NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal

Solve M.E. has written a proposal which can be signed online, to add "and associated conditions" (which according to Solve M.E. includes chronic Lyme, fibromyalgia, mast cell activation syndrome, Ehlers-Danlos syndrome, POTS, GWI and myalgic encephalomyelitis/chronic fatigue syndrome) to the Long COVID Moonshot Proposal: https://mobilize4change.org/JVTdchh. This fits into their larger proposal to create an office at the NIH which is discussed here.

In my eyes one should be careful what one wishes for and the focus should be ensuring that if this proposal goes through the focus is on doing high quality research which automatically means one looks at different phenotypes such as ME/CFS, rather than anything else, but I think there's many members that would like to sign on to this proposal by Solve M.E..

 

From Bernie today, talks about 3 min on LC and Moonshot (two part video embedded below):

Mentions 3 things in particular:

1) HELP Hearing

2) Coordinated meeting with new NIH Director and her staff expressing dissatisfaction

3) New proposed Moonshot legislation

https://twitter.com/user/status/1778839765577535701

 

If I’m hearing correctly (since we know NIH representation wasn’t in attendance at the HELP Hearing) this is the first public acknowledgement of a separate & recently coordinated / behind-the-scenes meeting with the community (when he says “we brought in some of their critics”) and Sen. Sanders with the new NIH Director and her staff.

 

SolveME should have changed its name years ago, it's highly questionable what they are doing from an ME perspective, it has morphed into some "do it all, do nothing" kind of event. Imagine a charity calling itself SolveParkinson's that seemingly wants to solve all but Parkinson's, that's not solidarity, it's a bad strategy. Its new CEO according to their social media, was an important figure in getting the $1.5B funding at NIH, which is great if true, but how is that solving ME if it is not the same as LC?

It is impossible to know what they are doing with donations to some degree, if they are using donations by ME/CFS patients to work on LC, how is this justifiable? If they would communicate what they are doing in more detail, then people can make up their minds, the way it is doesn't allow for that.

I believe it could be that ME/CFS will profit from trickle-down effects, but it's impossible to know, and people with ME who have the position that it will help us without putting eggs in the "it will not help us basket," imo, overvalue what they think they know, and undervalue what they don't (actually can't) know.

 

https://virology.ws/2024/04/14/tria...ders-10-billion-long-covid-moonshot-proposal/

 

Yes, there are some behind-the-scenes discussions between Bernie, NIH, and NIH critics. He seems to be getting input from some smart people.

 

Do you have any other information on these/this meeting, @dave30th? I understand if unable to share too.

 

No just can confirm that it has happened

 

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.

 

Could be pointing towards something interesting in the approach of the NIH, but given that the next sentence of her's is "One thing that's important though that's come out of several meta-analyses is there is a way to prevent it. And the way to prevent it is vaccination, and multiple vaccination is better than single to prevent long COVID." I highly doubt she is saying anything of interest, rather then her still not having understood the inherent heterogeneity of Long Covid.

Of course vaccinations are extremely crucial to prevent severe acute infections especially in the vulnerable population (and as such prevent hospitalisations, organ damage, PICS, death etc), but I'm not aware that there is any data that they actually prevent the more syndromic type of LC that is more closely related to ME/CFS and predominatly effects younger people and females rather then elderly males with comorbidities (apart from perhaps preventing infection in general to some smaller degree). If such data exists it could tell us something rather interesting, but I don't think the NIH has even cared to look at this properly (the only study that exists to my knowledge is this one, but I haven't looked at it properly).

To me it that just makes it seem like they are still focused on lung issues/organ damage in the elderly population, rather than anything fruitful.

 

Important—comments due today one hour from now—6pm eastern time. Please submit—thanks!

 

Mods, feel free to move

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.”

 

Submitted


Dear Long COVID Stakeholder,


Thank you for taking the time to provide feedback on the Long COVID proposal. Your insights are deeply appreciated as we work to shape this legislation and take critical steps to address the Long COVID crisis.


We will carefully review all comments and suggestions to ensure that the bill addresses the unique challenges posed by Long COVID. Your input will inform the final legislation.


Thank you once again for your dedication to advancing Long COVID research and support.

 

Yes, but maybe MH not the ideal messenger here.

 

Perhaps I'm naive or not understanding of something, but why is Maureen Hanson not an ideal messenger in this op-ed? Wouldn't she have pretty solid credibility given scientific qualifications and background..?

 

She has published stuff stating she thinks LC with MECFS symptoms is distinct from MECFS, without a lot of evidence—search this forum.

 

This is great. Has #MEACtion made any noises about this at all? Pretty baffling that a charity, whose raisin d’etre was once obtaining missing $$$ for the #millionsmissing, has Suddenly gone quiet on wider ME research funding , at this crucial time and after they were active afaiu in the initial long covid moonshot drive.

 

Republicans blocking major sources of funding to “Cancer Moonshot” https://www.politico.com/news/2024/04/29/congress-is-killing-bidens-cancer-moonshot-00154718