Risks for Developing ME/CFS in College Students Following Infectious Mononucleosis: A Prospective Cohort Study, 2020, Jason et al

Yes, I had glandular fever in my late teens and it takes a while to get over it. I also strongly suspect I had a few relapses over a good many years after.

 

Lenny says the behavioral symptoms and such refer to the physical symptoms--fatigue, muscle pain, etc--that are on the DePaul Symptom Questionnaire.

 

I don't understand that.

 

Yes, calling these behavioural symptoms just invites confusion.

 

I don't exactly either. but maybe the DSQ explains that terminology? I haven't looked at it closely.

 

When I google "dsq questionnaire" or "dsq-2 questionnaire" I see nothing re the questionnaire that shows anything of "behavio" in them at all. Though mentioned and referenced in places that include behaviour/etc on their site or in their name. Only done a brief look.

 

Sorry, I've not been able to read the paper. Can anybody who has advise if there is evidence given to support the decision to describe patients who met more than one criteria severe? Do those that Jason et al describe as severe match what we might consider to be severe patients?

 

Sounds like "behavioral symptoms" may be those that can not easily be objectively quantified (as opposed to, say, temperature), but rather rely on the patient's subjective descriptions and/or the doctor's observations. The patient reports fatigue and/or the doctor notes patient behavior that indicates fatigue.

 

Maybe behavioural symptoms means symptoms that occur in relation to activities, like "Mentally tired after the slightest effort" or "Physically drained or sick after mild activity".

 

Which is why "behavioral symptoms" is such a confusing and potentially misleading terminology.

 

yes, I should have added self-reported as part of it.

 

How does this compare to the study Broderick and Klimas(?) did.

I can remember Broderick in a presentation mentioning he was surprised how common it was ( from memory averaging equivalent of 2 kids per class ) , which spooked him as he had a small daughter.
Sorry, can't remember the study itself.

 

It was just about the number of criteria met, based on past studies having found patients who meet stricter criteria usually are more severe than patients who only meet Fukuda. They didn't describe how severe their severe group was.

Though you could go through the tables and check the results against other studies where severity is better described. E.g. SF-36 physical here at time point 3 was 44.18 for the S-ME/CFS group, 49.04 for the ME/CFS group, and 56.00 for the recovered group. I don't know how good or bad those scores are.

 

Could he have meant those symptoms associated with 'sickness behaviour', or rather, 'sickness response'?

 

Great, thanks.

Those scores are considerably higher than in this paper, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3123211/, that looked at UK patients from the general population, mean SF-36 physical 26.8, so Jason et al's "severe" doesn't seem that severe based on that comparison.

 

Yeah, the choice of the term "severe" here is unfortunate and creates unnecessary confusion. There's plenty enough confusion around what "severe" actually means as it is. No need to add to it.

It's perfectly sensible to separate a group which only meets Fukuda from a group which also meets stricter criteria (though Fukuda should ideally be further split into with and without PEM - sorry, I know I'm a broken record on this point) and compare them, as they did in this study. Very good idea in fact. But why not just call the groups something like f-ME/CFS (f for Fukuda) and mc-ME/CFS (mc for multiple criteria)?

If that's indeed the case - and my guess is you're correct - it's one more proof that the term 'sickness behaviour' should be retired to reduce confusion around meaning. Technically speaking it may well be correct; it seems to have originated as a term used to describe behaviours indicative of sickness in animals. However, in humans the term 'behaviour' is very strongly associated with actions under voluntary control whereas 'response' includes involuntary physiological responses, as well as voluntary ones.

 

Trial By Error: Psych Issues Do Not Predict ME/CFS, New Chicago Study Shows

 

I sometimes think it might be helpful to indicate that it was only recently that the Mayo clinic removed CBT and GET from their website, and that the UK fanatics might originally have obtained the basics, if not the particulars, of the treatment from the US. It seems rather divisive to pretend it was all the UK psychiatrists' idea.

 

One caveat: although there were few differences for behavioural and psychological measurements at time point 1 (before the EBV-infection) there were a lot of statistically significant differences at time point 2 (during EBV-infection).

Those who went on to meet ME/CFS case definitions had more anxiety, depression, dysfunctional coping, perceived stress etc. So I assume that proponents of the psychosomatic view on ME/CFS will argue that these findings support their theory.

 

That's a good point! But the counter to that is that participants who went on to meet ME/CFS definitions also had more physical symptoms at point 2, so it's not at all surprising that more severe symptoms during the acute mono phase would generate more anxiety, depression, stress, etc.