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Sarah Constantin's avatar

This smells like research by committee.

Different people, with different opinions about long COVID, came up with a compromise research plan that satisfied everyone.

But it isn't set up to help us crisply distinguish different hypotheses.

A single person, with a single paradigm & hypothesis, whatever it might be, would have come up with a cleaner study.

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Dan Elton's avatar

Yeah, that's exactly what I was thinking too. I'm still evaluating where all the money went.. but it appears that it was spread around very liberally. Similar to how COVID-19 funding went out the door fast and loose.

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Thomas Reilly's avatar

You really nailed the complexity of this condition!

One reservation I have about such widespread application of medical investigations in the absence of clearly characterised pathophysiology is the danger of over-diagnosis/incidental-findings and subsequent iatrogenic harm. I think this needs to be balanced against the potential benefits of each test.

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Dan Elton's avatar

Thanks Thomas!

To give a few examples (of iatrogenic harms):

For a while there were a lot of articles and stuff online recommending Benedryl for Long COVID, and many were claiming it helped them. It seems that has fallen out of favor now. Benedryl can cause iatrogenic harm by impairing cognitive function and drying out mucus membranes. Another example is curcumin+bioperine (black pepper extract). Black pepper extract can greatly change the absorption of other drugs, leading to iatrogenic side effects. Finally, a while ago I heard about some companies that were selling expensive autologous stem cell therapies for Long COVID. The FDA has warned that there are a lot of risks to stem cell therapy!

In my own case, when I had Long COVID I ended up taking mirtazapine to help with insomnia. It helped, but it caused occasional restless legs syndrome, and I suspect it also caused period limb movement that was effecting my sleep quality. I also was taking N-Acetyl Cysteine daily for over a year, and I now suspect it was exacerbating restless legs for me (although this side effect is not reported anywhere online, I stopped and started it several times and noticed a clear correlation).

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Dan Elton's avatar

Regarding your specific point about tests, your point is something I hear a lot from doctors.

The problem, as you surely know, is that if doctors see something suspicious on a test or medical image there is a lot of pressure for them to do a follow-up. Follow-ups are how the hospital makes more money, and perhaps more importantly, there are liability concerns. So incidental findings and risk factors are not treated rationally, unfortunately, and expensive, time-consuming, and sometimes risky follow-up tests/treatments/procedures are overprecribed.

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myst_05's avatar

> There is probably a good case for that, given the economic impacts of Long COVID

What are the impacts, if we use the honest approach of this classic paper on the economic effects of smoking (net-positive)? https://www.nejm.org/doi/full/10.1056/NEJM199710093371506

> Health care costs for smokers at a given age are as much as 40 percent higher than those for nonsmokers, but in a population in which no one smoked the costs would be 7 percent higher among men and 4 percent higher among women than the costs in the current mixed population of smokers and nonsmokers. If all smokers quit, health care costs would be lower at first, but after 15 years they would become higher than at present.

And that’s before we even get to the question of whether or not there’s programs with a higher net return for the economy. Ie I imagine “give people $10B worth of Ozempic” will have a 100x larger positive impact.

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