RE: https://mastodon.social/@patientled/115651907446065113
So grateful to the community’s generosity in sustaining Patient-Led Research Collaborative’s pathbreaking work on Long Covid and related diseases like ME/CFS. It’s such a source of hope to me.
If you’re in a position to continue your support, your donations will be doubled through the end of the year!
Lisa McCorkell, an early #LongCovid patient who helped co-found the Patient-Led Research Collaborative and published influential work that - I checked - has some of the highest impact scores of all medical publications in the last 5 years, is leaving the PLRC. She did so much good work.
Lisa McCorkell, one of the founders of the Patient-Led Research Collaborative (or PLRC), recently stepped down after five years co-leading the organization. The Sick Times co-founder and managing editor Betsy Ladyzhets spoke with McCorkell in an exit interview. She reflected on her time collaborating on formative Long COVID studies, advocating for federal funding, developing new patient-led initiatives, and more.
My friend has been sick with long covid for two years and as a gen x-er she has not broken free from the 'doctor knows best' mindset. It's radicalizing to understand that not only will the medical system not help you, it will actively harm you (e.g. recommend exercise).
Realizing that only you can help yourself in this situation is very challenging for a lot of people. There is no rescue, there is no help except for the community & RARELY you might find a doc who gets it.
This special citation by the Pulitzer Prize committee is an insult.
To refuse to even mention that these are Palestinian media workers...and then to intentionally avoid distinguishing between those living and working in Gaza in extremely dangerous conditions and at risk of death at any moment...and everyone else covering the conflict remotely from North America or Europe, belittles the sacrifices of Palestinian journalists.
It's an attempt at sugarcoating Israel's direct role in their murders.
Utterly ridiculous from the Pulitzer Prize committee today.
This Pulitzer citation supposedly honoring 🇵🇸 journos doesn't actually do so.
"Journalists & media workers covering the war in Gaza" includes everyone, Palestinian or otherwise.
The citation fails to mention the nationality of the journalists who "died" (euphemism which downplays the worst recorded journo slaughter), or the identity of their killers, the Israeli army.
Please compare with the 2022 citation for 🇺🇦 journalists.
Huge thank you to everyone who’s shared and written—already more than 1300 messages sent and one more day to ask your Senators to add their names to a request for #LongCovid and related diseases like #MECFS and #POTS to be included in the FY25 budget!
If you have friends or family you could ask to send this 1-minute email too, that would also be a huge help!
https://actionnetwork.org/letters/long-covid-research-funding-in-the-fy25-budget
Over the next few weeks, the Senate and House will be holding hearings and drafting appropriations bills that will determine how money is spent in the next fiscal year. Congress needs to hear from us early and often to make sure that Long Covid research funding is included in the FY25 budget. We are asking our Senators to support a variety of funding streams for Long Covid research, including: - At least $1b in Long Covid research funding to the NIH Office of the Director - $200m to ARPA-H for “high risk, high reward” Long Covid research - $20m to fund the Office of Long Covid Research and Practice - $13.5m to the AHRQ to continue its dissemination of best practices in Long Covid care Can you join me and write a letter? Click here: https://actionnetwork.org/letters/long-covid-research-funding-in-the-fy25-budget
Big congrats to Jaime Seltzer, scientific director of @meactnet for being named to Time magazine's new Health 100 (which they oddly render as TIME100 Health), one of the 100 most influential people in American #health and #medicine. Well earned.
We are thrilled to share with you that Jaime Seltzer, #MEAction’s Scientific Director, has been selected for TIME100 Health 2024, TIME’s new annual list of 100 individuals who most influenced global health this year! This is a huge honor based on years of work fighting for equity for people with ME. We intimately know the … #MEAction’s Jaime Seltzer Selected for TIME100 Health 2024 Read More »
US folks who might be up for helping their friends with #LongCovid!
There’s an Appropriations letter requesting significant funding for LC research (and related diseases like #MECFS and #POTS). Huge opportunity—it’s a key step to getting a line in the FY25 budget. Would you shoot your Senators this email asking them to add their names?
Takes 1 min!
Thank you!! <3
https://actionnetwork.org/letters/long-covid-research-funding-in-the-fy25-budget
Over the next few weeks, the Senate and House will be holding hearings and drafting appropriations bills that will determine how money is spent in the next fiscal year. Congress needs to hear from us early and often to make sure that Long Covid research funding is included in the FY25 budget. We are asking our Senators to support a variety of funding streams for Long Covid research, including: - At least $1b in Long Covid research funding to the NIH Office of the Director - $200m to ARPA-H for “high risk, high reward” Long Covid research - $20m to fund the Office of Long Covid Research and Practice - $13.5m to the AHRQ to continue its dissemination of best practices in Long Covid care Can you join me and write a letter? Click here: https://actionnetwork.org/letters/long-covid-research-funding-in-the-fy25-budget
Brian Vastag
Zecharias Zelalem
The Continent