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 your senators today!
win.newmode.net/longcovidcam...
This funding would benefit Long Covid, Dysautonomia, AND ME patients 🩵
Calls help the most but if you can’t call, please email:
win.newmode.net/longcovidcam...
📣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
If you're outside the U.S., please share this thread & tag community members/allies so that we get the farthest reach. EVERY CALL matters--regardless of which state someone is in! We need to let Congress know WE ARE STILL HERE and need to #FundLongCOVID in 2027. /end
Calls make the biggest impact...but if you require email, here is a tool that allows you to email✉️ your Senators with the same ask to your two Senators tinyurl.com/LongCOVIDEmail asking them to sign on to the Dear Colleague Letter and #FundLongCOVID in 2027 Appropriations. 7/x
The letter also directs NIH to focus on drug trials, biomarkers, diagnostics, & therapeutics AND to examine/target common LC-related conditions such as dysautonomia, #POTS, & #MEcfs in research that is funded. 6/x
@markey.senate.gov (D-MA), @kaine.senate.gov (D-VA),
@duckworth.senate.gov (D-IL) are championing this FY27 "Dear Colleague" letter calling for for $10 million to AHRQ #LongCOVID care Centers of Excellence and $200m to the NIH for LC research. 5/x
Asking your Senators to sign #FundLongCOVID "Dear Colleague" letter is one of most important ways to ask for care & research funding for FY27. While at the same time, we keep up calling for a multi-year authorizing #LongCOVID bill (ie The Ryan White CARE Act for HIV/AIDS) 4/x
As part of "Approps" process, Senators send each other "Dear Colleague" letters to sign on to, which then submitted to relevant Approps committees, asking for that funding & "report language" for the Approps bills that guides spending & accountability for next fiscal year. 3/x
Funding #LongCOVID is a multiple-front fight! As we continue to call for multiyear "authorizing legislation"—a big Long COVID bill—we also must work each year on "Appropriations" or annual funds the US govt spends. The Friday deadline is for Fiscal Year 2027 or "FY27" 2/x
Drawn image of the U.S. Capitol dome, with the words underneath: Long COVID patients have waited too long for TESTS, TRIALS & TREATMENTS. #FundLongCOVID
🚨📞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.👇
Urgent call to action urging the Senate to fund over $210 million for Long COVID and ME/CFS research by April 17 deadline.
1/
@SenMarkey, @SenTimKaine, and @SenDuckworth are championing a FY27 “Dear Colleague” letter for $210M+ in #LongCOVID research — and it includes #MECFS, #POTS, and #dysautonomia by name. Deadline is FRIDAY. 🧵
US friends ⬇️
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.
Please take a few minutes to contact your senators.
We need to #FundLongCOVID
#LongCovidKids
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
Drawn image of the U.S. Capitol dome, with the words underneath: Long COVID patients have waited too long for TESTS, TRIALS & TREATMENTS. #FundLongCOVID
📣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?🧵
"The Guide explains how each treatment may be helpful.. type of LC patient it may help, provides dosages.. study evidence, citations, and in a helpful twist, a list of other ME/CFS and #LongCovid guides which support using the treatment. All of that in a compact, attractive format."
From @cortjohnson.bsky.social:
“The free @rthm.bsky.social & @patientled.bsky.social #LongCovid Treatment Guide is one of those publications that makes you wonder, ‘Why hasn’t this been done before?’ A succinct, evidence-based guide drs can quickly turn to learn about LC treatments.”
Read @chloedecanson.bsky.social full thread for more. Note the paper is free to read (with registration) at the link: www.thelancet.com/journals/lan... 11/11 bsky.app/profile/chlo...
This patient-reviewer model can be applied beyond #LongCovid. Routine patient review could serve as a template for meaningful patient involvement across other infection-associated chronic conditions and beyond. 10/11
We recommend that when a manuscript has undergone patient review, that should be clearly designated in the printed paper and patient reviews should be open-access, published alongside the paper. This signals quality and amplifies patient expertise to the broader scientific community. 9/11
For this to be equitable, patient review must be accessible to people who are moderate to severely ill, reflect the diversity of the patient population, and be compensated, as @bmj.com has modeled. Pairing experienced and beginner patient reviewers can also help build capacity over time. 8/11
Anticipating patient scrutiny may incentivise patient-centered study design that is methodologically sound and relevant according to patient priorities.We hope this can drive meaningful collaboration throughout the process by seeking patient input early on in research prioritization and design. 7/11
We argue this will lead to improvements in research quality and knowledge transfer in the field. High-quality review prior to publication improves research outputs at the very end of the pipeline and helps train people working in the field. 6/11
In this paper we propose to make patient-researcher reviews routine for all #LongCovid manuscripts before publication. 5/11
We often discuss patient-engagement in research prioritization, design, and analyses but there are several ways in which patient-researchers can participate in the process of knowledge production. One of these ways is in the pre-publication review process. 4/11
Failing to engage with patients in the research process can lead to flawed research, like when fatigue is conflated with post-exertional malaise (PEM), two distinct disease features that must be differentiated. 3/11
There is much room for improvement in ways that institutional researchers can meaningfully integrate patient-researcher expertise. #LongCovid patients were the ones who defined the disease, shaped the science, and built the field–Continued improvement in patient engagement is a must. 2/11