"I subsist on teaspoons of life”
#LongCovid essay by @jessielosch.bsky.social on @literaryhub.bsky.social with shout-outs to @patientled.bsky.social & #LongCovidMoonshot!
(also featuring one of my favorite public libraries in niu yor 💜)
A year after the senate hearing on #LongCovid it is frustrating the #LongCovidMoonshot has been lost in the congressional shuffle.
Thankful these panelists will try again to inform decision makers and keep our hope alive!
With America about to re-elect Hitler these Ethics Board statements of the “greater good” exemptions are going to get worse.
Yesterday #LongCOVIDMoonShot and all #LongCOVID research were wholly mothballed. We warned you in May of last year the re-election of Hitler would make matters worse. We despise being evidenced that our fearporn was right.
We seethe with anger, to have to say, we told you so.
x.com/RealCheckMar...
Having proof of #LongCovid’s damage will hopefully lead to treatment.
The study used a 7T MRI.
NIH: Due to costs and high-level requirements for maintenance, 7T MRI is available in only a few specialized centers in the world.
@sanders.senate.gov Don’t forget about #LongCovidMoonshot
We assume Dr. Topol is aspiring for favour with the incoming POTUS. We noticed he'd been collaborating quite a bit with Dr. Ziyad Al-Aly on #LongCOVID projects where he wasn't posting as much nonsense and Dr. Al-Aly is quiet of late. The incoming administration is likely to quash #LongCovidMoonShot
The list of what I miss from my old life is longggggggg.
The list of what I’ve put into recovering just fraction of my life is longgggggggggg.
With a new senate and the #LongCovidMoonshot far from final, keep sharing the affects of #LongCovid.
My story: www.sueponcin.com
a.co/d/iIOhl6b
From Sen. Sanders: "Let’s be clear. The impact of long COVID-19 is not just a health issue. It’s an economic one as well. It’s estimated that as many as 4 million Americans are out of work due to long COVID-19."
#LongCOVID #LongCOVIDMoonshot
#MECFS
tinyurl.com/36b2b8p3
When the Ryan White Act part that you advocated for is funding your/your buddies' orgs...
When you spend years crafting/giving feedback on/pushing "#LongCovid" legislation that you're going to $$$ from...
A grotesque abuse of #pwLC, ethics & duty
@SenSanders #LongCovidMoonshot
USA 2024 Budget = 6.9T
"Healthcare" spending is 26% of that at ~1.8T
~10% of Americans have #LongCovid, but @SenSanders @PatientLed @LCMoonshot's #LongCovidMoonshot $1B/yr for #pwLC + IACC is only 0.0001% of USA's budget?
That is NOT justifiable from ANY perspective
More facts that you'll never hear from anyone associated with or pushing the piddly $1B/yr for 10yrs #LongCovidMoonshot who is working to UNDERFUND YOU BY $420 BILLION DOLLARS OVER THE NEXT DECADE
https://x.com/AlbaDocherty/status/1827534504564809923
How @LisaAMcCorkell @PatientLed @MichaelPelusoMD @LCMoonshot ridiculously underfunded $1B/yr #LongCovidMoonshot compares to HIV funding after already having decades of research & ~50 Rx on the market →when #LongCovid has ZERO approved Rx & ZERO EAUs...
Dr Cutler's response to #LongCovidMoonshot $1B/yr, originally just for research (no legislation), was that #LongCovid RESEARCH ONLY needs to be AT LEAST $28B/yr
tft they have now added other illnesses + $1B of "services" to this, without adding a penny to cover the adds, is 🤯😡
The HEAL Legislation is NOT the same as Dr Cutler's response to the idiotic $1B/yr #LongCovidMoonshot: no less than $28B/yr for LC research "There's no amount that's overdoing it."
Hence #LongCovidAP's action to DECLARE LONG COVID A NATIONAL EMERGENCY...
Total US HIV budget 2022 = $43B, $35,833 PP w/HIV. HEAL legislation includes similar +services for #pwLC
HIV research-only budget 2024 = $3.8B, $3,194 PP. Dr Cutler's "no less than $28B/yr" #LongCovid research = ≥$1,400 PP w/LC
$1B/yr #LongCovidMoonshot = ≤$50 PP LC + IACC
'LCAP has proposed legislation that does much more [than #LongCovidMoonshot] to address Covid & Long Covid:
· Focus on antiviral Tx & biomarkers
• Focus on immediate clinical trials
· Focus on prevention & equity
· Focus on care'
Tell lawmakers here ↓
https://tinyurl.com/yuus3utk
April 9, 2024 Dear Long COVID Stakeholder: As Chairman of the Senate Health, Education, Labor, and Pensions (HELP) Committee, it is my strong belief that the crisis of Long COVID is a public health emergency that we can no longer ignore. As you know all too well, Long COVID is an infection-associated chronic condition where individuals experience chronic or relapsing symptoms after an acute COVID-19 infection. These symptoms can impact anyone who has previously been exposed to COVID-19, regardless of age or severity of the initial infection. In America today, about 22 million adults have Long COVID, though this is likely an underestimate. People with Long COVID experience a variety of symptoms from cognitive impairment and extreme fatigue, to life-threatening cardiovascular and neurological challenges. In January 2024, the HELP Committee held a hearing on the topic of Long COVID where experts underscored the urgent need to aggressively find approved treatments for this terrible …
Weitere Details zum Vorschlag von Bernie Sanders:
www.sanders.senate.gov/press-releas...
www.sanders.senate.gov/wp-content/u...
#LongCovidAwareness #MECFS #MECFSAwareness #COVID19 #SARSCoV2 #CovidIsNotOver #Coronavirus #LongCovidKids #LongCovidMoonshot
to all the mums with long covid/ME we see you we honour you we need a to get back our lives Hazy peach background with rainbow filaments Text in white left aligned
#longcovid is a womens matter
♀️The highest risk is for women in their mid 40's
♀️That's alot of mums
♀️Yet we are being ignored, dismissed and not getting the care and support we need
🌕🚀We deserve better
🌕🚀We need a #longcovidmoonshot
Worth bookmarking, in addition to downloading the "Get the facts" #LongCovidMoonshot fact sheet:
longcovidmoonshot.com
Dr. Ziyad Al-Aly is extraordinary. What a stunning, clear, moving, and fact-packed testimony before the U.S. Senate today.
#LongCovidAwareness #LongCovidMoonshot
www.help.senate.gov/hearings/add...
Please join in & tell Congress & the White House we need a #LongCovidMoonshot of at least $1 billion per year for the next ten years for biomedical research
Calling guides & holiday card templates available at LongCovidMoonshot.com
Long COVID research money is running out with no cure in sight. If you can spare a few minutes to contact your reps to ask them to push for more funding, those of us with Long COVID would appreciate it. #LongCovidMoonshot
You can find a guide here: longcovidmoonshot.com
Long Covid research funding is about to run out and there are still zero FDA-approved treatments. Following an article in Nature that called for a #LongCovidMoonshot, patients and allies are asking for Congressional support. If you have a few extra mins to add this to yr call list, I’d be grateful 🙏🏻
Colorful graphic of the moon that says “moonshot for Long Covid: Demand long Covid funding! 20 million Americans. Zero treatments. Call your reps November 14.”
Just called & emailed my reps asking for their support of a #LongCovidMoonshot 🚀🌝
Have you made your calls yet today?
Call guide here: longcovidmoonshot.com
A poster featuring a planet and a shooting star with the texts: "Moonshot for Long Covid" and "Calling Guide Nov 14th 3-5pm EST"
Happening now! #LongCovidMoonshot
More than 10 million Americans (and 1.4M Canadians) suffer from long covid, many of which are deeply debilitating.
Call your US representatives & demand NIH long covid research funding for the next 10 years!
longcovidmoonshot.com
I made my call today for
#LongCOVIDMoonshot. The phenomenal call guide with script and instructions made it easy. People with Long Covid & allies—please take a few minutes to support this patient-led advocacy for funding, research & treatment 🚀 longcovidmoonshot.com
Today is the day!!
Call and or email your reps in support of funding for Long Covid research and treatments!!
#LongCovid
#LongCovidMoonshot
#CovidIsNotOver
Calling guide and more info at the link.
longcovidmoonshot.com
Just called my reps—you should too. We need funding to find treatments.
#LongCovidMoonshot
longcovidmoonshot.con
I will be in meetings during the main call-in time for the #LongCOVIDMoonshot, so to make sure I got my statement in, I used ResistBot
You can do the same by texting SIGN PHGOAL to 50409
resist.bot/petitions/PH...
..the #LongCovidMoonshot has none of this
Nothing in writing to define it
Nothing in writing for legislators to pass or fund
Nothing in writing to guarantee anything you're being told to call for
#LongCovid deserve ACTUAL LEGISLATION that will guarantee biomedical research
#LongCovidMoonshot has NONE of this
it is 💯 ONLY a social media campaign
Cancer Moonshot's The Cures Act allocated $$$ to @NIH
& provided NIH w/critical tools
& implemented measures to fund to four highly innovative scientific initiatives.
It also implemented measures ↓
