Protesters So Ill, They Couldn’t Get Arrested, NYT

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 ignored them. Maybe that was for the better, as we still got a lot of media coverage out of it.
 
"These activists wanted to follow the playbook that AIDS activists used years ago, escalating civil disobedience."

Ah well, we know what they should have done - throw a single coffee cup. This would then be told, and re-told; each re-telling building on the last, until legend would have it that a horde of protesters had set off multiple nuclear devices.... ;)
 
Trish said:
That is a really excellent article. The focus on PEM and the reporter taking the trouble to follow up and observe the impact on the demonstraters afterwards is so clear and vivid.
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Yes, usually articles will get one or two basic things wrong about ME and PEM. But she absolutely nailed it here. The only unclear thing was this sentence:
After the protest, she said, she crashed so hard that even her thinking was impaired — one of the most devastating elements of the illness
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This could read as "her PEM was so bad she couldn't think clearly, let alone do more complex cognitive tasks," but some people might read this and think only severe PEM causes cognitive impairment, when it's one of the most common and disabling aspects. (Personally, my cognition is one of the first things to go.)
 
RedFox said:
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 ignored them. Maybe that was for the better, as we still got a lot of media coverage out of it.
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Noting the symbolism of this was pretty good, how life returned to normal the second the protesters moved out of the way. Just like in real life, so quickly ignored it's as if we were never there at all.
 
Jaybee00 said:
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Yeah this is a common trope. There are differences with the US system but almost all the flaws people point out, aside from the insane costs and insurance companies, are all either just as present in public health systems, or made significantly worst by the lack of choice. The only saving grace of US healthcare is that you can shop for doctors. In some cases it makes up for the other flaws, if you can pay for it.

There is a lot of blame going on for how the US healthcare industry and governments aren't doing enough about LC, but truth is that in 99% of countries, nothing at all is happening, or even worse with making a pseudoscience approach official policy.

The flaws are in the medical profession. Aside from costs, the US system is better in almost every way. But the flaws, they're every-freaking-where, all the time. And the flaws ruining everything for us are definitely fundamental to the profession, mostly out of tradition. It's really a bug that medicine is so old, it carries baggage from before the scientific revolution and that also shows everywhere.
 
At this point I suspect the investment in Long Covid research from the USA in 1.1 billion is substantially more than the rest of the world combined and by some margin. As bad as their healthcare system is no other country has created a dedicated department in the government just for Long Covid, but Biden did in the Whitehouse. It wasn't a vote of confidence in the CDC and NIH to get it done and I think a lot of the RECOVER program is probably a waste of money but compared to the single digit millions of the UK which 2/3 of which went to Psychology its an immense investment. I get why they want a universal healthcare system, having your poorest just die from treatable medical conditions and the eye watering cost of healthcare in the USA is a dreadful system on average but the flaws of national healthcare are also a big problem when it comes to these conditions. No country is doing medical research better than the USA right now nor dealing with Long Covid better, the USA is likely the best place to be, its dominating on research and treatment and its because of these big investments.
 
Kathy Tran in comments said:
I am a physician. I have now been fully disabled from long Covid, with symptoms identical to ME, for five months. I am unable to see patients and am now chronically worried about my financial future, at age 40. Only now do I understand with post-exertional malaise is – whereas “toughing it out” is a universal prerequisite for becoming a physician, “toughing it out” simply does not work in long Covid/ME. I’ve tried. Even the simplest PT exercises leave me sore for days. The price of picking my kid up from school when my body says “no” is a 24-hour crash in bed. This experience has given me a very fresh take on all my previous patients with chronic disability. Given how little we know about this disease, physicians might ask, what more can they do to support patients like me? I’ll tell you – support their claims to disability. One of the worst aspects of this disease is being faced with sudden financial ruin. So MDs can stop simply calling patients like me crazy or depressed. (Yes, I have faced doubt even from colleagues.) Stop dispensing work notes for 1–2 days off for a chronic illness that does not yet have a cure. Have compassion and understanding. Perhaps disability systems will be strained, but maybe only then will lawmakers increase research funds and pay attention to the crisis at hand.
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