadership, thank you
@MichaelPelusoMD
for calling for this with me in our Nature comment, and thank you
@LCMoonshot
& entire
#LongCovid
community for getting us to this point!
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@SenSanders
begins the hearing: "Today we will be talking about an issue that has not gotten the attention it deserves...Long COVID." "By the way, we have a full house here. An overflow room is over there."
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Our whole team at PLRC is devastated to hear about the loss of patient advocate and
@MEActNet
co-founder Beth Mazur. 1/
#BethMazur
It is with deep sadness that we share with you that we lost one of our heroes and champions of ME yesterday. Beth Mazur passed away after battling ME for 15 years. She was a selfless beacon of hope & light in our community. She demonstrated an unwavering commitment to the cause.
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Do you support the addition of the ICD-10-CM code for post-exertional malaise/post-exertional symptom exacerbation? Please let CDC know by sending in a comment by November 15! We have created a template with instructions here:
We will be presenting a proposal for an ICD-10-CM code for post-exertional malaise (PEM)/post-exertional symptom exacerbation (PESE) at the September 13 ICD-10 Coordination & Maintenance Committee meeting, with clinical questions being answered by the amazing
@sunsopeningband
!
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It's hard to believe, but one year ago today, we launched our first
#LongCOVID
survey out of the
@itsbodypolitic
support group. Today is our anniversary! 🎉
A few things we've achieved in the past year:
1/
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Show your support of this letter by signing on here (signatures will be updated weekly):
4/
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We are incredibly excited to announce a new paper on
#LongCOVID
: "Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact." We've been working on this for 7 months!!
See these threads from our researchers for insights:
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🚨Reminder to please send in your public comments in support of an ICD-10-CM code for post-exertional malaise/post-exertional symptom exacerbation by November 15!
Template here:
Do you support the addition of the ICD-10-CM code for post-exertional malaise/post-exertional symptom exacerbation? Please let CDC know by sending in a comment by November 15! We have created a template with instructions here:
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Those who experienced a “harmful,” “dismissive,” “skeptical,” or “apathetic” interaction with a medical provider, or those who reported that at least one of their doctors did not believe them, were significantly more likely to be depressed, anxious & suicidal.
#LongCovid
23/
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The current steps the Administration is taking are insufficient to mitigate the devastating impact of Long COVID & other IACCs. NIH budgets have been silent on future funding for LC research & there hasn't been enough focus on providing care & a comprehensive social safety net 2/
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We are funding one of the only clinical trials designed to address viral persistence as the main cause of
#LongCovid
, with a monoclonal antibody called AER002:
2/
We are thrilled to have provided funding from our Patient-Led Research Fund to this
@UCSF
clinical trial that aims to target viral persistence in
#LongCovid
!
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Budgets are statements of values, and we need the President to demonstrate that he values the lives of the tens of millions of people with Long COVID and IACCs, as well as those at higher risk of developing these conditions 3/
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@SenSanders
@SenSanders
"Far too many medical professionals have either dismissed or misdiagnosed the problem."
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@microbeminded2
Talks about viral reservoirs; need to not focus on fluids/blood, where the immune system can often target virus, but tissue/nerves/CNS, where it might hide. 3/
#LongCovid
2
24
137
In collaboration w/
@MEActNet
,
@LongCOVIDNatl
, &
@MarkedByCovid
, we compiled high-level recommendations for
@HHSGov
to include in the National Research Action Plan on
#LongCovid
. These include recommendations for research priorities, design, and oversight.
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Our cofounder
@ahandvanish
is on the 2022
#TIME100NEXT
list! We're thrilled that her work to advance research for
#LongCovid
, ME/CFS, & others is being recognized on the global stage.
Thank you
@TIME
for the honor &
@timkaine
for the support!
1/
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Adding to this great 🧵a few related facts from our paper:
89.1% of our
#LongCovid
respondents reported experiencing post-exertional malaise (worsening of symptoms after any type of exertion, usually delayed 12+ hours), the cardinal symptom of
#MECFS
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Update: the PEM/PESE ICD-10-CM code proposed in March was not approved. It will be revisited at the upcoming September meeting with minor changes in response to feedback. We do not yet have final details on what the changes will be but will share when we do.
Did you know there is no specific ICD code for the symptom of post-exertional malaise (PEM)/post-exertional symptom exacerbation (PESE)?
PLRC is proposing the addition of an ICD-10-CM code for PEM/PESE, which will be presented to the US's CDC this Wednesday, March 8.
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@SenSanders
@SenSanders
: "Long COVID is a serious illness that can have devastating consequences."
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125
@AngelaMSWinCA
@RogerMarshallMD
@PattyMurray
@SenatorBraun
@SenatorHassan
@SenBillCassidy
@SenTimKaine
@lisamurkowski
@SenatorHick
@SenTinaSmith
@SenSanders
@SenMarkey
is now up. "The numbers are shocking." 22-38% of people who have had COVID have Long COVID, according to the
@NIH
.
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@AngelaMSWinCA
@AngelaMSWinCA
stresses that patients have been living with infection-associated chronic conditions for generations and are doing their own research. "We are experts from a lived experience and because some of us are doing the research ourselves."
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@AngelaMSWinCA
also speaks to the challenges of managed care plans where access to knowledgable healthcare is limited. "We are living through the largest mass disabling event in modern history."
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@SenSanders
@zalaly
@lisamurkowski
@ProjectECHO
@SenatorBaldwin
@AHRQNews
@RogerMarshallMD
@SenatorHick
@SenatorHick
asking about standards for air filtration.
@zalaly
we invest millions of dollars in making buildings earthquake proof - why can't we do the same for making the air safe from pathogens?
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Our new vaccine survey is now available!
Please take this if it has been over a week since you last had a dose of any COVID vaccine (either 1st or 2nd dose)! This is open to *everyone*: those who never had COVID, those who did, & those with
#LongCOVID
. 1/
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Congrats to all of the authors on their publication:
@ErinSandersNP
,
@JeffLubell_C19
,
@ClusteredErrors
,
@vijayiyer312
,
@amayoco
, and Tamara Carnac!
Big thank you to all of the people who submitted hypotheses and to everyone who has hypotheses but were unable to submit.
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Day 2 of the 1st International Conference on
#MECFS
and
#LongCovid
held in
#Lisbon
: once again, the point was repeatedly made by presenting researchers on how crucial it is to have more clinicians
@AmerMedicalAssn
who are knowledgeable about these diseases.
#IACC
#IACI
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@zalaly
"There are ZERO approved treatments for
#LongCovid
.
We developed vaccines at warp speed. We are doing trials for Long Covid at snail speed."
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The panel is
@AthenaAkrami
,
@ravenscimaven
,
@Be_Kinderr
,
@Steve_Bellan
,
@GinaAssaf
,
@ahandvanish
,
@TheMegascope
,
@doctorasadkhan
,
@rndNumGen
,
@dunkindona
,
@shaun_qureshi
,
@exceedhergrasp1
,
@leticiasaurus
, Dr. Rochelle Joslyn, Dr. Becky Taurog.
Bios here:
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We have some major updates in the works and will update everyone soon.
We hope our work brings our community hope; we send our love and thanks to everyone who has cared for and supported us over the past 3 years. 6/
#LongCovid
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Check out coverage from
@thesicktimes
here! /5
NEW: More than 80 prominent researchers, clinicians, health advocates, and organizations are calling on President Biden to urgently address the
#LongCovid
crisis with annual funding in the billions, via a public letter published this morning.
Read more:
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This will fund 5 projects.
We are immediately directing $2m into a biomedical research fund, which will distribute funds decided by a panel of patient-researchers with
#LongCovid
& associated illnesses.
The remaining $1 million will be directed to 4 projects run by PLRC:
2/
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@SenSanders
@SenBillCassidy
"When I hear of Long COVID you have not my sympathy but my empathy. You have something out of your control dictating your life."
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@microbeminded2
@MBVanElzakker
Their hypothesis was that cytokines wouldn't correlate with neuroinflammation, but that vascular impacts & vascular health would, and this was true!
Multiple vascular markers were correlated with neuroinflammation (more than those just on this screen). 18/
#LongCovid
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@SenSanders
@zalaly
@lisamurkowski
@ProjectECHO
@SenatorBaldwin
@AHRQNews
@RogerMarshallMD
@SenatorHick
@SenBillCassidy
...and that's a wrap for the hearing! Many thanks to
@SenSanders
' team for organizing, the panelists for their fantastic testimony, the Long COVID advocates in the audience, and you for following along.
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A. A reinfection study, analyzing the impact of COVID reinfections on people with
#LongCovid
, people who did not develop Long COVID following initial infection but did after subsequent infections, and people who have had COVID multiple times and have not developed Long COVID.
3/
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It's submission day!! We've already received a lot of great proposals for biomedical research into
#LongCovid
, ME/CFS and associated conditions. Very excited!!
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!
#pwME
#NEISvoid
Deadline is September 23rd!
1/
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477
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Four hypotheses for
#LongCovid
, including persistence in the gut, chronic inflammation (including defect in zonulin-dependent barrier) (side note that MIS-C is driven by zonulin-dependent loss of gut mucosal barrier) 29/
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Did you know that our reinfections survey is available in Spanish, Portuguese and Traditional Chinese?:
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@microbeminded2
@MBVanElzakker
PET analysis in
#LongCovid
vs controls found neuroinflammation, which could implicate a bunch of things.
Really significant findings compared to controls! And not related to hospitalization or not (cohort was mostly non-hospitalized) 17/
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@AngelaMSWinCA
@RogerMarshallMD
@PattyMurray
Beale: doctor said it was just depression and anxiety, which was discouraging. She knew it was not all in her head. Received pushback when she requested testing. Doctor tested iron, but not ferritin - and discovered that she was anemic once she finally got the test.
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Every researcher on this paper is also a
#LongCOVID
patient in the
@itsbodypolitic
support group. Long COVID patients also helped disseminate, translate, contribute questions, & user-test the survey.
We believe this paper is a big win for the field of patient-led research!
3/
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70.7% found physical activity to trigger relapses or general worsening of symptoms
41.9% considered pacing to be helpful in alleviating symptoms, a greater fraction than for any other treatments reported
See this guide from
@MEActNet
for more on pacing:
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@microbeminded2
Their amazing consortium team is sharing data, collaborating, collecting patient samples, analyzing a wide range of different tests in the same patients, including arms of ME/CFS and Lyme patients.
#LongCovid
4/
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@AngelaMSWinCA
@RogerMarshallMD
@RogerMarshallMD
"Like you, we've taken my loved one to many doctors. I've read everything there is to read about Long COVID. I'm frustrated that our CDC is more focused on vaccines than Long COVID."
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Update: Unfortunately the ICD-10-CM code for PEM/PESE was not approved by CDC for implementation in Oct 2024. It will not be revisited at the March 2024 meeting due to lack of consensus on coding placement and additions, but it is possible it could be revisited in the future 1/
We will be presenting a proposal for an ICD-10-CM code for post-exertional malaise (PEM)/post-exertional symptom exacerbation (PESE) at the September 13 ICD-10 Coordination & Maintenance Committee meeting, with clinical questions being answered by the amazing
@sunsopeningband
!
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After two years of being a primarily volunteer-based organization, we are excited to be able to pay our hard-working contributors for more of their work, and to continue to grow our team of patient-researchers!
7/
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Adding a code for PEM/PESE will allow the morbidity of PEM/PESE to be tracked, help raise awareness of the symptom, facilitate coordination across medical providers, and enable better research using electronic health records.
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@AngelaMSWinCA
@SenTimKaine
Beale: "It makes me sad to think about my future. This may be as healthy as I get." Powerful words that many of us can relate to.
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@AngelaMSWinCA
Senator
@RogerMarshallMD
speaks about a family member who has been incapacitated for two years. "It's like mono that never goes away"
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This project is managed by a team of
#LongCovid
and ME/CFS patients!
We hope this project will bring further attention to the tremendous knowledge of the post-viral & infection-onset patient community and their lived experiences.
3/
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The US Dept of Health and Human Services is establishing an Advisory Committee on
#LongCovid
, and nominations are open now until January 16, 2024!
🚨 Nominations for
@HHSGov
's Federal Advisory Committee on
#LongCovid
are now open until January 16th, 2024! 🚨
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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/
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@AngelaMSWinCA
@RogerMarshallMD
@PattyMurray
@SenatorBraun
@SenatorHassan
@SenBillCassidy
@SenTimKaine
@lisamurkowski
@SenatorHick
@SenTinaSmith
@SenSanders
@SenMarkey
@NIH
@AngelaMSWinCA
If the NIH really embraced the reality of infection-associated diseases, we could do some incredible science. Historically, we didn't believe MS existed, then we got better imaging, and now we know that EBV contributes to MS.
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97
We began tracking and communicating about viral persistence studies as soon as they started to appear in 2020:
3/
Starting a thread on studies that look at how long COVID lasts in the body.
First up: viral persistence found in the small intestine *3 months* after onset.
(By the way, this is why
#longcovid
should not be called "post-COVID" anything - we don't know when "post" happens).
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We welcome people who have never had COVID-19, as well as those who have had COVID-19 at least once. The survey is open to everyone worldwide, but if you are under 18, a caregiver must complete it on your behalf.
3/
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@AngelaMSWinCA
@RogerMarshallMD
@PattyMurray
@SenatorBraun
@SenatorHassan
@SenBillCassidy
@SenTimKaine
@SenTimKaine
clarifying that anyone can get Long COVID. "US Senators get believed" (and everyone laughs) "I didn't have trouble getting believed by doctors...but with women, minority, and young people that's not the case."
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@AngelaMSWinCA
describes their symptoms: blood clots, severe reactions to meals – and the markers were dismissed by physicians. Angela knew that infection carried risk because of a friend with chronic illness.
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92
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/
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@zalaly
"Recovery rates from
#LongCovid
are low.
The only way to prevent Long Covid is to prevent Covid. We need effective intranasal vaccines and vaccines with durable immunity."
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93
@SenSanders
@zalaly
@lisamurkowski
@ProjectECHO
@SenatorBaldwin
"It's vital that we continue to research Long COVID."
"Describe concerns you may have with NIH RECOVER, and opportunities for oversight so the NIH can better respond to the needs of patients with Long COVID."
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