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

[rvallee]

IT people know that data you get out is only as good as what you put in. And whether it is in the interests of the person doing the 'inputting' to have it in there completely influences what people 'have'

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.

 

[bobbler]

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.

 

[Amw66]

I wonder if NHS records of NHS lab results showing EBV/ glandular fever could be used to do a longitudinal study of those patient records to see what the long term health outcomes have been. Has there ever been such a study?
I’m thinking similar to US army longitudinal study of EBV/MS with 10 million subjects. Surely the NHS patient records could top that number and hence give fantastic statistical power to the results.

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

 

[Hutan]

I like that the title of this paper includes the word 'Unexplained' - it feels like standing up to the proponents of MUS and saying 'yes, these post-acute infections syndromes are unexplained, and yes, they do represent a significant health care burden. So, how about we start doing some biomedical research and sort out what is going on?'

These PAISs are characterized by a set of core symptoms centering on exertion intolerance, disproportionate levels of fatigue, neurocognitive and sensory impairment, flu-like symptoms, unrefreshing sleep, myalgia/arthralgia, and a plethora of nonspecific symptoms that are often present but variably pronounced.

I thought this was a good description of the disease that I have. 'Disproportionate fatigue' is a great phrase, and I think 'flu-like symptoms' deserves to be near the top of the list, as it is.

Many PAISs have been called ‘fatigue syndromes,’ although this term is likely too reductionistic to encompass the complex clinical picture typically seen in such disorders.

Yes

Irritability, mood swings, and signs of depression, as well as a wide range of other nonspecific neurological and immunological symptoms (Box 2), are frequently present.

I'm not so keen on that. I think the evidence for the disease itself causing mood swings and depression is weak and problematic. I think the evidence has to be strong before labelling someone as irritable or moody, because a person with that label will have a much harder time standing up for themselves and effecting change. For example, if someone has become intolerant to noise, asking for quiet may be taken as irritability, or if a person desperately needs to lie down and is prevented from doing so, that may also be taken as irritability if others don't understand the urgency. If a person, with ME/CFS or not, is in pain, they may express irritation due to the difficulty of tolerating their situation. There isn't a lot of clinical merit in labelling the person as irritable though - what is needed is pain relief.

the diagnosis of ME/CFS. This disease is characterized by systemic exertion intolerance that manifests mainly as neurological and immunological symptoms and is accompanied by chronic fatigue that is not relieved by sleep or rest.

It would have been good to see the 'disproportionate fatigue' symptom used here rather than 'chronic fatigue that is not received by sleep or rest', because, as many of us have said before, at least some of the fatigue is relieved by sleep and rest. PEM usually resolves back to baseline following a period of rest.

 

[Kalliope]

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.

 

[Kalliope]

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:

 

[Cheshire]

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.

 

[Trish]

Some posts have been moved to:
Genetic studies of ME/CFS and other diseases including GWAS - discussion thread