News from the USA, United States of America

V.R.T. said:
It does say on wiki Checkpoint inhibitors effect/inhibit T Cells - is there some chance they could work in LC/ME by that mechnism?
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Well, we know that knocking down T cells isn't so bad (with AIDS things are more complicated). We also know that trials of treatments designed to zip up T cells have led to deaths of healthy volunteers (Northwick Park). Blocking checkpoints should zip T cells up. The only theories I can think of for ME/CFS that involve T cells would argue for cooling them down. The rationale for zipping up is killing cancer. I guess it might be killing virus infected cells but the likelihood of that being the problem looks slim to me.

I can't remember what the argument for this was either.
 
wingate said:
What is a “data project” in the context of journalism?
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Think maybe as an example looking through disability data pre-post pandemic and trying to find a story/estimate how much the burden of long covid is undercounted.

In general data journalism just kind of means using a lot of graphs/basing a story on data instead of using data to illustrate a story. So often this is the case in things like election analysis after the results have come in or election polling or financial markets etc.
 
Jonathan Edwards said:
Well, we know that knocking down T cells isn't so bad (with AIDS things are more complicated). We also know that trials of treatments designed to zip up T cells have led to deaths of healthy volunteers (Northwick Park). Blocking checkpoints should zip T cells up. The only theories I can think of for ME/CFS that involve T cells would argue for cooling them down. The rationale for zipping up is killing cancer. I guess it might be killing virus infected cells but the likelihood of that being the problem looks slim to me.

I can't remember what the argument for this was either.
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That's concerning.

I had a scan of Billy Hanlons Bluesky thread and Nath's rationale seems to be something vague about viral remnants. And something about B cells not maturing.
 
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www.foxnews.com

Misunderstood illness leaves millions exhausted, with most cases undiagnosed

What causes chronic fatigue syndrome? From viral infections to immune disorders, discover the triggers and symptoms behind this misunderstood illness.
www.foxnews.com www.foxnews.com

FoxNews(?!) has an OK(?!) article on ME/CFS.

AI Summary:
Misunderstood illness leaves millions exhausted, with most cases undiagnosed
Chronic fatigue syndrome affects 3.3 million people in US, with one in four confined to bed at some point

The article explains that chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a poorly understood condition affecting approximately 3.3 million people in the United States. Fatigue from many causes is common, but when severe exhaustion lasts for months, often after an infection, it may signal CFS. About one in four patients are confined to bed at some point, yet past research suggests only around 15% are correctly diagnosed.

CFS is defined by severe new-onset fatigue lasting at least six months that limits daily activities, worsening malaise after physical or mental exertion, and unrefreshing sleep. Patients may also experience brain fog or lightheadedness when standing. There are no definitive diagnostic tests, so doctors rely on patient history, examinations, and ruling out other conditions such as hypothyroidism or depression.

Experts describe CFS as an immune-related disorder, more common in women, with possible genetic links on the X chromosome. Triggers can include infections, chronic stress, nutritional deficiencies, hormone imbalances, sleep problems, trauma, pregnancy-related hormonal shifts, and sudden infections like COVID or mononucleosis. Treatment varies, focusing on symptom management through lifestyle changes, therapies, and medications, as no single therapy works for everyone.
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Dolphin said:
Los Angeles Times/Doctors and Scientists: Diagnostic challenge of CFS.
...
Long, sympathetic overview piece. No news.
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A pretty good attempt to explain ME/CFS. I like that they listed PEM as the very first item in the key facts.

And these intro paragraphs are pretty good, other than the reference to SEID as an "often referred to" name. SEID was proposed in 2015 amd then pretty much ignored. Does anyone still use SEID?
Los Angeles Times said:
Chronic Fatigue Syndrome (CFS) represents a profound physiological disruption that far exceeds the common understanding of tiredness. Often referred to clinically as myalgic encephalomyelitis (ME) or systemic exertion intolerance disease (SEID), the condition manifests as severe, debilitating fatigue persisting for more than six months.

The hallmark of this pathology is not merely exhaustion but a specific biological reaction known as post-exertional malaise (PEM). In this state, physical or cognitive exertion triggers a disproportionate crash in functionality.

The illness operates as a multi-system disorder. Patients experience many symptoms, including cognitive impairment, unrefreshing sleep, pain, and orthostatic intolerance, reflecting the broad and diverse range of issues associated with ME/CFS.
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There's also section on how graded exercise is a bad idea. And a section on the range of severity.

I'm sure I'm forgetting to mention a few things that I liked.

There were a few stumbles, e.g. -
Los Angeles Times said:
The bottom line is simple. Myalgic encephalomyelitis chronic fatigue is a beast. It changes everything. ...
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Any time "chronic fatigue" is used without the word syndrome there's a chance that people will confuse the generic symptom of fatigue with ME/CFS. At least it was included as a part of a longer phrase, so maybe that won't happen here.

That Fox News article (posted earlier in this thread) also had problems with the name -
Fox News said:
Formally known as myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS) is a chronic disease that causes fatigue so severe that it impairs the ability to perform daily activities.
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My experience in the USA is that very few doctors, let alone the general public, had heard of the name ME but that's not because it was the "formal" name for the illness. The name ME was very rarely used here in the USA until the compromise name of ME/CFS was proposed.

This is just my experience! Perhaps some folks in the USA did use it? But I only remember the name CFS, and sometimes CFIDS, whenever I talked about my illness with doctors or read about the illness in the news or read reports from advocacy groups.

Bottom line:

I'm not sure why the phrase "myalgic encephalomyelitis / chronic fatigue syndrome" - and the shorthand for it, ME/CFS - is so often bungled by various media outlets!
 
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ahimsa said:
Does anyone still use SEID?
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Nope but the google popup lists it as synonyms or at least used to so might explain why its included here.

The bottom line is simple. Myalgic encephalomyelitis chronic fatigue is a beast. It changes everything
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That sounds a little like the new chatgpt model ahah. (Not saying its what wrote it but the conclusion style phrasing reminds me).
 
Yann04 said:
Los Angeles Times said:
The bottom line is simple. Myalgic encephalomyelitis chronic fatigue is a beast. It changes everything
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That sounds a little like the new chatgpt model ahah. (Not saying its what wrote it but the conclusion style phrasing reminds me).
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Hmmm. The article used this term for ME/CFS in another section:
Los Angeles Times said:
Research suggests that encephalomyelitis chronic fatigue syndrome creates a wall. A brick wall.
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That kind of error does make it seem like this was partly created by an LLM or chatbot. I think a human writer would be more likely to make the same mistake when naming ME/CFS vs. using 4 different words from a 5 word phrase.
 
ahimsa said:
That kind of error does make it seem like this was partly created by an LLM or chatbot. I think a human writer would be more likely to make the same mistake when naming ME/CFS vs. using 4 different words from a 5 word phrase.
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That error is definitely human. A chatbot is better than humans at not missing words ahah.

But the phrasing might have been inspired or taken by an LLM. That short sentence “fake deep”. Conclusion style is very typical of LLM’s.
 
Yann04 said:
That error is definitely human.
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I didn't know that. I thought that the chatbot might see "myalgic encephalomyelitis chronic fatigue syndrome" as a 5 word phrase but not that all the words were always required. How common would this phrase be in the chatbot's training data? Especially when seen without a slash? I'm not used to seeing this phrase without a slash.

Anyway, the main point is not whether a chatbot was used. The problem is that the humans (author/editor) who produced this article should have done a better job of proofreading. And this is a fairly major publication (fifth largest US newspaper) not some tiny media outlet.

If they had read even one of the CDC pages for ME/CFS then they should have gotten the name right. I'm not a journalist, but that seems like the minimal thing to do if you're in the USA and writing an article about an illness.

I know this sounds grumpy, but after so many years I'm exasperated that journalists continue to get the name wrong.
 
"Medical Bills Can Be Vexing and Perplexing. Here’s This Year’s Best Advice for Patients."

kffhealthnews.org

Medical Bills Can Be Vexing and Perplexing. Here’s This Year’s Best Advice for Patients. - KFF Health News

As the crowdsourced investigative series from KFF Health News approaches its eighth anniversary, “Bill of the Month” offers its top takeaways of 2025 to help patients manage, decipher, and even fight their medical bills.
kffhealthnews.org kffhealthnews.org

Good advice for anyone in the USA who is dealing with medical bills.

It's sad that so many things in healthcare are getting worse - more expensive & fewer resources - instead of having politicians working toward making healthcare coverage better.

People who are on Medicare (folks who are 65 and older, or who have coverage due to disability) are generally in better shape with respect to healthcare costs. If you are disabled it's worth it to apply for social security disability, even if the monthly amount is very small, because it means you automatically qualify for Medicare coverage (after a two year delay).

For example, I wrote about a cardiac ablation procedure that I had last year. I'm on Medicare due to disability. My full cost for everything was a flat $250. And the out of pocket drug costs for Medicare patients are capped at $2000 per year. That's still a lot of money, I know, but it's a small fraction when it comes to certain expensive drugs.
 


"Dr. Koroshetz- head of NINDS/NIH - has always been respectful to me over the years. However, he never went to bat to address the absurdly low funding levels for ME/CFS. From that lens.. there is small chance that his replacement could be worse. Hopefully, it will be better."
 
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www.liberalcurrents.com

The Covid Pro-Infection Lobby and Its Relentless Campaign Against Public Health

As documented in Jonathan Howard’s “Everyone Else is Lying to You,” the same pro-infection lobby that battled each covid mitigation measure now seeks to blame health agencies and vaccines, not the virus, for the nation’s devastating rates of excess death.
www.liberalcurrents.com www.liberalcurrents.com

1100-word article.

AI Summary:
The Covid Pro-Infection Lobby and Its Relentless Campaign Against Public Health
An Associated Press investigation found that more than 420 state bills attacking public health protections such as vaccines, milk safety, and fluoride were introduced in the U.S. in 2025, with about 30 enacted.
The campaign included efforts to weaken agencies like the CDC through an organized, politically savvy push to embed conspiracy-driven agendas into law.
From early 2020, disinformation promoted removing mitigations to allow mass infection based on the idea of achieving lasting immunity.
Research documented on PubMed shows repeated SARS-CoV-2 reinfections are linked to immune dysfunction, lymphopenia, long covid, and multiorgan inflammation.
Jonathan Howard’s book Everyone Else Is Lying to You shows that the same lobby now blames health agencies and vaccines, rather than the virus, for excess deaths since 2020.

Disproportionate Damage
The U.S., with 4 percent of the world’s population, had 25 percent of global covid cases by mid-2020.
Howard documents opposition to standard public health measures such as testing, masking, ventilation, vaccination, and air filtration.
Claims included that lockdowns killed people, school closures harmed children, and hospitals were not overwhelmed.
For years, the campaign emphasized “Fear the vaccine, not the virus,” urging the public to stop living in fear.

A Coordinated Attack on Pandemic Interventions
Investigations confirmed a coordinated pro-infection campaign active during the Omicron surge and focused on dismantling remaining mitigations.
Despite more than 1.2 million U.S. deaths, contrarians claimed victory and gained influence through media platforms.
Howard warns that medical disinformation has damaged public health agencies and left the public exposed to repeated reinfection without evidence of lasting immunity.
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Well now that's out in the open, the project of the year

Chandelier said:
The Covid Pro-Infection Lobby and its Relentless Campaign Against Public Health : AI Summary:

Research documented on PubMed shows repeated SARS-CoV-2 reinfections are linked to immune dysfunction, lymphopenia, long covid, and multiorgan inflammation.
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I would like to know if this Is proven by conclusive research or still only indicated by preliminary research

Chandelier said:
public exposed to repeated reinfection without evidence of lasting immunity.
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I am sure that was the initial UK policy as reported in the news at the time, then silenced. but ... recurrent

Happily no-one is yet denying the excess deaths, as happens
 
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bicentennial said:
I would like to know if this Is proven by conclusive research or still only indicated by preliminary research
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That article - on highly organised infection - reports the chronic aftemath as specifically "confirmed" by thousands of research reports:

"Thousands of research papers on PubMed and other healthcare databases now confirm that repeat reinfection from SARS-CoV2, the virus causing covid, is commonly associated with lasting immune system dysfunction, lymphopenia (damage to T cells), long covid, and multiorgan inflammation."
 
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ahimsa said:
I didn't know that. I thought that the chatbot might see "myalgic encephalomyelitis chronic fatigue syndrome" as a 5 word phrase but not that all the words were always required. How common would this phrase be in the chatbot's training data? Especially when seen without a slash? I'm not used to seeing this phrase without a slash.
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(somewhat off topic)
But atleast very large language models like the newer OpenAI ones, are very good at repeating patterns. In fact they guess the next token (couple of letters / word) based on the previous one.
So something like myalgic encephalomyelitis/chronic fatigue [Next Token] the next token would almost certainly be “syndrome” (or more releastically “syn” ->“dr” -> “ome”) as that’s the pattern it’s seen hundreds of thousands of times in the training data.

The place where LLMs struggle more is logic. As learning logic out of pattern recognition on human text is well, less evident.
So you can get answers like. (this is extreme its usually more subtle)

“In 2019 A was the largest exporter of lithium.
Today A is the third largest exporter.
A’s improvment (?) in the rankings can be explained by …”
 
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