NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal

NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal


Before formally introducing the legislation, Sanders seeks input from patients and the medical community

WASHINGTON, April 9 – Sen. Bernie Sanders (I-Vt.), Chair of the Senate Health, Education, Labor, and Pensions (HELP) Committee, today released a draft legislative proposal to address the Long COVID crisis that is negatively impacting the health of some 22 million Americans.

Before formally introducing this legislation in the Senate, the HELP Committee wants to hear from the Long COVID community to get their views on how this proposal can be improved and strengthened to effectively deal with this public health emergency. The committee is particularly interested in hearing from Long COVID patients and their families, scientific researchers, and medical professionals.

The public input on the proposal will help inform the legislation that Chair Sanders introduces.

“In my view, the time is long overdue for Congress to treat Long COVID as the public health emergency that it is,” said Sanders. “Congress must act now to ensure a treatment is found for this terrible disease that affects millions of Americans and their families. Far too many patients with Long COVID have struggled to get their symptoms taken seriously. Far too many medical professionals have either dismissed or misdiagnosed their health problems. That has got to change. We cannot turn our backs on the millions of Americans who continue to suffer from Long COVID. I look forward to hearing from patients, experts, and researchers about what we must do to address this crisis.”

In January, the HELP Committee held a hearing on Long COVID that featured testimony from patients and the country’s leading Long COVID researchers to consider how the United States can advance treatments and improve the health of those living with the illness.

Read the full request for input, which includes additional details on the legislative proposal, here.

https://www.sanders.senate.gov/press-releases/news-chairman-bernie-sanders-releases-long-covid-moonshot-legislative-proposal/

 

I think this is worthy of its own news thread as this is a very significant legislative proposal by one of the leading US politicans.

 

@Andy and the committee - should S4ME be submitting a response? A huge stupidity of Long Covid research has been to behave as though ME/CFS doesn't exist. There could be some win-win potential here.

What do you think, @Jonathan Edwards? @Simon M?

 

If this passes, it would change *everything.* Sure, RECOVER has spent its funding badly, but that was somewhat to be expected given that they were approaching Long Covid as an entirely novel entity. The NIH is now well aware of much of the more interesting research that has happened outside of RECOVER. This kind of large-scale funding would mean a) the end of the BPS cabal, b) we'd start getting to grips with the underlying mechanisms and c) we'd get treatments.

This is the link to the current draft of the proposal. My only criticisms would be a) there's perhaps too much emphasis on interventional trials and not enough on purely biomedical/pathophysiology trials and, most importantly, b) there's no mention of ME/CFS

https://www.sanders.senate.gov/wp-content/uploads/4.9.2024-Factsheet_The-Long-COVID-Moonshot-Act.pdf

 

The Long COVID Moonshot group is very impressive, just to share.

 

But as things stand, those of us who live with ME that we did not acquire from COVID will be excluded by Congressional action from all research studies, demographic studies, clinical trials - whatever is funded by the Moonshot. We need a clear statement of inclusion.

Many of us did not acquire ME/CFS from an identifiable virus. I have no idea what triggered my illness in 1983. We need inclusive research that covers us all.

 

If this wasn't already stated, sharing now:

'The committee is accepting emailed feedback on the proposal at LongCovidComments@help.senate.gov through April 23.'

Feel free to send a message asking for ME/CFS inclusion etc, as I know many are.

 

I'm not sure if I'm misguided, but to me b) is less something to worry about. If this leads to something fruitful it ultimately has to include b) and if it doesn't lead to something fruitful then it also doesn't add much value to add b).

If such a proposal goes through and if they end up doing good work on the biomedical/pathophysiology side of things this automatically means that they will place a large focus on ME/CFS or phenotypes such as cognitive dysfunction which help untangle ME/CFS. In my eyes it will depend far more on how things will be run and by whom at the NIH. Will this be another Walitt disaster class or will they end up doing good work? The emphasis placed on interventional trials is worrisome. The problem with RECOVER wasn't the lack of interventional trials, but the lack of spending on good pathobiological studies on which treatment trials can later be built. If anything I'd like to see more funding on pathobiological studies rather than random guesses for treatment trials pretending like one has already understood a lot. I think the people running this have to realise this and have to come to terms with the reality that in the past 5 years essentially nothing has been learnt about LC that wasn't already known previously. If that doesn't happen, I struggle to see this thing being well-run.

I think the main focus has to be to ensure that if something like this goes through that good research based on a useful phenotypic LC definition is done, where focus is placed on those people with a large burden on their life, not some useless epidemiological research along the lines of "did you ever have any arbitrary symptom, perhaps a cough"?

 

Very much agreed that focusing on specific phenotypes - post-hospitalisation Long Covid, post-covid ME/CFS, post-covid POTS and so on - will be decisive in determining whether the investment is successful or not.

I personally wouldn't be too worried about the likes of Walitt. The thing about the BPS crowd is that their research is relatively cheap. The PACE trial was £5 million, the recent NIH study was $8 million, and most of that seemed to be on the Nath side of things. The Wes Ely NIH baricitinib trial will cost around $30 million, so I'd be surprised if a small proportion of the money didn't go to these figures, but it'd be near impossible to spend a billion a year on psycho-behavioural research and interventions (and Bernie has specifically stated that the funding is not to go to those areas).

Also, crucially, I'd imagine a lot of the money would go to external academics - one of the biggest problems in my view with the RECOVER initiative was that they spent virtually all the money internally, only $40 million went to outside pathobiology studies. To make that billion a year a success, the way I'd go about it is giving $600 million+ to external academics as part of a competitive grant process. And with that kind of funding, to be honest, I'd be shocked if we didn't get answers. It would certainly be messy, particularly at first, and there would be a fair amount of poor-quality research. But you'd also be ensuring that some very good academics would consistently get funding, which would establish post-viral illnesses as a legitimate and large field of study. You'd have a large crop of top academics who would be in dialogue over a long timespan, which is exactly what's been missing with ME research.

 

The lack of any mention of not just ME/CFS but other chronic illnesses, this has to include POTS/dysautonomia, IBS and other issues commonly resulting from infections, is a major disappointment but something that can be influenced. I have no doubt that many LC advocates are pushing for it and are simply meeting the usual resistance, including people telling that that it's bad idea, that it would make them less likely to get any support.

I'm sure many of them understand that if there is no explicit effort to figure out the "old" chronic illnesses, all efforts will go to great and ultimately pointless lengths to avoid anything having to do with it, and thus fail the entire effort. So it's in their interest just as much as it's in ours. Whether they understand it or not, we are tied at the neck. Whether we all sink or swim, we do it together. There are many who still reject any association, but their reason, they don't want to end up neglected like us, grows weaker by the day. They have already been neglected like we have, for 4 years now, and they can't possibly not see that this is what's locked up in place unless things change in a major way, until there are massive changes in attitudes and medical culture.

The strength of how it's written so far is a 10 year plan. One major blunder with RECOVER was how short it was, how it obviously had a timer after which there was likely to be nothing. This is enough time for someone to make a decision to do a PhD and know there will be something after they graduate. Maybe not indefinitely, maybe not an entire career, but it's enough to make it attractive as it'd be one of the rare opportunities to have major influence on an entire field, something that doesn't really happen anymore. There is at least one Nobel prize in this, and many opportunities to be in the early paragraphs of major textbooks, rather than a distant footnote in some appendix.

A longer duration would be even better, but that'd be more money. This has to follow the AIDS model, the only example of overcoming mass resistance, including in medicine, to solving a major health problem. It featured the patient community prominently, and it had an open-ended mandate: keep working at it until you solve it. If it's known that it will all sunset soon, it will be mostly bad researchers who struggle to find employment who will gravitate to it, along with the usual coterie of quacks and hangers-on in the biopsychosocial space.

 

Sanders Seeks Public Input for Long Covid Moonshot Legislation

https://www.commondreams.org/news/long-covid

The article is from Common Dreams NewsCenter. For those who don't know them (I'd never heard of them) they are a non-profit news source:
https://en.wikipedia.org/wiki/Common_Dreams

 

Here is what I submitted:

Thank you for your efforts to address the Long COVID crisis. The proposed Long COVID Moonshot legislation has the potential to impact millions of people living with this devastating illness.

Millions of additional patients could be helped by including in the legislation similar illnesses commonly triggered by infections such as Myalgic Encephalomyelitis (ME/CFS), a disease almost identical in symptoms to Long COVID.

Broadening the scope of the legislation gives the opportunity to better understand Long COVID and other infection-associated illnesses and ensures that solutions are sought for a patient population who has been in desperate need of effective medical treatments for decades.

 

I think the significance of the proposed bill for ME/CFS may be widely underestimated:

• Without direct involvement, ME/CFS patients risk being overlooked AGAIN if the bill is passed, potentially impacting institutional support for ME/CFS in the US significantly and maybe for decades to come.

• The risk of ME/CFS becoming overshadowed by LC is high, there is a real risk of ME/CFS becoming something like post-polio syndrome. The expectation that ME/CFS will benefit indirectly from LC funding lacks sufficient justification. This is true especially in an environment like the NIH, which is more or less an incubator for pharma. Pharma looks for actionable, drugable targets and the way things are currently going this targets will be VERY likely specific to the instigator/trigger of LC. For pharma and NIH it makes sense to recreate the HIV model. If you think that makes sense, then think about how many HIV treatments are not working on the virus itself. The answer is zero de facto. Even if you would think it's not going toward pathogen persistence, just expecting LC type ME to be the same as pre-pandemic ME is a bet at best. It needs a hedge!

• The funding allocated for LC is projected to be 100 times greater than the current funding for ME/CFS, highlighting a substantial disparity. If only 1% of this funding could be won for pre-pandemic ME patients that would be a huge win!

WHERE are US ME/CFS advocacies, once again, it's hard to grasp what they are doing.

 

@butter. do you think US advocacy groups aren’t trying..? Many of us pour everything we have in this space.

 

@Dakota15 , I'm sorry, I don't know which group you're affiliated with. Do you work with Jamie Selzter? Sorry, my memory is not good. But I'm thinking I want to try to contribute something to the national cause, more politically, while I may still be able.

When we were healthy, way back when, my wife and I were part of a Kennedy campaign. And no, not RFK Jr. Different generation. I could write ok back then.

 

I'm the Director for Minnesota ME/CFS Alliance & have volunteered with several of the national organizations since I got sick in 2017. Jaime is of course part of #MEAction, and that is one of the groups that I've been involved with, yes.

Feel free to DM me if you'd like to get involved in any specific way or have ideas.

 

Whatever 'you' are trying is seemingly insufficient. US advocacy is measured on outcome not on 'trying hard.'

There are many people being paid for what they are doing in US advocacy, they are not patients, and they receive a salary, and I paid for them with donations. It's irrelevant for me if they 'give their all.' Patients getting rekt is what matters - the output I see is not enough. I am an eager reader of financial reports of advocacies and keep wondering what all these people are doing.

 

I fear that resolution to the contested disease debacle must be political. That means, probably, something bipartisan. There really isn't much of bipartisan going around in the US these days. If there were, it likely wouldn't flow in our direction.

We may have to build a better mouse trap, but if so, all that signifies is the people who are already trying, and have been, may need to build a better mouse trap.

I haven't even been part of those efforts.

 

@butter.
This feels pretty personal when many of us are sacrificing every once of our health to try to move this forward.

 

If you equate what you are doing personally with what US advocacy is doing as a whole, that is your problem, not mine.

ME/CFS in comparison to LC, has at least 10X the amount of paid professionals on the floor, if you see no problem there - measured on outcomes - then I am not surprised about the state of affairs.

Thank you for your advocacy.

PS: I will refrain from replying to any of your further posts on the matter from here on. Thank you.

PPS: I have just been informed by a friend that advocacy and charity are not necessarily used interchangably in English, I was speaking of (paid for) charities. In any case, I am an advocate and severe ME sufferer for over 10 years myself, started advocating as a mild patient.