Thread https://twitter.com/user/status/1791480972334030946 #LongCOVID Community Organizing How you can take action for Thursday's Senate NIH funding hearing: Advocate stipends to come to DC GoFundMe to help advocates attend How to submit YOUR testimony to Congress! How to request Senators ask NIH about Long COVID at hearing
Moved post Live video today at 10:00 am. https://www.appropriations.senate.g...request-for-the-national-institutes-of-health Subcommittee Hearing A Review of the President’s Fiscal Year 2025 Budget Request for the National Institutes of Health
Last one https://twitter.com/user/status/1793669928144494911 Last part from NIH Director, for sight on answering Sen. Baldwin’s question on LC: “We are not where we want to be right now in terms of a rapid, nimble clinical trials enterprise that’s testing promising treatments very quickly - that is our focus right now, moving forward to do that.” (Further applause ensues) “The last thing I want to say about Long COVID & ME/CFS - we are so grateful for our partnership with the people that are affected by this. They have taught us over the last 2 years what we needed to do. Now we just need to deliver for them.”
The Hill: 'Long COVID advocates hammer Biden over ‘minimal funding’ in budget request' Excerpts: 'Long COVID advocates slammed the Biden administration over “minimal funding” for long COVID in its budget request for the National Institutes of Health (NIH) for fiscal year 2025.’ 'The Long COVID Campaign, in partnership with Long COVID Moonshot and Patient Led Research Collaborative, has called on Congressional leaders to appropriate at least $1.2 Billion in FY25 funding for Long COVID research, with other patient groups advocating for even higher levels of funding to meet the scale of need,” a Thursday press release reads.’ “Yet despite increasing impacts to the U.S. healthcare system, workforce and economy, the Biden Administration’s FY25 budget request for the NIH had minimal funding for Long COVID research, treatment or care,” the press release continues.” '“As Senate leaders debate $50 billion in NIH funding, we want to make sure the millions of now-disabled and chronically ill Americans still waiting for any Long COVID tests, [Food and Drug Administration] approved treatments or urgency aren’t forgotten,” Stone continued.’ The Hill has reached out to the White House and NIH.
Well, that's a lot of good talk. Let's hope we see some walking. Because damn if it doesn't come to pass, and years down the line some tiny private lab funded by patients ends up producing the breakthrough that ends the stalemate and this is all on record, again, showing how they know it's wrong and that nothing came of it, again. The US really remains exceptional in most regards. Very little of this kind of talk is happening anywhere else, nothing anywhere close. Everything I've seen makes me certain that there is no such thing as 'mass hysteria' as it's popularly, and medically, depicted. But a sort of mass psychosis or mass delusion really captures the continuing inability of the medical profession to end the denial and repair all the harm they did here. Still, it just keeps on going, "good prognosis" and all. Genuine mass delusion. What nonsense.
Axios: 'Appropriators warn of NIH funding challenges ahead' 'Baldwin also used the hearing to press the new NIH director, Monica Bertagnolli, appearing at her first budget hearing before the panel, about the agency's "slow" work on long COVID research.’ "NIH has moved slowly to enroll patients in clinical trials, and there [are] still zero FDA-approved treatments for long COVID," Baldwin said. 'Long COVID patient advocates arranged for patients to attend the hearing, and senators mentioning the need for long COVID research were repeatedly met with applause.’ "We fully admit we are not where we want to be in terms of a rapid, nimble clinical trials enterprise that's testing promising treatments very quickly," Bertagnolli responded. "That is our focus right now, moving forward to do that."
WMUR: 'New Hampshire patient among long COVID sufferers asking Congress for research funding' 'A group attended a hearing that sought more than a billion dollars for the NIH. Among those in the group of advocates was a patient from New Hampshire'
Wow.......oh wow. What a sea change! Billy Hanlon @bhanlon15 · 23 May “The last thing I want to say about Long COVID & ME/CFS - we are so grateful for our partnership with the people that are affected by this. They have taught us over the last 2 years what we needed to do. Now we just need to deliver for them.” I am just overwhelmed. "Partnership..they ( patients) have taught us over the last two years what we needed to do." Well we will see if they deliver but that is a huge acknowledgement.
WDAY Radio: “Biden administration pressured by COVID-19 researchers over lack of funding” “The Long COVID Campaign put out a press release Thursday calling on congressional leaders to set aside at least 1.2 Billion dollars for research.”
NIH funding plans for non covid ME/CFS https://www.healthrising.org/blog/2024/05/13/nih-chronic-fatigue-syndrome-whittemore/
Some of the advocates present at the hearing made it because someone organized travel and planning. This kind of thing is surprisingly important when it comes to advocacy, to make it clear that there is demand in the public for this. Bodies on the ground often matter more than most other efforts, although much of it is because the online chronic illness community is still rather disorganized. This is worth supporting, IMO: https://twitter.com/user/status/1794139684014092368
Inside Health Policy: 'Patient Advocates Tell Congress More NIH Long COVID Funding Needed’ 'Long COVID patient advocates plan to attend a Senate Appropriations Committee hearing Thursday (May 23) on the NIH budget to call for more funding of treatments and cures for patients with lingering symptoms following COVID-19 infection. The organizations Long COVID Campaign, Long COVID Moonshot and Patient Led Research Collaborative are asking Congress to appropriate at least $1.2 billion in fiscal 2025 for long COVID research at the National Institutes of Health. Senate health committee Chair Bernie Sanders (I-VT) has proposed…'
The Sick Times: 'Long Covid advocates call out Biden, ask for $1.2 billion of 2025 NIH budget' 'The disease received attention from numerous senators including Sen. Patty Murray and Sen. Susan Collins, as well as NIH director Dr. Monica Bertagnolli..' 'Despite this recognition at the hearing, the Biden administration’s current 2025 budget requests only “minimal” funding to support the millions of Americans with Long Covid, according to the Long Covid Campaign.' 'This ask for the 2025 budget is separate from Sen. Bernie Sanders’ Long Covid Moonshot bill which would allocate $1 billion a year, for 10 years.' '“We hope the NIH will take this opportunity to work with patients and Congress to course-correct RECOVER’s missteps, refocus its research portfolio on rapid deployment of diagnostic tests and interventional drug trials — and finally reverse the decades of neglect and lack of investment in associated diagnoses such as ME/CFS and Dysautonomia that now harm a new generation of Long Covid patients,” Stone said in a press release.'
NIH documents show how $1.6 billion long Covid initiative has failed so far to meet its goals More than three years ago, the National Institutes of Health launched a $1 billion-plus initiative to find the root causes and potential treatments for long Covid, the chronic disease that has quickly changed the lives of millions of Americans. But a lack of visible progress from the initiative, called RECOVER, has drawn months of criticism from patient advocates, researchers, and lawmakers, including at a Senate hearing last week on the NIH’s budget. “We gave [the NIH] a chance and they bungled it,” said John Bolecek, who has lived with long Covid for two years and has closely followed RECOVER. The program has done nothing “to narrow down what’s actually going wrong with people,” or identify treatments, he said. https://www.statnews.com/2024/05/31...-short-on-causes-treatments/?utm_campaign=rss
