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Colorado: 'Lt. Governor Dianne Primavera and National Jewish Health Host Long COVID Roundtable to Advance Care and Collaboration'

'Lt. Governor Dianne Primavera joined National Jewish Health today for a Long COVID Roundtable and clinic tour, bringing together leading researchers, health care providers, patients, and advocates from around the state to highlight progress and strengthen collaboration in treating and supporting people living with Long COVID. The event, held at the Molly Blank Conference Center on the National Jewish Health campus in Denver, featured patients sharing personal experiences alongside clinicians and researchers from across Colorado, including CU Anschutz, UCHealth, Children’s Hospital Colorado, and the Colorado School of Public Health.'

“Coloradans living with Long COVID deserve answers, care, and hope,” said Lt. Governor and Director of the Office of Saving People Money on Health Care, Dianne Primavera.
 
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As bad as I expect this RFK Jr roundtable to be, I can't really imagine that it could be worse than what we've been through the last 4 decades. It will be bullshit, just from a different angle, but the outcome is the same: failure.

Which is really saying a lot. They maximized their failure so hard that it's legally impossible to do any worse. Illegally? Easy. Legally? Nah.

I actually prefer when they are open about their complete indifference to help. It's the same outcome anyway. And here is just perfectly juxtaposes both, equal levels of failure, the reasons don't even matter.
 
Pulled out some excerpts so far of roundtable.

RFK: "We've already put $1.15 billion into NIH to solve Long COVID, and we've got literally nothing from it."

Makary: "We've spent $1.5 billion with essentially nothing to show for those dollars allocated...in the end people suffering with the condition are still suffering..."

Bhattacharya: "....we're going to find an answer...we have to acknowledge that we have not made as much as progress as the patients that we are representing, deserve...we have shifted how we are doing our investments into Long COVID research into more practical trials.."

Bhattacharya: "...we need to expand them (clinical trials)...it's going to be a collaboration, us listening to you...next time..a year from now..it won't be 20 million people suffering, it will be 20 million people with answers getting better..."

Vaughn: "Okay we see this phenomenon..but why? What's causing this? That's where the NIH comes in..."

Bhattacharya: "One of the things RECOVER-TLC...we had a formal listening session, we had submissions...we had 403 submissions on drugs....the point is, there's a lot to study...and the question for us, is how to prioritize...I don't want to wait. We have to be pragmatic."

Bhattacharya: "The 4 clinical trials we are doing in RECOVER-TLC is not enough...it's a good step forward, because we aren't waiting...we're still struggling to understand the full mechanisms..."

I know others putting notes together that will be more informative.
 
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Good to see that no one is pretending that the RECOVER initiative achieved much. And good to see this from Betsy's helpful thread:
First panelist is Hossein Estiri, a data scientist at Harvard (who was careful to disclaim his views are his own/don't represent his institution). He discussed the need for more specific definitions of Long COVID, including characterizing subtypes.
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But, there's a lot of people promoting unhelpful ideas. Bruce Patterson is there. Putrino with his CoRE resource.

As part of this Consortium initiative, RFK Jr. has commissioned the CDC to put together an online resource about Long COVID. A bit unclear what it will include; speakers have mentioned sharing clinicians treating the disease and repurposed drugs that people are trying.
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Roos from ARPA-H said the agency will soon take action on Long COVID. "In short order, after this forum, we can come up with a plan, work that through the secretary’s office, get that out..." in a timeframe of weeks, not months or years, he said.
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RFK Jr. concludes the event: "I want to thank this extraordinary pantheon of great researchers for being here... We want to work with you, I hope you will continue to communicate with us about what we should be doing better to make this cure come faster.
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Perhaps these people will stumble onto something useful, but, given the people they are listening to, it's not sounding terribly confidence inspiring.
 
The summary of the RFK Jr meeting by Betsy Ladyzhets seems a bit overly positive. I'm happy that there were some good moments.

But several others have mentioned problems, like claims that post-vaccination issues are more severe than post-infectious issues when it comes to COVID. At least once before RFK Jr has claimed that COVID vaccines have caused more deaths than COVID infections so this type of baseless comment is not that surprising.

I was not able to attend, have no idea what was actually said, just passing on what I had read.
 
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Bhattacharya: "....we're going to find an answer...we have to acknowledge that we have not made as much as progress as the patients that we are representing, deserve...we have shifted how we are doing our investments into Long COVID research into more practical trials.."
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AAAAAAAAAAAAAAAAAAAARGHHHHHHHHH!

No. NO! This is literally the wrong way to go about it. Bah, whatever. Fuck it, it was never going to achieve anything anyway.

About the only good thing is admitting the miserable failure. All of which was a choice, they were warned explicitly about it, and they did it all wrong anyway. If only it could shame some people.
 
ahimsa said:
The summary of the RFK Jr meeting by Betsy Ladyzhets seems a bit overly positive. I'm happy that there were some good moments.

But several others have mentioned problems, like claims that post-vaccination issues are more severe than post-infectious issues when it comes to COVID. At least once before RFK Jr has claimed that COVID vaccine has caused more deaths than COVID so this type of baseless comment is not that surprising.

I was not able to attend, have no idea what was actually said, just passing on what I had read.
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I don’t think she’s providing commentary, just repeating what was said. While others like Jamie were providing commentary and critique.
 
If I was from government and didn't know much about the state of research and I listened to those two sessions I would be really confused. I have people telling me the disease can be cured with stents, with Maraviroc, with rehab and anti inflammatories, auto immune drugs and peptides among others. I am being told we have reliable biomarkers that distinguish patients from Lyme, ME/CFS and mould toxicity and we have cured thousands of patients with this mix of therapies. The NIH is sat there not knowing what to do, neither does anyone else in government but if you just give all your money to these private clinicians they have the solutions.

I heard a lot of overconfidence and unevidenced claims of diagnostics and treatments and only a few of them seemed to pour proper cold water on their lack of biomarker and work towards one and their inability to really engage private drug companies without them.

That was a mess and I just can not see how that was helpful unless you already knew that some of those people were just selling snake oil in exchange for government gold. I saw no push back on any of these treatments and claims to have cured thousands of people. None of it was consistent. So in the end its just "dont know how to identify which patients, but only the "pure" long covid patients but give them right one of 400+ treatments". Not a single trial remotely says any of this works. They misrepresented the reality of the disease and what they know and can do and I found that appalling.
 
BrightCandle said:
I heard a lot of overconfidence and unevidenced claims of diagnostics and treatments and only a few of them seemed to pour proper cold water on their lack of biomarker and work towards one and their inability to really engage private drug companies without them
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The sad thing is this is the state of things in the field in general as well. It’s not as if the field was misrepresented.
 
Updates from the Sept. 19th ACIP (Advisory Committee on Immunization Practices) meeting. Fair warning, a lot of detail:

CDC advisory panel recommends keeping COVID-19 vaccine prescription-free

(if your browser has reader view this web page is easier to read)

The panel voted against recommending a prescription for COVID-19 vaccines - apparently this passed by only one vote.

And they reversed their decision on the MMRV vaccine.

Update: more coverage from Stat News:

Federal vaccine panel remade by RFK Jr. votes to maintain insurance coverage for Covid shots
 
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Some excerpts from the 2nd half of the HHS LC Roundtable (just getting to now):

Jason Roos, ARPA-H Director: "This is a problem we all have to tackle together...I'm here today to listen...how do we maximize the use of our resources? We are committed to moving the needle..."

Bhattacharya: "The need of patients that I heard from is just tremendous...it's the heart and soul of everything we're working at the NIH on this...there's a lot to learn from patients...we've spent $1.7 billion on this and we've been way too slow at evaluating (therapeutics)...for all the Long COVID patients out there, we're going to have an answer for you."

Sen. Young: "I wanted to assure you that members of Congress are engaged in a bipartisan way on this issue, are very interested in the development of therapeutics..."

Jim O'Neill, DHH Deputy Secretary: "I would like to add one symptom...alienation. So many are suffering, people around them don't believe them, don't take them seriously...I'm hoping it will provide validation..putting more facts on the table..."

Al-Aly: "These people need answers yesterday...it's not beyond us, it's not beyond the might of the U.S to solve this...people are hurting, they want treatment yesterday..we are in a race against time, we must make progress...we can and must solve this..."

Sen. Young: "Are there more ways to get pharmaceutical companies involved at the table to solve this problem? Perhaps a Pharma Roundtable at some point to bring stakeholders to the table and figure out collectively how we can accelerate US Long COVID Research through FDA reforms?"

RFK: "That is the question I asked - how do you bring in a public-private partnership? How do we incentivize private companies to get involved?"

Bhattacharya: "It really is a tragedy that we've spent so much money and time and not gotten those validated biomarkers. But I don't want to wait. I want those randomized trials happening now as fast as we can. We can't do hundreds, but we can do a lot...private-public collaborations....I think that's one way to accelerate things..."

Roos: "We've already begun this discussion, coordination with the Secretary's Office (on launching Long COVID work at ARPA-H)...we felt this forum was vital to helping inform that..I'm very confident in saying that in short order, after this forum, we can come up with a plan, work that through the Secretary's Office and get that out to the community to react to. We're talking weeks, not months, years. Speed is our middle name. Our job is to accelerate better health outcomes and we are very committed to doing this quickly. One key question for me, clearly money is required here. So, I don't want to dismiss that. But what are the barriers right now? Why can't we be sitting in this room next year and have that validated panel of biomarkers or have the mechanisms of action well-articulated, so we can move to the next step in the game? What are those things that are going to give us that exponential gain?"

Peluso: "I think this can be solved through resources....I'd like to see dedicated review panels that are experts in these conditions...I'd like to see an accelerated timeline for these grants in these agencies...18 months is not the speed we need to be going at..."

O'Neill: "This is a priority for this administration."
 
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