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There's detail on how the protest went that I haven't seen anywhere else. Embarrassingly, they couldn't even get the police to arrest them. Despite laying down in front of the White House, and blocking a couple streets, and telling a cop they were engaging in civil disobedience, the police just...

As I understand it, developing a biomarker is much harder than finding some chemical whose levels are different in healthy vs pwME. To publish a paper, you just need to show there's a statistically significant difference between healthy people and pwME. To develop a biomarker, you have to prove...

Umm...it's kind of okay-ish, but it says weird things here and there. Let's take balanced view, and analyze what's good and what's bad. The good: Recommends measuring lying vs standing HR/BP to test for OI/POTS (Pg. 8) Mentions PEM in the fatigue section: "Veteran may experience...

Are you kidding me?! Burnout?! People with burnout have PEM?! I'm autistic, and like many autistic people, I've experienced extreme burnout in the past. To the extent my functioning declined for weeks to months. The experience was totally different from ME. Notably, my physical functioning was...

I'm not sure how relevant this is, but my mom's cousin died from ANCA vasculitis this summer. For decades, it was assumed she had lupus. After she got Covid-19, her health went downhill rapidly. She had multiple hospitalizations and intubations due to pneumonia in rapid succession. Finally, the...

27.6 is among the highest hazard ratios I've ever seen in a scientific paper.

They're making many changes, most of which are not related to ME. But the changes related to ME and fatiguing conditions (mostly on page 6) are significant:

I think we're a bit caught up on use of the term relapsing/remitting. There's two possible interpretations of this phrase: The first is short-term variations in symptom severity driven by changes in the degree of PEM you're experiencing. The article appears to use it in this sense. Sometimes...

Provides more detail that what was announced in the media. A few things stick out. The study will only run for 12 weeks or ~3 mo. The main outcome measure is the Promis Fatigue scale. I haven't found a full version online, but a short version is available. Patients must meet the Fukuda criteria...

$36-51B per year, and just in the US. Or roughly $30-40k per person per year, mostly in lost wages. We can present this in multiple ways to get a better feel of the scale. It's 0.17% or roughly 1/600 of US GDP. If the average person with ME suffers for 40 years, that's $1.2-1.6 million per...

You're right that this study probably just states the obvious, but sometimes getting into a scientific paper is the hard part. Very good idea for future research. To what extent are carers swayed by BPS beliefs? I wonder if it depends on how long the person with ME was sick, or their social...

This was a survey of 999 people in California who got Covid. What they found: 46.3% had at least one symptom they believed was definitely or maybe caused by Covid. 34.7% missed work or school due to what they thought was long Covid 66.2% reported that their daily activities were affected 56.9%...

They have searched for them and found them in many conditions, including diabetes if my memory serves me right. Dr. Pretorius's research page highlights some of this. Thus, I'm pretty sure the clots are just a downstream effect, not a cause. It heavily discredits the psychosomatic theory but not...

It's a small study, but useful because it's novel. There's not a lot of data on how long Covid evolves over time from an objective, rather than a symptom-based angle.

That's a little strawmanny. Nobody really believes there's a cartesian split between mind/body illness, or that "mental processing of symptoms and emotional and psychological reaction to the illness and the limitations it confers" doesn't exist. We don't deny the mind-body connection. We believe...

I'm lacking spoons for a meaningful correction, but that definitely invalidates parts of my previous comment.

Are there any data on what percentage of people labeled as having MUS eventually get a medical diagnosis? I imagine my own journey with ME. For almost 4 years, I had no medical explanation for my symptoms. Them BAM! ME diagnosis.

That's starting to sound like they just sliced and diced the data until the found something.

I'm aware that we're far more likely to get someone who neglects ME, but one can hope. Also, yes, the UK is dealing with a lot, so I agree that ME isn't likely to come up for a while.

So, the patients here showed significant improvement, including in objective outcomes like school attendance. However, there was no control group, and we know that pediatric ME is more likely to improve than adult-onset ME. Also, their description of the treatment is incredibly vague. It's...