Unexplained post-acute infection syndromes, 2021, Choutka, Iwasaki, Hornig et al

It's a legitimate pet peeve of mine as a programmer, frankly an affront on my expertise to have a system that literally both inputs garbage data while also filtering out useful data, it may be the lossiest information system I have ever seen, I would never agree to pretend it's reliable. Health records are filled with garbage data in a way that few databases are.

From an information science perspective, it's a complete disaster. Like applying JPEG compression 10x and somehow insisting it looks the exact same as the original. The delusion is strong here.

 

It seems the equivalent to if a Starbucks were to do research claiming that the names on its cups put into a database mean something (as a made up example "10% of our customers are called tall guy or Karen") about the customers rather than the staff.

 

Here glandular fever tests are positive or negative. Serology is not done. EBV is more common but CMV also causes glandular fever.

 

The Norwegian news site for research, forskning.no had a good article about the study with a couple of referrals to ME as well.

Vi vet altfor lite om langvarige plager etter infeksjoner, mener forskere
We know far too little about long-term ailments after infections, researchers says

quotes:
Although Choutka and colleagues believe we know far too little, there are studies that draw the contours of what researchers call post-acute infectious syndromes (PAIS).

It is striking, for example, that these syndromes have a number of common features.

Typical symptoms are fatigue, cognitive problems, flu-like symptoms, pain, sleep problems and intolerance to exertion.

This overlaps a lot with the symptoms in patients with ME, also called chronic fatigue syndrome, the researchers write.

...

There is a lot of work left here, the researchers write.

They call for more basic biomedical research, in addition to more studies to arrive at good diagnostic criteria and a larger overview of how many are actually affected by post-acute infectious syndromes.

A good start is probably to take hold of the work that has been done at ME, write Choutka and co.

The results from there may set the direction for future research and treatment.

 

Mady Hornig on Twitter about the article:

 

A comprehensive sum up of this paper has just been published in French, on le Vidal website.
Le Vidal is a review of all the medication used in France (indication, side effects etc...) and is a tool used by the vast majority of GPs.
Vidal article.

And here is a thread made by the author of the article, Stéphane Korsia-Meffre, a well respected scientific writer:

He explains that he's known ME activists for a long time, whom he met during the time he was an AIDS activist:

I can't believe that such an article is published in such a media. This is amazing.