1/18/2024 US Senate hearing on Long Covid of the HELP (Health, Labor, Education & Pensions) committee

This committee hearing is a pretty big deal and I was kind of waiting for someone to start a thread when it was announced so here we go.

Today was held a historic committee hearing on Long Covid, with some discussion of the commonality of chronic illness and its history as it relates to ME/CFS. The hearing was chaired by independent senator Bernie Sanders, and most of the committee members, thanks to many calls from the patient community, seem to have attended. The hearing was highly-attended, which is rare.

The US Senate is the upper chamber of the US Congress, and unlike most countries is the most powerful of the two chambers. The committee featured members from both parties (Democrat and Republican), and it's clear from senators who spoke that many have some degree of personal knowledge about Long Covid, either a loved one who suffers from it, themselves (senator Tim Kaine), from their own work as physicians (senator Cassidy) as well as two senators who retired in recent years because of LC.

This hearing was the culmination of weeks of advocacy from members of the community. Fantastic job making this happen. Many of the witnesses had deep knowledge of both Long Covid and the broader issue of chronic illness and ME/CFS.

https://www.help.senate.gov/hearing...advancing-research-and-improving-patient-care

 

For those still on twitter, there is a hashtag that was used to organize the hearing and has been used by many to share videos and excerpts of the hearing: #HELPLongCovid.

Tweet from the chairman of the HELP committee, Bernie Sanders:

https://twitter.com/user/status/1747997976864203247

 

Dr Ziyad Al-Aly has given a powerful opening testimony. Dr Al-Aly has been one of the leading researchers on not just Long Covid, but on the overlap with ME/CFS and other chronic illnesses. He did not mince words, and I immensely appreciate his passion, dedication and integrity. He has faced significant pushback from ideologues of the biopsychosocial model and other MDs. He has published several papers on LC.

https://twitter.com/user/status/1748050952915948010

 

As is usually the case, if you are still on twitter, just follow @Dakota15 and you won't miss anything: https://twitter.com/Dakota_150.

 

Absolutely excellent effort from the Long Covid Moonshot people. They managed to get 15 senators to attend the hearing, which required days of effort, and hundreds of phone calls.

I only saw small section of the hearing, but it was rather cathartic watching Bernie Sanders give his opening address. What a far cry from Simon Wessely and co exerting political influence. For the first time in the history of these illnesses, patients have the political upper hand, and ultimately the politics are all that matter - large scale biomedical research funding means the end of the BPS cabal and, fingers crossed, some treatments. Most optimistic I've felt in a long time.

 

@rvallee

Thanks for making the thread.

Don’t mean to nit-pick but just to clarify—actually the 2 chambers of the U.S. Congress (House and Senate) have equal power with some slightly different functions.

Some Senators can be perceived as having more power because they (2 senators) can represent huge populations like Texas or California.

 

Also just shocking how many "wins" there were today:

- The HELP hearing
- Science (impact factor of 47) published an important Long Covid study - https://www.science.org/doi/10.1126/science.adg7942 - that got plenty of media attention from e.g. the Financial Times
- Science published a perspective on immune damage in Long Covid: https://www.science.org/doi/10.1126/science.adn1077
- Nature published a literature review on Long Covid's cardiovascular effects: https://www.nature.com/articles/s44161-023-00414-8
- The Atlantic published a big Long Covid article: https://www.theatlantic.com/health/archive/2024/01/long-covid-dropping-risk-incidence/677183/

I realise this is an ME/CFS group (I lie somewhere between the two conditions) and there's a real danger of ME/CFS getting left behind, which would be a tragedy given how hard many pwME have fought for Long Covid patients. But it's abundantly clear that things are changing in the post-viral space.

 

I would be highly surprised if the wins for LC don't translate to ME/CFS. It may not be directly 1:1, similar to how there may be mechanistic differences with GWI. I've always maintained that research into LC is research into ME/CFS, by virtue of the fact that most (say 50-60%) pwLC qualify under the syndrome definition for ME/CFS.

Recently, Metabolomic and immune alterations in long COVID patients with chronic fatigue syndrome (2024, Frontiers in Immunology) —

 

Oh yeah there is no way. Not even that but most of the effective and good Long Covid advocates insist on calling what they suffer from ME/CFS (an example of which was the hearing today).

And anyways things can never be worse than they were pre-covid when it comes to ME/CFS research. Haha, what a shambles, would probably have died before I even found out what on earth we were suffering from. BLEAK.

Also not to gossip, but I know of a politician who has had bad post-covid symptoms for over a month now. Long Covid advocacy will only accelerate as people get covid 1-2 times every year and no one does anything to stop the spread.

 

this is amazing! how do we know what happens next though? What are the next steps?

I’ve been disappointed too many times with ME and im terrified of a “poop out”.

 

It felt as though it was the first time that on Capitol Hill myalgic encephalomyelitis had been said so many times in one hearing - and not just by PwME but by clinicians, researchers and even senators! (Please correct me if I am wrong.)

 

That seemed to be the US leadership operating as it should. More please. We also need Biden to follow up at the State of the Union address.

 

It's worth keeping in mind that this was a committee and not the entire Senate so what the impact on the whole Senate (and the House) will be remains to be seen....

 

Yes and note Senator Kaine's comments (I'm paraphrasing from memory) about structural health inequities affecting People of Color, women, minorities — and yet here they were, three white male senators, one in his 40s, one in his 60s and one in his 80s.

One of those was the now retired Jim Inhofe, Republican and infamous for the snowball in the Senate stupidity on global warming.

 

Granted, but I think Bernie Sanders more or less leads the progressive caucus and is a hugely popular figure in the US with two semi-successful presidential runs under his belt. He's not a PoC, but he has been fighting for civil rights, equality and more from the start of his career.

https://www.chicagotribune.com/hist...0230810-c7i5ddbbwbbrvp3kkm2hddlrl4-story.html

I don't want to make this about politics anymore than it has to be, but I just want to state that to me it seems absolutely huge that Bernie Sanders opened the meeting. He's the guy you want to go to bat for you on this I think.

 

I agree that those things could all be considered wins and these things happening is certainly better than them not happening, but those wins don't mean anything is changing, they might just be temporary effects that are irrelevant in the grand scheme of things. It's possible that things will change and advocacy groups should be reminded of all the victories they achieve, however I believe you will see a manifestation of change if long-term funding for biomedical research is established and there's research of a high quality. Thus far neither exist (and most countries are heavily reducing their research budget into LC for the next years).

I have zero doubt that fruitful LC research will be fruitful for ME/CFS and I don't see a danger of ME/CFS getting left behind, I just see the danger of both of them getting left behind due to a lack of fruitful research (I, for example, wouldn't consider any of the above studies as fruitful).

I certainly agree but one could probably also say that he's the type of guy you'd expect to fight for long-term health problems. If not him, who else? More of a necessary condition to have his support than a sufficient condition I would say. Extremely positive nonetheless.

 

Nitpicky but, uh, sorry for messing up the date in the title. Ugh, my eyes!

 

A bit critical article from WSWS with a summary of the testimonies, including a transcript from some of what Dr. Al-Aly (which was excellent!)

wsws: Long COVID specialist tells US Santa that "the best way to prevent long COVID is to prevent COVID in the first place!"

quote:
Rather than address the issues of which they are quite well informed, raised by the witnesses and expert panels, the committee members utilized the moment to simply shed crocodile tears at the decrepit state of the health system, or promote once more the unfounded lab-leak conspiracy for the cause of the current crisis, offering little more than platitudes and empty promises. However, each one of them is complicit in the crisis of the ongoing pandemic and is responsible for the deaths and misery of their constituents.

 

Sharing the recap from our local press.

Minneapolis Star Tribune: "Follow up, funding critical on long COVID"

"The entire Minnesota congressional delegation should advocate for long COVID funding and solutions. Those afflicted deserve empathy, proper care and treatment as soon as possible.”

"At the hearing and in a follow-up interview, Al-Aly pushed for a new center within the National Institutes of Health (NIH) that would focus on infection-associated chronic illnesses. This would include research not just on long COVID but also on other serious conditions such as myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS), Lyme disease and multiple sclerosis developing after infection with the Epstein-Barr virus.”