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

EndME said:
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).
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I think government usually changes through outside pressure, rarely from within. Wherever that government might be located.

The small wins, the advocacy, the new pieces coming out in media about infection-associated chronic illness all contribute to that.

Maybe the thing that's contributing most is congressmen around the globe being personally affected by having a sick person in their close family or becoming sick themselves. But imo politicians follow the stream and rarely dictate it.

*edited for readability*
 
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Solstice said:
I think government usually changes through outside pressure, rarely from within. Wherever that government might be located.

The small wins, the advocacy, the new pieces coming out in media about infection-associated chronic illness all contribute to that.

Maybe the thing that's contributing most is congressmen around the globe being personally affected by having a sick person in their close family or becoming sick themselves. But imo politicians follow the stream and rarely dictate it.

*edited for readability*
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I agree, which is why I argued that thus far I wouldn't call anything "change" yet.

Apart from politics the medical research community, doctors and healthcare sectors are also quite important, there seems to be very little progress there and the progress that exists, may just be temporary and can be reversed over time again by "PACE-like" narratives. Which is why the little things such as the Cochrane report for exercise etc all matter.

I wouldn't be suprised that if they still haven't found something too significant in LC research in the next 2 years, that the psychosomatic narrative takes over again.
 
Kalliope said:
6 minutes section on TV between Dr Al-Aly and Cuomo about Long Covid about the hearing. Dr Al-Aly is very clear about the importance of dealing with Long Covid as the aftermath of the pandemic. He also talks a bit about the tendency to psychologise illnesses we don't understand.
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Transcript:
Chris Cuomo: I started this Substack at thechriscuomoproject.substack.com because we need communities on Long Covid were people can trade information about symptoms and what they're doing and if anything is working. Nearly 20 million Americans may have this, and I say may because...we don't know.

We do know it's a massive problem. Clinicians all over the country, people are studying it in different institutes, governmental and non-governmental. 4 million Americans have reportedly stopped working because of long Covid. The disease can manifest itself in lots of weird ways, it's ever-expanding. Brain, brain fog, joints, processing, lungs, high-end lung capacity, static lung capacity. Here's what a scientist told a Senate hearing yesterday:

Dr. Ziyad Al-Aly: It affects the brain, it affects the heart, it affects the endocrine system, it affects the immune system, it affects the GI system. The burden of long Covid, if you measure it, is on par with the burden of cancer and heart disease. Now you should be asking me also, "How do we treat long Covid?" You've heard it before: There are zero. Zero approved medications for the treatment of long Covid, so these people have nothing to really lean on for curative treatment. Nothing. Zero.

Cuomo: That's Dr. Ziyad Al-Aly, director of the Clinical Epidemiology Disease Center at Washington University in St. Louis. And he is one of the emerging sources on long Covid. I'm not even gonna call him an expert because he would blanche at that because...they're still trying to figure it out! Doc, thank you so much for making time and for bearing witness at the hearing. I wish they had better questions for you, but clearly, they didn't know what you were talking about.

Dr. Ziyad Al-Aly: Well, thank you for having me. I'm actually delghted that we have the hearing. Delighted that, you know, Congress and the Senate is really interested in understanding long Covid and interested in thinking about ways of solving long Covid. And I think--I do hope that the testimony yesterday (our testimony and the whole hearing) will initiate a national conversation how we as a nation need to come together and develop a plan to really solve the puzzle of long Covid.

It's a complex problem and it's gonna require a lot of work, but I think we need to initiate that conversation and that conversation needs to be in the national space about how do we solve this problem? How do we come together as US people--government and scientists and everyone else--to solve the problem?

Cuomo: What do you think is missing?

Dr. Al-Aly: I think there is quite a bit of pandemic fatigue, I think everybody is sort of itching just to leave the pandemic behind. And that drive to move forward and leave the pandemic behind us. We're sort of forgetting that pandemics disable people, that pandemics have aftereffects, and we cannot really move on without dealing with the pandemic aftereffects, and that aftereffect, Chris (Chris: Right), is long Covid. So we don't really deal with an earthquake, we don't really deal with an earthquake without dealing with the aftermath of an earthquate. We can't go through a pandemic without dealing with the aftermath of the pandemic.

That after math, that lasting legacy of the pandemic is long Covid, and we must deal with it. We cannot bury our heads in the sand and ignore reality. I promise I understand the itch to move forward. I do understand the itch to put the pandemic behind us and move forward and forget all about it. But the reality is that there are millions of Americans ??? Covid ???...

Cuomo: Pick up your microphone...he's a good doctor, he's a lousy ???

Dr. Al-Aly: ...of Americans with long Covid. Millions of Americans with long Covid that are suffering from long Covid and we need to ???

Cuomo: So Doc, let's talk about that. Let's talk about it because that's one of the problems. It's not like after chickenpox where you're like, "Oh, see this scar here? You see? This is from my chickenpox." You know, this is the aftereffect. Some people don't believe this, some people think it's hypochondria, some people think it's malingering, some people think it's unrelated. We're nowhere with correlation vs. causation vs. exacerbation (you know, something that's just making it worse) and I was one of the lucky ones! Because I had all these clinicians all over me when I was sick before the vaccine. Half the people I talk to say it was the vaccine! The vaccine makes you sick. It's the vaccine that gave you long Covid. That's the problem. I was diagnosed with this before I took the vaccine. So, what are you seeing, how much of it are you seeing, and how severe is it?

Dr. Al-Aly: So, long Covid is really heterogeneous. If you've seen one patient with long Covid, you've seen one patient with long Covid. There are people with really mild illness, sort of a very subtle brain fog and fatigue, and we have people at the end of the spectrum who have severe debilitating fatigue, post-exertional malaise, brain fog that is so disabling they cannot literally get out of bed, they cannot work, they--it really changed their life dramatically.

So it's a spectrum of illness but I also want to say something that is very important: We psychologize illnesses that we don't fully understand. If you go back to the history books, you know, what did we do with seizure disorder? When people were seizing 200 years ago, oh, "These are possessed by demons" right? And then we discovered, "Oh, it's abnormal electrical activity in the brain! These people are sick, they're not possessed by demons." And then, with multiple sclerosis, what did we do with multiple sclerosis about 100 years ago? We said, "These people are crazy!" We put them in mental institutions until we invented MRIs 50 years later, and then we did MRIs on the brain of people with multiple sclerosis and went, "Oh, they have lesions in their brain!"

So we almost transfer our ignorance, we project our ignorance on these spaces, that we say, "The problem is you! It's not my ignorance, it's not that we don't really fully understand long Covid yet, no, it's your problem." So we tend to psychologize illnesses that we don't fully understand and that needs to stop. The solution for this is really better science to more fully understand why long Covid happens and how to best treat it--how to best prevent it and treat it.

Cuomo: And, it keeps being used, like you say. You say psychologized, I say politically weaponized. You know, it's an article of convenience to bash the vaccine, or bash the response, but the most powerful thing you said to those men and women in the hearing yesterday was zero approved treatments. So I wanna keep this conversation going. The show's gonna end in 10 seconds. But our relationship has just begun doc. I'm...
 
So it's a spectrum of illness but I also want to say something that is very important: We psychologize illnesses that we don't fully understand. If you go back to the history books, you know, what did we do with seizure disorder? When people were seizing 200 years ago, oh, "These are possessed by demons" right? And then we discovered, "Oh, it's abnormal electrical activity in the brain! These people are sick, they're not possessed by demons." And then, with multiple sclerosis, what did we do with multiple sclerosis about 100 years ago? We said, "These people are crazy!" We put them in mental institutions until we invented MRIs 50 years later, and then we did MRIs on the brain of people with multiple sclerosis and went, "Oh, they have lesions in their brain!"

So we almost transfer our ignorance, we project our ignorance on these spaces, that we say, "The problem is you! It's not my ignorance, it's not that we don't really fully understand long Covid yet, no, it's your problem." So we tend to psychologize illnesses that we don't fully understand and that needs to stop. The solution for this is really better science to more fully understand why long Covid happens and how to best treat it--how to best prevent it and treat it.
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I hope this is gonna be the takeaway message from this pandemic. We psychologize problems that we don't fully understand. It needs to be said often enough in public spaces that it comes ingrained with the general public. We psychologize problems we don't fully understand.
 
That was a really good report, particularly for the TV news format. I wonder just how many people in the various news teams know of someone affected, similar to Chris Cuomo or the senators describing themselves or their family members.

I do get the sense of a turning point with this new year. Perhaps the cracks in the BPS dam (to which it was always predisposed due to lack of foundations) have been precipitated by the pandemic and are now perpetually and inevitably advancing towards its structural failure.

Let's hope some of the recent high profile research articles are followed up with others soon, including — dare one hope? — maybe the NIH study in Nat Comms at the beginning of next month, with an associated media blitz???

Thanks for all these great posts @Dakota15 (both here and social media).
 
Hopefully it's a bit of self-contained drama that does no long-term damage, but might as well document it. Following the US senate hearing, and especially how it has featured the decades-long past failures to address chronic illness like ME/CFS, not as much as it should but still, a small group of rabble-rousers on social media has been sowing a lot of discord.

If you're not on twitter you are spared from most of it, but for the last few years there has been a small very vocal group that is staunchly opposed to anything about LC that doesn't make it a completely unique thing, especially being related in any way to ME/CFS, and this group has long been quite hostile and antagonistic in general.

Now where this relates to the US senate hearing is that some of the people who have worked on what they call the Long Covid moonshot who made the hearing happen have been especially targeted and harassed. During the hearing, some of those rabble rousers actually interrupted it to protest. You read that right, they protested a hearing on Long Covid.

As a result of this harassment, some are rethinking their advocacy. One of the people targeted by this group commented on twitter:
I have done more organizing than ever in my life. I went to DC. I talked to the senators. And instead of focusing on the success of that, and building on it, a subset of the community is calling me a murderer. It's vile and I want no part of it.
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I really hope this gets quickly forgotten about, but it has already had a negative effect on some prominent advocates, and is often a problem in some LC communities, raising the need for heavy moderation that in some cases, like the Body politic community, has caused them to stop their operation.

Some of them seem to go by the name LCAP, and this account is prominent in it:
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Edit: thread with a quick recap on this group
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rvallee said:
Hopefully it's a bit of self-contained drama that does no long-term damage, but might as well document it. Following the US senate hearing, and especially how it has featured the decades-long past failures to address chronic illness like ME/CFS, not as much as it should but still, a small group of rabble-rousers on social media has been sowing a lot of discord.

If you're not on twitter you are spared from most of it, but for the last few years there has been a small very vocal group that is staunchly opposed to anything about LC that doesn't make it a completely unique thing, especially being related in any way to ME/CFS, and this group has long been quite hostile and antagonistic in general.

Now where this relates to the US senate hearing is that some of the people who have worked on what they call the Long Covid moonshot who made the hearing happen have been especially targeted and harassed. During the hearing, some of those rabble rousers actually interrupted it to protest. You read that right, they protested a hearing on Long Covid.

As a result of this harassment, some are rethinking their advocacy. One of the people targeted by this group commented on twitter:

I really hope this gets quickly forgotten about, but it has already had a negative effect on some prominent advocates, and is often a problem in some LC communities, raising the need for heavy moderation that in some cases, like the Body politic community, has caused them to stop their operation.

Some of them seem to go by the name LCAP, and this account is prominent in it:
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Not liking what is happening, but thanks for the update (deleted my Twitter account some weeks ago)
 
SNT Gatchaman said:
I wonder just how many people in the various news teams know of someone affected, similar to Chris Cuomo or the senators describing themselves or their family members.
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I was wondering this last week when an MP stood up in the UK House of Commons to ask the PM a question about Alzheimer’s and made a point of saying that his father (I think) has just been diagnosed, to which he received a sympathetic reception from the chamber.

There are 650 MPs in the UK. How many (like Sajid Javid) have a close relative or friend with ME/CFS? Would be good to hear more of them talking about it.
 
Bernie Sanders: US is turning its back on long COVID. We'll pay the price if we don't act.
https://www.usatoday.com/story/opin...sts-plaguing-american-healthcare/72337750007/

People with long COVID-19 experience a variety of chronic symptoms, from extreme fatigue, trouble sleeping, migraines and “brain fog” to more severe cardiovascular and neurological challenges. These symptoms are not minor inconveniences. They are debilitating conditions that affect the ability of people to work, care for their families and live full lives.
...
What is deeply concerning to me is that long COVID-19 can affect anyone who has had the disease, from those who experienced mild symptoms to those who were severely ill. Furthermore, although you may not have long COVID-19 after your first infection, each reinfection can increase the risk of developing it. This escalating danger, particularly for those who have suffered repeated infections, poses a severe threat to public health that demands our immediate and focused attention.

Let’s be clear. The impact of long COVID-19 is not just a health issue. It’s an economic one as well. It’s estimated that as many as 4 million Americans are out of work due to long COVID-19. The annual cost of those lost wages alone is about $170 billion a year.
...
As the chairman of the Senate Committee on Health, Education, Labor and Pensions, I will be doing everything I can to address this crisis with the sense of urgency that it demands. We cannot turn our backs on the millions of Americans who continue to struggle with long COVID-19 − or the millions more who may contract it in the future. The time to act is now.​
 
This is a much broader issue about problems with the CDC and how they communicate with the public. But since it's related to the recent U.S. Senate HELP Committee hearing on Long COVID I am posting the link here. Feel free to move it somewhere else!

CDC hides replies referencing the Senate HELP Committee's Long COVID Hearing

The public health body is purposely suppressing information about the severity and frequency of Long COVID, as well as information about high-quality masks.

https://www.thegauntlet.news/p/cdc-hides-replies-referencing-the
The Gauntlet said:
On February 1, the CDC tweeted,

“Your next COVID-19 infection could be your worst, so don't gamble with your health. Vaccination reduces risks and severity and keeps you protected. Stay up to date with COVID-19 vaccines: https://bit.ly/3u3wsHF #COVID19.”
...
What happened next was less reassuring for advocates. Many COVID-informed doctors, researchers, patients, and allies began urging the CDC to go further; to relay information about Long COVID, and to encourage, not just vaccination, but stronger mitigation tools like high-quality masks and air filtration.

The CDC, paid for by our tax dollars and ostensibly charged with relaying public health information, began hiding the replies.
[ note - hiding replies is a feature provided by twitter ]

Hiding Dr. Javidan’s reply was particularly indefensible; it stated, “Notice how the Long Covid expert protects against Long Covid. ‘How do we prevent long covid? The best way is to prevent covid in the first place.’” Attached was an image of Dr. Ziyad Al-Aly, a prominent Long COVID researcher, testifying before the Senate HELP Committee in a tan KN-95 mask and extolling the importance of prevention.
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Tweet from CDC about COVID-19 sent on Feb 1.png

Tweet from Dr Javidan about Long Covid, reply to CDC.png
 
ahimsa said:
This is a much broader issue about problems with the CDC and how they communicate with the public. But since it's related to the recent U.S. Senate HELP Committee hearing on Long COVID I am posting the link here. Feel free to move it somewhere else!

CDC hides replies referencing the Senate HELP Committee's Long COVID Hearing

The public health body is purposely suppressing information about the severity and frequency of Long COVID, as well as information about high-quality masks.

https://www.thegauntlet.news/p/cdc-hides-replies-referencing-the


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GRRRR!!!!
 
My comment on the above article for the comments section.

“Solid/sensible article. Only quibble is that Zeynep didn’t explicitly call out that most “Long Covid” patients meet the diagnostic criteria for Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)—i.e., they have ME/CFS (although she has mentioned this fact in other articles). ME/CFS is agnostic with respect to the triggering cause.

Also clinical trials need to focus on serious treatments like cyclophosphamide (chemotherapeutic) infusions. Cyclophosphamide was found to be an effective treatment in clinical trials in Norway (Øystein Fluge was the PI). Some people have apparently been cured from cyclophosphamide. Also maybe CAR-T Cell Therapy or Daratumumab. Not so much low-dose naltrexone, which doesn’t make much of a difference for most people.

Also the Avi Nath led NIH comprehensive study of ME/CFS will be released on this Wednesday (under embargo now). Zeynep and NYT should cover the release of this study. “
 
For clarity, the notes should be sent to letters@nytimes.com . I've sent this:

To the editor:

As a patient suffering from ME/CFS I want to thank you for your recent coverage of Long Covid. I don't live in the US but in the Netherlands and your reporting has rippled through here. I've been sick with ME/CFS for 20 years and suffer symptoms that a lot of Long Covid patients suffer too. Unraveling Long Covid is probably going to be a big help to a lot of people suffering from infection associated diseases and so this matter touches me personally on several levels. From knowing people that feel the consequences of Long Covid every day to my own suffering from ME/CFS. Thanks once again,
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People can feel free to copy parts of it that they feel are useful.
 
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