NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal

[Dakota15]

Mods, feel free to move to most applicable:

MedPage Today: 'Monica Bertagnolli: U.S. 'Ready' for Next Pandemic Threat’

Faust: And in terms of long COVID, everyone always asks about this, there's a lot of funding. Where do you see this headed in the next few years?

Bertagnolli: It's a terrible, terrible condition. Post-infectious, chronic post-infectious syndromes have been around as long as there've been viruses in humans and it is a really, really terrible affliction when someone develops one of these conditions. COVID has introduced a whole new level of this in our society. The fundamental biology that's been conducted by the long COVID research team is really fascinating but also sobering. The agent can live for a long time in tissues. It can surround nerve cells, probably likely one of the ways that it produces some of its terrible symptoms such as the dysautonomia. And we have no effective way of eradicating it. Not yet.

We see evidence of persistent live virus in humans in various tissue reservoirs, including surrounding nerves, the brain, the GI [gastrointestinal] tract, to the lung.

Our emerging data shows that the virus can persist into tissues in the long term, and I think that's really critical because it does help us think about possible ways to combat it, one being better antivirals. I think there's a lot of focus on developing new antivirals as a possible way of preventing long COVID, and the other might be more aggressive treatment with antiviral therapy upon initial diagnosis.

 

[TinaYesen]

This is a nice thought, but it's going into "general research". If you're expecting a cure to come of this you're going to be extremely disappointed... after waiting another decade or two.

Instead, you may want to educate yourself on a currently-existing treatment, then get involved, and advocate for others to get involved. If you keep waiting for someone else to solve the problem, you're going to be waiting a very long time.

Agreed! Yes, I actually spoke to Senator Casey's office, Rep Wild's, and Rep Scanlon's office last week about not only establishing a coordinating mechanism at the NIH for infection-associated chronic conditions, but regarding Senator Sander's Long COVID "moonshot" proposal as well.

I serve as a LET member for Solve ME, and I work for the Department of Defense reviewing clinical trial grant applications for ME/CFS.

I agree to need to continue pushing legislation and advocating!

 

[Rufous McKinney]

I serve as a LET member for Solve ME, and I work for the Department of Defense reviewing clinical trial grant applications for ME/CFS.

thank you for doing all that!

 

[Dakota15]

The Hill: 'Sanders’ long COVID funding bill misses opportunity to aid a similar chronic condition'

By Maureen Hanson and Hillary Johnson

"We ask that Sanders specifically name ME/CFS in his bill and include a generous budget for ME/CFS research…”

"We think that’s a serious mistake since, by law, if ME/CFS is not directly specified by name in the bill, NIH will have a mandate to fund long COVID to the exclusion of ME/CFS, a viral illness that arrived decades before SARS-COV-2. Medical ethics and economic realities dictate that the millions of unwilling members of the ME/CFS community can’t be put on a shelf and abandoned for yet another decade."

"We appeal to Sanders to include in his bill substantial funding for what we must now call “ pre-pandemic ME/CFS” and specify a budget commensurate with this disease’s toll. Hundreds of millions more dollars are needed to restore health to the millions who are missing their previously productive lives. It’s long past time for Congress to address a major chronic illness that does not go away on its own, causes unspeakable suffering and threatens everyone.”

 

[Rufous McKinney]

is not directly specified by name in the bill, NIH will have a mandate to fund long COVID to the exclusion of ME/CFS,

It seems to ignore ME is to put on blindfolds and ear muffs and the first thing anyone in science does is look at EXISTING STUDIES and LITERATURE and develop strategies and hypotheses FROM there.

 

[consuegra]

Article by Hillary Johnson and Maureen Hanson

https://thehill.com/opinion/4615604...portunity-to-aid-a-similar-chronic-condition/

 

[SlamDancin]

That hill article hits different. It might be the best article I’ve ever read on ME. Really does a great job of conjoining the existing needs with the historical repression of ME research.