Patient-Reported Treatment Outcomes in ME/CFS and Long COVID, 2024, Eckey, Davis, Xiao+



“Had my immunologist appointment yesterday and honestly such a relief to talk with someone who sees Long COVID every day.We’re moving ahead with IVIG. They’ve got ~46 people on it and about 66% are responding.Really hoping I’m next and insurance covers. “
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EndME said:
As an example of such complications: In the unblinded Daratumumab study positive effects (which we don't even know to be drug response) were possibly only seen in a subpopulation with certain NK-cells (which we have no idea about whether it was even a genuine effect and it wouldn't pass and it wouldn't pass a correction for multiple comparisons) and perhaps more importantly responses were only seen after several weeks after the drug was administered according to a certain dosis and in patients who had received a diagnosis and had been sick for at least 2 years.

The observations from the unblinded trial are very limited but I think we can be somewhat certain that if you'd apply the big data Twitter approach to Daratumumab you'd get no useful observations whatsoever. Similarly you could take conditions with known effective treatments and get no effects with this big data Twitter approach because your population wasn't diagnosed accurately, the treatment wasn't adhered to long enough or given at the right dosage etc. Treatments can be discovered purely by luck and possibly that'll also be the case in ME/CFS but that doesn't mean that the above approach is helpful in doing so.
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The strength of the signal is the effect strength x number of stories.

Number of stories is driven by exposure (I have heard of this drug) x accessibility (I can get this drug). Dara scores low on accessibility (cost x ease of acquiring) so the number of stories will be very very low so we should see no anecdotes. And empirically, we see one, Abraham.
 
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I will also mention that the sheer number of grifters promoting supplements makes it very difficult to assess.

For example, if you go the CFS reddit, you will see majority of remission stories either promote a supplement or if you deep dive their comment history, they identified as ME/CFS but didn't have it. A common signal is they talk of exercising while having it.
 
ryanc97 said:
The strength of the signal is the effect strength x number of stories.

Number of stories is driven by exposure (I have heard of this drug) x accessibility (I can get this drug). Dara scores low on accessibility (cost x ease of acquiring) so the number of stories will be very very low so we should see no anecdotes. And empirically, we see one, Abraham.
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My example was to illustrate what would happen if you had the purely hypothetical situation when Dara was not prescribed as part of a pilot study but if instead you would have a comparable Twitter situations. Various people taking various drugs for various times at various dosages with one of those being Dara etc. My suggestion was that such data would not be good enough to allow for anything.
 
The problem with positive anecdotes is that there are so many false positives for a whole number of reasons. So they are very weak evidence, to the point that they are useless in most contexts.

Happy accidents can be catalysts for generating ideas that can be tested more rigorously, but due to most of the anecdotes being false positives it’s useful to have some kind of filters of e.g. considering the biological plausibility and looking for negative anecdotes.
 
Jaybee00 said:
My example was to illustrate what would happen if you had the purely hypothetical situation when Dara was not prescribed as part of a pilot study but if instead you would have a comparable Twitter situations. Various people taking various drugs for various times at various dosages with one of those being Dara etc. My suggestion was that such data would not be good enough to allow for anything
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As I mentioned, effect size comes into play as well.

If there really was a drug that worked and was accessible, stories would spread like wildfire and it would be impossible to ignore.
 
Jaybee00 said:


“Had my immunologist appointment yesterday and honestly such a relief to talk with someone who sees Long COVID every day.We’re moving ahead with IVIG. They’ve got ~46 people on it and about 66% are responding.Really hoping I’m next and insurance covers. “
1f91e.svg
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Bro is a VP guy why is he doing IVIG
 
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